How we used to die; how we die now

An emergency physician’s beautifully written and agonizingly empathic account of “how we used to die” starkly contrasted with how most people die now in our death-defying, death-dealing military industrial medicopharmaceuticalized culture.

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I know you love me — now let me die

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would in days gone past watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went. These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away. She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

You see, that’s how she used to die. We saw our elderly different then.

We could still look at her face and deep into her eyes and see the shadows of a soft, clean, vibrantly innocent child playing on a porch somewhere in the Midwest during the 1920s perhaps. A small rag doll dances and flays as she clutches it in her hand. She laughs with her barefoot brother, who is clad in overalls, as he chases her around the yard with a grasshopper on his finger. She screams and giggles. Her father watches from the porch in a wooden rocker, laughing while mom gently scolds her brother.

We could see her taking a ride for the first time in an automobile, a small pickup with wooden panels driven by a young man with wavy curls. He smiles gently at her while she sits staring at the road ahead; a fleeting wisp of a smile gives her away. Her hands are folded in her lap, clutching a small beaded purse.

We could see her standing in a small church. She is dressed in white cotton, holding hands with the young man, and saying, “I do.” Her mom watches with tearful eyes. Her dad has since passed. Her new husband lifts her across the threshold, holding her tight. He promises to love and care for her forever. Her life is enriched and happy.

We could see her cradling her infant, cooking breakfast, hanging sheets, loving her family, sending her husband off to war, and her child to school.

We could see her welcoming her husband back from battle with a hug that lasts the rest of his life. She buries him on a Saturday under an elm, next to her father. She marries off her child and spends her later years volunteering at church functions before her mind starts to fade and the years take their toll and God says:

“It’s time to come home.”

This is how we used to see her before we became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to “keep her safe.”

She can be fed a steady diet of Ensure through a tube directly into her stomach and she can be kept alive until her limbs contract and her skin thins so much that a simple bump into that bed rail can literally open her up until her exposed tendons are staring into the eyes of an eager medical student looking for a chance to sew. She can be kept alive until her bladder is chronically infected, until antibiotic resistant diarrhea flows and pools in her diaper so much that it erodes her buttocks. The fat padding around her tailbone and hips are consumed and ulcers open up exposing the underlying bone, which now becomes ripe for infection.

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had. We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I’ve been practicing emergency medicine for close to a quarter of a century now and I’ve cared for countless thousands of elderly patients. I, like many of my colleagues, have come to realize that while we are developing more and more ways to extend life, we have also provided water and nutrients to a forest of unrealistic expectations that have real-time consequences for those frail bodies that have been entrusted to us.

This transition to doing more and more did not just happen on a specific day in some month of some year. Our end-of-life psyche has slowly devolved and shifted and a few generations have passed since the onset of the Industrial Revolution of medicine. Now we are trapped. We have accumulated so many options, drugs, stents, tubes, FDA-approved snake oils and procedures that there is no way we can throw a blanket over all our elderly and come to a consensus as to what constitutes inappropriate and excessive care. We cannot separate out those things meant to simply prolong life from those meant to prolong quality life.

Nearly 50 percent of the elderly US population now die in nursing homes or hospitals. When they do finally pass, they are often surrounded by teams of us doctors and nurses, medical students, respiratory therapists and countless other health care providers pounding on their chests, breaking their ribs, burrowing large IV lines into burned-out veins and plunging tubes into swollen and bleeding airways. We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save. When it’s finally over and the last heart beat blips across the screen and we survey the clutter of bloody gloves, wrappers, masks and needles that now litter the room, you may catch a glimpse as we bow our heads in shame, fearful perhaps that someday we may have to stand in front of God as he looks down upon us and says, “what in the hell were you thinking?”

When it comes time for us to be called home, those of us in the know will pray that when we gaze down upon our last breath we will be grateful that our own doctors and families chose to do what they should instead of what they could and with that we will close our eyes to familiar sounds in a familiar room, a fleeting smile and a final soft squeeze of a familiar hand.

Dr. Louis M. Profeta is an emergency physician practicing in Indianapolis. He is the author of the critically acclaimed book, The Patient in Room Nine Says He’s God.

Feedback at louermd@att.net is welcomed.

About Ann Kreilkamp

PhD Philosophy, 1972. Rogue philosopher ever since.
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736 Responses to How we used to die; how we die now

  1. Thank you for this well written blog …as a person who works closely with the elderly I feel the same when it comes down to end of life care or should I say lack thereof?

  2. Deb says:

    As a healthcare worker, this is spot on. We can prolong life “indefinitely,” but is it really “living?” I want to pass into death in my own bed, with my family close by. Death with dignity very important, but helping families of the elderly see this is so very difficult. I pray my family knows my wishes and carries them out. I pray so can help my own parents be able to live out their life till God calls them home in the least invasive way possible, preferably in their own bed, at home, with familiar sounds, smells and family loving them. Thank you for this article.

    • I also work as a volunteer and worked several years as a deacon of a church. Over the years it has been hard to watch the changes in how we die. I would like to say looking at my own life. My dad died at 77 of lung cancer he was in a nursing home. My mom died at 79 from a stroke and was in a hospital and we spent a week with her. She could not move or speak but they assured us that she could hear and understand what we shared with her. So now that I am 75 the thought of my time to leave getting close one big thing is in my thoughts is I am not afraid to die in fact I look forward to it. The only thing that worries me is staying here too long. Our bodies and our minds wear out and go down hill. I don’t want to be here and be a Burdon to my family and I don’t want to be in a nursing home where most of the thoughts and procedures are all wrong. We have medical professionals for the most part making the decisions and they have sworn an oath to prolong life as long as possible. If you have signed a living will giving instructions about not feeding you but to give you pain medicine to help you not suffer then you help the process some. One big thing I see is the medical staff have orders to do certain treatments and the family going through this for the first time in many cases don’t know when to step up and say don’t do that. So it is not peaceful for anybody in the room.

      I am not writing this to say I have all the answers but rather to help raise the issue that there are problems that need to be studied and resolved. Every day there are so many times when this situation exists and there is no clear set of instructions for both the care provider and the family. The family are nervous to tell them don’t do that and the nursing home employ is leery of not doing all they can so there is not a lawsuit. And meantime the patient just wants to die and move on. By staying to long we loose the control to call the shots and that is not good.

      Am I talking about a right to die and let us call the shots of when enough is enough. you bet you. If I can figure out a good way to make it happen I will. For starters the two ladies that are on my living will have promised and understand that if they could not pull the plug and say let him go then they had no business agreeing to take it on for me. I have told them if I can not be returned to the same quality of life before this situation came about then to get me out of there (life) as quickly as possible.

      Thank you,
      Larry Clayton
      01-22-2016

      • Youngun says:

        The choice shouldn’t just be whether or not to cease treatment. Whether one has a wasting disease or is just racing the clock, no one should have to die in pain or at the end of weeks, months, or years of terrible suffering. If we desire that our elders (and eventually ourselves) spend their final moments in peace, we must make the tools available so that they can choose for themselves when those final moments occur. If we have a right to treatment, and a right to refuse treatment, why do we somehow not have the right to a treatment which expedites an inevitable process already in progress?
        For myself, having seen the end of the track approaching I would choose to speed up the train rather than simply going into neutral and hoping inertia will get me there without too many bumps along the way.

      • Carolyn says:

        Larry, your reply is exactly how I feel. While I don’t condone suicide it’s awful to think of a loved one laying in a bed being kept alive by medicine and machines. I have filled out an advanced directive form and have also told my family not to do anything to prolong my life. I want to thank both you and Dr. Louis M. Profeta for the informative letters..

        • Stephen M Cutting says:

          Advanced directives are great but we learned they do not have to be followed when one reaches that point that they no longer can communicate their wishes. My mother-in-law is an example. She wanted to have any organs necessary for others to be available upon her death. She talked about that and had it in writing and even signed in the presence of a notary. But – one daughter objected and the hospital had to honor that because the time necessary to object to the objection to honor the wishes of the deceased would take too long.

      • Lorraine says:

        I’m a nurse and I’m sorry to say that your understanding of how medical professionals function is incorrect. It is not our place, nor is it legal for us to do things that either the patient or POA doesn’t want. In truth, what often happens is that either the patient hasn’t made their wishes crystal clear or the POA is unsure what to do. I suggest everyone sit down and write out EXACTLY what you want done and what you don’t want done and then select a healthcare POA that will strictly adhere to your wishes. As long as things are done legally then healthcare workers are bound by these wishes. Patients and their healthcare POA are ALWAYS able to refuse any treatment offered.

      • Reina says:

        I agree with all you say and you say it very eloquently and from your heart. I have no intention of being in a hospital or a care home. I live in the rainforest of Costa Rica and the families here care for their own and they will care for me also. That is who they…They don’t have care homes or hospice or long term care so it is the family who ultimately has been by culture to care for those they love. I am lucky to be loved and have no doubt my passing days will be in my own home and bed. Many cultures are the same it is unfortunate that the Americans do not take responsibility or have respect for the elders. I speak of my own two sons and am saddened to say they will not be notified of my final days.. They have already abandoned me when I came to Costa Rica and that is something they will have to answer for in the great beyond. I choose quality life and my passing shall be of my choosing.

      • Ethel says:

        Thank you, Larry. Thank goodness my husband ( of 55 1/2 yrs) had discussed this many times and we both have living wills and have confirmed our wishes to our children about what we want done when it is time for us to go home to Jesus. This happened last Jan. 19, when we had to wish my husband a safe jounney to his permanent home. Drs. And everyone commented how we handled his last days according to his wishes. I can’t emphasize enough how important it is to make preparations and make your wishes known.

      • Renee frey says:

        Very well said we just lost my father in law Dec 12, 2015 and his wishes were the same as yours and even tho it was the hardest thing we have ever had to do we honored his wishes and let him go home. Thank you for your story it has reopened my eyes to things.

    • CQ says:

      Don’t pray your family knows – get a living will.

    • Michelle says:

      My mom had surgery because my sister was POA for colon cancer. Her incision started to leak needing a wound vac, putting a breathing tube and tons of antibiotics, and medicine inside her in ICU knowing she was going to half to have an ileostomy, which also I did not want then and before that she went sepsis again having to be opened again before that, which should have been caught when the incision broke. Afterwards in a rehab facility she went sepsis again and has an advanced directive stating that she not be kept alive with machines but my sister is POA. Since she is not the same. She spent over a month in the hospital, now in rehab, but her mind is nothing like it was. I am upset. I wanted to stop all of the keeping her alive and love my mom so very much but due to all this I really lost her in the long run. She is not the same person. She saw her parents waiting for her but my sister was to me selfish making her go through so much pain and four surgeries just to keep her alive and probably now spend the rest of her life in a nursing home with her mind so confused. Maybe I am wrong but I know in my heart all the discussions we had she did not want to be this way.

  3. Mel says:

    The question is, who will be there with them in their house? So many of us were raised to get out, be independent at the age of 18, so we did, and we are, and now, in order to maintain our lives we cannot be there and here at the same time. Many of the dying have become self-isolated. Some of us try to help, and end up questioning our choices and watching our own lives fall apart. It’s like volunteering to be the whipping boy or girl, not just for the dying parent, but for the people who love to stick their nose in after being out of touch for decades. There are lots of sides to this question, and I don’t know what the answer is.

    • Yes, lots of sides to this question, and maybe there is no one answer? I’m experimenting with a multigenerational living arrangement here, looking forward to the day when I shall die surrounded with love, whether my own family, or others who live in love with me. Or: I may choose to “die alone,” but in some kind of retreat setting for those who choose to consciously leave the body in this way. I’ve been dreaming of this kind of retreat center for years: small cabins, each for one person, but with meals, and care, and whatever else needed by those who live nearby. At 73, it is not too early to start thinking of how I want to consciously leave this planet, and it seems to me that our generation will be the one to show the way — out of sterile and/or dispirited nursing homes into communities of care.

      • Bessie says:

        I too have dreamed of creating some kind of retreat for dying, a place where the dying person can experience a holistic and loving passage from this world.

      • Laura Whisnant says:

        I also am 73,and have been thinking for some time of how I would like to leave. I have no life threatening diseases. However, I do have increasingly painful osteoarthritis, which, I’m told, will continue to worsen. I am taking a number of very strong narcotic pain relievers, but still have considerable pain. I’m not afraid of death, and the thought of existing with even more pain frightens me. My husband and I have signed living wills/healthcare powers of attorney. Our children all know our wishes, but what if I end up in a hospital anyway? I think the hospice program is allowing more people to stay at home at the end of life. I hope some of the ideas expressed in these comments come to fruition.

        • illum urn says:

          After 5 years of declining due to medication for her cancer my 83 year old mom came to live with us. Since there was no quality of life at all, we unanimously decided to quit the medication and to go for quality instead of quantity. My mom – and we all – had 6 more wonderful months at our house in our family. She died very peacefully surrounded by her family. Since she was to meet her husband, my dad, again, and since they had a wonderful inspiring relation, I designed the illum urn for them both. Everybody was so charmed by the philosophy behind the urn that we made it now available online …

      • Barb Roberts says:

        What do you do with a parent who is 5 or 6 years into a rapidly progressing Alzheimer’s Disease? One who has exhausted your patience, time, energy, (while you work two jobs) and can no longer afford the additional caregiver’s fee? What do you do when your husband is receiving life-saving treatments for a stage V cancer, while juggling the responsibilities of several business and mother-in-law?
        What does one do with the mother-in-law who doesn’t know who you are, doesn’t acknowledge her own son (her only child), doesn’t know who she is, where she is, and wanders out of the house? What to do with the one who accuses you of stealing her things, calls 911 for food, rearranges everything in the house and blames you for losing it? What do you do with someone who lashes out physically?
        Caregiver burnout is real and it’s dangerous to the health of the caregivers. Everyone has different circumstances and should not be judged.
        I love the thought of tending for an elderly loved one in the scenario that you describe, I did this for my own mother until I could no longer provide for her care, but for many of us, this just isn’t practical nor good for our health and mental well being either.
        At 73, we thought that my mother-in-law had just had a little trouble remembering things. Then these little things started to become bigger things. And now 5, almost 6 years later, it’s hard to for us to remember the wonderful, independent, woman she once was. End of life decisions are not easy to make. We’ve planned ahead with advance directives, so our children know what our wishes are. Sometimes I believe that we are not extending life, but prolonging death.
        When her time comes, we hope that she will still be living in the beautiful personal care home that she now resides in; the homelike setting, ’round the clock care and supervision, with compassionate caregivers and home cooked meals.
        As her disease progresses, and should she require hospice services, we will choose that. Hospice is welcomed where she lives. We would never choose CPR, or needless tests and treatments. What she deserves is a peaceful, painless passing, and hopefully, God willing, we will be at her side.

        • Laura says:

          Thank you for that…it is very challenging being a caregiver for long term…we have been responsible for mother in law for nearly 6 yrs. Total incontinence, immobility were too much for us to manage at home, and we need to also work and raise our teenagers. My mother in law did not want us to continue the full time responsibility of her care and is very content in the nursing care facility close to us. She is DNR/DNI and will not have any heroics. Hospice care can be involved where she is if she chooses.

        • Lois Newton says:

          Beautifully written. I am a RN, 73 y/o, who has seen a lot and have my own and my husbands Advance Directives, and our 2 sons are well aware of them and agree. When I can no longer have any quality of life, I prefer to be let go comfortably, rather than prolong my quantity of life. Quantity is nothing without quality and family need to think about that, rather than just thinking of how much they’ll miss them. Dignity in death should prevail.

      • Linda Martinez says:

        Ann this sounds like the best option yet that I’ve heard. How do we get this to become a reality? I have a very strong faith based life. I am not afraid to go home ????????. I by the grace and mercy of our Lord Jesus Christ am a healthy 63 year old. A living will is critical….for everyone regardless of your age.

    • Leif Tokerud says:

      Their family. Done this the right way twice now. The hardest, yet best thing you will do in your life; to help someone pass from this life with grace.

      • Carroll Sturgis says:

        Yes. I had that privilege. Very hard. Awesome. Humbling.

      • Debe Staten says:

        Barb Roberts–I totally understand your predicament. No answers, but sure wish there were some

      • Edie says:

        My mother recently died at the age of 90, alert, oriented, but had multiple health problems. Being a registered nurse for 39 years, I “fix” things. So, I help my 90 and 99 year old parents going. They lived in their own home together for 66 years. I drove 2 1/2 hours weekly to help with their immense medical appointments, housework, etc., and nearly went downhill very fast while still working part time. But, they are my parents, and I would not do it any other way. Nursing homes….NO. They both wanted to “live a little longer,” It was difficult to see my mother’s body become frail, bruised, pain, etc., but I did what a good daughter does, help her and try and “fix” the problems. So, one bright sunny Sunday morning, she arose at 4:00 am to use the bathroom and slipped back into her bed in her own home and Jesus called her home to Heaven at approximately 6:00 am…..my brother found her dead. I left earlier 4 days before her death back to my home.
        I wanted for me to be by her side, holding her hands and caressing her cheeks and telling her we would be OK and it was OK for her to go to Jesus, just like I always did, I was there and I took care of her and my Dad. But I feel I should have been…I always tried to do things right, but I felt I abandoned her. I should have been there. I must say, being a nurse, I hung on to keeping her alive as much as possible to try and keep her pain free and again, “fix” things. I knew every organ in both my parents’s bodies! I miss her everyday, and it is very very hard to “let a person go” when one loves them so much. It is so easy to read in all these articles, but when the time comes, we hang on and try to save a life and keep it going a bit more…..life is precious. So, now I take care of my father in my home at the age of 99…..is it hard, yes. Laundry, cooking, caring, etc., at my age of 63 is very very hard as well. But I keep things going….and “fix” things. What is the answer in all these articles, it is “personal decisions.” One has to live with those life-death decisions both for your own life and your loved ones. But who plays God and when is enough…..you hang on.
        Edie

        • Lois Newton says:

          You should be at peace remembering all you did for your mother. We aren’t God, but rather mere mortals and I’d say you were wonderful to your Mom. I am an RN also— 73 y/o and worked in a nursing home for 32 years.

    • Priscilla Blythe says:

      I understand this question very much. I’ve offered my services to my mother to have her come live with us when she can’t get on by herself, but that is because I’m a housewife. My kids are older, and I haven’t chosen to go back into the workforce; I can watch her and attend to her needs. When my sisters were told, they were relieved because they knew they couldn’t with their busy work schedules and lives, and I’m a minority. Even in the world of housewives they tend to only stay that way during the early years of their child’s lives then when they are in school those housewives go back into the workforce. It is a big problem with no simply answer. You can’t have a society where everyone is working and running here there and everywhere and then want them to be able to sit by making soup, but I know I don’t want to die in a nursing home. I want to die at home around my family, but we are almost made to be shamed if we put pressure on our children to look after us in old age. It’s a problem, and I don’t know the answer.

      • Mary says:

        Priscilla, You bring up very good points. This is a huge problem for working families. I am the youngest child, my mother was in her 30’s when I was born. She is 90 and still independent but woefully lonely. Living alone in a rural area she is no longer driving and is totally dependent to get to the store, hairdresser, etc.
        In turn I cannot leave the work force with a child just finishing college and going on to grad school. I am not old enough to retire, it is almost impossible for middle income families not to have two people in the work force to make ends meet.
        While I support these beautiful thoughts and would choose to die in this fashion, is it really feasible in our current societ? I firmly believe it is every individuals responsibility to prepare themselves for end of life issues and not expect our children to figure it for us when possible. Not to plan is to plan to fail.
        I did not have my child so I would have someone to care for me in my last days but rather that he may have abundant life. Would I love to hold his hand when I take my last breath……..yes! But to expect him to put his life on hold for my wishes is selfish of me.
        Then the other questions, what happens to the families of our children when we expect them to be with us?
        My words to my son is go and live as I did……………my memories of savory days will carry me to the other side.

    • Mona Hill says:

      Mel, I have this quandary. I raised my kids to be independent. They are strewn across the country. I am alone in my small home. At 62, I still have a good career and will be working as long as possible. My concerns are the same. My kids have their own lives elsewhere and we all love one another. But! if I were to suddenly be overtaken by a debilitating illness, I don’t know what the hell any of us would do?

  4. Bev Dunn says:

    People avoid death and its inevitibility, and feel its a long ways away to prepare for, lots of time, decisions should be discussed long before the near end, learning of Respite care and what is available. I was blessed to be able to help my husband choose home and family and we where able to reminise and chat and laugh and cry, the hugs where meaningful and the life ending was valuable and so we acknowledged Him. It was a treasure to be present for, not avoided at all costs.

    • Hi Bev,
      You make a good point and I agree with most of what you say. Here is a little different look at the situation. What about that loved one that will remain behind? The memory of the loved one departing while laying in that bed or in that room. I have a friend who along with a brother decided to live their lives together and not marry. This they did for most of their lives. There was several years between their ages. Every one took it for granted that the older one would depart first. Both had some problems with their health but did not seem that it was serious on either. Then the younger brother started downhill pretty quick. On the day of his death he slipped out the front door while the older brother worked in the back yard. He left a short note that he was going to walk along side a small river that ran through their property. When he did not return for several hours a search team was rounded up and they found him dead just off the property.

      Now you might ask why he would do that? He did not want to die in the house or even on the property so the brother left behind would not have the pain or guilt of not helping him. You talk about a true love.

      So is it good to be in that room or that bed? I don’t know. When I was growing up with my grandparents our house that was a little bigger than others in our family would have a bed set up in an extra room and distant family members would be moved in and stay till the corner would come and declare them deceased. Then they and that bed would disappear until the next time it was needed. That is the way it was back then.

      There are so many things we don’t know about the end. But from what I am reading we most agree we want them to depart in comfort and with dignity and hope the same thing for ourselves.
      Thank You
      Larry Clayton.
      01 23 2016.

  5. Ahda says:

    I am in the enviable circumstance of being financially able, supported by an extended family and physically strong enough to care for my elderly mother in our home in these, her remaining days. My husband is a physician, my mother’s physician visits her at home when needed, we have socialized health care. We built a home that can accommodate a wheelchair and has lots of windows to the outside world where she has her own space including a bathroom with a roll in shower. All of which we were able to do because we can afford it. So few people have all or any of these privileges. I appreciate that this author has brought this topic forward. I don’t have answers except to say that this time, along with the birth of my children and grandchildren, the times when mental health broke down for family members and the death of my unborn child – these are the “real” times and the rest is preparation for them. It is so instinctual to avoid these real times, to feel inadequate, to think we don’t have choices but I have found that nothing is more rewarding, more life enhancing than these real times.

    • Amber says:

      Oh yes how I can relate to what yoy express. I was with my mama in my childhood home when she passed away. My daddy could not bare to live in that home for many years that followed and he has since then downsized. I was with my grandmother in her daughter’s home when she died. We surrounded her bed and held her hand while she drew her last breath. And, I held my baby when she took her last breath too. I hope that one day, I can provide the care my father may one day need and I hope he will live his last moments in my home surrounded by his children and grandchildren if they are able to emotionally handle it. I’ve stared death in the face while three loved ones drew their last breath. Those are exactly the real moments of life.

  6. JD Everett says:

    On 1/6/16 my father passed away. After a month long run in the hospital trying to repair his body, I made the choice to unhook those machines and allow him to pass away without pain and with his family surrounding him. He was only 56. The choice to take him off of those life prolonging drugs was the most difficult one I’ve ever had to make. The doctors all looked at me and said “there is nothing more we can do”. My heart broke. Now they could have kept him hooked to those machines to allow his heart to beat, but they were honest with me. It has been 2 weeks since that day. I still feel broken and lost, but I trust that the choice I was given about my father’s life had resulted in the outcome he would have wanted. He was nothing but a shell of the man he once was. He looked nothing like himself, he could barely speak, and his own body was shutting down. I knew. My family knew. It was time to allow him that peace that his body was demanding. Sadly, we were unable to remove him from the hospital before he passed. I would have loved to have him safely at home for his last moments, but he would have never survived the trip. So I made the choice to allow him to pass in the hospital rather than in a car.
    At 34, I never imagined I would have to make that choice. Unlike so many of my friends, I had the conversation about end of life care with my parents. We have discussed their wishes, their hopes and what they truly want in those final hours. I was surprised to hear so many of my friends had never had these conversations with their loved ones. Death is hard to talk about, but I find that it made those last few days with my father a bit easier since I knew his wishes. I think that we need to talk more about those “what-ifs” rather than allowing them to be put off until we are left with those tubes, machines and pills working for us when our bodies no longer will. It would help so many other families that are in this situation every day if they had only just talked about what we want for our lives.
    As I signed the paperwork to have my father’s medical care ended, I tried to be strong for him. I wanted to give him the peaceful passing he deserved. No more pain. No more suffering. No more trying to tie him to a body that no longer worked. It did not make his passing any easier. I watched him take his final breath and I knew my heart would forever be changed. I still wish there would have been more I could have done to save him. I still wish I could hold his hand and talk to him. I was faced with that choice of holding on or letting go, and it was not an easy one to make.
    We need to talk more about our wishes for our death. We need to have conversations about those ‘what-ifs’. We need to understand that the most painful choices in life can be the most kind and caring in death.

    • Gayle63 says:

      Very well said, and I am so sorry for your loss. I also lost my dad young, and my mother just passed, and I have had this discussion with my kids, but it’s best to have it in writing as well, I think.

    • this is the most beautiful and caring comment on this post. Fortunately, my father’s death came quickly and I did not have to make choices or watch him whither away. Sometimes i am mad that I did not get a proper “good-bye” moment but would not want his passing to have happened any other way. You are a good child.

    • Sara Spoerri says:

      Thank you for sharing your story. I, too, lost a parent at 34. My father had his first severe heart attack when I was 9 years old. Amazingly, he lived for another 26 years. At the end he was in severe pain. He valued every day of his life; and, taught me the same. My mother was amazing in her ability to be there for him; and, their friends were very present, as well. When he had his final cardiac arrest, my mother called for help. When the paramedics came and were about to do their procedures, my mother stopped them. She asked them to “let the old man go” (he was 80). I was on my way to the house; and, so my mother was alone with him. She had the courage to let go knowing that he did not want any intrusive care. My brother and I thanked her from full hearts. We also offered her the same care when her time came (at the age of 88). Both of us are health care workers (my brother a doctor; and, me a nurse); and, we knew what we had to do. Now, my brother is 77 and I am shortly to turn 70. These thoughts are present; and, I’m so grateful that there are people who are willing to share. Thank you all.

    • Paula says:

      I lost my husband 14 years ago, thanks to hospice he was able to pass at home. We, the family were all there, and he went very peacefully. My Dad was allowed to pass at home, he had Alzheimer’s for 4 years and when it was time……….hospice stepped in. Now my Mom is 86 and she too will pass at home when her time comes…..again thanks to hospice. Her choice is no more hospitals or rehab., she just wants to join my Dad and do this in a peaceful place, her home.

    • Christine says:

      I watched my father pass away when I was 33, 2 years ago. It was the hardest thing I’ve ever done. Just wanted you to know that an Internet stranger is thinking about you and hoping you’re ok, or as ok as you can be.

    • Amber says:

      I was 27 when my mother passed away- I was there helping with her care in her home. She saved us the agonizing decision making by having it all in writing & we talked freely about death and her wishes. She battled poor health and was constantly hospitalized on and off for over 23 years and she was tired and weary in the last months. I am so thankful that she embraced the reality of death and to lesson the burden on her loved ones, she had all of her plans made known and in writing- right down to the songs she wanted sung at her services, who she wanted to pray, and what jewelry she requested to have on when we had her viewing. She was the constant planner anyway and her funeral would be no different. She died at only 55 years old. My mother in law who was in her 60s at the time, was appalled when we asked her if she had a living will or what her choices would be. She can’t have conversations about death. For me, it was a fact of my life always because my mother nearly died many times. I suppose experiences pave the way for decisions regarding those things. I am so thankful we could allow mama to die with dignity and honor her wishes in every way possible.

  7. Ali says:

    Everyone needs a living will. Predetermine what constitutes too much in your case or this very accurate representation of our current trend will be your reality.

    It’s as easy as a notarized statement stating “No invasive procedures if I’m in pain over 8/10 on a continuous basis or irreversibly incoherent”

    This can even be done as you enter the hospital.

    You don’t have to make us finish your loved ones lives with cracked ribs from us squeezing their hearts between their sternums and spines for sometimes 30+ minutes.

    Horrible way to go, just horrible.

    • My son is an ER Nurse and his wife was an ICU nurse, I have heard the terrible stories of Performing CPR on frail elders, hearing ribs crack, and horrible bruising only to have them survive a short time with more pain from the “Life Saving” experience. I believe, at times of crisis it is best to be sure you want life saving measures to be taken. Sometimes it is best to let a loved one pass with less involvement and stress to an already weak and tired body, than to try and prolong the peaceful passing. Death is not to be feared but embraced as our triumph over life!

  8. Debbie says:

    Wow that Dr. definitely knew and knows that prolonging a life of someone who was so vibrant is now to be in a better place with loved 1’s. We’ve lived our lives with ups and downs and have grown, loved, been saddened but that’s part of life. I have lost many in my family and seen a lot I wish I hadn’t. I’m in my early 60’s have a chronic disease and know and am fine knowing I won’t live to a ripe old age and certainly don’t want to be kept alive cuz that’s what family wants or the medical field can do. No thank you…let us go when the time comes…we’ve lived we’ve loved and now we want to rest.

  9. LauRose says:

    Thank you so much for writing this. Our eld er said she only wanted paliative care. No major interventions. We did that. Sometimes that felt wrong. Mostly not. Your piece clarified why our decisions were good. Thank you.

  10. Charlotte Taylor says:

    Advanced directives are for the purpose of putting YOUR wishes down so that others can follow them when you can’t. If patients had these and told their family what they want it would help. Education regarding end of life issues would help people understand and perhaps accept it rather than fear and doing everything.

  11. lorraine klimenko says:

    we are kind to our beloved animals, why not same for humans. I have been through this and I was lucky to have wonderful support hospital team. I wanted to release my mum from her suffering after I asked her if that’s what she wanted. she shook her head yes. my brother would not agree and he was put as next of kin. I begged him to release her but he insisted she would get better and go home with him. it was not until we all convinced him she was suffering that he told her she could go. she was gone within the hour. a month of unbearable suffering for nothing.

  12. Mary Yager says:

    I just said goodbye to my Hospice patient…he died in his living room, by the window. His family took such good care of him and the Hospice nurses were the best ever. What a blessing!

  13. Abused elderly says:

    Who will sign off the state execution of a depressed teenager, female foetus, chemo patient, rich old uncle, schizophrenic amputee,
    or indeed anyone who is feeling the pendulum has swung against them….? You????

  14. E. Stubleski says:

    Watched as my father passed this way :(comfortably, in the home where he was born, in the care of family) as was his wish. Am now in the care of my mother-in-law who desires the same. Will do all in my power to see that her wish is fulfilled as well. She is 96. Dad was 6 weeks short of 99. I am honored by them both and would be even more so should I follow in their way.

  15. Gertrud says:

    One huge problem is that death is still a Tabu and therefore not discussed. So an elderly person doesn’t have an advance directive and a DNR, and so the senseless “rescuing” begins. The other problem is that doctors still don’t propose Hospice as an option. Rather, they will list out all sorts of treatments, even when these treatments do nothing to improve the quality of life. This happened to my father in law and brother in law when each of them was diagnosed with end-stage cancer. Rather than informing them of hospice as an option, we had to ask about it. Thank God we knew about it!

    I think a lot would change if doctors were willing to accept that death is part of life and that it is ok to let a patient go. It would also help if primary care physicians discussed end of life choices with their patients, while the patient can still make his or her own decisions.

    • Dorothy Hailey says:

      I have lost both a sister and brother in law to cancer. Both were to young but doctor did give them the decision of home care with hospice. Both passed at home with family around them, it was hard to let them go but peaceful at the same time. Hospice provides so much help that home care is possible, granted you still need family support.

  16. Mel says:

    Another angle on this question is that it is taboo to bring up someone’s mortality before they do, so, usually it isn’t discussed ahead of time. in my case, I had to guess what was the best response. I went to help and it broke my life for 6 years. A real saga. I have wondered long and hard what compelled me to go and help. It was a complex of things I had to sort through in no time at all, with no idea what the parents’ wishes were. Lots of “what’s the right thing to do?” Even now, I don’t know the answer, if there is one.

  17. Katherine A Kelly s/n says:

    So glad to read this,as a carer one witnesses the madness of society up front,when will we learn ??it’s the simple things that matter in life,a smile,a touch,a listening ear,an understanding of the cycle of life,not rocket science???medication will never heal the soul or mend that heartbreak,”take a good look at the person,if you take enough time?.what do you see??its fear that is overwhelming,choices absent,society needs to take a step back in time.

  18. Janet Van Nevel says:

    So glad to read this, my father recently passed away from ALS. He was at home, in his favorite chair, without tubes, machines, medications. Surrounded by his family and everything important to him. So thankful he had the peaceful death experience when he did instead of months later in a hospital room hooked up to machines just keeping his organs functioning.

  19. David Cary says:

    “We never say much as we frantically try to save the life we know we can’t save or perhaps silently hope we don’t save.” Quote.

    I’ve thought about this issue for quite a few years now, and more and more so, as I grow older. Retired now, I know I can face the possibility of being loved to death, in slow motion.

    I know the issue is a slippery slope between euthanasia and the cruelty of doing nothing.

    In between is a care, concern and expense that has to be somehow both humane, civil, compassionate, and yet realistic.

    But I don’t know where to draw the line.

    I’ve drawn my own line in a Living Will that is quite detailed, yet only one page, but absolves my family of all guilt, expense, and decisions if I can no longer be considered a viable human being. Not euthanasia, but a simple Do Not Resuscitate with heroics, drama and expense.

    But what if my mind is clear? What if I am simply a physical blob with a good mind? Am I supposed to ruin the home lives and marriages of my children and grandchildren?

    My children say they don’t want it my way, that they will care for me. Do I want them caring for my every need? I tell them, “Just shoot me!” I know they won’t, but still….

    It’s a quandry.

    I hope I can just die in my sleep, or go out with a million volt stroke of lightning.

    I want us to remain a civilized society that loves human life, and never go down the road of euthanasia, but perhaps we should promote an End of Life Care Will as much as we do a Living Will, the latter which seems to focus on heroic, mechanical methods rather than the “normal” care received in a “rest home”.

    This would place the burden and limits of care upon the patient, rather than a grieving, distraught, guilt-ridden family.

    I don’t want to watch someone starve to death, or rot away. Isn’t there some measure we can take that is middle ground?

  20. Mia Miles says:

    I see a lot of comments talking about living wills and advance directives but you need more than that in this day and age. I have seen too many times a patient’s family reverse their decision when they are unresponsive or too incoherent. Make sure you have a health surrogate that you trust will make the decision you want, not what your family wants.

  21. ficshnritr1 says:

    My father did not die an industrial revolution machine-extended, drug-extended death. He died at home with me and Mom by his side. When you know how you have lived and where you are going in the world to come because you have made your election sure (2 Peter 1:10: give diligence to make your calling and election sure) it is easy to reject the drugs and the machines and the artificial “life” support and die. When you raise your family to live in a way that allows them to know where they will be going in the next world, it is easy for them to be at peace with your decision to die and to let you go. People that don’t want to allow nature to take its course and die, or family that doesn’t want to let go of loved ones are afraid of the clause after the comma (I added the italics to direct you to the statement people fear) in Hebrews 9:27: And it is appointed unto men once to die, “but after this the judgment.”

  22. Brigid says:

    Everyone should make a living will and DNR notation, and make sure all the family and significant others know about it, I have been an emergency nurse and I can still remember these frail older persons we carried out active measures on to prolong their lives,if the orders are not known the staff have to carry out these measures to keep you alive. On the other hand I can remember sitting beside my grandmothers beside when she was dying in her own home with all her family there praying for her in her last hours. I was only 6 years old and it was a wonderful experience forme, she had a very dignified death just as she wanted. That’s how I.want it to be for me, but you see I am now 73 years old with my family scattered all over the world, I am well but live alone and do everything for myself,I guess I am one of the lucky ones, I have made a living will and a DNR orders, and everyone of my friends are aware as is my family. Cheers Brigid.q

  23. Alane tucker says:

    We allow our elderly to die slowly, a long and torturous death. We treat our animals better than we do our humans. When our pets suffer, we help them by seeing that it doesn’t go on and on and on. But we’ll keep grandma alive as a vegetable, even tho her eyes beg us to help her stop this insane existence. If we let our old dog suffer until they die naturally, it’s considered animal abuse.

  24. Sau says:

    So true
    Similar experiences during
    15 years of acute medicine
    This madness should stop!

  25. t. mcbride says:

    There can be an enormous amount of pain and agony in dying. This editorial’s nonsense about peaceful soup boiling, should the dying subject want a little bite, is completely out of line with the death I’ve experienced. I’m so grateful for contemporary hospice best practices. Believe me, you don’t want to watch your loved one slowly suffocate from fluid in the lungs for days on end while you boil soup in case they get hungry. Ridiculous rhetoric here. Lose the peaceful soup BS and start from the middle.

    • I agree with t.mcbride that the “soup” scenario is not always relevant. We don’t all die in a peaceful way though I hope to take advantage of the latest in palliative care while exercising my right to say “enough” when medicine is no longer my friend. My mission at this time of my life is to approach my own death with grace and dignity when it inevitably arrives, I know that the odds are not in my favor for remaining active, healthy and pain-free as I am now at 77.

      Thus far, I continue to explore the scientific and spiritual nature of nearing and facing death. I hope to be informed enough to face whatever comes – to repeat myself (I’m allowed) – with “grace and dignity.” I’ve shared my feelings with my two children and know they will respect my wishes. I would hope to die at home but if the process is too long and drawn out, I would expect that a hospice wing at a hospital would enable my family to ease their burden while providing me the care I require.

    • Kay Hanf says:

      BUT… that scenario is possible with early hospice referral. It will allow enough time for the hospice team to educate families/caregivers in disease specific progression of terminal illness, adequate symptom management using medications customized to provide optimal relief of pain, anxiety, nausea, shortness of breath (and others) if present and preparation for end of life care by family members in the last days. In the best of cases, there is enough time for family members to reflect, reconcile and come together to provide an optimally peaceful home environment for a dying patient. I can smell the soup boiling, actually. Kay Hanf, RN Case Manager, Nathan Adelson Hospice, Las Vegas (former ER RN, 22 years)

  26. T says:

    Very well written piece Dr. Profeta! Ido agree with what is being communicated especially being a NH volunteer who sees people in their 90s and 100s who were convinced to try this or do that and shells of their originals selves, many of th don’t know who they are let alone their families. How wonderful an ending had they let nature take its course and let them go to their spouses arms in heaven with dignity and grace.

    Conversely, I do take issue with someone ending a persons life (who did not have a DNR) after a minor stroke followed by surgery for a bowel blockage. A very healthy 72 y/o man was euthanized by his wife of 50 years and the hospital he was being treated at. I know he most certainly would have recovered, he was up and okay full body after the stroke just had a hard time speaking. I will never trust people of the medical community after watching this beautiful healthy man being exterminated over medical expenses and for convenience. Why would a hospital allow this to happen? Doesn’t there need to be a DNR? Why do nurses follow a wife’s order to increase morphine? The arrogant dr came out of surgery saying “multiple organ failure”. Well his relief had all organs operating at normal levels within hours. This is outrageous. I have have lost respect and faith for once the most respected profession.

  27. Marilee says:

    Why is that so necessary when others die by murder or suddenly. ..they don’t get those benefits of being in their own bed at home….I don’t think it really matters how we leave this cruel world…

  28. Melissa D says:

    Tell us. Talk to us. Help us to understand.

    When I reflect on the end days of my mother’s life I sometimes cringe with regret.

    Just a few short months before she was beaming and full of life. How could it be that she was now stuck in the bed, in this hospital, with this sickness that would end her life? How could I know? Oh how I wanted her to live. I didn’t understand. I guess in retrospect I should have-but I didn’t.

    No one during those two tortuous months ever tried to help me understand. Instead they poked and prodded and ran test after terrible test. Doctor after doctor and nurse after nurse. I wish someone had just sat me down and been honest…”Listen, she’s not going to make it out of this. The cancer is too far along. Her 83 year old body is just too weak”. Those words would have been hard to take, but I believe they would have helped in the long run. We would have taken her home long before we did. Taken her home. Where she wanted to be the whole time; with her sweet puppy and all of her loving family surrounding her. Maybe some soup on the stove (for in case she wanted a little), and her grandsons playing in the yard.

    We did get her there eventually. A Hospice care worker finally helped us to understand. We finally too her home. I wish we had done it some much sooner than we did.

    I’m not trying to place blame. It’s no ones fault. She had the Big C and we all know that cancer sucks. We (the family) wanted her to live and the doctors and nurses just wanted to help.

    But next time you see this heartbreak….

    Tell us. Talk to us. Help us to understand!

    Maybe – just maybe, that family will see the truth much sooner than we did and will get a few more precious moments at home!

  29. Wendy says:

    When my father moved in with me, thinking he had 2-4 months to live, he asked simply for two things: to not be in pain, and to not be in the hospital. Well, he lived well for nearly two more years (no more need for walker, no more need for cane, 4 vacations and he was building an experimental aircraft in the garage). I was able to fulfill his wishes, and he died in my family room, by a window, listening to his beloved jazz. I have always felt so honored to have cared for him, and being able to faithfully carry out his wishes took the edge off of losing him. I could not have done better by him, and that made it okay.

  30. Heather soni says:

    The biggest problem I have with this is in cases of stroke. My grandmother had a stroke and couldn’t move her left side. All of us worked and Medicare wouldn’t pay for someone to come in and be with her 24 hours a day. That is what she needed since she couldn’t get up or move. She needed someone to help her do everything. In this day and age where everyone in a family needs to work to make ends meet the only solution I can come up with is to change the system. We should pay for in home care but somehow that is more expensive then a nursing home. My grandmother had hospice in the nursing home but she hated being in the nursing home. Personally I think as a nation we need to make a decision to support families and the choices to keep them together. Most of us now work so we have health insurance without it you can’t afford to have a life once you have children. That’s my opinion.

  31. Jeannine Carter says:

    We need to provide the help for families to do this. I believe families go down this path bc of fear. They don’t know how to work at their job, care for their children and also care for a dying, beloved parent. Moms aren’t home anymore to take this on. Employers would never allow paid time enough to do what you describe. Insurance companies don’t cover enough time of in home hospice care and even that requires a family member to be present. Help. That’s how you change this scene. Make help available. Offer help to the families who would LOVE to keep their loved ones home but bc of employers, insurance and a pure lack of knowledge dealing with the process of natural death-people do what their doctors suggest-let someone else do it. That’s what we do now with our children and our parents. The people we should be with the most or the very ones we are giving to “someone else” to care for. Help. Families need help. Not money, not cash. They need in home health care long enough to help.

  32. jmbtruefood says:

    Someone called it a retreat for the dying. I call it the next way station after you have decided to “get off the bus.” We need MUCH more thinking, discussing, planning and structuring for this reality. We in the boomer generation need to embrace this as THE challenge of our generation. Ok, well, saving the earth AND gently getting off the bus at the right time.

  33. maria h. Oliveros says:

    This is very true. I believe in a patient’s right to choose. At times some family members (blood related or otherwise ) makes a decision out of guilt. I had a discussion with my mom a few years ago about DNR, and she agreed. …she wanted to die in peace at her home. Death is the completion of the cycle of life. This is a wonderful article.

  34. richbuckley7 says:

    At the age of 73 and wife 71, we’ve had to say good bye to several loved ones. The best good bye seem to be for Grandpa (my wife’s father) who chose and was able to die at home of returned lung cancer that attacked his liver. But it was a better way to die, just as you indicate surrounded by loved ones in his own home.

    Now it’s Grandma’s turn at 98. Grandpa died at 65 and had his mind to the end. Grandma at 98 has only brief moments of coherence. Death with dignity is so very complicated analysed through the lens of dementia.

    It’s complicated for all of us.

    I think the youngest generation incarnating now will change many ethical notions dealing with the dignity of death choices. They will likely be the product of changing global attitudes about the after-life as well as a broader acceptance of the notion of a between-life and between-life agreements we share with other souls.

    This broader acceptance of the existence of a “between life” seems to be a rapidly expanding spiritual awakening. I don’t know how it will change our relationship with our elderly family members. I do know that we seem to rationalize and respond to the physical-emotional environment we find ourselves in. In the past some Eskimos did kill old people when circumstances were sufficiently desperate — a very complicated ethical practice pointing to a likely collective agreement between young and old, in favor of immediate survival of the younger family, with a high degree of accuracy of when to exercise this acceptable social custom. What grandparent would not sacrifice themselves to preserve their children and grand children in such harsh environment?

    But “between-life” implies reincarnation and that implies changing religious understandings. When “between-life” becomes the new norm, if it ever does, and I think I see evidence that it is, then what?

    Will that impact dignity of death life styles and choices?

    http://tinyurl.com/nwbltj2

  35. Lewis Baumstark says:

    I am a retired minister. I have stood with many families as they watched their loved ones die. Most chose, on medical professionals advice, to let their loved one go without “heroic intervention.” Some, though, did choose to use these prolonging devices. Even with living wills, if the families would not agree to death with dignity, the medical people followed the families wishes resulting in prolonged suffering for all parties. Hear me well, I do not advocate wanton disregard for medical “miracles,” but there comes a time when doctors recognize the inevitable. It is then, in my opinion, that the family should let go, be it senior adult, teenager, child, or adult. Death with dignity should be every person’s right. The timing for such cannot be legislated, but must be made sensibly with as much absence of emotion as possible in collaboration with doctors and other helping professions.

  36. emily nielsen says:

    I have been with both..
    my mom lived a full n happy life. She stopped goung to doctors in her early 70’s. She was 86o when she had dad move them closer to my sister and I. We did not understand the urgency in dad’s request, but pulled together and had the packed, moved and set up in their new home in one weekend.
    Six weeks later I had a frantic call from dad to come right away. When I arrived he was in tears, my mom was in her bed, unaware of who I was. I called an ambulance and we were taken to the hospital. We explained mom did not want to go on life support, 45 minutes later my dad where taken to a private room where we stood by her side till she slipped away…it was peaceful and natural.
    My dad chose the doctors, he survived back surgery, where he was on a “styler frame” a massive wheel that held his body between two boards completely immobile for 3 months. Then a triple bypass. In his mid 70′ he was diagnosed with cancer. His response “how do we manage it”.
    Lots of medications, and his ever positive attitude. He had a high trance for pain, never complained.
    He also peacefully passed away at 89.
    No tube. .no machines..

  37. Jan Harrison, PTA says:

    Thank you so much.
    As one of those many “other” healthcare professionals pushing to get their time and visits in.
    I think it’s time to retire!

  38. Rev Reif says:

    I’ve been a hospice chaplain for over 25 years, and I can’t remember when I’ve seen a better Article with such wonderful comments. Information is the key. Get all you can. If you can’t figure out how to make something work for your family, reach out to your local hospital social worker, your clergy, or you lose cal hospice or palliative care program. Bless you all.

  39. Reblogged this on The Pugsomites and commented:
    Since we’re all snowed in, it’s a good time to take some time, slow down and reflect.

  40. Judy says:

    I want to die by the window. (22 years in nursing, 11 months from My APRN in Adult Acute Gero)

  41. Kathie Lavenz Bickerstaff says:

    So well written. I am so comfortable that we let both of our parents pass away without further heroics to extend lives very ready to be over. They were both very strong Catholic people who looked forward to going home and meeting God face to face.

  42. Carol D says:

    Loads of feelings connected. Why does technology change our lives – the fact I’m communicating via a smart phone not withstanding(!)? Now we have terms like Death With Dignity and End Of Life Care. Dr. Profeta’s thoughts are most appreciated (though feels a little nostalgic…was it all really so beautiful?). Good thought provoking post.

  43. My fear is to be kept alive bedridden not able to care for myself and not being able to talk. I have nightmares about it now at 55 and hope Drs will be allowed to end life by the time I need it.

  44. Angelica says:

    I am in my late 30s and my sister in her early 40s. We have talked at length with our parents about their end of life wants. We as their children feel that it is our duty to care for our parents in their last weeks, months or even years. No matter how long it is we are the people they spent their best years taking care of and when it is time it is our turn to do the same for them. No matter what they will be in their bed in their home with allthe people that love them. We will NOT let someone/anyone take away their dignity, and we can never force them to “have more time” if it’s not quality time.

  45. Cathy Gray says:

    Nothing to say except God Bless You.

  46. J says:

    My father passed just last year and this is how he chose to go, on his own terms.

  47. Gail Robertson says:

    You are so right. Let them go with dignity, not with a tube stuck in every orifice of their body. Some people keep their loved ones here for themselves I believe, unable to let go. Ask them before it’s too late what would they want.

  48. linda Rogers says:

    As a child growing up in a village in UK. early 1950’s I was allowed to go with my nan to homes of the elderly, sit with, chat and watch as they peacefully passed away. What a privilege…..the serenity that enveloped those moments stays with me still. We all have a right to die with dignity where we want, we have been stripped of all of this.

  49. terrilawton says:

    Dr. Profeta
    Do you think legal documents like a living will are enough to help ensure our wishes are carried out by the medical community?

    • You did not direct your question to me but I wanted to give you some feed back on what I have run into. Does a living will help the situation when I can no longer express my desires. Yes and no. If you just answer the couple questions that are on the document then the answer not very much. You can express that you don’t want to be fed. You can say keep me from hurting more than I have to. That is about it. But you can write much more in detail directions on do’s and don’ts. You can get as detailed as you wish. Without a living will lots of luck.

      You have to be careful on who you ask and assign the responsibility’s to watch out for you. How many hours a day can they be there? If you are thinking of an easy going not forceful person that has never done this before they will be over whelmed and it is very possible your wishes will not happen. The nurse or care provider taking care of you has directions from the doctor or head nurse on treatments and medicine also any therapy your doctor may have prescribed for you. If your condition has changed and your person that you would want to say no or they know what you had talked about things are not going right then they need to step up and say don’t do that. The people may or may not comply. I have seen it go both ways, now if Hospice has been called in to manage the case then they will be in charge. They will communicate with both of them but will make the decisions according what your living will says or what they believe to be the best for you if a document does not cover the situation. When hospice is in charge the hospital or nursing home is obliged to listen and follow their directions.
      Every one wants to take good care of you but your wishes and the care providers and your person of choice may not all be on the same page. I am not trying to scare you but just to get you to thinking about thinking things through.
      Thank you
      Larry Clayton

  50. trishafaye says:

    Reblogged this on Embracing Life Tribe and commented:
    It seems odd to reblog this on an Embracing Life blog. But embracing life and living every moment with passion and gusto also means embracing the end of life and the wish that that’s how I will spend my last days — under a window with the scent of soup in the air, instead of in a nursing home or hospital surrounded with the trauma of a team trying to hang on and keep me here.
    Embrace your life today and every moment of this journey of life, including the frailties and natural progressions of our ageing bodies.

  51. Anne says:

    We need to be educated, each one of us. Having been the health care representative for a bed ridden, yet exceedingly lucid Aunt, I was faced with a barrage of what I’ll call here, for lack of a better term, misinformation. It is daunting to feel as though you are playing God when making decisions. When you’ve looked into the eyes of your charge and promised her you’ll see to it she has a fighting chance. Learning what the issue(s) are, trying to understand the consequences of allowing action, or not. If we really knew the ways to understand when we’ve reached the point where they are telling us enough is enough, we could respectfully allow them the dignity they deserve. I am thankful that there are so many ways people can be given back quality of life. If there comes a time when there is no hope of that, help us navigate that without making us feel as though we’re too stupid to understand.

  52. Judy says:

    Such a helpful article and discussion at this time in my life. My 86 year old mother will be coming to live with us in just a couple of days after her cataract surgery. She doesn’t want to. But she isn’t capable of the post surgery eye drop procedure because her short term memory is shot – she really needs to be looked after. I truly look forward to her coming to live with us, I’ve been asking her for a few years now. I’m fortunate because our home is large enough and I work from home; my husband is retired. She really doesn’t want to leave HER home though and it breaks my heart to force her to do so even though I know it’s for her best interest.

    I want to add another side to this discussion though. Four years ago my mother caught a respiratory infection that progressed rapidly and put her in respiratory failure. Chronic low grade dehydration is probably why it progressed to that point so fast. Anyway, we got her to the hospital in just enough time for them to intubate her to save her life. They heavily sedated her so she wouldn’t pull the breathing and feeding tubes out. After being hooked up like this for a few days, and even though I stayed by her hospital bed practically 24 hours/day – she managed to pull the tubes out anyway, and started breathing on her own! She convalesced for a couple of weeks at a facility and then went home.

    While hooked up, other family members that came to visit her in the hospital assumed she wasn’t going to make it and they cautioned me to accept the inevitable. But it wasn’t her time. I’m grateful that I didn’t stop them from saving her life in the E.R., because she has independently lived 4 more years and now is coming to live with us for hopefully many more years (my grandparents lived into their 90s as have several of her siblings – one lived until 101).

    These are all difficult decisions for sure. I think the key is to stop trying to save someone when it is clear they can’t be saved. But still leave room for the possibility that they will pull through with enough prayers, love and a good medical team.

    • irritablemother says:

      Judy, I pray the time with your mom in your home will be a blessing to all. My 98 year-old grandmother lived with us for the last 9 months of her life. (She just passed away in November.) Though there were rough times, we are all so glad she could be here.

  53. Anita says:

    My mother had passed and my dad had Parkinson’s so we kids took over his care. We all had jobs and none of us could be there 24/7 but were there as often as we could. It had gotten to the point that I was there 3 or 4 times a day and was worn out, so I arranged to have him admitted to our small hospital for a 3 day weekend for what they call “respite care”. He fell the day I was to take him and hit his head. I found him when I came to check on him and called the ambulance. They did a CT and found what appeared to be lung cancer. We were fortunate enough to have a very frank doctor who told us he wasn’t strong enough to survive any treatments for the cancer and even if we did treat it and put it in remission he would still have Parkinson’s. We made the decision to not treat it and he was allowed to stay at the hospital in long term care. It was such a relief to me not to have to worry about him all the time. Within 15 months he passed away in the hospital that took such loving care of him, with his family gathered round him. My point is that not every solution will work for every one person. I’m sure he would have been happier at home but sometimes it is just not feasible. Until our government decides that the elderly are worth spending some money on families have to make tough choices based on their personal and economic situations. I am one of the lucky ones who feel that the decisions we made were right for Dad.

  54. Archdeacon Malcolm French says:

    We’ve done the same to birth. Now we are born and die in hospitals, whether we need to be there or not. We waste resources based on the need to feed the military industrial medicopharmaceutical complex.

  55. John says:

    Wow Ann. That is amazing. I read through most of the comments and was suddenly aware that this is the zeitgeist in our country right now (among other things of course). The other day I was speaking with a woman who is in one of my classes and who works with homeless people in Seattle. I asked her how many homeless people die each year and are they just found in the woods or does someone call the police – what happens. She didn’t know but told me who to contact. So I did and this is what I found out. The Seattle area has over 3500 homeless people and that number is growing each year. Last year 91 homeless people died on the street, they died in most cases alone, probably in pain when you look at the cause of death and clearly w/o any dignity. If that number is growing (estimates are that it will be over 10,000 homeless in 5 years and the percentage stays the same then we are looking at around 280 people dying on the street. My point in all this is that I don’t believe anyone should die alone and I think that it is a tragedy that we spend all this money on keeping people alive (those who can pay for it) and those that can’t we forget about them. I didn’t even want to ask what happens to their bodies. As finite beings who have a deep longing that goes into infinity most of us refuse to talk about death because to acknowledge it would somehow force us to think about finitude and being. We have a deep seated anxiety about death that I think comes from this unresolved problem of our finitude and our longings that extend beyond our finiteness. So we do everything we can to ignore it, resist it, treat it. After being with Mary to the end I feel that the lesson for me in all this was to speak out to the medical establishment let them know what you want and what you don’t want. Yes a DNR is a good idea but you need someone there to make sure that it is implemented with compassion. Love is a big factor when dying and in the absence of love the dying process is turned into another machine process. No thank you.

  56. sarah says:

    My father is in his early 50’s, is in a nursing home after a few bad stokes. He requires full time care, memory not great, he can’t walk, dress or shower wirhout assistance. It is incredibly sad to see him living the rest of his life in a bed. At the time of the 2nd stoke we had to choose to let him go or keep him alive with surgery not knowing the outcome. His wishes were never voiced, personally I wanted to let him go rather then live like a vegetable but family wanted him alive! Walking into the nursing home it’s sad to think my father could be sitting in this bed for another 30 years.

  57. Gregory says:

    It would be nice if our Family Medicine colleagues would take 3 minutes of each visit and discuss these issues with the patients and their family members BEFORE they end up in the ED clinging to life. That’s not the time to be making these decisions. It’s not right for the patients, the family or us.

    • Does it really take a professional for us to see how much better it is for everyone, especially the patient, to die peacefully at home? I like the article as I am in my 80’s and I am now going to talk to my family.

  58. Erica wright says:

    Wow! I hope this post opens the eyes and minds of many. I work in a nursing home and have seen most of this at least once. It’s so sad to see it. A lot of people don’t think about these things in time and unnecessarily put their loved ones through this.

  59. Alison Miller says:

    This moving account of modern day death is a stark reality for many. Whilst medical advances have been made, the choice to prolong life isn’t always the best option. If our loved ones are able to shut their eyes peacefully and in the loving care of their families, it is a wonderful thing. Let us try and retain those old fashioned values for end of life care….

  60. My husband has recovered from 3 major strokes. The last stroke was the only one that impaired him, his vision and balance. He’s 83, we’ve been married 58 years. We were sent home from hospital with no hope.He had a Sfrabellum stroke They told us he would need immediate hospice care. To prepare ourselves for the worst.
    But he’s reading with adjusted glasses,walking with a walker,eating by himself, telling detailed jokes, bathing and dressing himself, even watching tv and working on his computer.
    He has his loving family and many friends around him. He sleeps more than normal,he’s a little weak, but that’s about the only issues he has. It’s been 3 months since his death sentence. I deem every day as a gift. He’s defying all the odds. On the 28th of January he’s being re-evaluated.
    After reading all the comments here and knowing he has signed a DNR form . I’m not so sure if we should rewrite a new detailed one. Thanks to Larry Clayton.
    Hospice is thinking about releasing him because he’s doing so well. We were overly prepared for his demise. But, I don’t think he’s going anywhere. So I think I’ll keep the bone broth soup on the stove,friends and family coming to visit, keep up his regiment of laying on his Bemer ( science machine made after astronauts came home from space to help open capillaries from magnetic fields from the earth) and enjoy my loving husband everyday he’s alive.
    I do appreciate all the comments,and will consider them when and if it happenstances arrive.
    I married this wonderful man when he was a decade older then me,we have 3 fantastic children and 7 grands.Life is to good not to live it to the fullest!! We have many options how we die,also how we live. We choose to live with the hope of the resurrection and to be together on a paradise earth in the future.

  61. Manny says:

    Very compelling reading as one observes one’s friends and colleagues living out their lives with apparently, little understanding of what is happening around them (dementia). The impact on the caregiver family members and the effect on relationships, is sometimes sad to behold but usually, uplifting.

    • Uplifting? I have seen the burden on many close friends and family, and I don’t find the burden on any side to be uplifting. I can try to find positives in it (as in any situation) but in the end, it just seems like needless suffering to me. I don’t believe the mantra of “that which does not kill us makes us stronger.” Sometimes. And sometimes it just leads to PTSD.

  62. robin beattie says:

    Here in Europe in Italy there is a much better more traditional system with public health subsidized assistance in the home.

  63. Thom Dick says:

    Beautifully thought out and said. When did death become such a frightening thing, and who gave us the notion we actually had such power over it? People are not just “patients.” They have a right to live with dignity and to die in peace.

  64. Unfortunately, our legal system has only encouraged this trend: The risk of “not having done enough” opens hospitals and providers into doing more. Second, the push of profit adds onto it. If a person dies, you aren’t making money off of them anymore. Then third, a totally “verboten” thing to say, but I genuinely question the same parallel situation we have toward keeping very disabled newborns alive, and not letting them die. It is heresy, total moral corruption to suggest that nowadays, and probably even illegal to act on that opinion. But it’s just the inverse, even worse, toward keeping the very old alive. One legacy of Christianity is total fear of death, despite the belief supposedly embraced of eternal life.
    I do not want my family, community of society investing $$ toward keeping me alive when my window of larger contribution has passed. Toward what end, purpose or otherwise?

  65. The most compelling argument is the simple statistical fact that most people who work in hospitals choose to not die in them. … That tells us a world right there!

  66. Jenni says:

    Another issue is that doctors don’t come out and say you are dying. And just keep you coming back for pointless tests clear up to the end!
    My mom just died recently of multiple organ failure when we the family finally connected the dots of what was going on, we said no more to Doctor visits and tests. You would think the doctors had not seen multiple organ failure before. They actually never really came out with the diagnosis either. We took her home and she died 3 weeks later. I am still waiting for death certificate to see what they put down.
    So frustrating because I know they had to of known she was dying and could have said “hey she is dying and there is nothing we can do to stop it, so go home and enjoy every minute you still have with each other” instead of setting her up for more tests with more specialists for every week clear up to just weeks left of life. She hated going to the doctors and having tests ran, but she was trusting them to know what they were doing and that they would say the words “you’re dying and there is nothing we can do. Go home and spend your time with the family instead of at the doctors”.

  67. Ed Renehan says:

    Right on. Sherwin Nuland of the Yale Medical School wrote that the greatest enemies of elderly patients are “young doctors” intent on keeping them alive. And John Cheever, himself terminal at the time, wrote of “the dying who were kept alive, unconscionably, through trailblazing medical invention.”

  68. Kelley Mulick says:

    12 years as a paramedic and 30 years as a RN, I couldn’t agree more. I have told my love ones that I am a DNR. My decisions have been made so my family doesn’t have to choose.

  69. Sister says:

    I agree with what is being said as myself and my two brothers helped my brother who had never married go through a two month battle with cancer. I being the only sister and closes to our brother I was the main contact person for his care. Our brothers wish was to be home and we helped him spend as much time as we could at home during them two months, I was lucky enough to be able to take sick time from work to help with his care. We knew after the first month he wasn’t going to be with us long although the two times he was in hospital the doctors main thoughs were built him up and he will be good, well myself or my other two brothers were not trained to care for sick people and even though homecare is suppose to be availabe to us here other than a visit from a homecare nurse the day before he was admitted to hospital the last time we had no help from them. I as the spokes person concerning his health care kept telling the doctors we wanted him to be comfortable but did not want heroics with medicines to prolong his life, which went onto deaf ears the doctors for some reason never realized until the day before he passed just how sick he was. He was admitted to hospital the last time on a Saturday and on Sunday morning we met with the doctor who had released him from hospital only the tuesday before and he told us I never realized how sick he was, why do some doctors not listen to the family? I told the doctor we just wanted him kept comfortable and pain free, that we wanted them to let him slip away, no more medical intervention. Some of us are not comfortable caring for a loved one at home who is terminally sick but in a hospital at least I know if I need help it is outside the door down the hall.

  70. JL Miller says:

    Why do we do this? Simple – because families force us to make their loved ones a full code. We KNOW there’s no quality of life for a demented 85 year old patient with acute respiratory failure after a hip fracture, but at least one family member is convinced that keeping Grandma alive is the “right” thing. Then they threaten us with lawsuits for hospital acquired pressure ulcers even though Grandma only weighs 98 pounds. I feel like the worst clinician in the world for putting in that feeding tube when she pulls it out, then restraining her so she doesn’t self-decannulate. Then when thr acute kidney injury happens, nephrology must be consulted. They tell the game that Grandma’s kidneys aren’t working and the family insists on starting dialysis. Medical ethics committees are a joke; the fear of litigation far outweighs the ethics of telling the family that hospice care is the only thing we’re going to do.

  71. webonds says:

    Regardless whether you’ve signed a living will and given medical power of attorney to someone who you believe understands your end of life wishes, sometimes, as said above, it’s not enough.
    My dad fell, hitting his head, and within hours was in a coma & not expected to live. We, the family, had to decide whether a feeding tube should be inserted, knowing that he had requested no heroic measures be taken but there was a chance he could come out of the coma and recover. We also knew, though, that once on a feeding peg, nursing homes, his next step, do not make it easy to stop using it. Although he came out of the coma in the nursing home, he had severe brain damage, couldn’t leave his bed, had to have a catheter and had no quality of life. In a nursing home, at least in Ohio, we Coke no longer use his regular doctor who also knew his wishes but had to pick one from the nursing home’s list and we chose their Director of Medicine who assured me that he believed in hospice care & would approve hospice when he felt my dad had the required six months or less to live. I constantly asked him and the nurses in my dad’s care over the next year and a half whether it was time. Not until that Doctor turned my dad over to another doctor did it happen. Upon reading my dad’s records the new doctor asked the staff why the family had never agreed to hospice (the staff defended me). He was put on hospice that day and died six days later. Moral of the story: regardless what reassurances you are given by the doctor who controls your loved ones fate, if you even start to think he has his own agenda or different beliefs, switch immediately or insist on a second opinion from another doctor.

  72. Debbie Taylor says:

    This all begs that old question…. “Just because we can, is it right to do so”…..

  73. Tom Sylwestrzak says:

    Watched my mom die spending 10 months in the hospital with cancer 1965. Found my dad passed away from a mild heart attack while taking his afternoon nap 1982. Little wonder how I choose to go .I can only pray. It all boils down to quality not quantity.

  74. Tina Baker says:

    I went through this with my mom..years of pain,dialysis and amputations.Sure wish we could have been enlightened.

  75. My father passed away two years ago he was 94 almost 95. He lived in his own home He wouldn’t let any live with him. I was single and would have loved to move in but he just wouldn’t have it. My sister had cancer and got to the point she couldn’t help so her daughter did when she could. Finally there was just nothing left and he spent his last days in an assisted living center. No it wasn’t what we wanted, but it became very clear there were no options. Thank God his last days were comfortable. He is truly missed.

  76. cookie1986 says:

    This is so full of truth. We used to allow our loved ones die with dignity, and keep the mourning and suffering upon ourselves. Now we are so afraid of the afterlife or the idea that there may not be one that we don’t know how to let go of this life.
    Every person caring for an elderly relative or patient should read this. When it’s time to go , it’s time to go.

  77. colleen says:

    Bring back dignity in death. X

  78. Margaret says:

    I must say a positive word about the nursing home my parents were in, mom had had a massive stroke and dad had Alzheimers. We chose it, because of their attitude toward the people in their care. Granted, it was not in the same town as I live in and my parents lived in, but it was their loving care when we were visiting it that won us over. Often when I went to visit, which was almost daily, I might find a care giver putting lotion on my mom face, arms or legs, and talking to her, telling her how beautiful her skin was. The care givers’ gentle touch and words were heart warming. The home called me at work to say that my mom only had about 12 hours left on this earth. I dropped everything and drove as fast as I could. When I reached the home, the care givers were as gentle with me and they were with my parents. When asked if I needed anything, I asked if I could have some water, having forgotten to get anything before driving up. A very short time later, a silver tray was delivered to the room with and assortment of drinks, crackers, and fruits. For some reason, that touched my heart so much that this place not only care for who lived with them, but also for the families. Mom did go about 1 a.m.
    Dad stayed in their wonderful care for 2 1/2 more years before he was released from his earthly body. They were as gentle as lambs with my parents. We will be eternally graceful that a place like this existed.

  79. Diane Griggs says:

    This is amazing. I worked in a nursing home for several years and saw so much of this. Letting go of loved ones is hard. Selfish wants make family members go way too far some times. I hope this article spreads and reaches the hearts and minds of this generation and the next.

  80. Mavis Mead says:

    This is utterly beautiful. As an 81 year old great grandma in decent health I pray that my family lets me die with dignity, at home and surrounded by my children and grand children. My late husband passed this way, at home, and I was watching his serene face as he passed. He told me he was ready to meet his God.

  81. D. Beales says:

    This is so idealized! It’s what everyone wants but few can afford. It involves someone staying home round the clock to bath, feed, dress and diaper a dying person. How can anyone do this in a society with almost everyone but the wealthy working full time, and often more, in order to make ends meet? Hospice might be the answer, but wasn’t in my father’s case. Dad rallied, and was removed from care after six months, then he ran out of money, forcing us to sell the home he built with his own two hands and place him in a nursing home. It takes two large male aides to toilet him. Not possible for us. Not possible for most. What a world.

  82. While I applaud your intention, the scenario you paint isn’t the picture for many at life’s end. As other commenters have pointed out, dying at home can be a scary, exhausting, anxious, upsetting experience for both patient/person and family members. As a layperson sitting on many steering committees for end of life and palliative initiatives, it seems what’s missing in many of the conversations/decisions about prolonging life is the need to re-examine the ‘do no harm’ vow taken by healthcare professionals to acknowledge harms caused by the ‘do not want to fail’ motivation prompted by the promise of medical advancements. https://www.linkedin.com/pulse/implementation-physician-assisted-death-pad-kathy-kastner

  83. My father died two years ago. He was 94. With declining health he spent his last days in an assisted living facility. He could have had a private nurse come to his home but that didn’t happen. I am very happy he wasn’t there for a long period of time, but I believe the old ways are the best. Modern medicine needs to step back and stop prolonging life and look at the quality of life Lets look at who needs to stop this practice of mistreating our elderly — I believe the family has the last word.

  84. Elizabeth Vinzant RN says:

    As an ICU nurse of 10 years and now a specialty home care nurse, I can truly say I understand every single word of this. The people we care for are beautiful people with beautiful souls. I have been with many people as they have left this world. It is tragic. The medical team will do everything we can do to save the life of your loved ones people. Every thing. That’s not always the best thing in my opinion. Talk to your loved ones about advanced directives. Ask them what they want now. Take it from me. My momma will be at home and loved because she said so lol.

  85. Sally Moley says:

    How wonderful to see these words of truth. My husband is dying and when I try to tell everyone around me “WE’ don’t want any heroics they step away as if it is murder we are talking. Thank you for the truth in your writing!

  86. I hope you fo not mean me. Because I am young 72 and not ready to pull the sheets over my head. Lol But if its your fTher i am ok with that:)

  87. Stacey says:

    I agree with much of your article and appreciate the sentiment behind it regarding end of life care, I would encourage you to become better acquainted with life in a nursing home. There is a significant difference between a nursing home and a hospital, which I feel like you lumped together in this article. I don’t think anyone ages and thinks “I sure hope I can meet the level of care required to get into a nursing home soon”, nor do the families of these individuals take this step lightly. I am disappointed, even angered at some of the statements in this article, and feel that your article perpetuates the myth that nursing homes are an undesirable place for the elderly to live. As an RN, Nurse Manager of a 44 bed unit in a County nursing home facility, I can attest that we do everything we can to diminish the institutional feel to provide as much of a home – like environment as possible. The residents who live in my facility become like family to us and are consistently treated with kindness, love, and respect. The nursing home industry is heavily regulated. Our rate of ulcers is minimal and, if they do occur, they are identified and treated quickly. The only stage III or IV ulcers we see are from residents being admitted or re-admitted from the hospital. Foleys are removed immediately when residents come to us from the hospital unless they meet very specific criteria. Feeding tube are very rare in my facility, we currently have zero in our 290 bed facility. Please go visit your local nursing home. I am quite sure your visit would be met with surprise and pleasure, as most times when I call the ER, I am met with scorn as I give report on the resident I am transferring. We lack some of the equipment you take for granted in the ER. Sometimes the elderly do have emergencies, although I always try to encourage a palliative approach. When at all possible, my residents pass with soft music, low lighting, quietness, love, and family or staff at their side. You will NEVER catch my staff with their heads held in shame; there is dignity in dying and EVERY one of my residents is afforded this dignity.

  88. As a home health RN, I work with the elderly and watch patients and families as they attempt to wade through all of the hard decisions as someone is making their journey. I do think that one of the difficulties families face now is that they dont have the extended family support that once existed as the norm when family members lived close or sometimes in the same home. I often see one son or daughter trying to care for their mom or dad by themselves because everyone is scattered across the globe. Sometimes the care needs become greater than they can manage by themselves, even with hospice or home health support and services, and they find themselves having to place their loved one.

    As for advanced directives, many states have a POLST form which actually carries the weight of being signed physician orders. (as opposed to a living will which only requires a notary to witness signature). The POLST ( provider or physician orders for life sustaining treatment) may also be more detailed than a living will and is placed in the home on the refrigerator door , easily identifiable to EMS personnel should they be called to the home.

  89. Donald Hull says:

    About nine years ago my doctor told me the stress would kill me from caring for too many family members…eight at that time… He told me it would be quick…one breath and it would be over… He lied. Older brothers solution was/is to warehouse everyone in nursing homes after fleecing them, never lifting a finger otherwise… More recently my younger special needs brother told me he overheard our sister-in-law say she was hoping to drive me to killing myself so they could “get the money”…no luck to date. Caring for our aged family has been God’s biggest gift to me. I’ve done as best I could…haven’t charged a cent and haven’t taken a cent…regardless of what sister-in-law thinks, THANK YOU, GOD…only You know…

  90. Cynthia says:

    Wow…so powerful. We are kinder to our beloved pets then we are to our family. Hospice care in the USA is far from the best it can be. Many families are overwhelmed with the 24 hour care with dignity our Mothers. Fathers & family deserve.
    I totally support assisting our dear ones with medication to ease the pain & help with all comfort measures possible

  91. Sandralee Mc Kinnon says:

    When my sister was dying from cancer we kept her in the home with her daughter in South Carolina. These were supposed to be days of enjoyment and love after living in the north country all her life. But all those plans were short lived.she had many surgeries and chemo and like her other daughter thought she would outlive this disease.we honored my sisters wishes and dying is like birth. It’s hard work but the end is the blessing. If you have a brand new baby or your spirit flies away with those who have passed before you have come to take you home. THIS IS A GIFT . Beeping machines and feeding tube and all the other methods used to prolong life as the medical teams work to extend a body that just wants to move on is not what your loved one might chose . There may be some people wanting every intervention possible so it’s very important to find out about their end of life wishes.for my niece and I it was the final gift we could give our loved one . Before modern medicine death, like birth , was a time to watch and offer assistance and love in equal measure. Each life has its own story and one of the greatest gifts to give is allow each of us our own ending . So I know when my time comes I know my beloved sister and niece will.be there to take me home.

  92. Patti Loyd says:

    Let go and let God…the best advice I have ever been given.

  93. Joe says:

    I really enjoyed your article and hope many people outside of the medical field read it. I am a current resident and used to be interested in critical care medicine until I spent sometime in the medical ICU and was sick to my stomach daily seeing people essentially torture their own family members. Even involving our palliative care team to help with goals of care, I often feel I am practicing futile and even possibly unethical medicine to families who are essentially torturing their relatives rather than letting them die with dignity. I think physicians are in some ways to blame given the poor education we give on what outcomes our treatments will realistically provide.

    I think there is a serious lack of education starting at the primary care level all the way up to the ICU team. Even when a family brings me a “living will,” the families often are unwilling to let go and overturn their loved one’s wishes to pass peacefully. I want to ask them “so you want me shove a tube down your mom’s throat, sedate her daily but wake her frequently to check on her neurological status and watch her gag as we suction secretions from her throat, stick large catheters in her neck and groin, of course a catheter in her bladder, probably a rectal tube for good measure, an invasive blood pressure monitor in her wrist, then pound on her chest until we start to see blood to shooting out the tube we put in her throat until after doing this for a half-hour I’ll finally call you and say sorry for your loss?”

    I do not think families are inherently evil or trying to torture their loved ones. I think the best of intentions are there. I think physicians need to better educate families and the entire culture needs to change. Just because we can keep someone alive, does not mean we always should.

    When it’s my time, I do not want to die being tortured in a hospital. I want my loved ones at my side. If I’m uncomfortable I want a little morphine for my pain. I want it to be calm and quiet. I want to look back at my life and be proud of it and die knowing I have left leaving the world a little better off. And of course, after I am gone I want my family to have a big party to celebrate my life.

  94. Excellently written and inspiring post!
    Your words or wisdom are 100% true. Some people are going to disagree-specially those who work in these facilities. Yes– you may do everything you can to make them feel “at home” but you are missing the point. It is all about how, where and with whom do we want to spend our final days!

    What Dr. Profeta is trying to tells us is that as a society we have the way we are supposed to leave this earth– It is no longer natural. We should be home with our families, in a familiar environment with familiar faces. Whether you are poor or rich, there is someone about being surrounded by those you love in your own environment.

    What has to happen here’s that the system should make it so we can choose where to spend our last days whether there is a living will or not. That should be the standard. If you say DNR there shouldn’t be lawyers and third parties involved or vice versa. That is the standard for many in third world countries to this day– good or bad they are home with loved ones. That being said, realistically speaking in this day and age when everyone works, who is going to care for the person?
    Again, the system comes into place. As someone who worked all of your life and was an asset to society, you should be covered financially to spend your last days with dignity. For those defending nursing homes I’d switch those jobs to in-home care or hospice.

    Get your affairs together and state clearly what you want and don’t. Once you are in “heroic hands” with nothing in writing you are done! Tell your family now that you are alive how you want things done, because in moments of disappear family members will want to follow their wishes (not to loose you) when you are ready to go.

    Wishing everyone a happy healthy life and serene last days at home with family.

    • betty says:

      This is why there is such a thhing as a living will.

      • Jan Davidson says:

        One thing people don’t realize is that family can and will bypass a living will. It is absolutely vital that end of life be discussed in advance, even if you think you are too young to have to worry about it. After working in an ER for 24 years, it is so sad when a dying person is put thru the above scenario by a well meaning and grieving family member.

    • Marie says:

      It isn’t always the case…we wish more than anything our mom could be home with us instead of in a nursing home. Early onset Alzheimer’s changed that. We tried…my sister and brother -in-law sold their home and moved in to take care of her. She didn’t recognize her home of 39 years anymore and kept trying to leave and find it. Unfortunately none of us had the money to hire in home care. There are no programs to help pay for that like nursing homes. She is an almost 20 veteran of the Army. Initially we moved her into the VA Nursing Home…we felt good about it because there was an Alzheimer’s unit..it was only 5 years old so it was beautiful. The staff seemed wonderful. Mom was miserable and 5 months later fell and broke her shoulder. I insisted they take her to our local hospital. After drug testing her they found Suboxone in her system. Needless to say we moved her to a different facility. While in the hospital though we met with a wonderful doctor and signed DNR papers.
      So while we had to make the unfortunate decision to put her in a nursing home..we made the decision to not let her end of life be spent hooked up to anything.

    • Marie says:

      I agree…and I am not defending nursing homes because I wish like hell my mom could be home…however there are no programs to help pay for help at home like they pay for the nursing home. My mom worked her ass off to raise 4 kids alone and had no retirement or anything…she worked a barely minimum wage job. She is an almost 20 year veteran of the Army. (I say almost because they medically discharged her at 19 years 1 month). So we put her in the VA Nursing home and she ended up with a broken shoulder and Suboxone in her system.
      It is unfortunate that in this day and age we can’t choose what we would like because financial situations make it impossible.

  95. Pam Knell says:

    My 72 year old husband died of neuro-endocrine cancer that had spread to his lungs, liver, brain and spine. He was in the hospital for 5 weeks being given all kinds of tests and treatments. We finally had to beg a doctor to tell us the truth about his condition. The answer was that the cancer was invading every organ and that, if treated, he would live 3-4 months and if not treated the outcome would be the same or he might live longer in hospice because he would be more comfortable. We chose the VA Hospital Hospice in Northport L.I. They were wonderful, patient, kind and caring to the patient and the family. He was rarely lucid and a large man. We couldn’t have taken him home. He needed two people to help transfer him and he needed so much in the way of painkillers. He received absolute respect from the staff. Visiting was 24/7 and relatives felt free to drop in day or night. Two of my nieces sat with him at 1 AM after their dates. He was able to be outside in a garden in a wheelchair or attend bbq’s given by other veterans. At the end, he was given as much morphine as necessary. The VA provided a private room with beds and bathroom for our family to use when they knew that death was imminent in a few days. We were able to live at the facility and take turns at his bedside. They put lounge chairs next to his bed so that 3 of us could sleep in his room and help with his care. They provided his favorite music round the clock.
    My daughter and I were holding his hands as he passed. After he passed, they wrapped his poor body in an American flag and put him in an ambulance with much care. They closed up his room for 24 hours and left candles and flowers on a table in front of his room. I can’t say enough about the VA. Many of the staff were veterans. They did all the right things for us. God bless that staff.

  96. Maureen Dane says:

    Thank you for saying what I feel…to acknowledge what I see and all the feelings that overwhelm me at times

  97. Ray Doro says:

    To true, we are not always keeping them alive, we are stopping them from dying. Is it right to thinker are God????

  98. Mary Lipsett RN says:

    A wonderful article. Having worked in Hospice and helping families to care for their loved ones at home is a blessed experience. The little Grandchildren and the family pets can all be a loving part of the dyeing experience. Thank you for this article.

    • Pamela geoghegan says:

      My sister Patricia died six weeks ago. We were allowed to take her home from the hospice where she had been well cared for but we wanted to care for her ourselves with Hospice at Home support.. The whole family took it in turns to stay with her 24 hours a day. her dog, molly, was able to lay on the bed with her, and we put up her own Christmas decorations and tree for her at her request. We sang Christmas carols for her and the hymns she had chosen for her funeral. Her meditation group came in and sat with her on several occasions. She made her plans and made sure we all knew what they were. I am heartbroken at the loss of Patricia, but will always be grateful to the people who made it possible for her to end her life in her own home.

  99. Kim says:

    I feel as Ram Dass does. This is a sacred moment to be shared with those we love and who love us. We should not leave them to languish, conscious or unconscious, in pain or in fog alone until the end. I want to be there for this very precious moment, this transition into the next phase. It is a moment to be celebrated the same as when one enters this world.

  100. Rebecca Swinton says:

    It’s the fear of death. The unknown. We don’t want to let go. I have felt that way about my mom. Sent home with hospice. My father had passed 3 years and 3months to the day. I said we should have done more. If we just made her eat she would have come around. I am guilty of wanting to hold on and not let go. I knew she missed dad. Was in pain. Wouldn’t or couldn’t eat. I have a little better understanding now. Thank you for sharing.

  101. Mary Taraba says:

    So perfectly written. I recently lost my husband, who was in a nursing home for rehab. I had requested so many times that they close the vent in his room due to him being so cold. They never did. He never got a bath for 5 days and when they did bathe him they shaved him and shaved his mustache off that he had worn for 60 years. When his time to go came, he was taken to the hospital where he passed away. He died from pneumonia in both lungs and had an anuryism. We had talked about when our time came to die, that we wanted no machines to keep us alive. They abided by our wishes. It is hard to make a decision whether to use “keeping alive” methods, but I knew what he wanted.

    • Georgia says:

      I’m sorry for your loss. Your story sounds exactly like mine. My dad was in a nursing home for rehab. They too shaved his mustache off that he had for 60 years. He died in the middle of the night alone. He had emphysema and probably died of a stroke. He had a feeding tube and if it was up to me, I wouldn’t have allowed it. He was a chef you see and that was his glory. There isn’t any part of you that doesn’t get stripped away and this article says it all.

  102. Gail zlotky says:

    I had to put my mother in nursing home she was only in for last 3 days because she was to large for us to move. But I did not allow the feeding tube catheters etc. I tried to give her dignity as much as possible. She did not die,alone.
    Most people are to busy to take care of family plus the emotional drain is crushing since we avoid or drug against emotions here we are. But remember you get what you give. Maybe if employers would work with people to allow time for this. But hourly paid people cannot be off work or then afford help…..money drives every choice. what is the answer………..

  103. Linda D says:

    I have been a nurse for over 40 years – thankfully many of those years in a small rural hospital where we were allowed to provide the patient with what they needed and wanted in their final days, not what modern medicine demanded. We knew our patients well because we had cared for them and their families over the years when they came to see the local doctor or were hospitalized for births, illnesses and accidents. We had “palliative care” before it was popular – allowing families to come in at any hour to be with their loved one, to sing, pray, laugh and cry with them; to bring food from home, the family pet, the grandchildren who played in the room or on their bed, and friends who visited and talked about the good times gone by. We had family photos on the wall, favorite keepsakes in the room and we tried to ease their passing in a caring and loving way.
    What a disservice to our elderly when all these small facilities were closed and those who had sacrificed to have a local doctor and hospital back in “the old days” and these people were sent off to the big city to end their days in huge nursing homes where they knew no one, where their elderly friends could not drive to see them, and where – in spite of the good intentions of those working there – they felt alone and just another number in the big wheel of medical care. This article is excellent – it serves as a reminder that death is indeed a part of life and we should honor the lives of the people we serve as caregivers by using modern technology to cure the things we can cure, and by keeping them comfortable and at peace as they face the end of their lives.

  104. Diane says:

    When you live very far away and a parent is unable to care for the spouse, it becomes necessary to put someone in a nursing home. I understand what the story is about. My mom died in a nursing home under hospice care. She was there for 8 years because my dad could not care for her at home Three years later, my dad suddenly became ill and went into the hospital. I flew in on the last incoming flight during a blizzard so I could have all his tubes and breathing machine pulled. My brother & I stayed with him until he died. My great-grandmother died at home with her daughter and grand-daughter present. My grandmother hung herself. My grandfather died at home alone of a heart attack, my uncle found him a day or 2 later. My aunt died at home alone, a couple of days later a neighbor found her. So there are many thing to consider and many things that are out of ones hands..

    • Gess X says:

      I understand what you are saying. I don’t agree w/all of it, but I do see your point.

      “there are many thing to consider and many things that are out of ones hands..”. Agreed wholeheartedly.

      “When you live very far away and a parent is unable to care for the spouse, it becomes necessary to put someone in a nursing home.” Perhaps, but seldom is it due to living so far away.

      There are certainly circumstances where one literally must remain that far away. In such a case there may, or may not be, any other option, but that is seldom the case. Though there are situations, such as a child being incarcerated, exiled, or too sick themselves to return and care for their parent(s), and a few other rare instances, they are few and far between. They are also the extreme, and most people understand that such cases are the exception…I believe.

      From my experiences, of people I know or have associated with, living 1000’s of miles away is not what prevented them from taking care of their parent, when the parent needed taking care of. Rather, of the ones that attempted to use living far away as a reason, and to comfort their own feelings, and conscience, none could honestly succeed in justifying that attempt.

      Occasionally parents move off, and away from where they had raised their children, and perhaps away from anywhere near where any of their children currently abide. Most times though, it’s the child(ren) that move away. The first really isn’t a reason to justify not taking care of the parent, and the second certainly isn’t. The parent didn’t choose for the child to move so far away. Not in most cases anyway. The child should have considered the parent’s well-being, and what it could require later on down the road.

      Again, of my experiences, of all the times something similar to distance being a factor, it actually wasn’t. It was greed, selfishness, and being more concerned w/their own desires, and usually their way of life, than they were w/the condition of the one(s) that brought them into this world, nourished them, clothed them, and provided for the way of life they now live. See, of all the ones I know, all could have moved back to where the needful parent resided. Maybe not in the same home, but very close by anyway. None were forced to live where they did. They chose to remain there. Most because it’s where their job was located, or it’s where they had raised their family.

      Most actually try to justify it by saying those things, and I have started, or built, a career here. I can’t just up and leave it, or my kids are in school here so I can’t leave. Well, so what!? Reckon that parent, that now needs help, considered their loss, or what it would cost them later on, when that child was deathly sick and the parent had to take off work to care for it? As a result of the parent taking off from work it lost its job and wasn’t able to return it making an income. It couldn’t find work either. Did that parent forsake those children, or did it put the child first and care for it? Why then should we put our own lusts, desires, greedy wants of earthly possessions and comforts, above our parents dieing as peacefully as we can possibly make it? IT SHOULDN’T!!

      If the child lives far away, and the parent needs help to stay at home, that child should pick up and move to where the parent is located, in most instances. Occasionally the child may not can leave, but could care for the parent if it were near the parent. In such cases the child may have to move the parent to where the child is. Point is there’s nearly always a way to keep the parent in home, care for that parent, and see to it that the parent doesn’t waste away in a facility. It may take a drastic cut in income, some discomforts, a change in the way of life accustomed to, and sometimes going from being extremely wealthy to being dirt poor, but most times it can, and should, be done.

      Living far away is most often just a copout, and not a legitimate reason. Again I realize that in rare cases distance can play a factor in parent’s care, but very rare cases. Most times what it all boils down to is the child’s actual cares, priorities, and concern for their parent’s comfort and well-being

      Move back and make it all worthwhile…to the parent. In return it will be worthwhile to the child. The memories alone will likely provide an ease of mind, and contentment for the relocation and sacrifices. Knowing that the parent’s last days on earth were as comfortable as you could make them, should definitely give contentment, and ease of mind; regardless of the career that was forsaken.

      There are very few instances of distance being an issue. That’s because, of most instances, that distance could be removed. It’s the child’s greediness that is most often the cause, when distance is a factor. Not always, but most times.

  105. Lynne says:

    How timely. My FIL is currently being ‘kept alive’ against what would have been his wishes, with no future of any quality of life should he ever regain consciousness. Given the choice, I would let him go. It is the selfishness of those around him who have put him where he is now.

  106. Karen says:

    I had the awful position of making the decision of my fathers future after he suffered a hemorrhagic stroke.
    I chose him- I took him home to his house, his family. His comfortable loving family.
    I gave dad the death he deserved.
    His death was as he lived, his way.
    I chose love over a machine- EVERYTIME

  107. This article reminds all of us to have a trusted POA (mine is my daughter who is a nurse) and talk alot with your children or family about exactly what you want in care and what you don’t want. I learned this by working in long term care for 35 years. Doctors are obligated to extend our lives as long as possible and it is our job to let them know what to do.

  108. Kerry says:

    I wholeheartedly agree. Having said that, my mom is in a nursing home because of her dementia. The staff keep her safe & she knows them better than she knows me, her own daughter. Dementia robs us of the opportunity to die at home amoung loved ones if you have a very small family like me. I couldn’t take care of her at home & still work.

    • Marie says:

      Prayers for you…we are in the same position. Out mom has early onset Alzheimer’s. We never wanted to move her to a home, but there came a time when it was more than we could handle to keep her there safely. She ended up with a broken shoulder and Suboxone in her system from the first nursing home…so we moved her to one that is further for us, and almost impossible during the winter months because of the mountains..but it is what was best for her.

  109. 2A Supporter says:

    An aunt had a stroke and the only thing that happened was a nursing home corporation kept her alive enough years there wasn’t enough to bury her or fulfill her wishes to leave some money.

    I bluntly told my Dr. to shoot me.

    If your went to IU you may have been in medical school together.

  110. leigh jones says:

    We have a choice and we need to make sure those around us know what that choice is and we need to make sure it is documented in writing in a legally binding form. I have. There will be no nursing home for me. No long term care. The last days of my life will be wherever I choose to be if I am able to move about freely. If not, then it will be wherever I drop, but not in a hospital. There will be no funeral nor memorial service either. (what a waste of money!) And what is left of me will be used in any way possible to help someone else. If nothing can be recycled, then the rest goes to the teaching hospital so that the young student doctors can gawk at my scars, and marvel at how darned good I looked for my age. I hope they laugh, make jokes, and learn something from the life written all over my body. I don’t understand why the article didn’t point out some of the choices we do have.

  111. vivian donahue says:

    Very beautifully put. There was another article that said very much the same thing by Jane Brody, in December in the NY Times in December, of 2003 Facing Up to the Inevitable, in Search of a Good Death. It surprises me that in all this time, modern medicine still hasn’t learned anything….

  112. Ms Mary says:

    Quality of life far surpasses quantity of existence
    Death with dignity is as natural as giving birth;
    Alas LOOK at what the medical profession has done with its exploits.
    TAKE CONTROL
    Wake up to reality people and turn off the TV and start experiencing life, love and mankind

  113. Debbie says:

    So true we should allow people die as they please. No help from morphine in less there in pain

  114. Patti says:

    This makes me crazy- physicians , stop offering futile care to cover your liability- grow a heart – hold a hand – say I am sorry- and offer real comfort like the old GP who used to come to the house in the olden days when physician let people die at home

  115. Steve says:

    A doctor friend of mine in a rural area would home-visit terminally ill patients daily to ensure their comfort. When he knew that their pain was too much for their overall comfort, welfare and well-being he would leave a bottle of strong pain-killers on the bed-side table and tell the patient to take whatever was needed to assist with pain relief through the night. He also warned them – in the strongest language – not to take too many at the one time as it could be fatal, with a wink of the eye and a farewell squeeze of the hand. Invariably he would receive a phone call from family the next morning to say that his patient had died peacefully during the night. Cause-of-death (original condition) certificate issued. Patient at peaceful rest. Life goes on.

  116. Chad says:

    As I read this I am sitting next to my mother who is laying in a hospital bed at a nursing home dying in front of me.i want to thank you for your article it was very well written and so true.My mother has vascular dementia,has had it for almost 3 years it’s a terrible terrible disease.

    • Ruth says:

      Mum had dementia the last year was awful, she was so unhappy confused and angry she was in care and on night she just died, thankfully. Hugs to you at this very difficult time

    • Marie says:

      I’m so sorry for what you are going through..my mom is also in a nursing home…started with vascular dementia..then early onset Alzheimer’s. …we had to move her to a nursing home almost two years ago. It’s easy for people to say they will never be in a nursing home. My mom said it and we vowed to never put her there…until she got worse and started to wander. My sister was with her 24/7..but she was sneaky. It is unfortunate that there are no programs to help pay for in home care like they do for nursing homes. We did sign a DNR for mom…as much as we love her and can’t bear the thought of losing her, we just want her to find peace..physically and mentally.
      Prayers for peace for your mom and family.

  117. Laurie W says:

    Thank you. Simply thank you for the proactively perfect essay. Nothing that I have ever read about the elderly, the dying or our approach to either matter has been more perfectly stated. I agree with every perspective herein.

    I have worked in hospice care for nine years, have experience working in nursing homes, and as a mortician and this article is profoundly accurate.

    Thank you

  118. Jamie Bales, MD says:

    This is lovely Lou. Thank you!

  119. Sylvia says:

    I do want to go gentle into that goodnight, No fighting it. I just don’t want to die of sucoffation or thirst but any other way that is painless and not prolonged is great.

  120. Debra Flick says:

    This is such an emotional subject for me. Having worked in long term care for many years , I supported many families who allowed their loved ones to have a natural death. I also took care of many who were kept alive because of unresolved family issues, another family wanting to keep their mother alive with IV hydration while they took their cruise, and others who just could not let nature take its course.Elderly forced by their families to go to dialysis 3 times a week,who begged me not to make them go.I read all the comments thru tears.I ‘ ll take that corner room any day .

  121. Paula says:

    This article is beautifully written, and I agree with much of it. I do not believe in so-called heroic efforts to prolong the life of an elderly person who is ready to go. However, the peaceful, beautiful scene of the sweet old lady dying at home next to the window with soup simmering on the stove glosses over some of the harsher realities of care giving. I cared for two parents with dementia for almost five years before both went into a nursing home where they shared a room. There were many times when I thought I was going to lose MY mind during that period. Dementia is very, very difficult to deal with, and my mother’s neurotic obsessions were overwhelming at times. Then there were the many calls to 911 when one of them fell, and we could not get them up off the floor, the nights spent in the emergency room due to yet another urinary tract infection, the time spent cleaning up poop and urine from them, their clothing, and the bathroom floor, the difficulty of moving someone who was basically bedridden and unable to stand, Perhaps a more “earthy” person could have handled the bathroom issues with aplomb; for me, the smell was sickening and I was constantly fighting a gag reflex. The deeper my parents sank into dementia, the deeper I sank into depression. The bottom line is that every care giving situation is unique, and so are the people who do the caring. Daddy passed away this past year from a urinary tract infection that became septic in a matter of 3 days. We did not continue the antibiotics after the doctor told us there really wasn’t much hope, and even if he did survive, he would be much worse off than he was before. I do not regret that decision; I knew it was what he would have wanted. Do I sometimes feel guilty that my mother is in a nursing home? Yes, of course. I have two sisters; all three of us are retired, and yet none of us feel that we can give Mama the care she requires at home. We visit often and bring her home for visits when we can. I hope she and the good Lord see that as enough. I know one thing for sure; I would far rather end up in a nursing home than to become a burden to my son and daughter-in-law.

    • Ron Newlin says:

      God bless you, Paula. I scrolled through this whole thread thinking about people in your (and my) situation. The hospice program at the local hospital is a godsend to my mom (who is on her deathbed tonight) and to my family. And I agree; while I approve in principle of the position of the author of the original post, it occurred to me immediately that the idyllic scene she painted did not take into consideration the patient soiling sheets, and then screaming in pain as her loved ones moved her and cleaned her without the benefit of a morphine drip. God also bless the staffs of hospice programs.

  122. Marianne says:

    It is not always as clear cut as you make it seem. Sometimes you are holding onto hope. A hope that God will show you what He has in store for your loved one. Sometimes you are trying your best to keep your loved one alive as he or she struggles to get better. God bless all of us to make the right decision.

    • Mary says:

      Alive on earth or forever with the Father. Don’t judge yourself harshly. It’s all for his glory.

    • I totally agree with you Marianne! The picture painted by the author is a beautiful scene full of caring family members and a dignified end to a well lived life… However, each case is unique and must be handled as such. What must one do when there is not peaceful end? When you have one who chooses to go on a trachea ventilator, because they are not quite ready to meet their Maker? We brought that family member home and we did the very best we could right up until the end, and I must say, we did an excellent job considering we got no help from Hospice nor any home health nurse. We didn’t even have a respiratory therapist, even though a ventilator was in place! But we did it, and we did the best we could…and he lived for 22 months, even though the projected life expectancy was only 9 months. God determines when they leave here. We do our best and do what is best when we have the say so, but for those of us who are following the wishes of a loved one with a sane mind, we must often weather this storm until things are made right with God and they are literally READY to go on to their forever home. I would have loved it had my loved one had that sort of peaceful, dignified end, but it was his choice and I simply did my utmost best for him with the circumstances at hand. Every case is different, every patient unique. For those who can have that loving, peaceful ending…it is indeed a blessing! For those who have to take a different route, it is all for the glory of GOD, and the caregivers just do all they can with a loving heart and willing hands.

  123. Betsy says:

    Very well written and I agree.

  124. Katie says:

    Thank you for this beautiful article. My dear father-in-law died almost three years ago of ALS. Unable to swallow and speak, the doctors still gave my mother-in-law a hard time for not allowing antibiotics for what was his final round of pneumonia. They were appauled that she would not take those life saving steps. But we are descendants of Dr. William Osler who called pneumonia “the old man’s friend”. Our beloved Grandad died at home, comforted with palliative care, with his family making dinner for his grandson’s birthday. I hope to be so lucky.

  125. Mary Lou Adams RN says:

    I worked many years in the ER. I have asked the Doctors many times why they were “beating the Angels off with a stick”. It is such a disservice to the elderly, especially when they don’t even know they are in the world. I actually heard a patient’s daughter say ” you’ve got to keep her alive, we just got her check started”.

  126. Michele Stehling says:

    My father in law passed away just yesterday in a nursing home surrounded by family. His passing was the first death I had ever seen so I read your article with great interest. (my sister sent me the article) Fortunately his death didn’t involve pounding on his chest, feeding tubes, or other lifesaving measures on his 92 year old body. Instead the hospice nurse that had taken over his care for less than 3 days suggested we stop the oxygen and let his body be in charge. He took his last breath 2 hours later. His family was with him the entire time and for me, I observed what an amazing gift our bodies are. I am thankful for the gift he gave all of us at the end of his earthly life. He was able to pass with dignity and grace.

  127. Dr Alice says:

    As a primary MD I have had the opposite problem. I cannot tell you how many times I have begged family members NOT to request tube feeding placement for their loved ones with dementia. It has gotten so bad that our GI department now has a protocol that they review all requests for G tube placements and will refuse them in such cases. And we give all our patients over 52 advance directive forms. I tell them please to discuss with their families and make it clear what they don’t want (in order to take the burden of decision making off family members). Honestly I am not sure how much it helps.

  128. Jalaine Britton says:

    My mother died in the hospital with all the family being there in 2012! I always ask God why did u have to take my mother just a few days past my birthday nd my daughters birthday! To this day I am still depressed that I have lost the most best friend I ever had! I miss it every day waking up getting my kids off to school having a cup of coffee nd calling my mom every morning! We always went shopping together! I hope some day I can heal myself from that pain of losing her!

  129. Angela says:

    My mother in law passed away last June. For years and years she told us no tubes or machines, etc. When it came down to it she didn’t have a DNR and had to be brought back twice while family members were not there to help in the decision. All of the children knew what she wanted but when she woke up and her proxy asked her she wouldn’t agree. She was terminal but she was afraid. My sister in law, with her siblings blessings, had to wait until she was not able to make that decision for herself any more and sign the paperwork for her. She lasted in the hospital on a ventilator, feeding tube and bedridden. Then 6 months later, my husband died suddenly of a heart attack at home. The more I look back I think he had been having smaller heart attacks or symptoms of them for more than a day – and he knew it. He didn’t want to be in a hospital or nursing home. Didn’t want to die like his mother, hooked up to machines. He fell dead at my feet after I finally convinced him to get out of bed to go to the hospital for his head cold (yes, he really had that on top of everything else). It’s a shock to me and my son but it is exactly how he would have wanted it. Quickly and at home. When EMS came in the first thing they said to me was does he have advance directives and did I want them to try to bring him back. I hesitated but my son said yes. He didn’t come back. He was 48.

  130. melinda caldwell says:

    They DO also have hospices. A friend of mine died in one – where they make you comfortable and keep you on morphine so you have minimum pain and can die with dignity and not in a noisy hospital or nursing home where they treat as just another patient! You have to check your cities for them!

  131. MindyB says:

    But you have to realize…even the non-invasive treatments that are given to geriatric patients today (i.e. medications) are prolonging their lives past the times when death came for you on your front porch. Where do you draw the line?

  132. Amy says:

    I pray my children know enough about my life to respect Gods timing and allow me to slip away in that corner room.
    My prayer for my own mother was the same and although she wasn’t home, none of us knew how close she was, there at least we’re no noisy machines or pounding on her frail chest. Just one deep breath that carried her to The Fathers arms. It was an answer to prayer. It was everything she deserved.

  133. Cindy says:

    How do I go about following you on Facebook?

  134. Nana in Canada says:

    An excellent article. I would like to also recommend reading Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande. I’ve had the conversation with my adult children – no prolonging in any way… While I’m thoroughly enjoying my life, I’m also fully prepared to ‘go home’ and that in all fairness all around, they too need to be fully prepared to let me ‘go home’!

  135. Claire Eckenrode says:

    Hope everyone reads this article and remembers it when their elderly relative is dying. I finally left ICU nursing after 28 years because I couldn’t take torturing the near- dead anymore. The worst invention of medicine has been the nursing home….too sick to be independent, too well to die. It is limbo……purgatory in the truest sense.

  136. Tracy says:

    Reblogged this on Dal Segno.

  137. A brilliant article, thank you. You have summed up beautifully how I see the dying process in the UK, having watched my elderly relatives go in this way, I know it is not how I want my final years to be.

  138. Susan says:

    “It’s time to go home” Susie, these were hard words to hear ( as my Daddy would say, when he knew I needed to take my 4 young children home after a wonderful day of visiting with he and Moma)….but even harder words to say to Daddy that day in Newnan Hospital when his body was tired, weak and ready to go. It has been 21 and 18 years, miss he and Moma very much, but would not call them back to have to go through any more medical issues that would have come. As a nurse I was with many a family as they were in this position with their loved one, praying for families touched by having to make these decisions today.

  139. Dad says:

    This is good to read! Educate yourself and know this is what I’m giving by being here instead of you or mom someday in a nursing home. Which I do NOT want to happen EVER!

  140. A wonderfully written article – the point hits home when I realise that too many people fear death.
    It is the fear which needs to be dealt with. Once the fear is gone – and perhaps the pure selfishness of those who insist on maintaining the dying in this ‘shell-state’ – many of the issues raised in the article above could disappear altogether. But to dispel the fear, we need education – based on real information shared by those prepared to tell the truth.

  141. a grateful daughter says:

    My mother just passed away under scenerio #1. I am very glad my sisters were able to care for her until the very end. She breathed her last and then she was gone. She was at peace and happy because that’s what she wanted.

  142. Winnie jackson says:

    Sometimes I think people selfishly keep alive those who would love to just go home and be finally at peace because there are unresolved issues THEY have. I love this article. I agree with all of it and plan to share with everyone I jnow

  143. I’m terrified I’ll end up in a state-run home somewhere after suffering a stroke and be kept alive for years before being allowed to die. That’s what happened to my dad. It’s happening now to my mother. I don’t want to live if quality of life is compromised this severely. We need to change how we handle the end of life, because in the end, it is my life, and I want to say how it happens.

    • Pamela says:

      Theo, then have an Advanced Directive and appoint someone to have the power to make medical decisions on your behalf that you have dictated ahead of time. My mom has done this and my husband and I have done this. We want to die like scene #1 and not #2. We are protecting our children from having to make the difficult decisions that would create scene #2. Then, submit copies of these forms to your family, doctors offices, the hospitals and carry a duplicate in your wallet in case you are out of town. Because of my mom’s advanced age, we also have a DNR posted on her wall, in our wallets, at the doctor’s and hospital so that she doesn’t end up like that either. There are steps you can take to make sure you don’t end up like that.

  144. I believe we try to extend the lives of our parents (in this way) because—out of busyness—we have neglected to spend quality time with them on the front end (of life). Guilt, fear, and anxiety fill us when we haven’t lived a life that matters—a life of peace and contentment. Sadly, our parents pay the price when we finally realize our mistakes. Thank you for such a thought-provoking article.

  145. Dee Bee says:

    I don’t understand why Medicare won’t pay for at-home care by a nursing assistant, so that the elderly can stay in their own home. Most people can’t afford to pay for that out of pocket. Putting a person in a nursing home is a hell of a lot more expensive per day as opposed to keeping the elderly at home and paying for a part time or even full time CNA to help the family with care that they may not be able to do. You would think Medicare would be interested in saving money! Instead of $400+ per day in a nursing home, they could be paying $100 a day to keep the resident at home.

    • Ms Megglesworth says:

      I have wondered this also. It would make much more sense. My hope is that as Boomers age and physical space becomes limited, then options like this will open up. It’s the same question I have about homebirth – way more affordable; why won’t you just cover it?

    • Laurie Phelps says:

      Caregivers are not considered health care providers. The way to ensure this is to Invest in a good long term health insurance when you’re younger. Medicare does provide hospice care, but that does not include caregivers.
      As a hospice nurse, I wouldn’t do it any other way. The public needs to be educated about “good deaths vs bad deaths”

    • phillip woodward says:

      it is about time medicare paid this treatment. HOME CARE

  146. I have an elderly cousin who has been subjected to scenario #2 despite my pleading with her sons to “leave her be!” I’m a retired hospice nurse and saw many cases of scenario#1. Gratefully I could provide proper end-of-life care to my parents and husband as well. But watching my poor cousin being subjected to this “medical” treatment has been the most torturous thing I have ever seen.

  147. Louisa says:

    This is wonderful. Your perspective is profound. I have been amazed and grateful when patients and their families are prepared with DNRs and advanced directives and can bravely follow through with them when the end does come. And I’m very proud of hospice nurses who can help patients in their homes to have a comfortable, dignified death.

  148. Leon Thiart says:

    My mother passed away on 2 October 2015 – in her bed, in my house, in my arms, with her oldest sister holding her other hand. She was sick with pancreatic cancer and wasted away untill there was almost nothing left of the once wonderful woman I called mom. I cared for her as best I could, I made her comfortable, and in the last few days I got the home care people in who was wonderful, they bathed her and changed her nappies and made her comfortable. She was compus mentos untill the very last moment of her life, she hated hospitals and when the doctor said I can have her submitted I said no, I’ll take care of her. My mom was a decent women and I felt she should be respected as such until the very end so between me and her sister and the ladies from the home care we made her as comfy as possible. The family and friends came for months to my house to visit her, brought flowers and closer to the end everyone had a chace to say goodbye – we knew it was just a matter of time. Then the Angels and friends and family arrived to come and fetch her (she spoke to some of them by name and we could see her looking at people we couln’t see) we were there holding her up and holding her hands and whispering our goodbyes as she left her body changing her address to “Heaven” in a blink of an eye. I’m crying now as I’m typing this and I’m a 50 year old man!!! For long I thought I should have done more to keep her alive longer but in hindsight I did the right thing, her suffering was “short” and not stretched out because of technology and weird medicines. She was 73 when she passed over and she had a good life and was happy and comfortable when she passed, and that gives me piece of mind. My mom always said she doesn’t want to be kept alive by machines etc. when her time comes I must let her go and I did exactly that. We all have a life time on this world and when it’s time, I feel, we should be left to go. In many instances I think it’s just not right to keep a person alive for the sake of keeping somone alive and not letting that person actually have any life because of machines etc. This is just my opinion.

  149. Joyce Bakshi says:

    Yesterday January 24, 2016, my husband of 48 years went into a skilled care nursing facility to rehab. A week ago he had total knee replacement. Paper work was a mile high. Last page – DNR – Do Not Resuscitate. NURSE says you want ALL measures right? WRONG we say in unison! But he’s fine she says. He’s young (78 but that doesn’t matter) cheerful (that matters), nice (???) and this is the best one …he doesn’t look old! I said right! He’s 78, he is cheerful and yes he’s a nice guy AND he still works (from home) 30 hours a week, swims a couple of times a week and plays plckle ball 3 times a week, and she was right he doesn’t look a day over 70! That’s the point … that’s how he wants to die (God willing) . No tubes, chest pounding, machines etc, when the time comes, he just wants to leave.

  150. Stevefromsearcy says:

    Perhaps there would be more of “simply dieing” if there were “closer” relationships while LIVING. Perhaps the heroics come from family that are no longer connected and feel somewhat guilty?

  151. Randy says:

    Good Read on Dying

  152. Maxie Grant says:

    My mother and I saw my grandmother off the old way: at her home, surrounded by people she loved. There was no heroic last dash to fight off the cancer, she was in her late seventies. I won’t allow myself to be put in suspended animation either.

  153. Martha Aiken says:

    There is a show on HBO called ‘Gettin On’ that focuses on life in a geriatric ward and stars Laurie Metcalf that drives this point home

  154. Nancy says:

    God Bless you !! This made my day !! We need the old days back !!

  155. Franjesca Jackson says:

    I’m an ICU nurse. I see scenario #2 far too often. I’m a passionate advocate for quality end-of-life care. Unfortunately, many health care teams aren’t “comfortable” having realistic conversations with families. On the other hand, some families aren’t receptive of difficult discussions. Sadly, our elderly and chronically/terminally ill suffer in the end.

  156. Dick says:

    This is a flowery fantasy. In the old days, the elderly died peacefully at home surrounded by love ones and taking little sips of homemade soup. Nonsense. They were more likely to die writhing in pain having fouled the sheets, having been a devastating burden on relatives.

    The author’s point that we artificially extend life for too long is well-taken – no argument about that. What we have here is an example of a “false dichotomy.” There are more than the two choices of doing nothing medically and doing everything. Hospice, euthanasia, assisted suicide, and Do Not Resuscitate instructions are examples. For the conspiracy minded, there are always Death Panels.

    • jmc says:

      Thank you Dick. I would like to know all the commenters’ experiences and if they have really had to deal with a loved one dying. I was getting angry until I read your comment. My 92-year-old mother’s body was shutting down and we knew she was going to die within a day or two if she didn’t receive a surgery the doctor’s gave us the choice to make. We were given the choice to put her through a surgery that might prolong her life but could also likely kill her. We opted to let her go. I spent the remaining days with her in a hospital room. The hospital was amazingly kind during the process. No extraordinary measures were taken except to give her morphine to ease her pain. I can still remember listening to her moan and cry, and this was while receiving plenty of morphine. Your words help me to know that what I did was the absolutely right thing to do. While I would have loved the fairy-tale passing that the article describes, it would never have happened that way — much more like your description.

    • Sally says:

      Dick, I agree with you. I doubt very many people die that peacefully. I’ve seen writhing in pain their last few weeks/months of life. Dr Profeta gives two extreme examples. There is so much more in between

    • Maureen says:

      Thank you for being the voice of reason here! What he is describing in scenario #1 is for most of us a beautiful fantasy! We don’t usually get out of this world that easily. What if your loved one suffers from Alzheimers? They most likely aren’t going to stay propped in that lovely bed waiting for a sip of soup! They probably will have been painting the walls with their own feces while you’re making the soup. While you’re cleaning that up, they’ll be running out the door into the next emergency. Come on! I know this is just one more possibility out of hundreds, but it is usually much more gut wrenching than he describes here. Doctors need to take the lead in these situations, when there is no real hope. They see this daily, or weekly, while the relatives of a dying patient are experiencing this for maybe the first time. There are surely many things worse than dying that happen to patients in a hospital. Palliative care is a very useful tool in the doctors toolkit. When used appropriately, it can bring that quality, & comfort to a patient’s last days.

    • Dawn says:

      I was very lucky, my mother was able to pass . . . ‘the fairy tale ending’ as referred to . . . she went peacefully, with her family around her . . . what a blessing!

  157. Teresa Albrecht says:

    One of the biggest reasons I became a RN, was because of having had extremely preterm twins who were basically “tortured to life” in a NICU, one left severely, multiply disabled and medically fragile. It was horrific beyond belief watching this so-called miracle medicine bring this one fetal infant back from the edge. Surgery without anesthesia even, because the belief then, was that these tiny ones didn’t feel pain (thankfully in recent years, this has been discounted). . I’ve intervened, and have been listened to, because of my medical background in the last chapter of both of my parent’s lives as well as my daughter’s life. People for the most part, just don’t realize how brutal medicine can be at the end of life – or, in the case of extremely preterm infants – the beginning of life.

  158. I’ve often told my wife- if I’m dying, please bring me home. Put me in bed, turn on some worship music and open a window so I can smell fresh air while I go to be with Jesus.

  159. Sara says:

    I hated what all the doctors did to my mother! She wanted Hospice they talked her into “more” time. Which was spent with her being miserable in hospital next to a screaming woman for a week. Covered in bruises due to poor phlebotomists. Only one Doctor told her it was ok to let go and die if she wanted to. From diagnosis to the end was 23 days, most of which were spent in the hospital. Made me be very clear to my spouse, let me go!

  160. Barbara West says:

    I agree with this idea – wholeheartedly. However, not so for my 86 year old mother. She calls 911 for a cold. Her favorite outing is to see a doctor and she will pass on a visit from our to family.

  161. Mikal W. Grass says:

    My father died 15 years ago. The sicker he became the more he bemoaned his situation and the enormous amount of money spent on keeping the dying living, instead of the living living. When one of his friends died from a brain tumor, my father told me that he was jealous because living as he was, was not living. My mom, who is not quite in the same boat as was my dad, thinks the opposite.

    When it is my turn, I told my wife that I want to say a quick good bye to her and the kids to tell them that I love them and thank them for a wonderful life, and then I want to head on to the next adventure.

  162. Juliana says:

    So true! I work as an RN in a nursing home and it breaks my heart to see someone trying to die but the family not willing to let go. Their hearts are in the right place but they don’t realize how selfish their actions are. I think one solution is to leave the decision making to the professionals. Working in this field I have come to despise the Internet and Google!

  163. Adrian Iveson says:

    I cry wishing I had the strength to take my mom back to her apartment to die. When I took her there, she looked around, pet her cat a last time and asked to go back to the attached hospital as she was weak. Mom was a victim of holiday death, where doctors are busy and switch hours and there is no one to help guide you through decisions. When she told me not to be mad but that she wanted to go and be with Jesus and drive that pink Cadillac in heaven, i told her there would be no more tests, no more prodding, no forced feeding would occur. I would be there to keep them from extending the pain of life. I called in hospice. Thank you hospice for being the ones to stop her pain. She slept for two days without pain, and each day I watched her favorite programs in her room with her, talking to her knowing she knew I was there with her. After the last show I looked over and watched as she silently took her last few breaths, as if to say, the show is over, time to go. It was beautiful. My biggest regret was it was not at home. One day we will have a system that can guide one through death instead of prolonging that process.

    Thank you for raising this issue!

  164. Kim says:

    There is no glory in refusing to have a loved one hooked up to machines to sustain their life. It is not an easy choice even when you know it’s what they want. Especially if they cannot tell you that even just one more time. They have been very clear in their wishes. To be the one who tells the doctor and nurses that there are to be no machines, no feeding tube, no water, just medication to keep them comfortable is a heart-wrenching, horrible thing to do. And one I still struggle with 10 months later. I know it was the right thing but that doesn’t make it any easier. There is no glory in this except that my father is not a living ghost without quality of life.

    • mrs w says:

      My father passed away last year in April after 56 days in the hospital after an elective surgery. I had to fight for his surgeon to let him go for the last two weeks… you are correct I know it was the right thing to do, but it haunts me to this day… Hardest thing I have ever done… Prayers for you and your family…

  165. Bobbye Eachus says:

    Thank you – Well done!

  166. Jacinta says:

    This reminds me that day that my dad and my siblings had to plead with a doctor to get my mom off the machines.Thank you

  167. R.N.M. says:

    We can argue that medical technology never should’ve been invented, but it’s here now. To have scenario number one, we must actively reject measures that could keep ourselves and/or our loved ones alive longer. If using them means a downward spiral of torture, that’s one thing; if using them means taking advantage of a stop-gap measure which will enable recovery and a return to “qualify of life,” that’s another. It’s impossible to know which it will be in advance, in many cases. But then once they’re employed, it means removing them to “allow” death to occur, which can feel an awful lot like killing. In the absence of stated and documented wishes, this isn’t an easy call for relatives.

  168. Keith Cox says:

    This so beautifully written. Over that last week, I was with a dear friend of mine as her mom of 96 years of age was making her transition. It was so incredibly beautiful. She was in her own home, own bed, surrounded by those who loved her. We held a wake for her, while she was still breathing on her own. Later, we laughed as we believed this actually caused her to stay longer….( This because she always love a great party). 8 days 6 days after she no longer too liquids (and of course solids), she took her final brea.

    Thank you for such a wonderful article.

  169. Carole Coleman says:

    Yes it seems you are correct on all this. I will care for my mother in her place or mine as long as the Lord allows me the health to do so. I’ve seen this through with both grandparents a uncle and two aunts. Mom’s 80 now and still lives well on her own. 1 mile away from me. I call her several times a day and see her almost daily. She still cooks and is fine but when I see she can no longer be alone; I’ll be there for her. No rest home or hospital for us. Mom said she never wants either as nd she’s got a DNR. I will miss her when she’s gone but I’ll get to join her again one day.

  170. Viv says:

    Right to Die laws need to be passed!

    • Hermina Ramsaroop says:

      Reina, I’m with you. Americans definitely have it wrong. We have the right do decide how to die. And we need to make it legal to terminate life when it is no longer tolerable to live. Switzerland has such a law in place.

  171. Debra says:

    I love the story, but I fear it’s unrealistic for those of us with family members suffering with dementia who require around the clock babysitting. I tried taking care of my mom at home; her mental state prevented me from doing so. She would wake at all hours of the night and during the day she couldn’t be left alone. What’s the solution there? I wish I could help her die. She is in a nursing home and frequently can get out the words, “I’m in prison.” It breaks my heart, but what can I do????

    • Karen says:

      I think this article is not considering all of the facts and issues that people have to deal with when putting their loved one in a nursing home. How horrifying the decision can be and how awful you feel for having to make it. I am in your shoes Debra. I did everything in my power to keep my mother and father in their own home. I filed every paper. I had in home care. Medicaid was/is approved. But my mother kept falling and kept falling and was not able to care for herself. She had Alzheimers and did not have any reasoning skills whatsoever. My father could not even walk down the hallway without fear of her falling. And I even brought in home care for her and for him, so he would not be stressed. Not only did I bring in care for them, I would go over and bathe my mother, buy groceries, deal with their medication and his. But one day, mom took a fall and just did not get back her strength. We thought she was going to die. We signed a DNR. We still have one in place. We tried desperately to get her physical therapy and her brain just told her “she could no longer walk.” So she stopped walking. I had two little ones under the age of 6 and my father had health problems of his own that he could not attend to. I have two brothers who did not and to this day do not lift a finger to help. She is 5 ft. 10 inches and 200 lbs. I am not physically strong enough to pick her up, bather her by myself and change her soiled diapers. She offers no cooperation. Her muscles have atrophied. She can be moved in the nursing home only by a hoyer lift. While the decision was agonizing, my father and I knew it was the only one to make. We thought she’d be leaving this earth rather quickly and that was in 2009. She is still here. We love her dearly, but she is not the sweet little elderly lady just lying by the window waiting for the Lord to take her. I fight tooth and nail for her best care – but not for any extreme measures at all to keep her alive. I won’t even let them give her Lipator because what else could be worse than Alzheimer’s. She has no voice to even tell us if she is having side effects.

      We decorate her room for all the seasons. We bring her favorite snacks. I decorate her room with fresh flowers, and the last Valentine’s Day card my father gave her before his death. We held their 50th wedding anniversary party there. We bring in my daughters’ youth groups to sing carols and decorate cupcakes for all the residents. We visit the other residents. I pray all the time that the good Lord would take her, so she doesn’t have to live in the prison of Alzheimer’s anymore. And it is a prison. But I did not put her in a nursing out of fear or laziness. I put her there out of love. And I actually refused to put her in an Alzheimer’s unit because I wanted her to be among everyone and not isolated. So don’t make assumptions about people until you know them and have walked in their shoes. I had those “hard to have” talks with them. I made them have them with me. God willing I will be there to hold her hand. It is quite a beautiful thing to be with someone when they pass from this life to go and be with our Lord. I got to experience this wonderful moment with my grandmother – who sadly had just broken her hip and died in a hospital bed. And I got to experience this with my father as I sat by his bedside daily in his hospice bed, after him being in and out the hospital for four months. I tried to keep him home and cared for. He just could not recover from the flu and eventually died from the complications. He called the hospital because he could not breathe from COPD. He was terrified. So I don’t regret him being in hospice when he passed. He was made comfortable and surrounded by all of his family. The staff was incredibly caring and loving.

      You know what they say about people making assumptions. So don’t do it.

  172. Patricia says:

    This is so sad but true

  173. Diane says:

    Being a nurse for over 35 year,I’ve seen so much. It is disturbing to see endless efforts of tubes,needles and procedures as well as surgeries. Yes, some are needed and help sometimes,but sometimes not.Sometimes we need to accept that we are mortal and need to say good bye. There are natural ways to die and unnatural. Some are painful and some are not. There is a balance. A person knows when the time is at hand. We need to be aware,mindful of the signs and be prepared to hold some hands when family can’t be there. It’s really in God’s hands,no matter what we do. I’m glad to know that the hospital system of making money on those that suffer,is finally starting to bother some doctors who obviously went into medicine because they have a heart! That makes me happy! Now the system,that’s another story.My Mom is home with me and I will retire to take care of her when the time comes.

  174. Reblogged this on A Glimpse Inside of a Troubled Mind and commented:
    I hope that my last days are not spent in a hospital, bleeding and oozing from wounds that went by unnoticed. I want to die in a comfortable place with my loved ones close by.
    This was a very thought provoking read.

  175. Barbara Trainor says:

    I totally agree. When I worked in a nursing home a number of years ago I often wondered if these little old people whose minds were gone and dependent on us for every function would thank us for keeping their tired old bodies going if indeed they had that capability.

  176. mrs w says:

    FelixandChristina Gonzalez…Thank you for posting this. I have seen many people die in my family, some slow, some fast. This written in this post is what I finally came to terms with during my father’s passing last year. A living will on his part would have prevented a lot of the hard decisions my brother and I had to make. Make sure everyone in your families have one. Without one your loved one will enter the revolving door of God like medical professionals that refuse to do the right thing… The fear of a lawsuit is first and foremost in their minds and the heck with what the patient would have wanted or what the family beg and pleads for… no more pain, no more tubes, let my love one in peace. He/she has had a good run and no amount of medical expertise will return an old body to health after it has been tortured by the medical profession in the name of saving his life… and covering their %^^$%. I thank God for my dad had the most amazing nurses that provided us with the truth about his condition so we were able to make the right decisions… Still the hardest thing I have ever done in my life, to fight for my dad to be left alone to die in peace and not be subjected to months or years in an old people diying warehouse they call rehab facilities or nursing homes… Remember if your loved one is transfered “alive” it no longer goes in that surgeon/hospital’s record as a death which is what they are all trying desperately to avoid, especially if your loved one went in as my dad, for an elective surgery. Love to all,

  177. Julie Lentz says:

    This is so raw and truthful. There is such a thing as a beautiful death, and I have witnessed it in my profession as a nurse.
    My mother died in a hospital bed, after her dr. wanted to do heroic measures to the loveliest 79 yr old who had RA, B cell lymphoma, heart failure, and pulmonary fibrosis. How much more happy she would have been to die in her own bed and apartment she loved, surrounded by a family who adored her. She and we weren’t given the option.

  178. JoAnn R. says:

    I watched my mother slowly die, day by day, with Alzheimers for 8 years. The last 2 years were horrible to watch. She could not eat on her own, could not walk, could not talk, could not do anything she loved to do. My brothers and I talked many times about how we wished we had the option of euthanasia. We talked about being able to set a date, invite family and friends and send her off on her next adventure surrounded by those who loved her. Instead, she died alone in a hospital bed.

  179. fuzzypeg28 says:

    Thank you for this piece. It had me with tears rolling down my face. When my father died, it was in hospital, but I had the great privilege to be there with him and hold his hand as he left this world. It was a profound experience. It was only his last 2 days that were spent in hospital this way and I felt I had to be there with him, even though it was unbelievably hard to watch him slip away. My mother now is getting elderly and we are thinking of what we can do for her so that she is happy as possible at this stage of her life. It is such a difficult arena – to preserve life, sometimes/often without quality of life. It appears that there is a lot of pride in saying that people are living longer or having massive life-expectancy, or others stay alive longer despite long-term illnesses that can be hell for them. I hope that we will come to value life quality as the truest value and not fear being around our loved-ones, if we can/wish at their time of departure…

  180. peggy says:

    I just knew there would be this onslaught of judgments towards people who “don’t take care of their elderly parents”. The fact is, many people can’t take care of their elderly parents, because they are ELDERLY THEMSELVES. Many people in their 70s are struggling to take care of their elderly parents in their 90s, when they are aging themselves and have health issues. IT IS NOT EASY. That is often why they have to place their parents in nursing homes; people are living longer now. STOP JUDGING, and start learning.

  181. Caregiver says:

    What about situations that are somewhat the opposite? My dad was in the hospital recently for fairly minor surgery, and the night before the surgery he got scared from thinking about it (he has heart disease) and made a desperate-sounding plea to my mother and me that in case something went wrong, to “do everything!” no matter what.

    I was somewhat taken aback — I had been urging him and my mother to make living wills for some time now, but learned that he misunderstood a living will to be the same thing as a DNR, so kept refusing. I told him that a living will was his opportunity to make his wishes explicit, if he did in fact want them to “do everything”, but he and my mother insist that each other knows what the other one wants. So now we could be in the position of making a decision he could easily make for himself. It’s a frustrating situation. I want both of them to make out power of attorney soon, and would love for each of them to have a living will, but how do you make that happen? They haven’t even updated their wills from forty years ago.

  182. Sheree says:

    Thank you for this read, it confirms for me I am doing the right thing for my Mother. I see her slipping away at age 82 (in March) from I think is a form of dimensia. I am her full time care giver. She has very limited expressitory faculties but can live on her own, for now. People look and talk to me like I am not doing the right thing for her. I pay her bills, style her hair take her to lunch and shopping and once in a while we go to the Casino ( her favorite thing to do)! We also take walks in the summer and another favorite of both of ours is front pourch wine. A glass or two and we laugh and cry. My brother and sister have no interest in her? I am so glad and fortunate my husband is understanding and supportive!!! I knew I am doing the right thing and I wouldn’t change this time I have with Mom for anything???? ????

  183. Jeanne Flaman says:

    I was a critical care RN for years and I sadly agree that too often we prolong death instead of prolonging life.

  184. Jerrold Turner says:

    An enlightened population can always decide to reject medicines. That path requires a change of consciousness. That is happening now. Thank you.

  185. Mark Kresl says:

    As someone who works in a nursing home, I think the author lives in a fantasy land. Of course we’d all like to die peacefully by the window overlooking the lake. We simply close our eyes and stop breathing. If only death were that simple. It rarely is. It often includes pain from diseases like cancer. It often includes Alzheimer’s patients getting violent at caregivers because they don’t recognize that caregiver as their spouse or family. It often involves 24 hour care to keep them resting and comfortable. Those things are what dying is about more often than not.

    I have sat with dying residents and held their hand when no family would come. I have read to them and stroked their hair to bring them comfort. I have seen too many people die alone because they didn’t have family who cared enough to be with them. If not for the staff of the nursing homes, they would die in solitude. Nobody dies alone in our residence. We see to that. If family can’t be here, we have volunteers and staff who will be.

    Ours isn’t just a place to die. It’s a place to live the last days/months/years of your life and we do everything in our power to make it as loving and comfortable as we can.

    • Debra says:

      Thank you, Mark, for all that you do. When I go to visit my mom I always take the time to thank the angels who work there. Many of them are way underpaid for the services they provide to those in their last chapter.

  186. Laurie Mann says:

    My plan is to have the letters DNR tatooed above my left breast in a few years (I’ve had a living will since I had a surgery at the age of 50). I do not plan to die in a hospital. It might not be at home, but it probably will be under hospice are.

  187. magisark says:

    Beautifully written- and how it should be- I know mama passed in hospital as we were getting her room ready- but her surroundings were much like home- surrounded by pictures, her music, her tv shows, cards flowers, comforter. Me in and out all day and night. Me reading to her. She listened in her partial awakensess to conversations and singing. But she waited until I left to go, just like her. She didn’t want to be a bother, and this was very private to her.

  188. magisark says:

    Reblogged this on magisark and commented:
    Beautifully written- and how it should be- I know mama passed in hospital as we were getting her room ready- but her surroundings were much like home- surrounded by pictures, her music, her tv shows, cards flowers, comforter. Me in and out all day and night. Me reading to her. She listened in her partial awakensess to conversations and singing. But she waited until I left to go, just like her. She didn’t want to be a bother, and this was very private to her.

  189. Antoinette Irwin says:

    My husband died 9 weeks ago, in our home, in our bedroom, in our bed. He had told me 30 years ago that he wanted to be at home. He battled Alzheimer’s for many years and cancer for a few months. I cared for him at home with hospice care. He squeezed my hand the last day. I would not have wanted less for him.

    • Billie Albrecht says:

      My husband died 2/10/15 at home and I was by his side. Hospice is a wonderful thing. I could not have kept him home without them.

    • Sandra Brigham says:

      I’m so sorry to hear of your loss. How sweet of you to have not only have preserved his wish but to have taken such good care of him. As hard as it is to let go and all the “shoulda, woulda, coulda”s, please make room for the peace of knowing that you really provided quality of life for as long as you did.

    • Michele Corbeil says:

      Thank you for sharing this beautiful story, I am sorry for your loss.

    • Gloria Reid says:

      God bless you Antoinette. Just the way it should be “in sickness and in health”

  190. Kathleen Clark says:

    My mother was dying from both Parkinson’s and Alzheimer’s …she was in the hospital ( I forget why now)…
    The doctors, literally, were taking the decisions out of the familys control. They said ” I guess you WANT to see your wife/mother starve to death.” My poor father was beside himself. He kept saying that she would not want a surgical feeding tube. But they insisted. Finally, ( and I’m sure illegally) someone placed a call, and a physician with Hospice arrived and intervened. No surgery was done. My mother rallied for a brief time that summer, got to meet her new great-grandson ( she wasn’t quite sure who he belonged to) , and slipped away a couple of months later, at home, with her husband of 63 years, and 2 of her children beside her.

    • Mike Smith says:

      Sorry to hear about your mom, but I’m happy that she at least had a peaceful end. I have to imagine or hope that this was a long time ago. If not, I have to reassure you as a physician that this must have been a very rare exception as I don’t know any colleague anywhere in the country (at least my country, Canada) who would want to do this to an elderly person with a terminal illness. Quite the opposite, we spend our time trying to reassure worried family members that their loved one isn’t going to starve or feel hungry, and that a feeding tube only prolongs their suffering.

  191. Our society has evolved from spirituality to materialism, is chronically short of time and too busy to serve Mammon in order to pay Satan. It is called Progress!

  192. Faith Fougeron Hubbard says:

    As i sit here with the man i love dying besides me I cry as I read this he is not old enough to die. But his body has a different opinion of this. He did not want to be in a hospital and I have had much heart ache getting him home. I love this man and want him to be at peace when he goes.

  193. kristina says:

    Thank you for writing this!

  194. Margi Brooks says:

    My father made the choice to let go of this world after his second hip fracture at 86. He stopped eating, and we took no measures to feed him, but his favorites were offered just in case. We hung the DNR form over his bed in case we were away when his heart stopped. The hospice nurse came often and made sure he was comfortable. We held his hand and read him beautiful descriptions of nature written by Thoreau. We told him the best stories we could remember. His breathing was labored, and his death was not as peaceful as I had envisioned, but I was glad for our choices when it came. It took courage, and was more hands-on than many might wish for, but we had talked about it while he still could and I knew it was what he wanted.

  195. richbuckley7 says:

    I checked with my attorney on this so it must be good. What we need to start doing is modifying the incarnation soul contracts to include an “ascension option” with an easy button we can push when we’re though. 🙂

  196. Linda Screen says:

    My daughter died aged only 21 – just 8 months after diagnosis of cervical cancer. She had her treatment in the summer, it looked good but by October the pain returned. She was in hospital again in December – this time for exenterative (salvage) surgery – but when they opened her up the margins were all gone and they re-sewed her and sent her home. She could have tried more chemo- but the result wouldn’t have changed and she’d reacted badly the first time. A week before she died we managed somehow to go to Hamleys toy store in London so she could buy her 15month old baby son a build-a-bear teddy which has inside him a heart that she kissed. We’re raising her son now. Her last weeks were all at home – the hospice tried to bully us into making her go into the hospice – but after the mis-managed pain relief and everything else she just wanted to be home with me her Mum and her baby son. Every day she got up and came downstairs. Then on Valentine’s day she just had to go back to bed. She went into terminal agitation (I only knew about it because of reading the Macmillan site – the hospice never warned me) and I phoned the palliative staff there – but they just said if we didn’t want to go into hospital to see if she’d got kidney failure that they’d come out the next day with a near death kit. She died an hour later at home with me. I nearly wasn’t even with her – the hospice had given me a false sense that it wouldn’t be ‘now’. That still upsets me.

    • Patricia Benton says:

      I’m sorry your experience was not as lovingly supportive as you and your daughter deserved and as it might have been with the right hospice care givers. I have witnessed that they are not equal, unfortunately.

    • Jeanine says:

      Not always are hospice and healthcare folks as ‘care giving’ as they should be. I am sorry for the loss of your daughter, but feel that she only loves you more knowing you were her advocate and knew that you understood the importance of sharing her last moments with the ones she loved, where she was loved. God bless you and your grandchild.

    • Rita Meaux says:

      I lost my 39 year old daughter in June, very much the same way you lost yours. Even though she was in severe pain from the cancer for weeks, she was still walking and talking until an hour before her death. Our Hospice nurse got there 10 minutes before she passed, and I was able to hold my daughter in my arms and comfort her as she passed over. Nobody thought she was going to go that day, including me, we thought she still had a few weeks or months left. Even though it took us all by surprise, including Hospice, I realize now that it was a blessing. I can find comfort now knowing she didn’t suffer for months longer like so many others do. My hope for you is that you eventually find that same comfort, and the acceptance that sometimes even the medical professionals cannot predict how soon our soul will be called home.

  197. Jonette Brown says:

    Please remember tell your family. I am old, i have lived, i dont want to be revived.
    Place a Not For Resus!! On my file!!
    I have seen a dear one, have a near fatal heart attact, after suffering a stroke many years before which was very debilitating. An aged woman. To b revived and live on in pain,not understanding what was happening! Sad she wasnt let go. Left to die slowly, with no dignity over sveral months in CARE! ( I dont believe this is care) Rites to die. Be humane, let them go in peace. In memory of my lovely mother inlaw. She deserved better.

  198. Sandi says:

    I took care of my sweet Daddy for 14 years,, the last 3 bedridden . He recently passed at 88 from Alzheimer’s . I promised him he would pass at home in his bed . At 4:43 am one Thursday morning,,, I was holding his given out body in my arms singing his favorite hymns in his ear. I kept my promise . No nurse. I bathed him..shaved him, washed his hair and dressed him in his tshirt and clean diaper . Combed his hair and called the funeral home . The men came in.. One looked at him and said ” He looks so good,, like he’s just closed his eyes “. They wrapped him in the American flag. And took him out. So proud I did what he wanted . My sister was angry . My brother and I told her “Enough on him”,,, that’s my story . My Mom passed of cancer in 2004 . Same thing . At home ,,, where they should be . Wouldn’t want mine any other way . God bless .

    • Carolyn says:

      What a beautiful daughter you are. I, too, want to die at home…I want to be aware of the angels when they come for me. Thank you for writing this… I know it must have been hard.

  199. Susan Osborn says:

    This is the decision that my dad, with 100% support from my four siblings and me, made regarding my mom; let her die in peace. She did die at the hospital but she was surrounded by family. I cannot say enough good things about the staff there. They respected our wishes and grieved with us when she passed. So thankful for loving medical care providers.

    • Carol Bryant says:

      My mother died last month, following a massive stroke. My father, two sisters and I agreed with the doctor to stop the tube feedings and ivs and meds to slow her heart rate. She died 3 days later, peacefully, surrounded by family. We miss her terribly but are grateful that her wishes were honored and she was allowed to die peacefully.

  200. dandunlop says:

    Reblogged this on The Healthcare Marketer and commented:
    This is an incredibly well-written piece about how we deal with death today, versus how it was once done. Well worth the read.

  201. Elizabeth. Hill says:

    There’s a form I’ve heard about called 5 wishes which needs to go to my doctor and hospital that will dictate what my final days will be like. I learned about this recently. Sounds like the best thing to do.

  202. Tina says:

    I want option 1

  203. My father died from brain cancer. One of the worse ways to die. It was not easy or brief. It was like Alzheimer’s very much but we were fortunate that it took only 9 long months, unlike the years that it takes with Alzheimer’s. It was difficult, he was a shell of his former self. A man that had weighed in at a healthy 224 lb. now weighed 120. His muscles wasted away, he couldn’t open his eyes, and he could barely swallow. He could not move on his own and was just developing blisters from not wanting to move at all. It was hard to see him go but I am glad we had him in hospice for almost the whole time. We did do radiation, my greatest regret. But after the second operation we refused chemotherapy. It was too much. He was 69. He passed away at home, surrounded by those he knew and loved. As an only child it was very difficult. My mother was in denial the whole time. His last meal was a strawberry banana smoothie with all kinds of foods in there that he loved. He stopped eating two days before and he didn’t wake up any more. He was doped up on morphine and every tranquilizer known to man. He suffered very much, even without all the extensive medical treatment I’ve seen others through with this cancer. We did the best we could. But at least he didn’t get tubes rammed down his throat and prodded with every needle known. I’m glad about that.

  204. Carol CowperthwAite says:

    What a beautiful cometary about dying. They also laid the person out in the parlor and buried them the next day. The family took turns sitting with them talking to them and grieving and remembering. I wish with all my heart that I could go that way with my wonderful family. I really wish for a green funeral . Ashes to ashes and dust to dust. Simple is beautiful.

  205. Rita Lane says:

    This is the most beautifully written article I have ever read! Well done Dr.!! I had the honour of saying good-bye to my parents and in-laws in wonderfully serene surroundings and it is a better memory than all the bells and whistles that could have been present. They were NOT afraid of dying, they were afraid of being hooked up to machines keeping their bodies existing. This to them was NOT life. I have printed this article off for my family. Everyone should read this and talk things over with their family members. Thank you!

  206. Heather says:

    “What in the hell were you thinking?” Brilliant. That got me right there.

    My thoughts: Our culture has ‘evolved’ to the conclusion that if we don’t try to save their life that it means we are attempting to ‘play G-d’ by ‘allowing’ them to die. Because how can we allow someone to ‘suffer’ the act of death? “We MUST keep them alive! It is our responsibility to at least TRY.” Totally ignorant to the fact that the suffering doesn’t come in the passing. It’s really a fascinating change of a social psyche if you ask me.

    There is a great series by Rabbi Weinstein called the Journey of the Soul. I’ve included the link if you’re interested. You would probably really enjoy it. Great piece of writing. Thank you.

    • Mona says:

      That quote “What in the hell were you thinking” got me too. Most of us probably think if a dr is trying to prolong life & the person dies…he hangs his head in defeat…feeling he failed. And looking at it as this dr does…I guess in way he has failed…since he’s fighting a fight he doesn’t believe in. Sad.

  207. P. Max. says:

    I had lost my dad and then my sister to cancer, and my mom had her house in Florida fixed so she could move the furniture around with ease and got central air. She did not want to live with my family and I. She thought she would be in the way. I have a friend that wanted to go to Florida to see her son because she was ill I drove with her to Orlando. Another friend that was in Pennsicola was going to take me back up north to my home. I had this feeling that I needed to go to Ft Lauderdale to see my mom. The feeling was so strong I rented a car and went to see my mom. When I got there she could not walk without holding on to something. My aunt that lives across the street told me my mom had a heart attack. I descided right then and there to bring her back to my house to live. We had to close her house and get rid of a lot of stuff. I took her to all her doctors to see if she could make the trip and get her records. When we got to my house she had her own room. With everything she could need. She got strong again and she started helping me around the house. I had been in an accident and could not get rid of my pain. She was with me for 10 years. I started to notice she was forgetting things. And I always took her to her doctor’s appointments. One day on the way to the doctor she asked me where we were going. I told her the heart doctor. She said good because I am having chest pains. When the doctor asked me how long has she been having chest pains and I told him I just found out in he elevator. Mom had macular degeneration in both eyes. I had to feed her, give her baths, empty her potty chair. I did not mine but my body did. My pain would not go away. The doctor I worked for said I needed to stop working. Which turned out to be good for me and mom. I could take care of her but not lift her. She got sick and we went to the hospital by ambulance. The nurses at the hospital said she needed to be in a nursing home. I said no way. They said she did not know who I was and that she had tried to leave several times. I always told her I would never put her in a nursing home.
    They doctor and the nurses kept telling me it would be safer for her in the nursing home. I would ask her “mom who am I” and she would say my cousin. She would take the cover I had over her legs and fold it up and say she needed to go get on the trolley. Well my family and everyone at the hospital talked me into letting her go to a nursing home they said it was a good one. I would visit all the time but not everyday. I would be there for her dinner to help her but she was allergic to fish, and a lot of other things. When I got to the nursing home she already had her tray and on the tray was a sign that said no fish. When I asked the aid what was that on her plate and she said fish. I held up the sign and she said oh I guess they forgot. Mom’s allergies were so bad she would pass out. Well we never had that problem at my house. She did eat a whole pie one time and another time she ate about five or six bananas at one time. Another day I went to see her and she had a long sleeve shirt on. But two days later she was getting ready to eat and I walked up to her and touched her arm it was so hot and I looked at it and it was infected. I told them they needed to call the doctor for and antibiotic and they said it was to late to call and they would call him tomorrow. I said no way call him now. Then I went again and I guess I was ment to come on fish day but I was a little late and she was already eating. I saw it was fish and she was already having trouble breathing. I told the nurse she needed benedrill or an injection. I am not a nurse but I could do better than these people. The next day a Friday I call the lady in the office to complain. And she said she would look into it. On Saturday my mom just happened to fall in the shower and break her hip. I stayed with her and after they did a hip replacement. They said she would have to go back to the nursing home. I said no way! So I search for another one. This one was very nice. When she got to the new nursing home I went to see her. She was laying there in a bed and holding her face on both sides and moaning. I said that they needed to give her something for pain or call the doctor. There seem to be only one nurse and a maintenance man in this whole place. My husband had plans for us to go out of town for three days. I did not want to leave but my daughter said she would check on my mom. Now I gave this place my cellphone number, my son’s number, my daughter’s number and my husband number. i was still worried and did not want to leave and the maintenance man said they would get her an X-ray or something. Well a nurse called my home number from the nursing home saying they were taking my mom by ambulance to the hospital because her sugar was so high. My mom was eighty years old and did not have diabetes. I finally got a call from the nurse at the hospital stating my mom had an infection in the area of her new hip and the new hip had to be removed. I talked to the doctor and he said this was the only way. My mom was allergic to the very strong antibiotics so they removed the e hip. After the surgery I was sitting with my daughter and this male nurse came in and berated me for letting my mom suffer. Then they were trying to put a stent in my mom’s arm and I said they needed to get someone else to do it. The nurse had stuck her three or four times. They finally got the IV nurse and she could not get it either. She kept telling my mom to lie still. I told the IV nurse to stop it. I wanted to stop her from hurting my mom. I told them to leave her alone.
    I did not want her to be hurt anymore. Then they put her in hospice. Well they only came in to give her morphine and never check how she was doing. I sat there for five days telling her how much I loved her. She was laying there with a totally black arm from where they were trying to put in the stent. I cried! My family came to bring food and see mom but would leave. She died on the fifth day at three am. My cousin had called me on my cellphone the night before she died because their mom my mom’s sister was in the hospital and my cousin and her sister’s had talked to their mom and they were laughing with their mom and she died after they left. My cousin said do not fall asleep. I kept telling my mom how much I loved her and that my dad, my sister, and my mom’s sister Pat was waiting for her. I do not ever remember falling asleep the whole time I was there but I almost fell asleep but my mom who did not talk anymore gave a big sigh and I walked over to her bed and she was gone. The first nursing home is no longer open. And I made sure the second nursing home was well aware of what the maintenance man had told me. I am so sorry this is so long but I have felt so guilty for putting her in a nursing home and I will regret it for the rest of my life. One more thing my mom’s last sibling out of ten kids died before I could get my mom to Florida to bury her. There was something going on with the coroners office being backed up. And the funeral home wanted to know what dress Iwanted to bury my mom in and I could not decide. One dress was from my mom’s 50th wedding anniversary, one this lady bought for her to go to her daughter’s wedding, and the last one was one my sister bought for my mom. We had to go with the long sleeves because of her black arm. Again I am sorry it is so long but I guess I just needed to tell someone. Thank you!

    • Mary Beth Griffith says:

      Oh P.Max ! I am a retired nurse & I cried while reading your story. Unfortunately what you experienced is sadly all too common. I have worked in Nursing Homes where I drove home crying all the way after my shift because of what my poor sweet elderly patients were forced to endure by the MD’s who never looked into the patient’s eyes to see a human being, but looked into a gaping hole the size of a paper plate where their tail bone was visible & wrote orders for us to irrigate it with a water pik,use silvadene cream, pack it with lots of gauze, put a diaper on, measure the wound daily, crush 8 RX’s up & mix the disgusting mess into applesauce or pudding & attempt to have the patient swallow it ! It was a form of torture ! I wanted to quit my very first night ! I know exactly what you went through because I have witnessed it throughout my career, as well as experienced it with my own Mom.Please don’t blame yourself for anything that happened. You did the very best you could for your Mom. It is the medical professionals ( MD’s !) who are the failures! When you are thrown into a situation like yours, the odds are so stacked against you. I know not every facility operates under such malpractice… yes, that’s what I see it as… malpractice , when people are used as Guinea pigs & their dignity is thrown out the window ! I could’ve wrung many necks when my Mom was placed in a Nursing home because I just wasn’t able to care for her at home due to my debilitating back injury & her downward spiral into Alzheimer’s.My sister sent me a cell pic of Mom one day showing her slumped to the side in bed “sleeping,” feet as swollen as watermelons, & left side of her face drooping ! ! I immediately called to speak to the Charge nurse who claimed she was “tired”.She was barely responsive ! I told her to please call the MD ! I could see that she’d had a stroke ! ! Sorry, I didn’t mean to write so much.I just wanted you to know that you cannot beat yourself up. You did the best you could at that very difficult time.You & your dear Mom are victims of our present day messed up system! God bless the Hospice workers who do provide the loved one to remain at home where they belong to live out the last of their days ! Words of advice to all… get Advanced Directive form which specifies which treatments you do/ don’t want a facility to perform on your loved one ! These include antibiotic treatment, G-tube feelings,NGT feedings,CPR ( yes, fragile ribs snap like twigs ), & others.If your loved one is in a Home or does go to a hospital, make copies & have them put it in the front of their chart & make sure everyone knows about it. I believe HIPPA regs forbid taping a ” DNR” sign over the bed.Looking back as a daughter, even I made the mistake of putting my trust in unworthy staff I shouldn’t have & my Mom also suffered from repeated inept needle sticks, UTI’s, rapid weight loss, etc. My heart aches to think about it but I can only say I did my best. And that’s what you did.I have made my own needs known to my husband, son & rest of family. NO EXTREME MEASURES !! God bless you & give you peace.

    • Kathy Carden says:

      So heartbreaking. I will always remember this. I wish I could take away some of your pain.

    • Marsha Bradford says:

      P. Max, I feel ur pain!! My dad suffered in a nursing home, he’d brkn his hip, and they didn’t turn him as they should, and he couldn’t turn himself. By the time we realized why he was moaning in pain, he had an open bed sore, so bad that we could see what looked like the tissue around the bone!! My dad had dementia, and was unable to effectively communicate with us. When re finally realized what a lack of care he was receiving, my mom decided go take him home, where my sister’s and our husband’s helped her for the year and a half remainder of his life! We berated ourselves for not noticing how bad the bed sore was, but it was THEIR job to check on him, and turn him!!! He was only in the nursing home, for about 6 weeks, but that was interminable! Give yourself a break, it sounds to me as though u were a loving daughter who did the best she could! God Bless!!

    • I’m glad that you wrote all of this out. I think just saying all of this will help. It was a horrible time for you. And watching your mother go through so much pain without being able to fix any of the problems had to be heart wrenching. This is me giving you a hug (*). You need one. You did so much for her. Give yourself permission to rest now.

  208. Clara Rimmey says:

    This should be posted on a wall in every hospital room ,nursing home or bulletin board where families can read it and make appropriate decisions for their loved ones that cannot speak for themselves. A lot of doctors and nurses, have difficulty talking to the families about end of life care and this would make it easier to start the conversation if the family reads it and can ask appropriate questions and have an understanding of why these tough decisions have to be addressed in a kind and loving way- it gives common ground to a discussion that needs to happen.

  209. William says:

    Anyone read about what the doctor who was so eloquent in David Bowie’s last days?

  210. De says:

    It wasn’t family trying or wanting to keep my husband alive —- it was the Doctors! We knew there was no other path for him but the Doctors kept adding treatments. Heart failure & pulmonary failure. Then his kidneys started to fail and the kidney doc got him to agree – over my once again “to what avail?” Put him on dylasis every day until he died 2 weeks later. Made him a pin cushion, and I wonder what big purchase that kidney doc wanted the money for … New Ferrari?

    • Dr. SJ says:

      I am a doctor…and I am compelled to say that all doctors are not the same. We do not all want our patients to go through endless tests, blood draws, invasive procedures, etc. I have never once tried to convince a family to pursue futile treatment. I believe that folks need to die with dignity, and in a manner which THEY choose. It saddens me to read of all the bad experiences on here. I personally feel as if most nursing homes are nothing but a death sentence. Take your loved ones home! Care for them with dignity, tenderness, and love! Unfortunately, many families I work with can be unrealistic…they want “everything” done… I think perhaps death is just too scary for them to think about. If the end result is not changed by the medical treatment being offered, walk away. Give your mom or dad the honor and dignity of meeting death on their own terms. Not in a hospital bed, with tubes and wires consuming them and strangers taking care of them. Be loving, and for the love of God…be merciful.

  211. Donna A Cerza says:

    Beautifully felt & written, Dr. Profeta.
    As an RN & Nurse Practitioner, I have been at the bedside of relatives and my Mom when she took her last breath.
    If our elderly are nearing their last days,
    let them be in their own home, in their own bed w/their kids/grandkids loving
    them to their new home in Heaven!

  212. M. Morehead says:

    My grandfather died at home in 2006 after declining treatment for a second occurrence of bone cancer. He didn’t want the chemo or radiation, and he just wanted to die in peace at home. He had spent several months in a nursing home after falling and breaking his humerus bone and swore vehemently he would never go back. He had home hospice care and home pain management, and when we knew the time was drawing near we all spent our own time alone with him that day, talking to him, telling him stories, and surrounding him with love. He had been in a sharp decline for about two days prior and was completely non-responsive and heavily medicated for comfort. However at one point during the afternoon of the night he passed, he woke up, clear as a bell, and pointed to the ceiling. When we asked him what he saw, he said, “Don’t you see them? The Angels. They’re so beautiful!”. He then laid back down with a smile on his face and went back to being non-responsive, and never woke up again. We knew then that it was the end and he was at peace with it. He passed away around 1:00 in the morning that night, with just my Grandmother holding his hand and talking to him, as he would have wanted. I know he passed the way he wanted, and at peace. Now that my parents are getting older I can only hope I am able to afford them the same respect.

  213. Kimm Moore says:

    When my dad died, he was at home sitting on his leather couch, after he had taken his oxygen off, head bowed. 8 months later my mom died sitting in a hospital bed in her livingroom in front of her picture window. She had only been in her surroundings of home for 5 days after an incredible Hospice doctor, Dr. Shah, met me out in the parking lot of the hospice hospital where she had been for 4 days telling me that she didn’t have long. We were given a 90% chance of a 6 year survival or longer for her. What? Does that mean 6 months? 3 months? A couple of weeks? Dr. Shah said to get her home asap. I did. The next day ordered her everything for her comfort and care. She went home the following day. Her last meal was made by her favorite “son”, who was my nieces godfather, Wade Kalogris. She asked for lobster that he had caught in the keys. He cancelled a date that he had, went home and made her lobster, a salad, and garlic toast with strawberries for dessert. She didn’t eat much but was so happy, the smile on her face and the way she thanked him gave it away. The next day she told all of us girls everything good and bad about us in her most loving way. I was sitting next to her holding her hand singing and talking and she excused herself for a moment. Where was she going? She couldn’t walk because of the size of the tumor. She looked into the air and said ‘ Just please give me 3 more days and I will go peacefully’. She came right back into our conversation. The next two days were followed with almost a restful sleeping state. I wanted the blinds open and the windows with the wind blowing through my mom’s house as it had been of years passed, and to blast the music and send her on with all the things she loved. I was then told that those things would only hold her back and to release her. I apologized to her for not wanting to let her go and made the music softer and held her hand. The next day early morning, I told her I wanted to go home and take a shower as I lived right next door. I got out of her front door, across the path to my house, in my kitchen door and my phone was ringing. It was my sister telling me momma had just taken her last breath. Wow! Are you serious? That little stinker! She waited for me to leave! Haha! It was the day before her favorite holiday, Thanksgiving. I’m thankful and humbled I had this experience. BTW, my dad died the day before his 80th birthday and my parents had been divorced for 45 years but remained best friends! Poetic justice at its finest!
    Kimm Moore
    Winter Haven, Fl

  214. The Reids says:

    My father passed on Saturday, January 23, and I completely agree with this article. My Dad lived with me for three years and we had no choice but to put him in assisted living. Like my Grandparents generation our family still believes STILL believes in taking care of our own for every second that we possibly can. Usually our day started at 7 am making Dad his usual maple and brown sugar cinnamon oatmeal and watching his buddy, a 4 year old Great Grandson that still, at 7 years old, thinks that he is the Greatest man that God ever made.
    I will forever love and miss that Greatest Man. It’s hard to find Grands and Greats and Great Greats that truly love to spend time with those OLD people who, from what I witnessed everyday for 3 years, most of the residents living there NEVER had visitors of any kind.. Not even family. I was honored to care for my Dad. RIP DADDY

  215. Adrienne Piesse says:

    OMG this so made me cry – After watching my mum, once an astute, young at heart, sharp minded beautiful woman slip into the clutches of that bastard, vile dementia – ‘saved’ numerous times from renal failure because she would no longer eat or drink, with IV’s, electrolyte tweeking, force feeding in a hospital environment that was all too unfamiliar, leaving her even more confused and distressed no matter how much reassurance – to finally having a fall that caused a slow bleed, further disorientation and listening to her tell me “I don’t know who I’m meant to be anymore…”. A week later, a massive stroke and no longer conscious. Her doctor asked me “what do you want us to do?” My response, despite knowing the inevitable outcome of my words “please keep her comfortable, no more hospitals, or heroic knee jerk responses – it’s ok to let people die”. I had already grieved so many times over the six years since my dad had passed, watching my mum, this fine lady, crumble away. I sat with her, my daughter and i sharing memories, until Mum, in her familiar surroundings slipped quietly, peacefully away. I beat myself up awhile for the “what ifs”, but then I turned this around to why had I let Mums suffering continue and become worse with every ‘rescue’?. Her horrific final six weeks could have been avoided had I been strong enough to stand up to the doctors who truly wanted to do right by mum – the obligations of medicine. I’m an ED nurse, I think too often “what the hell are we doing here?” – so thankyou for this beautifully written piece, everyone should read it.

  216. a says:

    This is a great article, and I agree with most of it. But, when to let go? Shouldn’t we try to keep quality of life as long as possible, as long as our loved one wants to try?
    My sweet mother is not well, with pneumonia 3 years in a row taking its toll on her once strong, healthy body. She’s been in and out of hospitals and nursing home rehab for over a year. Love her more than anything… Grappling with all of this. She doesn’t want to live in a nursing home, but we can’t find someone to live in with her, and I’m wearing myself down to a nub trying to work and take care of her. What to do? She’s not ready to give up! We’ve always talked of how she doesn’t want to be a burden, how she wants to die with dignity. But, then, when the time comes, and she is weakening week by week, I don’t want to let her go! She doesn’t want to leave!
    Until SHE is ready to let go, we’ll continue to do all we can with doctors, medicine, nurse, PT and OT.
    This is a very hard thing to deal with. Praying for strength, for all of you as well as my family.

  217. Alice says:

    My mother passed away in her bed,with her sister there and her cat curled up on the bed with her. Hospice was so wonderful to my mom and so supportive to us kids.alsgrubwagon

  218. Arlene Hutcheon says:

    Yes, well, what do I say? I work as a caregiver, looking after the elderly, In speaking to our residents, I often hear the words ‘I just want to go’. They have had enough of life, and are tired of it all. Thank you for this, Arlene Hutcheon.

  219. Megan says:

    We should have a law that everyone over 65 is a DNR!

    Canada won’t start HD on elderly people, or give them other life savings treatments.

    • Derick R says:

      You should see the number of 80-somethings in the dialysis unit of any Canadian hospital. Quite often it’s not appropriate, but in some cases there is a good rationale – in general what matters is the person is high functioning and has a good quality of life.

      Also I think DNR for everyone over 65 is a very blanket statement that is not necessarily appropriate for every situation (i know you were partially exaggerating to make a point, but still).

      Overall, I agree with the tone of your post though!

    • Well Megan, I am 64 and in excellent health. I surely Dont wish to be put on “the list! My parents are 95 and 91 and in good health. My parents have discussed their wishes, and they will be cared for accordingly.

      • Megan says:

        Cardiac arrest strikes almost 600,000 people each year, killing the vast majority of those individuals, says a new report from the Institute of Medicine. Every year in the U.S., approximately 395,000 cases of cardiac arrest occur outside of a hospital setting, in which less than 6% survive. Approximately 200,000 cardiac arrests occur each year in hospitals, and 24% of those patients survive.

    • Wondering how old you are? There are hundreds of thousands of people over the age of 65 living very,very active lives. Even many living a full life in their nineties .

      • Megan says:

        32 years old and I am not saying we ship all the old people on an iceberg like the Inuits do!

        Knowledge is power… Saving people at any age from cardiac arrest almost never works.

        Cardiac arrest strikes almost 600,000 people each year, killing the vast majority of those individuals, says a new report from the Institute of Medicine. Every year in the U.S., approximately 395,000 cases of cardiac arrest occur outside of a hospital setting, in which less than 6% survive. Approximately 200,000 cardiac arrests occur each year in hospitals, and 24% of those patients survive.

  220. Cee says:

    I wonder how Congestive Heart Failure got to be so prevalent and what about age related macular degeneration, and depression and anxiety disorder? If my mom didn’t have macular and CHF she could live with our families or by herself and have a pretty cool life. She can’t remember things after her fall in which she broke her back and had to wear a brace for three months in rehab. With CHF and macular She is a fall risk and so must have cna or nurse supervision to move around building, to shower and dress and receives no services from blind commission because our state does not provide enough services. Assisted living does not provide vision services either. If you can’t see you can’t play the games, do the excersizes etc. so she sits in her chair sleeps a lot and the place charges her 6k a month for that right and the absolute shitty food they have Sysco deliver in a truck. She can’t wait to die.

    • Anna says:

      My mom also has CHF and macular degeneration, and the complications. I also wonder about the prevalence of these conditions. Absolutely agree with vision services not being So true! If my mom didn’t have CHF and AMD, she could live with us or alone and still have a cool life. Still a cool lady with her wits about her.
      Oh, wow, wish I could sit and talk to you about all of this.

  221. Susan Malpede RN says:

    I’m a RN who had been in healthcare for 38 years I have been with patients on there last journey which has always been a honor for me Its so try how we as healthcare providers allow people to die without dignity I have been given the honor to be with very close family members at there homes in there final journey without pain and family at there bedside What a wonderful experience for me and there families to see them leave this world pain free and in peace Why does today’s medicine feel they have drag on the inevitable It saddens me that they allow this to happen I only hope when my time comes it can be pain free and peaceful

  222. Anna says:

    This is a great article, and I agree with most of the basic thoughts. But, when to let go? Shouldn’t we try to help quality of life as long as possible, as long as our loved one wants to try? Should we just let her die of an illness that can be cured?

    I appreciate this statement: “This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.”
    To me, though, this article does sound a little judgmental. It’s not a black and white issue. Science has prolonged lives of people who then continue to enjoy years of life and happiness. When do we decide the cut off point? Do we decide it for the person, or can they decide that they want to keep trying!?

    I, for one, will not judge other people on their decisions to try to prolong or cure or in any way help their loved ones. Can’t we help extend a life if it’s possible for that person to become strong enough to live without machines? The old ways were not wrong, but a new way of helping a person extend and enrich their life is not wrong, either. I so agree that we often take this to an extreme. There seems to be a fine line…

    Yes, this is the way our society is; generations don’t all live together in one dwelling, with the women or other family members staying home and able to stay with our loved ones when they get feeble. Does that mean we love them any less, or that we want to put them away in a home?

    My sweet mother is not well, with pneumonia 3 years in a row taking its toll on her. She’s been in and out of hospitals and nursing home rehab for over a year. As long as it’s still possible for her to go home from rehab, for her to live a fairly normal life, loving and being loved, we’ll help her.
    What to do? She’s not ready to give up! We’ve always talked of how she doesn’t want to be a burden, how she wants to die with dignity. But, now as she is weakening week by week, I don’t want to let her go! She doesn’t want to leave!
    Until SHE is ready to let go, we’ll continue to do all we can with doctors, medicine, nurses, PT and OT.
    This is a very hard thing to deal with. Praying for strength, for all of you as well as for my family.

  223. Marsha Bradford says:

    My daddy died at home! He’d had strokes, (which his doctor totally missed the signs of, kept treating him for dinner ear problems), and the first stroke was massive, and the doctors didn’t even want to try to revive him, but we begged them to try, which they did! They’d said if he did survive, he’d be a vegetable. That, “vegetable”, came back to almost 90 percent of his former self, but a doctor again missed the symptoms of the second stroke, and this milder stroke, affected his mobility more. But, he did well for several more years, until he slipped and fell, breaking his hip! They put him to sleep, to repair his hip, but awoke,literally with full fledged dementia! Having had a bad experience in a nursing home, my mom elected to keep him at home, and he was always with my mom, or one of his daughters and son-in-laws, up until he died! We also had the help of hospice, which was invaluable! Even though a couple of crappy doctors bungled his care, h e also had excellent care, at the time of his original stroke, and we were able to have my dad for another 10 1/2 GOOD years! The doctor’s at the hospital,who were there for his first stroke, referred to him as Lazarus! My mother was at his bedside when he died, and we are so grateful for that!

  224. Anna says:

    All well and good…but how can we just let our loved one sit and watch the outdoors when she may get better? When she doesn’t want to give up? If she still has a say, I say honor her wishes.

    • Anna says:

      And, then, as I read your comments, feeling for all of you, I know that I’m wearing myself out; doing nothing really than working and taking care of my mom, rushing back and forth from the home, hoping and praying that today will be a good day. She can’t live independently, and I can’t make her stay at my house….maybe I’m in denial…so tired…. When SHE’s ready, I hope that I can take her home, and let her go peacefully at rest, with her loved ones by her side.
      It’s a part of life, but it’s still damned hard to say goodbye.
      Thank you for this article, and for the comments here.
      Love and strength to you all

  225. Celeste says:

    As my dear mother always said- ” an ounce of prevention is worth a pound of cure”, I too believe that quality of life should be as important and respected that an individual in their most vulnerable moments of their lives be given that right and dignity to go as naturally as possible with comfort. Doing what is available is not always in a person’s best interest, and often only prolongs unnecessary discomfort. I have seen far too often the fate some suffer is often worse than death which only serves them to be freed from their suffering. We need to check our own motives for the choices we make for our’loved ones’.

  226. Hanna says:

    Please let me die when I can no longer live with dignity and the pain gets to be unbearable. Put me in a corner of the room like in the old days and let me go when the time comes. Most of my live was happy. Just remember that. I always loved you

  227. Darby Birr RN BSN says:

    I work in a medical ICU in Toledo Ohio. This is the most moving and poignant article I have ever read. I think about this everyday. I am so relieved someone could express this issue in a manner so true to the soul and yet so brutally honest at the same time. Thank you.

  228. Beverly Hays says:

    Written beautiful so very truthful. Harsh in parts but, sometimes we need it laid out that way. 10 or so years ago when my mother was dying of lung cancer, we wanted no more hosiptals, we took her home to her apartment, and allowed her to die with grace. So she could have the quite talks, the sips of soups, the time to visit. It was hard, but, it would have been so much worse to have her in the hospital with tubes and the noise, and no privacy. Not what she or us would have wanted. I hope to have the same.

  229. Melissa says:

    The Last days with my mother were in the living room of my home now with friends and family visiting singing prayers and Bible reading. It was so much better than the hospital with my Dad.

  230. Joy Wolfe says:

    So very true. My siblings and I were able to have the clarity of mind to make the difficult decision to let our mother go nearly a year ago. My older sister and I are family docs and all too familiar with this end of life scenario. Fortunately, our other 3 siblings trusted our judgment and agrees to “let go” of mom and not prolong her death. But even the hospitalist came bustling in, planning on sending her for dialysis after she had been hanging on for nearly 14 hours with a BP of about 65/30 thanks only to 3 separate cardiac pressors going full blast. I told him in no uncertain terms that she absolutely would NOT be getting dialysis. He was rather put out we were not willing to do more invasive procedures. We were blessed to have the knowledge and be at peace with our decision to let her go and say goodbye.

  231. Cindy Wright says:

    A comforting article. After Mom fell from a near drug overdose and allergic reaction to a new medication…she came to live with us for two years.It was a mostly lovely time, with family dinners, great grand children visits and just spending time. She has always…for as long as I can remember…insisted on dying at home. CHF slowly weakened her until she started repeatedly falling. We took her to the Dr. to check for a UTI…only to find her lungs were again filling with fluid. She refused further treatment, ripped the IV out that was rehydrating her, and ordered us to take her home. We did and started hospice. We gave her comfort measures and enough morphine that she would not feel herself drown. She was visited and surrounded by her family in her last days, but waited until it was just her and I and breathed her last breath at 2:10 am. I woke my husband, we cleaned her, called hospice to let them know, cried our eyes out. Even though I did exactly as she wished, even though her sweet hands never clutched in pain, I have felt a certain level of guilt as I mixed her morphine and haloperidol mixture. This article reassures me that how we handled it all was the kindest, most loving way she could die. Thank you.

  232. PK says:

    My 99 year old grandmother lived on her own right up until the last couple of weeks of her life. She had a Do Not Resuscitate order that all of her children knew about, and she made it very clear to the emergency crew both in the ambulance and at the hospital knew they weren’t to take any measures to keep her alive.
    Thankfully the hospital where she spent her last days understood and abided by her wishes because she was in too much pain and had a bad infection that prevented her from returning home. We all felt bad that she wasn’t able to be in her own bed at home during those last two weeks, but all of the caregivers at the hospital were so gentle and caring with her it was a relief. She kept asking us to let her go and we were able to reassure her that it was OK for her to leave us. Her body held on much longer than she wanted it to, even without “lifesaving” medical intervention. So we were glad that she was in a place where she could get constant pain meds to keep her comfortable as her body shut down bit-by-bit.
    This whole experience just reinforced for me that it is crucial to make your wishes very clear to your family and medical care providers and make sure that everyone is on board with your desires to die a natural death.

  233. John Chankin says:

    What a beautiful way to express your thoughts and my prayers. I have seen my parents lives being extended far beyond their time if we only had known what extending their lives had cost us and them maybe we could have gone back to the old ways I wish I had been stronger but I wasn’t I can only hope my family can abide my wishes and release me when my time comes. You have written a story that needs to be said and followed. You should be very proud thank you for sharing your work
    God Bless

  234. Deanna says:

    So wonderfully stated, from this Hospice nurse,whom works independently on her own for the end of life person, who only wants a chocolate covered donut, even if it kills him, doesn’t for 2 weeks though,and gained 14# eating his favorite foods, but died with a smile, and his family happy he lived and died the way he wanted too.

  235. Chris frieders says:

    That is why I support the right to die with dignity. And if that doesn’t work, I have a mutual contract with a good friend of mine that we will not let each other become someone else’s problem. We will just go on a one way ride to the “other side”.

  236. jsyne Harvey says:

    This is why I want to continue to do hospice care. Providing respect and dignity are what’s important to me!❤

    • Cindy Douglass says:

      That’s why HOSPICE care was established in the 70s and 80s!!! HOSPICE care is alive and well and a trained physician should be making the correct referrals instead of spreading false hopes of a cure for the incurable!

  237. kat says:

    Reblogged this on Me: Finding the Missing Pieces and commented:
    food for thought

  238. Jennifer Durham says:

    I have worked in hospitals since 1990 as a nurse and the last 18 as a nurse practitioner. This is completely true and needs to be said in public, around the dinner table, on TV and radio. We need to give people choices other than lets do everything to the bitter end because we can. Death is part of life. Almost everyone I know in the medical field prefers the sitting by the window in my own home sipping soup if I want !

    • Lyn Smith says:

      Absolutely and totally agree. There are more decisions to be made than signing the ‘Do Not Resuscitate’ Order and/ or ‘No Artificial Means’ Order. I believe everyone has the right to a peaceful, respectful death.
      When doctors know there is nothing left to be done, stop pretending there is.

  239. Faith Adams says:

    My Dad, a retired pastor, had Alzheimer’s. My mother cared for him as long as she could, but she was getting so emotionally fragile, we worried about her. Eventually we had to put him in a nursing home, even though it was devastating to do so. Unfortunately, as a widow I had to work to support myself and couldn’t take off the time necessary to care for him and my Mom couldn’t handle him any more. Because he was sundowning, they put him in the lockdown ward at the nursing home where the care was almost criminally negligent. After 3 months he developed a UTI and because they didn’t treat it, it turned septic. I had him taken to the ER and then made the decision to put him in hospice. My son and grandson came to see him, sat by his side and held his hand and whispered in his ear how much they loved him, what a wonderful influence he had been in their lives, and thanked him for everything. The next morning as I could see him slipping further away, I had his defibrillator turned off so it wouldn’t shock him as his heart started to fail and stayed by his side, talking to him and singing. The next morning I was standing at the window and I heard him talking… he hadn’t been able to talk for a couple of days, so this caught my attention. I turned around and saw him with his eyes open for the first time in a couple of days. He was gazing up at the ceiling with such an amazed, happy look on his face, so I hurried over to his side. I asked him who he could see, was it Grandma, Grandpa, an angel, or Jesus Himself? But he didn’t answer. Just kept looking up in awe. So I told him, “Daddy, if Jesus or an angel has come for you, just go ahead and go. I’ll take care of Mom. You don’t have to worry about her. I love you.” He closed his eyes, took a couple shallow breaths, and then he was gone. Two of his doctors later told both Mom and me that I did the right thing in having the defibrillator detached so that he could go peacefully and naturally. And yet I dealt with guilt. Should I have kept the defibrillator on? Should we have fought harder? Should we have insisted on a strong antibiotic to fight the infection? I know the answer. He didn’t want to live like that. It was selfishness on my part… I just didn’t want my daddy to leave me. But I believe he is in Heaven with his parents, my husband, his own many, many friends who went before him, and with his Lord. He is healthy and strong and his mind works better than it ever did here on earth. He wouldn’t want to come back and be the way he was those last few months. During the last 3 years since he died, not a day goes by that I don’t miss him, that I don’t think of things to tell him, or want to ask him to pray for me or my children. In the summer, when I visit nearby Glacier National Park where I took him each year because it was his favorite place, I miss him so much it hurts. He was a great man, a man of integrity, honesty, love. He was the most godly man I ever knew. I will always miss him. But I know where he is and I know I will be with him again.

    • Cathy says:

      What a beautiful final gift you were able to give your father.
      —A nurse who has seen it all

    • I have worked as an RN hospice case manager & have attended many such passings. You did the right thing- not the easy thing but the loving thing. I had similar doubts after having my beloved dog euthanized in my home. I think we agonize post passing because before the passing our focus is on what’s best for our loved one and post passing, we focus on the heartfelt loss. Quality of life vs quantity of life is most important. You were a good daughter. I hope you can take comfort in that.

    • penny harney says:

      My husband of 48 years,lung cancer, died at home in our bedroom and that morning I said” Phil its OK you can leave” A couple of fish like gulps and he left, no drama,no pain, tranquil , for both of us..

    • Annmarie Muehl says:

      Thank you for sharing your experience. I have been the caregiver for my mother for seven years. She has dementia. I am on the verge of placement in a nursing home, and it makes me so sad. I have family working at the nursing home so I know I am in a better position than some as far as care expectations. The scale is tipping in favor of placement vs what I can provide on my own.
      How is your mother doing?

    • I am nearly at that stage with my husband. The thought of losing him is too terrible to contemplate, but no matter how much I bang my head against the wall, I can’t stop what is happening to him. He wants to be at home, and at home is where he is. He’s rapidly approaching the point where hospice home care will be called in. As hard as it is for me to accept, there will be no more trips to the hospital. Everything now is about his comfort and peace of mind. I used to spend hours researching healthy recipes and making them, depriving him of so many of the unhealthy foods he loved in an attempt to keep him alive, but now I just allow him pretty much what he wants. (within reason) Right now just getting him to eat at all is a major challenge, and calories are desperately needed, so even though it is counter-intuitive I have learned to just go with the flow. There is nothing more anyone can do for him, so my focus now is making what time he has left as comfortable and pleasant as it can be. My instinct is still to fight like hell, my heart screams at the unfairness of losing him but slowly I am coming to accept that this is inevitable and the most loving thing I can do is allow him to do it on his terms. He will die at home, with me by his side. The hardest part for me is that after a lifetime of toil, we are months away from possibly having all our money problems solved and will have the means of making our dreams come true. The thought that he may not live to see this breaks my heart the most. I try not to dwell on that, though, I continue to work on designing our little dream cottage, designed to accommodate his disabilities, with the hope that maybe he will make it long enough to share it with me, even if it’s only for a few months. All he ever wanted was a home of his own, so I concentrate on making that dream come true for him. I no longer pray that he gets well, but only that he lives long enough to see his dream of owning a home come true. If I can give him that one last gift, it will be easier to let him go when the time comes.

    • Nick Wimble says:

      My sister and I went though the exact same thing, with our dad….defibrillator and all…..
      He went home January 6 2014…..Just because we have the ability to prolong life, does not necessarily make it the right thing to do…….Shalom

    • Jc says:

      Beautiful story, thank you for sharing it with us. And you will be with him again.

    • Beth Steidlitz says:

      I also had all the life saving machine taken off my sister and took her home. She had cancer and a stroke I knew how much she wanted to see her grandchildren. I took her home and made that happen. I made a difference in how she died. Saw her grandchildren if she knew or not I do not have any idea. But her family and friends were at her bed side. I have never felt guilty or felt bad about what I did and you shouldn’t.

    • Debbie Campbell Roberts says:

      What a wonderful person you are-

    • Judy says:

      You did the right and loving thing. I don’t believe our elderly want us to intervene with all the life saving technology available today. My 96-yr-old mother-in-law would have needed a 24-hr feeding tube after a stroke; the family, including me, new she would not want to live that way. We had to let this woman, who I loved so much and had so much fun with, go. I had trouble accepting that we were just going to let her die. It took 10 days and she knew this was the end. She squeezed a loved one’s hand to indicate “yes” when asked if she wanted to go back to her room at the nursing home. We were all there with her for 10 days. She knew we were there, and 3 of us took overnight shifts so she would never be alone. We cried, we laughed as we told stories, and we talked to her. We played music for her which she indicated with a blink that she was enjoying it. Friends came by to say their goodbye to her and her to them. She went peacefully over the 10th night while her son was there. I do believe we did the best for her. Even tho she passed in a nursing home, is was a very good one she had been living in for 4 years with dimentia. She new the staff and they took very good care of her. She took her final journey in peace and dignity with her family present. The time we had with her was a gift we don’t always receive; I treasure the time I had with this amazing woman.
      Even though losing her was not easy, I was blessed to be able to spend her last days with her in a famiar setting outside a hospital with all the medical paraphernalia. I would not do it differently unless I could have had her in her own home. The care she received was hospice care arranged by the nursing home.

  240. Barbara Fearon says:

    Both of my parents died in 2014, my Dad in June & my Mom October . Both went as peacefully as possible. Dad had liver cancer & diabetes, Mom asthma, copd, heart problems TIA’s, both had dementia. They had good lives, married over 62 years 6 kids, 12 grands, 10+greats. They loved God, each other all the family.They we we loved by all who met them. When it was evident both were getting ready for death Hospice was consulted and with the approval of all of us and their doctors were given small amounts of medications to help with the pain. When they went home to be with God in heaven and be together again I am proud to say we kept them home and we kept them comfortable. There was no cold hospital. There was the warmth and the calmness of their own surroundings and the great love of all of their family surrounding them as they lived. When theit time was done they left their pain behind and peacefully slipped away.Yes we miss them every day but we know we made the right choice in keeping them home and in peace until the Lord called them home. They slipped away surrounded by their grown children and grandchildren.

  241. Back in the olden days, death wasn’t always a peaceful going. My grandma passed before I was born so I never knew her. I heard that she was in a lot of pain. This was around the 1950’s.

    • Maureen says:

      My grandmother died at home, from bowel cancer in the 50’s, aged 63, in severe pain! It was agonising for her family to watch! My mother has never got over the experience! Having said that, there is no point prolonging life for the sake of it. Most people will agree quality of life is way more important than quantity! We are lucky we now have the resources to allow people to pass pain free when their life is ending!

  242. Teresa Gohr says:

    My mother being a nurse all her life helped others recover or move on. I myself wave worked in nursing homes and hospitals. Dying with dignity was and is very important to my family. I was blessed to be able to let my mother pass in her home and in her bed with my son and I at her bedside, She held on for so long not wanting to leave me alone. I smiled at her when her breathing became so difficult and said ” It’s ok mama, I’m ok, It’s time for you to go be with your mama, daddy, brother and sisters, I’ll be just fine”. She looked at me with loving relief and through her tired eyes I sensed her telling me that she loved me, then took her last breath. She looked so peaceful. I know I could have prolonged her life, but why make her suffer any more than she already had. Being with my mother at that final moment was a blessing to both me and my son.

  243. Jane says:

    When my husband became terminally ill with heart disease several years ago at age 59, he was put on hospice, and his wish was to die at home. I stopped working and became his 24/7 caregiver, and I did it without help until it became too much. The hospice staff were often less than helpful, and I wasn’t able to get in-home nursing assistance because it was denied by his health insurance. When my husband started losing his balance and falling, becoming a danger to himself as well as me, I had no choice but to put him into a facility, where he died two weeks later. It broke my heart that I could not honor his last wishes, and that he couldn’t spend his final days in familiar surroundings. There is something wrong with a society that won’t give comfort to those who need it most in their final days.

  244. June Cooley says:

    My husband died 12/5/2014.He said to me before I took him to the hospital “I wish God would just let me go to sleep and not wake up.” I got him to the hospital, they took him back, I went to move my car , when I returned they said he just looked like he was asleep. I know he died before I came
    back and I know God gave him his wish. He had suffered so long but they put him on the machine
    but he never woke up, never moved and 4 days later they took it off. He looked so peaceful and
    looked like he was at home in bed, I felt his last breath and was glad that God had given him his
    wish. We had been married for 59 wonderful years. He was losing his oxygen and I didn’t know it.
    I didn’t get to say goodbye to him but he did not suffer while he was there. I know God answers
    prayers.

    • bloodywendy says:

      My grandmother was in the hospital for a week, terminal, and didn’t like having all those uncomfortable tubes and things in her so she ripped them all out and was gone the next day. 1963. Way before pulling the plug became an issue, she pulled her own plug.

    • jim says:

      You story is making me tear up you are beautiful thank you

      • diane says:

        My husband’s Mother lived to 95 years young. She was a survivor of the Holocaust.
        She was in Hospice and did not want to pass. She would pull off the morphine patches and spit out the medications given orally. The nurses(?) put in an IV to administer morphine etc. She would pull, yank, rip the tape holding the needle in her arm off and rip the needle out. She did this a couple times. She was finally moved to a rehab place and given rehab care. She became better and evened became able to walk, with some help. After 2 months of being taken to Hospice, she passed. I am sure her passing was with some help. She probably would have made it to 100, but she did need constant 24 hour care. She was a lot of work for a long time and dhe did not sleep at night. She was afraid of the dark. I am sure she is in a better place, perhaps even with her Mother who was taken by the Gestopo.(sp)
        What do you do with a beloved such as this?

  245. deepshade13 says:

    We are a lost culture, our food & water makes us sick, our medicine is designed to prolong life but create return customers, pharmaceuticals ravage us & our doctors endorse it. All the while nature and her perfect traditional cures & preemptive nutrition were here all along. If we combine our nutritional needs with our medical advancements & the forbidden fruit of cannabis to enable yet another unused resource our endocannabinoid system which enhances our immune and regenerative systems. We are lost for the most part but the humanity we seek is still there, waiting for us to wake up…

  246. Steve Warren says:

    My girlfriends daughters god-parents were taking care of the women’s elderly mother in their home. The mother had alzheimers and numerous other problems. She had weekly UTI’s and trips to the hospital via ambulance. She had the feeding tube. The women always talked about “never giving up on a person.” I watched that poor old lady turn into an unregognizable, moaning, gaping mouth shell, of what use to be a human. It looked like some type of abuse to me. Shortly after that I set up a living will and gave power of attorney to my partner and made it perfectly clear that I never want to be in that situation anywhere. Not at home or in a nursing home. Keeping a person alive to make money is the most disgusting thing I can think of. Wrapping it up in caring and never giving up has to do with the family member not wanting to face the inevitable mourning and their own grief.

  247. Betty richardson says:

    Could money be part of the practice?

  248. Mischelle Paton says:

    This is why I left nursing

  249. There’s only 1 problem with this. PAIN. It’s inhumane to allow someone to go home in extreme pain to die. The solution would be to loosen the drug rules, but they’re never going to do that because as it is now, people with severe nerve pain can’t even get percocet, and people with cancer can’t get what they need. Once you’re diagnosed with a TERMINAL ILLNESS then you should have home access to any pain reliever you want, including morphine. Hospice is the best and only option right now. I’ve watched 4 loved ones die and all were horrible. The worst one had no Hospice. The better ones had Hospice but it was delayed. The best one went home, with home Hospice nurses around the clock and eventually morphine, but that was paid for by a charity. But even that was too slow of a process. They don’t up the morphine dose unless the relatives ask. Navigating the whole process for relatives is confusing and sad. When it comes my time, there’s no way I want to even get close to the point of not being able to lift my arms and barely swallow. If you can’t cure me then give me a bottle of oxy and drive me to the beach.

    • kridgeway3 says:

      How sad for your loved ones that they died in pain. It does not have to be that way.
      Hospice is indeed the best option, but too many choose hospice care too LATE.
      Hospice should be started when this question is answered “no”:
      “If this person doid in the next 6months, would you be surprised?”

      If the answer to that is “no, not really,” then it is time to explore the option of hospice.

      When hospice is started earlier rather than later, the nurse / team get to know the family: their wishes, routines, quirks, etc. The nurse can know the patient at his or her best, and more easily discern decline in functioning, and increase in pain or other symptoms.

      Then, symptom control can be stated earlier (oxygen, pain medicine, anti-anxiety medicine, breathing medicines, etc.)

      The hospice team also relieved the family at times for family to rest. They can help relieve the physical burden by doing the patient’s bath and bed change. Other services, such as music therapy, social services, chaplain visits, etc, can all help support the family in so many ways beyond the physical.

      However, the hospice admissions nurse must help the patient / family understand that hospice supports the family taking care of the patient: hospice is not there 24/7. There truly is still a large burden and resonsibility in having a patient at home, so not all families have the strength and resources to do this.

      But often the rewards far surpass the burden.

      Choose hospice earlier!

  250. Sigh says:

    People back then also “acted old” by age 40. I remember my grandparents when I was five, just sat in front of a television and watched the world go by them. They had to have been in their 50s. Now, I see more people in their 50s and older hiking, going to the gym, traveling, etc. Let’s not forget too, people are living a lot longer now, so once a person gets to the dying stages, they may not be able to do sit up on their own or sip soup. This article doesn’t take into consideration the culture shift that has occurred since the 80s or the fact that people live way longer these days. A lot of times the dying end up in hospice and hospitals because of complications of reaching 90s. Of course it would become in their jurisdiction to help ease the patient the best way they know how. Let’s face it, if you end up dying in the hospital… Chances are you won’t be able to physically sit up, and you may not have your mental capacity.

  251. Judy Hiner says:

    I am in complete agreement with this guersome, but lovely, account of how things were and how they’ve become.
    Hospice helped us through a sad journey through Alzheimers with my mother in law
    as well as an extra year withy father in law. They were our angels! We now have living wills with medical directives. Thx 4 sharing!

  252. Karen Wan says:

    Reblogged this on Our Enchanting Adventure and commented:
    My mom and I are trying to avoid this end of life scenario . . .

  253. Becky Miller says:

    I lost my mother in sept of 2012 at home with hospice, it was heart wrenching but peaceful as possible for someone with COPD and then My Dad in June if 2014, in a veterans home, with hospice after a short fight with cancer which was everywhere by the time it was discovered.thank you lord for hospice workers. They are the best. Couldn’t have done without them.

  254. Lois says:

    Makes me feel so sad.

  255. Jennifer says:

    First do no harm….prolonging life because it is possible, is fighting the inevitable and likely causes undue harm; to those experiencing and those witnessing. Allowing the natural progression of life into death, selecting palliative care to ease the process makes more sense ethically, morally, and financially. I know of no elder who would wish to exist without dignity to hold on to another day on earth. Rather, delaying death prevents those who believe in an afterlife from reaching the place they have lived to achieve. They cared for us when we were vulnerable, when the situation reverts, we owe it to them to support their journey from this life with honor, dignity and peace.

  256. Jean Kincaid says:

    I have read this and was so impressed that I re-read it again and again. I do think that there are times when lives should be saved and that there are other times when it is o.k. to let go and let nature take its course. I have seen to it that my Living Will is updated from time to time and also that so-called heroic measures are not taken. Thank you for making it possible…sometimes in graphic terms….what really constitutes life.

  257. Betty Sexton says:

    Hospice is the answer to “right to die” in today’s time.

  258. Carolina Jimenez says:

    Very true. My future goal if I ca, is to work with palliative clinics. I am a mental health practitioner/ psychoterapist and I think it is time to help this populacion that is suffering in silence and has not voice and vulnerable like children are. I have worked with children long enough. It is time….

    • DeDe Moum RN says:

      Thank you for bringing in the subject of palliative care. This term is not yet well known. It is a way of looking at the whole picture of care in a manner that includes both curative and comfort care and seeks to find the right balance for each individual and family. It has many of the elements of hospice care, but concerns itself with far more than end of life care.

      With all of the advances in medical care we have many people of all ages who are alive but have complex needs. The discussion of how to provide the best quality of life to each individual is not one of “curative verses comfort care”. There are many people who have medical conditions that are chronic, but many things can be done to assist them to have their lives to be as full and as personally satisfying as possible.

      Palliative care is a journey that the client and family, medical and support service providers take together. So many of the points that have been expressed in this article and in the comments shared, are addressed in the context of what is best for this individual .

  259. Martha says:

    I am so proud thaty family allowed my Father to die in peace and at home with Mother. It was the most excruciating experience of my life and I can’t even imagine how hard it was for Mom but as a nurse I know first hand how much worse it would have been if we had handled it differently. It is so sad to watch family’s torturing their loved ones in a futile attempt to “save” them or give them more time. Time spent in an uncomfortable bed, being cared for by strangers in a strange environment. We need to change the way we think about death and dying.

  260. In nursing homes…the corporate kind…death is much crueler and slower than the monitor beeping described in this article. It can take YEARS to die, even without feeding tubes. With two CNA’s on the floor taking care of 20 some people, many of them total care….resident MIGHT get changed out of urine filled diapers once a shift. Forget walking…forget range of motion…short handed you “top em and drop em” wash their faces, and drop them into bed via hoyer lift like so much crated meat..wipe the peri area off and if they are lucky, put barrier cream on them. Why? Because the CNA’s are lazy, or stupid?
    Hardly. CNA’s are at a huge shortage right now…deliberately. Corporate run nursing homes often will not staff adequately in order to skin an extra buck. I know..I am one. The home I work in now suffers from an acute CNA shortage, but is a decent place to be. It’s out in the boondocks, nearest town is population 2000, but a corporate home I worked in was a hell hole.

    I watched a man fall to death. He had kidney failure, even with hospice visits, he’d get up and try to walk…boom. Sometimes more than once in a day. Each fall took something out of him. We couldn’t watch him all the time, too few staff members, too much chaos. It could have been solved with a simple bed alarm, but those are considered restraints. He could have died unbruised if not for that.

    We force food and medicine down the throats of people who would otherwise just slip away .
    It’s an industry. The whole Planned Parenthood organ harvesting kerfluffle….nothing compared to the money made off the slowly wasting bodies in nursing homes. The Gray Harvest. I think that is what I should write about.

    If you want to check a nursing home out…don’t go during the day, when admin can give you a carefully tailored tour. Go during a pm shift, count how many CNA’s are on the floor. Some places have them posted. Watch how many on the floor are lifter per EZ stand and Hoyer life. If people are being washed up for bed before supper, chances are that home is understaffed. Go in and volunteer to feed or pass waters on evening shift…that is where you will see when things fall down. Don’t be too shocked if the CNAs talk rough…their lives have been 40-50 hour work weeks, sometimes pulling 12 hour shifts..nurses ditto, to keep the place staffed. They’re more like front line soldiers than angels of mercy.

  261. Marlene Schunk says:

    My mother died of cancer in a cold clinical hospital by choice of my Dad … I vowed then I would never allow anyone I loved to be put in this situation. I was blessed to be able to do that very thing for my husband who died in our home of cancer surrounded by loving family and 2 and a half years later my beautiful daughter died of cancer in the same room again in a loving calm atmosphere. I feel this was my last ultimate gift of love and respect I could give them … and I pray if in same situation I will be given this same treatment.

  262. Laura says:

    This is why a living will and last wishes documents are necessary.

  263. I would love a copy! This is exactly how I feel and do not want to put my family through heartache & decisions. Where can I order & purchase a copy?
    Thank you,
    Sharon Thomas

  264. TONY says:

    My Father passed away from cancer three years ago, and at the time his parents (my grandparents)lived with him and my mom. They were moved into an Independent living retirement community to make it easier for my mom because she couldnt handle the pain of losing my Dad and having to care for them at the same time. My grandmother passed away 10 days later from a broken heart of losing her son. The visits got less and less to go see my Grandfather because the emotional pain of losing 2 of the greatest people in our lives in a matter of days was overwhelming. 1 year later my Grandfather was sitting in a chair in the lobby of the retirement home and slouched over and passed away. Unfortunately the place misplaced his DNR papers and the paramedics proceeded to bring him back…with the automatic CPR machine they placed on his chest, crushing all his 92 year old ribs. For the next week while he was in the hospital, he was on so much morphine, he was unable to speak, eat, use the bathroom, all while we sat there, waiting. Finally he passed, but not like he had hoped. His plan was to pass away..and see my Father and Grandmother come down and take him to his eternal life. Instead he was hooked up on all these machines and surrounded by doctors. I wasnt there for him when he passed , or either of my Grandmother of Father, and to this day I wish I was to say goodbye and them knowing they had my hand to hold. We have become too busy with our lives that we dont cherish the life where we came from. I was raised in an Italian family where you were brought up to know your family history and you cherished it. Now all of that is gone and I can never get that back. We need to all slow down and takecare of our elderly family members.

  265. Ann U-H says:

    My sweet, loving father passed away two weeks ago at a hospice facility. He had only been there for two days. We took him there to give Mom a break and to get extra care for him. We are all heartbroken that we didn’t just let him stay at home. That would have been a better end to a blessed life. 🙁

  266. Teresa says:

    This is truth. The person dying says “please let me go. My body is exhausted “. The family says “No! I can’t accept their presence gone, I’m selfish and they need to hang on”! Hang on for what? For their families pride that they made their ailing parent survive another hour, day, week etc. I’m so grateful I have the Lord in my life, for when He calls me home, I’ll be ready. No drugs, no machines, just His presense with His arms opened wide! Amen.

  267. ida says:

    There is a lovely thing called a living will. This allows patients the right to die with dignity and respect. Everyone should make sure that they have one.

  268. Laure says:

    Very touching reading. I completely agree on the fact, that we are all going to have a last second, may it be as comfortable as possible. Laure

  269. Susan says:

    I’m glad to know of a community of people that believe in ‘death with dignity’. I’m in my 70th year, relatively healthy and want to fill out a DNR and a living will. My health care provider has a ‘Five Wishes’ document that I don’t care for, plus, when my parents were in their last days, all of the health care providers were wondering what their wishes were and we all knew that our parents were ready to die, they even had DNR’s on file. The doctors, nurses and hospitals don’t seem to have time to read, I believe they are trained to react.

  270. Lee says:

    I am one in favor of the kinder, gentler approach to passing. We need to get it through our heads: we are ALL going to die. What good is a couple more pain wracked days, weeks, or even months. Don’t be afraid of death. I believe in paliative care, giving meds to quell the suffering, even if those meds hasten the end. It is the height of cruelty and selfishness to prolong what WILL happen, sometimes by relatives who didn’t have time to visit, take time to care, and who frankly didn’t give a damn. Don’t salve your conscience with my agony; it won’t help you and it’ll hurt me like hellfire itself. It should be possible to die with a few shreds of dignity.

  271. SallieM says:

    Our Father had Hodgkins Lymphoma. His wish was to stay at home & pass in his own bed, laying on his right side. My Sister, Brother & I worked shortened work weeks at our jobs so we could take turns staying at his home & care for him round the clock for 8 months. Hospice was also in place & stopped by every few days. It was an honor to help him keep every bit of pride & dignity throughout this journey. He always took pride in his appearance so we kept his face clean shaved, his nails & hair trimmed & his bed linens fresh. But also we spent our days picking & preparing him fresh fruit from his yard, sitting on his bed eating dishes of ice cream with him when that was the only thing he would enjoy eating. Our Dad passed away in his own bed, listening to the river outside his window, surrounded by his family, laying on his right side. Everything was just as he wanted & we were so grateful to have been able to do this for him. And, we have since realized that the intimacy of our being involved in his daily care also provided a healing process for us as well.

  272. I have so many stories I could tell you, with great grandparents, grandparents, and my father. One of my great grandmothers died at home, while my grandmother took care of her. It was peaceful. Then my grandmother…a few years ago…was talked into going to hospice by doctors, etc. It was awful, with her begging to go home and the hospice care telling us we couldn’t take her out, because she had signed papers.. My mother was talked into putting my father in a hospice care, in another city. He was confused. They put him in an plastic upright chair, put a tray in front of him, so he couldn’t get out. He only had a gown on. He kept fighting the chair–asking to go home. The room was freezing. My mother asked them to warm it up….they refused. She stayed the night, with Daddy jerking and slumped over in the chair. By daylight, she order they release him. Got a transport van and signed for a bed to be delivered to their house–in the living room. I met the people and let them in. And we got Daddy back home. He was so happy, talking and joking. I stayed nights, sitting with him, talking, and helping him. Mom took over in the mornings and we had a nurse to come on schedule to only check things and leave. We had a huge family gathering the night before he died. Everyone from us children down to great grandchildren crowded the house, brought food, and talked to Dad, even though he could no longer respond. We sat and told family stories, feeling the support in the house. My middle brother stayed that night until about five in the morning. He had to leave. I was on my way over and Mom called to tell me that she thought he was gone. She was calm when I got there. I checked Dad and knew he wasn’t gone…just very quiet and getting ready to leave us. I was able to tell him it was okay, that I’d take care of Mom. He slipped away. With so many generations in our family all alive at one time … we’ve never had a good experience with hospice. I’m sorry, it’s the truth for us.

  273. Leslie says:

    I agree 150 percent and salute you for an extremely well written piece of work!

  274. Darlene Hiler says:

    I wish I could take my father from the Alzheimer’s Home, to fulfill his desire to die on his farm. He died too quickly, which I know was a blessing. He did not want to die in a hospital, a nursing home (which he never happened), he wanted to be at home. I was far away in a different state, I still feel guilty but at least he is truly home.s I wa as

  275. Liz says:

    This is so true and does need to be discussed more – thank you for the wonderful and insightfull read.

  276. Ranny clubb says:

    While I exalt the latter and it’s comments, I had a couple of brain waves that touched each other for a thought.
    Understand the intent but I question rolling back the situation to our relationships one with another. Even while we are alive and healthy we don’t get the visits, we don’t get the reminiscence, and we are guilty of not taking the time to even pick up the phone (for goodness sake lets quit the text and think it’s personal, ) I’m guilty of driving by the rest home 3 times a day and not stopping..or If i did …wonder if I could put a price tag on the smile it might bring…

  277. Reblogged this on oklahomabiker and commented:
    What a unique perspective on old age and dying…I would like to be at home with my loved ones when I go. Whatta bout you?!

  278. Carole says:

    Thank you for your loving thoughts. I will share with my friends and family so they can say goodby.

  279. Reblogged this on The Thoughtful Pastor and commented:
    I’m reblogging one of the most beautiful posts I’ve seen written about our dying process. This is the reason I wrote An Ordinary Death: Where Grief and Relief Hold Hands, my book on my mother’s death and our whole dying process. We’ve have just made a mess of it.

  280. Vernetta Clayton says:

    I beg to differ, it’s not about life expanding healthcare measures as insurance (including Medicare/medivaid) will more often case manage & direct healthcare practices to end supportive measures within a very short window. Very quickly these days if the aged patients own body functions do not respond by breathing, urinating sufficiently, or initiating defenses they move to end of life management and medical practices for patients experiencing multiple chronic health conditions. Further, the focus is on reducing health care cost that research asserts escalates & is most costly during the last 6 months of an individual’s life.
    What you failed to note was the presense of social supports for older Americans in past generations. Older Americans are more likely to live alone. Of concern is older Americans report in studies they have no one to call on, if they need help or are experiencing health emergencies; more less, to provide that aroma of soup from the family kitchen. Research supports that late adults live longer when they are integrated into the family structure and live among younger children. However, what is more likely in today’s American culture’s are elderly who are isolated; suffer self neglect because they do not want to be a burden or further experience total loss of autonomy and stigmas and in many cases elder abuse. Further, in America’s youth forever movement there exist a spirit of inter generational conflict and ageism which in mass considers old age and no matter the middle adult stage social push towards preventive health and behaviors or Gene pools Of elongated youth… old age bio medically is inevitable. Added, older people are not jokes, all do not experience Alzheimers or dementia bio medically and in fact more and more late adulthood individuals are in fact over medicated with a slew of psychopathic drugs which leaves them disoriented, depressed, and unable to manage their actions or body.
    Health according to the World Health Organization, U.S. DVD’s Healthy People 2020 Initiative for Older Americans asserts that health biomedical, psychological and environmental socially construed. U. S. Public Health’s Leading Health indicators recommend improvement at all levels of older Americans social ecology of health. Census and public health projects a 1 in every 8 Americans reaching the shift 85 in the United States by year 2050 and how America is going to react is the question. Added the age of social security retirement keeps creeping up, while ageism keeps expanding. Where, with whom, and how America’s aging baby boomer population is going to live longer, more congruently is in the light or will America’s older Americans add to the ranks of the homeless and vulnerable populations who reflect upon their lives under bridges and fade away in the streets?

  281. All 4 of my grandparents died “of old age,” in their mid-late 80’s. When I give a family history to doctors, they are always puzzled by this. I suppose they could have been kept alive longer, maybe years longer, with lots of medications, monitors, machines, etc. But they didn’t, and they just went when it was their time.

  282. June Genis says:

    This is why I want the right to choose to die with dignity before others have to make life or death decisions for me.

  283. Beth says:

    Amen… End of life care should not be a cash grab. Its hard for loved ones to let go, but life has a beginning and an end. The end should be as beautiful, simple and loving as the beginning.

  284. Ted C. says:

    Telling a loved one that it’s okay to pass on is the hardest thing most people and I have ever had to do. We never want to be separated from our loved ones so it is inherent within our psyche to keep fighting, keep struggling, keep holding onto the hope that our loved ones will recover and be made whole again. However, despite of our wants and desires, it is a natural process of life to eventually die. Whether it be from an accident, a crime, disease or just simply due to old age, we are meant to be born, to live and to eventually die. Life is the only game where no one will get out of it alive.

    I helped my mother care for my grandmother for several years. My grandmother was a vibrant, caring, kind and loving woman who was always active in church and the senior citizens center after she had retired. She was always quick to join us if we asked her if she wanted to go somewhere – didn’t matter how tired she felt or if she was not feeling well, she’d get up, put on her lipstick and grab her purse and off we’d go. Near the end, she simply got sick and tired of being sick and tired. She was in her mid-80s at that point and she was constantly dealing with one illness after another due to her failing health. She finally had to be put in the hospital because of a bad septic infection from a wound on her leg (she was a retired nurse and we had assumed that she was properly caring for the wound but apparently she had mixed up neosporin for vaseline which ultimately fostered her infection). She went into the hospital and three days later, she was gone. We were called to the hospital by the ICU/CCU staff as we had gone home for a break to eat and freshen up and so we were there with her when she took her last breath. She was in the bed on oxygen and while she didn’t open her eyes or talk at that point, her arms were still moving and she kept trying to take the mask off. We told her that it wasn’t life support as she had a living will in place so that calmed her and we repeatedly told her that we loved her and that if this was her time to go, then she should go and we would be all right. It broke our hearts to say it, but it was the right thing to do. A couple hours later, she passed peacefully.

    There’s not a day that goes by that I don’t miss my grandmother. A part of me was diminished by her passing as we had devoted a large part of our lives caring for her and sharing our lives with her. I don’t regret telling her to go if it was her time but it was, to this day, one of the hardest things I’ve had to do. I know she is in a better place, a place where she has no infirmity, no pain, no illness, no debilitation and that gives me great comfort in knowing this. I also take heart in knowing that one day, we will be reunited when it is my time to pass on as well.

    • Jo says:

      A beautiful story; your Grandmother was fortunate to have your loving family with her through Life and at her transition. Thank you for sharing. Blessings and Peace.

    • Mandy says:

      Beautiful tribute.

    • Candice says:

      Your story brought me to tears. I can relate to a lot of the things you said you have gone through with my recent past experiences helping my Momma take care of my Grandma. My Mom and I visit my Grandma (her Momma) in a skilled Nursing home roughly 4 days a week. She’s still with us but over the years we have learned to prepare ourselves for that day. My Grandma seems to keep getting UTI’s and had Sepsis once (which caused delirium), she ended up bouncing back amazingly but it was very sad and scary. Anyway, it is day to day and we are grateful for time with her still. Advanced dementia is a crazy disease. I’m sorry you lost your Grandma, but I’m happy she can RIP. You are an amazing daughter and granddaughter.

    • JoAnn Deneen says:

      I have been with people who have passed with this beautiful ritual of love just like the one we give birth. They are both ends of the same celebration of life except one goes on to eternity, the other to a life here on earth.
      I would add that one key point to this issue is that we have moved so far away from a family-oriented culture. One of the adults, usually the mother, is no longer home-centered. We have shifted from a farm-oriented and homemaker culture to one where the only meaningful thing a woman can do is work outside her home. I am not advocating that all women become full time homemakers, just that we have lost that focus. That is how Mom or Grandma can have a peaceful passing on, because someone is there to help. That could be other people but someone has to be the constant.
      I think that is why we have the industry of nursing homes and other facilities. It’s because there is no one whose life would allow this much time away from their schedules. Just like the article, this is not an indictment. Just that as soon as we place a loved one in a situation that is out of our hands; that’s what it is, out of our hands. This lovely, peaceful way requires decision-making that we forfeit.
      Of course, there may be some end of life care that requires a short hospital stay, but even that can be mitigated by a firmly written advance directive very prior to the person’s lack of ability to reason for themselves. This can still allow the family to have a peaceful transition even from a hospital bed because the wishes of the patient have to be followed–no resuscitation, no treatment for anything that would be fatal if left alone, etc. Reasonable stuff that the hospital staff would be obligated to do in lieu of the directive.
      I’ve been part of hospice care in the room with people playing a harp, or people singing hymns to a guitar, reading the Bible or poetry, whatever the person likes. A schedule so that someone is there 24 hours a day. Prayer. Touch. Anything that was part of their life is graciously given. It is possible there too. It still takes time and people who will offer it. And to me, time in a schedule or lifestyle is, like the woman of a past generation or many of them, could offer.

  285. Elizabeth says:

    But there are choices. People have to talk about what they want – early and often. My mother died as you say we used to die. She had cancer. For a while her treatment worked, and she had some quality of life. When it stopped working, she stopped treatment. She signed all of the papers to make it clear that she did not want intervention. Her children and grandchildren cared for her. At home. Hospice nurses supported us more than her, but gave us what we needed to make her as comfortable as possible. People need to talk about these things. It is hard. It also brings you closer.

  286. Linda Darrell, LCSW-C,PhD says:

    I so agree with this physician. We are hell bent on saving the body and not understanding the quality of life once lived by the lives inhabiting these pain stricken, IV invaded wasting bodies . When did we lose the concept of compassionate care in lieu of prolonged life?

  287. This is so true and as I have said the same thing to those who, wanted, or needed to go, Sometimes people hang on waiting for permission from those they love and do not want to see suffer. It is the loving thing to tell them it is OK to go home, to whatever they believe is next for them. My Faith gives me the strength, to hope when my time comes my family will respect my wishes an what I believe and let me go in peace. It is still Quality of life, over Quantity. Let your loved ones go when they need to. Hugs to all those who have lost loved ones.

  288. this broke my heart to read…and gave fire to the desire I have to move forward in this field of end of life care. I am still new…still reading and learning…but am seeing ( or perhaps remembering) how Sacred life AND death are.

  289. K.Towne says:

    What a wonderful statement about letting go I’ve worked in a hospital since a I was 12 always wanted to be a nurse became a CNA worked hard 11:00 to 07:00 for years needed a change went to school got CST & spent the rest of my days in the OR & after all those years of watching elders staying alive with every tube avaliable it did make me wonder WHY !!! I think you have answered my question I will be reading your book and thank you for your thoughts.

  290. Kelly J. Asher says:

    Serious conversations on End of Life Planning, actually putting a clear plan in writing and discussing your wishes with your loved ones will help to turn this madness around. It does not matter how old you are or whether or not you have a terminal illness; everyone should think about about what their wishes are and put a plan in place regarding end of life care. A catostrophic illness or accident could befall anyone, at any age. When I reach the age of 75 years I have told my children that I will no longer take any medications that are designed to prolong my life. I do not EVER want to be in a nursing home. I never want to be intubated, on a respirator, have a catheter, a colostemy bag or wear a diaper. If I suffer from a heart attack or a stroke I do not want any attempts made to bring me back. If I become stricken with dimentia or Alzheimers and I can no longer remember the names of my children and/or grandchildren and euthanasia becomes a legal option, please euthanize me before those horrible diseases can steal the rest of who I once was. If euthanasia is not a legal option; please allow me to wander off and die. I see the above mentioned as my clue that it is my time to go. I have made my wishes very clear to my children and my health care proxy. In fact, I have written them down so that all of those that love me will know that my proxy is making sure MY WISHES are being carried out. I simply want to die peacefully and with dignity. I also would like to leave something for my children and not allow their inheritance to be spent on unneccesary and agonizing life prolonging procedures that will only add to the suffering of myself and my loved ones.

    • It'sjustnotthateasy! says:

      Where to start…Sounds very much how my mom wishes to go. She attended her grandsons wedding on July 12, 2015, walking down the isle looking beautiful at the age of 97. Two weeks after that, my sister noticed she looked jaundice and took her to the Dr. In short, she was diagnosed with pancreatic cancer. Her only wish was to attend her other grandsons wedding (brothers being married a month apart) being held on August 21, 2015. Dr. promised her she would make it to the wedding by implanting a temporary stint to drain bile and gave her life expectancy till the end of October. Her wish is like yours spot on.. We want to make sure she remains in her home looking out that window! She would be gone by now had she not had the stint. Mom lives in Boston. My sister, who lives in Ohio took the FMLA to be with my mom for the end. When it was clear my mom wasn’t going anywhere, anytime soon, my sister said she had to get back to work. I work part-time at two different job and am not entitled to the FMLA. Blessed, that with the hospice paperwork my jobs allowed me the time off to spend the best six weeks of my life with her. Only, still, doesn’t look like she is going anywhere, anytime soon, so, luckily my sister from California said she would spend six weeks with her since that is what my sister and I did. The Dr. is dumbfounded that she is still in no pain and is actually doing just wonderful. I keep saying she will live to see her 98th birthday, which is February 11, 2016. Now, my sister who lives in New Hampshire is driving to be with my mom from Thursdays, through Sundays, and we have an aid with her from Monday through Wednesday along with my brother who has health issues, seeing her daily. One the light side of things, I am the youngest of moms 9 children and I teased her that this is her way of making sure we all visit, like the good old days, before jobs and the everyday crazy, hectic lives took over. I can’t even begin to say that if it was not for the Hospice paperwork, I didn’t think I would have my jobs to return to after taking six weeks off of work. I wish I could just go and stay with her as we are running out of family members that can. I guess when the stint fails or other complications start, I plan on letting my jobs know that I must get back to Boston. We must make sure my mom stays in her home. I think my wonderful, amazing strong willed mom has a new goal to meet. She just found out that my nephew who was married in July, is expecting their first child at the end of July, 2017…We shall see…..

  291. sonomarose53 says:

    Beautiful, evocative essay. Thank you. You’ve described the way I insist on dying. I truly believe the Boomer generation will change dying. We have seen the horrors perpetrated on our parents, and we are saying ‘no, thank you.’ My second husband and my daughter are very clear on my Do Not Resuscitate wishes; they are also very clear that, should I become utterly lost to Alzheimer’s, that I count on them to find a way to release me from my misery. Of course, money should not be an issue in dying, unless it is the expressed desire of the dying person. Myself, I do not want to be kept alive to the tune of hundreds of thousands of dollars as I lie in bed, oblivious to my loved ones, unable to even comprehend a television show, or enjoy music. My former husband’s grandmother went through six hundred thousand of her life’s savings, all of it, to pay for a few years of being a vegetable who neither recognized her children or who could speak. Even after she made her family promise this would not be her fate – a promise they did not honor. The emotional fallout was so great that my husband and I divorced: I could not believe they would ignore her wishes, and let her live in such grim surroundings. Here’s to the peaceful death, looking out the window to the light, and the familiarity of those we love nearby.

    • Morpheus Rising says:

      Oregon and California have already passed Euthanasia laws. I would choose that to existing as a zombie while having my finances drained.

  292. Mary Johnson says:

    Thank you.

  293. Virginia says:

    Many of the commentors here have deeply-felt stories of handling the last days of someone who was known to be terminally ill. As someone with an elderly parent in mostly-good health and mental capacity, my worries are different: when there’s an acute problem, how do we figure out where to draw the line in invasive treatments? Will we be lucky enough to have doctors that know the difference between giving information on available choices and giving realistic advice that delineates the likelihood of different outcomes? We have come close to being in this situation in the past year, when my father’s pneumonia almost raised the issue of intubation. I wish doctors would all read Atul Gawande’s book Being Mortal and take its insights seriously.

    • Stacy says:

      That is such a hard, hard call, because at the end of the day, doctors are simply people. People who have studied, and researched, but who ultimately only know what they have read or experienced themselves. We want them to be able to make the difficult calls for us, but truly, they can only make recommendations based on what they know; in most situations, it is the patient’s wishes (or, without those, the family’s wishes) that come into play. Last year, my mom, who has advanced COPD, had a lung collapse, as well as an off-the-chart CO2 reading, and was taken by ambulance to the hospital. She was heavily-sedated (so we couldn’t ask her what she wanted, and unfortunately had not previously had any conversations), and because no living will was on-hand, she was put on the ventilator. She eventually received a trach, and was in the ICU for 4 weeks; every health professional we spoke with was adamant that she would not make it. Not only did she make it, but 9 months later, she is fully weaned from all trach & ventilator connections (healed throat and all!), and is living more fully than she has the past 2 decades (independent living situation, on anxiety & depression meds she would not consider before, etc…we just celebrated her 73rd birthday yesterday!). My point: every situation is different. Ask your father what he wants, and if he is difficult about it, pester him until he decides. If he doesn’t know how to choose (because let’s face it, that can be an overwhelming decision to make), look into the places around you that he would go if he went onto a vent, and wasn’t able to wean off of it (assuming he doesn’t have gobs of $ to pay for in-home care. In our area they are called “vent centers”, but there is only one in a 3-state radius). Sometimes when making such a big decision, it helps – SO MUCH – to learn more about the end results and care provided for each option. At least then, he could potentially say, “Yeah, I might be ok with this place,” or “Heck no – I wouldn’t come here if you paid me…LET ME GO!” While nothing is guaranteed, and things can go from positive to negative and back again many times on the road to getting well (or not getting well), those conversations would have saved our family MANY agonizing moments, let alone attempts to make huge, body-altering decisions on our mom’s behalf when we were in a sorrowful, scared, sleep-deprived state. On the flip side, we may not have her here today if we would have known her wishes…BUT, we would have been able to let her go, knowing that it was what she wanted. Best wishes to you and your dad!!!

  294. Adrienne Pasquarello says:

    Beautifully said. I just retired as an ER nurse,, plus had the role of hospice caregiver to my loving Daddy,, not so long ago. I never regretted bringing him home to die, next to me, in comfort. As sad as it was,,, I was going to be damned to let invasive useless painful things be the last of his memories. I pray for a future when we extend this wisdom and compassion more.

  295. jc says:

    sadly that was what my mom wanted and we had health proxy signed and a living will. My mom passed in her bed with me by her side. than I had to call 911. well they came and mutilated my mom saying the law forces them to revive people. my mom was 89 and dies hoe and where she wanted until EMS brutally attacked her body. they destroyed her peaceful death working on her for over an hour bagging her and taking her by ambulance to the ER. after screaming and demanding a social worker the ER dr interviewed me and read my papers and returned to my mom and in less than a minute returned to me and pronounced her dead. they then asked if I wanted to see her. I told them they were f…ing crazy to even remotely think that I wanted to see my MOM savagely abused at the hands of ems workers and drs when she peacefully passed with me in her own bed. I feel that my mom was denied the dignity that she wanted in death at the hands of the ems. it was horrible I was devastated that they did this to my mom.

    • Diana says:

      This is an excellent reason for people to think in advance how they will handle the situation after someone has died. Does your state law require that 911 be called? Could arrangements have been made in advance to simply call the coroner?

      I am so sorry that you had to go through this.

    • VMS says:

      Im so sorry to hear that. My grandpa passed 3 times and my mom called 911, not knowing what else to do. They resuscitated him and brought him to the hospital each time. The 3rd time, my mom asked why don’t they just let him be, and they said they can’t, if she calls, they have to come and resuscitate. He suggested next time, waiting 6 hrs, and then calling and saying he was found dead in his sleep and he’s cool to the touch. They would send a coroner van instead, if you tell them that. So she did. He lived about 3 months longer than he should have, because of EMTs and 911 calls, but it was not really living, it was just waiting to die again, hopefully in peace this time.

  296. deb says:

    You paint a lovely, quiet picture of the end of life. but as a doctor, I’m sure you know that it’s not always lovely. Dying can be painful and scary and messy. We stayed with my mother in law until her last breath in the nursing home, but being there among nurses and doctors allowed her comforts we could not have provided at home.

    • SeekHerasSilver says:

      Thank you for your brave voice. I also am compelled to write, for those interested in the truth. I was nurse for over 15 years, working in both critical and non-intensive settings; my oldest daughter currently works in the PCCU of a major cardiac facility, and another daughter is currently in nursing school. My brother-in-law is an MD, a full-time hospitalist in our state veteran’s hospital. I have other close friends who are medical doctors and critical care nurses. In both the home and hospital, I have personally been with 5 of my friends and relatives in their various final moments, in addition to having cared for many hospitalized patients as they died. We all agree: Death.Is.Hard., almost any way you cut it. What is intentionally omitted in this peaceful-sounding fantasy is the truth! Well-meaning caregivers, trying to comfort us, may paint death as relaxed, easy. Increasingly, the medical establishment at large portrays “allowing nature to take its course” as the ONLY right thing to do. But the fact is, dying is most often a difficult passage filled with feelings of helplessness, physical discomfort, and often at least some level of pain. In addition, now-a-days, “letting” someone “go home peacefully” frequently involves (prematurely) withholding treatment, such as antibiotics or food and water. I had one physician tell me, “Starvation is the easiest way to die,” as she was recommending withholding my 84 year old mother-in-law’s food and water in response to her frequent choking episodes and aspiration pneumonia. We opted to search for alternate ways to “treat” her choking, and very soon discovered she was being wildly overdosed on her sedative. Almost two years later, she seldom chokes, has had few hospitalization since the medication was reduced, and remains a constantly-smiley conversationalist, though bed-bound. If ever a well-meaning doctor pressures you to “let” your loved one die peacefully, ASK QUESTIONS and don’t be guilt-tripped into making fast decisions. When they suggest “compassionately” withholding treatment, consider what their “kindness” involves: How comfortable were you, the last time you missed even one meal, had no way to quench your thirst, or suffered from an untreated bladder or respiratory infection? Do you think it’s easy to be so heavily medicated that you slowly stop breathing? Who are we fooling to think that just because a person cannot talk, that necessarily means they cannot think or hear either? Also, before you agree to allow your loved one to die “naturally,” be honest with yourself: is it THEIR well-being you seek, or your own mental and physical relief? I firmly believe what goes around comes around, if not in this life, certainly in the next. Be sure your decision is RIGHT, and don’t be swept along with the lemmings.

    • VMS says:

      I think this is why it’s so important that options exist. My father is disabled and an only child. And he was unable to care for his parents in their final months at his home, he can barely care for himself. I am my father’s only child and as much as I would have liked to help, I live 1,000s of miles away and had an infant at the time and no extra money to travel and no space to care for them in my home. So his parents were better off in a nursing home and hospice. He spent 4-5 days a week with them in the daytime, and was by both their sides when they passed, my grandpa first, and grandma 3 months later. He’s very thankful for the help of the hospice workers. They guided him through it all as well.

      I hope he can stay with me when his time comes, but if he cannot, I hope we can get him such a nice place as they spent their last months in. But I do sincerely hope he can stay with me in the end.

  297. Marbeth Shay says:

    Please let a person with the compassion, love and understanding of Dr. Profeta be with me, be (have) my Medical Power of Attorney when I’m ready to join the Almighty! God Bless you sir.

  298. Rob says:

    Part of loving someone human or pet is to take on the responsibility to unselfishly say goodbye and God willing be able to hold our loved ones as they leave us. This is a lovely reminder of what is important thank you for sharing it.

  299. Reblogged this on charlie easterfield and commented:
    This is a wonderful piece of writing…I hope I can die “as we used to”.

  300. charles Baker says:

    It may be true that people don’t really live longer they just die longer.

  301. Amy says:

    I’ll tell you why families don’t let their members die “nicely”….because the system doesn’t allow it. If you withhold feeding, breathing and other machines, you are considered neglectful. Doctors do not present the idea that it’s okay not to keep trying to fix things. This is medical doctors and hospital and insurance companies running the show. Nobody is truly allowed to die at home because they aren’t given that option. Families are told all the equipment and services they have to have in place in order to bring their loved one home and nobody can afford it!!! Open your eyes doctors and take control back!! This article is great at recognizing a huge problem but does not recognize the reason for it.

  302. Sandra Coonce Whaley says:

    My mom never really wanted to die. She died Feb 10th 2010. She probably knew she was but she claimed Jesus Christ every day. I was with her the whole time. But no! She didn’t want to go. Yes she was a Christian & her life touched the many ppl in the end. She had home health, hospice, & Advantage & me, an RN. But she wanted to stay & tell more ppl about Christ!

  303. Leslie Gunter says:

    That was a beautiful read. Yes I’m so glad that we brought our Mother home to die. I see no reason to prolong the inevitable. She was at home with family with her favorite movie on,and everybody was in her room at times. We even had some laughs. I had to go homr,I kissed her goodbye and told her when she was ready to go,then go. She died about 5.00.a.m. My sister called me and of course, I raced back over. But she was at peace,I could see it on her face. I’m so glad we had that time with her. That’s exactly how I want to go too.

  304. Brid says:

    Hanging out sheets, cooking breakfast, and sending her man off to war and her child to school…really! I’m not advocating sending our elderly to care homes, though sometimes that’s an appropriate choice, but am horrified by the picture of this hopeless and unempowered ‘mom’.

    • Cris says:

      Why in the world would you think this “moms” world was hopeless? Her job could have very well been a choice she made for herself and was very happy with. Nothing in the world empowerd me more than giving life to another human. Some women, believe it or not, find taking care of a household very fulfilling. Isn’t the feminist movement about giving women choices? Not judging them for their choices . I find it incredibly sad that after reading this beautiful piece of writing that the only thing you comment on is the fact hat she was a housewife, raising her children and supporting her spouse. Shame on you! And for the record, I’m an educated, professional women who would have loved to have stayed home and raised me children.

  305. Darian says:

    Fifty percent of elders die in nursing homes? Broken ribs on our elders because of CPR? Families or even the elder can choose to not have this down. This entire article rubbed me the wrong way. Maybe we have managed to take our medicines and machines to a place they once were not, but this does not mean half of what this piece has spoken. Working in a nursing home and seeing the care, not to mention KNOWING all of the medicine and whatnot can be stopped if elder or family decides to do so. If I would have known this article had false statements and based off of bias opinion, I wouldn’t have wasted my time.

    • kent says:

      While your experience may be different than the one spoken of here, I assure you, with agonizing reality, there us noir a false statement made. My father died in the same wqays detailed, right doieb to the thin skin and CDIFF. He weighed next to nothing as I lifted him from his deathbed in the rehab center and placed him on his stretcher for one final ride. The staff were kind and compassionate but that does not mitigate the truth of the article.

  306. Twilia Chumney says:

    Physicians don’t think about hospice where patients can die like they used to. If the patient is referred earlier rather than at deaths door, they can have quality of life and a death with dignity. Most patients meet criteria for hospice before all of the tubes and monitirs are put in place. It just takes a physician to recognize it and have that talk with the patient and family.

  307. Diane says:

    My mom had a hard life and a deadly illness. After chemo stopped working, she chose to die at home. At the end, we gathered around her bed. She said ‘bye’…and moved on. Afterward, instead of tears, we rejoiced. We learned that it is as much an honor to help someone ‘pass on’ as it is to help someone ‘come in’.

  308. Mary Ann says:

    Thank you

  309. Phillip Ness says:

    While we may fear death foremost, we may in fact anticipate its aftermath as the greatest event of our existence, returning “home” to Christ.

  310. Deborah Arledge says:

    It was hard to let our daddy go but knew he did not want to live by machine and be fed with tubes. He could not give us his beautiful smile, he could not hug us or tell us he loved us. He would never be able to talk or walk again. We had so much love for him we knew it was time to say goodbye with dignity. We love and miss you daddy. Will see you again one day. All my love…your daughter Deborah.

  311. Paul Sarnoff says:

    DNR makes it easier for everyone.

  312. Tiana Brown says:

    I completely understand these words, I just lost my father in Christmas Eve, he had been battling cancer since 02 and again, bone cancer in 13, he was on a trail of meds, yes they kept him alive, everyday he was in pain and you could see a difference in him everyday. We took him into the hospital in October, hard time breathing, he had a mild heart attack, they transferred him to another hospital for test, 45 min away, in three days he changed completely when was transferred back, he did not know where he was and who I was. The doctors told us that he delirium and things would pass. The doctors wanted him to go home and we took him home, I wanted to take care of him, I wanted him out of the hospital. I had to go to work and every night I would come home he became more and more distant. He began living in the past and became more distance, he was afraid to be in my home, I was afraid to leave him alone, an incident happened and he was having what I think was an anxiety attack, I had to call for assistance and they took him back to the hospital. This was not the senecio I wanted, I just could not cope and felt like I had no options. Private care, I could not afford and a psw for 2-3 hours a day was not enough. In the hospital he contracted c.dif and went down hill fast. On December 21 the doctor called us in and discussed some options, the first doctor to even talk to us….. We discussed end of life treatment and I never knew there was such a thing. We had options to do feeding tubes, life support. I knew my father would never had wanted this. We all expected the day would come, we knew the cancer was killing him slowly, we were just great full for the time we had with him and everyday was a treasure. The last thing I ever thought was watching my father forget who I was and who he was to not eating, drinking and not able to speak. I would have given anything to be with him for his last breath, we had gone home on the 23rd and we received the call at 4am that he was gone. When we got to the hospital it was extreme sadness and relief that God took his pain away and the battle was over. I felt so much for the teams of fantastic nurses that were on duty that night and the doctor that took her time to explain everything that she did. There are some amazing people that do understand and I commend them. If we could all put our selves into those shoes, life and death would be a much more acceptable and loving thing. This article finally let me talk about what happened to my dad and I have the utmost respect for the words mentioned. Thank you!

  313. Jean K says:

    Thank you Dr. Profeta for your empathetic article on the proper way to allow our elderly parents and other loved ones to die. Having had the “benefit” of both of my parents dying in their home under Hospice care surrounded by their children I can state with total certainty that there is no better way to let your parent(s) die. For the six years my father lived after my mother’s death we often talked about how fortunate Mom was to have died at home rather than a hospital or nursing home. He took comfort in that as did we. When Dad’s time came we knew there would be no other way. As difficult each of these experiences were, I will always know that their last days, hours, minutes were spent in the place they felt most comfortable. They each were surrounded by their children with the food and drink they wanted resting alongside their loved ones who, yes, were holding their hands during their last hours. There were no uncomfortable beds, lights, noises and constant flow of medical personnel monitoring their progress. Frankly, their deaths were each made more comfortable for all of us for these reasons. I will share your article with my own two children so that they will fully understand what I want my end of life to be and why.

  314. Mary Davidson says:

    I find this article heartbreakingly inaccurate for most of our elderly. I am privileged to work in a long term care environment where comfort measures, hospice, and quality of life are not just buzz words. Not all our elderly can remain at home, for a variety of reasons. Articles such as this promote feelings of guilt for family members all ready struggling with the impending loss and current health issues of a loved one. Most residents in long term care have comfort measure orders in place, no broken ribs due to CPR, no heroic acts, COMFORT. An ER doctor has very little experience in geriatrics and has spent little time in a long term care home. Please keep that in mind. Our residents are loved and cherished, by their families, their friends, and by us, their second family.

  315. Stevana says:

    When those precious loved ones are too young to die and watching nurses pretend they are on a reality TV show is honestly painful when you feel that humanity has completely crumbled. There are more then plenty of horrible nurses that give you(the good ones) a very bad name. I’d much rather see my loved ones die at home then be tortured by nurses and cnas and whatever else you all term overpaid neglectful humans…wait lifeforms with a pulse. I’ve never seen true evil until my loved one was hospitalized. You should all be ashamed for what your coworkers do that don’t care about humans and their loved ones! Just collect your paycheck!

  316. Sydney Daughtry says:

    I understand completely.

  317. jean says:

    My great aunt was indicating time to die, I fought to get her into Hospice care, it took four extra days, then it was because the Hospice nurse tricked the facility Doctor into signing she had a cardiac issue out of control when in truth Dementia was the culprit that caused her teeth to fall out, six cavities fixed last month before she died. We tried to stay up there, everyone came to see her but her son who could not or would not, she hung on a long time waiting and hoping for his presence there, finally the police notified him she was dying and he still would not come he was sick too he said, we told her he knew this was the end, we stayed until 10 pm and she was sleeping peacefully, nurses were told if anything changes call us. Well she died all alone except for her roommate who seemed to sense through her dementia the time was near because she sat in the room with us the family instead of zooming up and down the halls as she usually did. My aunt died sometime all alone, no staff anywhere around, the night nurse found her gone at 5 am while making his final rounds. We got the call, no one knew what time but when male nurse found her was the official time of death.

  318. Margaret Sharp says:

    Please make sure you have a living will done before hard decisions have to be made so their wishes are clear and documented. Have a P.O.L.S.T. I brought my husband home according to his wishes. He died at home. I called 911 as instructed by Hospice. Told them it was not an emergency that he had died. They sent EMTs and a coroner and asked to see the P.O.L.S.T. They checked him for pulse and heartbeat and then the coroner stayed with me until the mortician could come and take him in. The EMTs even asked if they could pray with me as they has seen signs in e house of being a Christian. I am in Montana and it may not be the same in all states so you should check. Margaret

  319. Pam says:

    I brought my mom home to die in her own surroundings with her loved ones , in her own room . She could hear the familiar sounds and see the familiar things out her window. Seven short days. I wish I had brought her home home previous week. But I was begging dr.”s for miracle. It was hard to accept, it was time. But never regret having her all to ourselves. I lay in bed with her nearly every minute, sometimes her grand daughter did. But she could hear us ,even tho too weak to talk. She,was sang to , prayed with,read to and oh we went down memory lane for sure. I thanked her for my raising and told her I loved her over and over over the ten days. It didn’t matter if it was day or night, I decided to stay awake for as long as she was with me. We told her we understood she was tired and wanted to go home with her heavenly father, and unite with her son that had passed yrs before. After not speaking for 10 days she asked me in the middle of the night” are you going to be ok? ” I cradled her and thanked her again for all she had done for me and her grandchildren, and snuggled in the bed till we fell asleep. The morning came and I stepped into the hall to speak with someone, turned to see her rose to take her last breath, as the angles came to take her hand. Thankful for the peaceful passing to her heavenly home. RiP mom 1/25/2010 NEVER regret having her home.

  320. Frank says:

    But what about all the money corporations make off the dying elderly? A huge percentage of “health care” expenditures occur in the last two months of life. Should we really sacrifice all those profits just to let these people die with dignity?

  321. Ruth Senese says:

    Beautifully true. It comes from full acceptances of every stage of life’s journey. Being a caregiver for my mother for 20 plus years and recently loosing her- it was important to keep her home. Lots of joyous/ painful new discoveries of life lessons were revealed to us during the process of caring for mom at home til the very last moment she earned her wings. I pray for everyone to have the strength and caring courage to accept the new stages of your life.

  322. Maria says:

    Very well said. I know we care about our loved ones, but when its time to go HOME we have every right to do so. Why prolong a life , if they are going to be bedridden, motionless. That’s not living. God gave us life and HE will be the one to take us home. God will be the one to take our pain away. I thank God for all the doctors that still have compassion and care about their patients.

  323. Angie Hammond says:

    My mom died of lung cancer at home in her own bed with me at her side. This is how she wanted it and we honored her request. So hard for me to do but I loved her so I did as she requested.

  324. larryjben says:

    Reblogged this on randomthoughts and commented:
    A good read here.

  325. Dolly says:

    For years I have been the one who has been requested to do all we can to keep the member alive. I work furiously to help the patient stay comfortable when I just really want to scream. There is very little grace allowed in death anymore. This is a beautiful article. The ER is a tough place to work. Now I want to read your book. I am a retired RN and have seen my share of the sadness. Losing my dad made both sides so much clearer now. Thank you

  326. Arlie says:

    Beautiful essay. To those commenters who say it is a cash grab, or that the system won’t allow less to be done… you are mistaken and your comments disrespect the medical teams who participate often reluctantly, in something we have all been caught up in. I am one of them. We are glad when the opportunity comes along to do it better, which does happen, just not often enough.

  327. R. Gordon says:

    My mother let it be known that she wanted everything done that they could do to keep her alive. She was on dialysis for kidney failure due to diabetes. She was in a nursing home and did well for a few years. She eventually developed sepsis and that was the beginning of the end. In the hospital she ended up on a respirator, then they did a tracheostomy on her and when I walked in and saw that I was so upset. She was retaining fluid to the point that it was seeping out of her pores. Multiple organ failure finally took over her body and she passed. I will never forget what she went through, but it was what she wanted and she was of herself when she signed the paper. It was horrific watching her go through that.

  328. paula kirkham says:

    This is how we should be allowed to pass our bodies are often tired (if indeed we are lucky enough to live to a good age ) after fighting untold ailments ,diseases and life takes its toll why on earth would we want to subject our loved ones to continue a fight they will eventually lose anyway

  329. Bill says:

    Well written, Dr. The key is when will your profession, as you said, “chose to do what they should instead of what they could”?

  330. Mark D. Adkins says:

    Mine and my wife’s mothers and fathers all passed away at home, surrounded by family. No heroics. The all just slipped away quietly, peacefully and with dignity just the way they wanted. Heartbreaking to watch, but in the end, I want the same to. Having been to a nursing home when I was younger on a chuch project. I have never been able to forget the smell nor the listlessness of the residents. I pray I can die at home surrounded by family and my memories.

  331. Priya Devotta says:

    This is a beautiful , honest article about what really a Nursing home life is like for most of our elderly citizens . Just prolonging the misery instead of ending it with dignity .

  332. Dr. Ann says:

    Beautifully written truth. The fear of death has left us all desperately clinging to “life.” It does matter if it is a “lived” one or not. We have forgotten that.

    • Emely says:

      Regretfully, as a former State/Federal health inspector, this is very true. Living in a nursing home, hospital, assisted living facility, etc., is NOT living. I recently lost my grandmother to Alzheimer’s disease, hardest thing ever witnessed! My father, her son, placed her in a nursing home after she became non-ambulatory, non-verbal and incontinent. I was furious because my father knew how I felt about these facilities.

      There is a secondary issue here. My stepmother bought “her” mother a brand new condo, my father’s impeccable car was given to her also. Meanwhile, my little sister lives in Orlando and her room is empty. Here is the irony, my paternal grandmother raised both of my youngest siblings, cooked, helped with baby sitting. The saddest part is, they were very ungrateful, self-centered human beings. When my grandmother became a bother, she was sent away. This was very painful and am sure the readers can relate.

      My point is why couldn’t my dad’s mother stay with them in the vacant room? She had insurance which would cover a full time staff taking care of her at home. So, my father made this choice and his mother did not last but months at the nursing home.

      From a professional to others, try all possible outlets before sending them to a nursing home/ALF for external assistance. There are other ways to take care of your loved one and it is not institutionalized.

      • Paula says:

        Wow. This is very judgmental. My mother is, sadly, in a nursing home because she is bedridden, incontinent, and suffers from dementia which often causes her to be depressed, confused, and paranoid. She gets fixated on outrageous ideas that no one can shake from her mind. When she was at home, she suffered from frequent urinary tract infections despite our efforts to keep her clean. We tried using a Hoyer lift to get her up, but the house is small and it would not allow us to get her in the bathroom. She was afraid of it and didn’t want us to use it anyway. It became very difficult for two people to get her up, and even then, her brain could not tell her feet to move, so we couldn’t move her from point A to point B without a wheelchair. This meant standing and sitting twice to get her anywhere, and this was terribly hard on her because she has no cartilage in her knees, making movement extremely painful. Insurance did NOT pay for home health care; in fact, we could not get it because there had to be evidence that her condition would improve. Home health care is only temporary. We tried two different people to come help for private pay; neither worked out long term. Such help is hard to find in some areas. To people who say that a family member should not have placed a loved one in a nursing home, I have one question – are YOU willing to take this on yourself?

      • Kathy says:

        What are your circumstances? If you felt so strongly about how your grandmother was tossed away, why didn’t YOU take her in?

      • Chandra says:

        My father passed away two weeks ago. It was the saddest feeling I’ve ever felt. He was 89 years old. Since he became old age we had never left home alone. The children took turn watching and caring for him. He passed away two weeks ago at the hospital. He was blessed with his children. I stayed by his bedside 24/7 at the hospital until the day he passed. My family worked around the clock to care for him.

    • Christine says:

      As a hospice nurse for many years, I have come to know too well the tragedy and senselessness of the nursing facility/hospital revolving door scenario. And although I beg my friends and family to “just shoot me” before placing me in a facility when I become too frail to function on my own….I also know that the progression is usually insidious, not clear cut, not very discernable, and is full of both bad and good emotions for the family such as guilt, reluctance, confusion, regret, denial, and yes – hope, sympathy and love. This progression is especially slow and gut-wrenching when dementia is involved, which itself is insidious and leads families to keep adapting to the incremental losses far beyond that for which their imaginations ever prepared them.

      Of course there are families who choose institutionalizing Granny for ‘convenience’. It sadly is a reflection of much of our cultural values these days. But more often, I see families who have personally shouldered the burdens of incontinence, dietary and medication needs, unsteady gait, poor judgement, forgetfulness, delirium, paranoia, and 24/7 responsibility for many years. They have gone through disappointing and scary staffing issues involving paid or ‘voluntary’ help; caregivers who have proven untrustworthy for a variety of reasons, and last minute call-offs and needs for replacements and re-educating. They have squeezed hospital beds and other equipment into dining and living rooms for months or years because of lack of space or to avoid stairway climbs or for safety concerns. They have wrangled with insurances that nit-pick coverages, and then even worse, they are often under scrutiny by detached or unavailable family members who assuage their own feelings of guilt or helplessness by way of occasional or ‘armchair’ intervention.

      Many family caregivers become numbed, burned-out and ineffective decision makers; tapped-out physically and emotionally. They seldom recognize it…but we hospice and home-care workers do.

      So when they can no long bear the life-changing demands and they realize that the light at the end of the tunnel may still be a long time coming, because Granny has already been chair or bed ridden for 3, 7, 10 years – they are convinced, or pressured, to do what makes “sense”. They put Grams or Gramps into a nice-looking ‘place’ that promises the sun, moon, and stars in personal care and attention…unwilling to believe that it is a profit-making business (regardless perhaps of a non-profit label) with bare-minimum staffing, quality-of-life and dignity issues, restrictive and unbending schedules, and yearly room and board increases.

      So before long, Gramps gets ornery and acts out, refuses to eat or drink, uncharacteristically snarls at the over-worked or uncaring staff who then ‘avoids’ him, gets skin tears and urinary infections and flus and rotten teeth and bruises. The family is heartbroken and outraged and searches for any ‘improvement’, often being assured that an IV or ER visit for evaluation “might help”. After all, if the next 6 days, or 6 months, or 6 years can be sustained, the decision-making part of the family can avoid having their motives or commitment questioned or letting the rest of the family down.

      And so the final roller-coaster has been set into motion. And nobody is happy.

  333. Oh I so agree with a lot in this article. Sadly though not all elderly have family let alone family to care for them in the rose coloured glasses version in the beginning of the article. Many people suffer with the latest epidemic of dementia, where care giving becomes increasingly difficult to manage.

    • Sue says:

      I agree. My mother died 10 days ago. She was 90 with advanced dementia. She required assisted living 8 years ago. The last 10 years have been the most difficult of my life. We cannot judge others. I know that my mom needed more care than I could possibly give. Her balance was the biggest concern. She was tripping often. Her memory become such that she could not be left alone. Maybe if we had money to hire care workers, and to move to a bigger home with the appropriate modifications, she could have lived with us. But that would have been incredibly stressful on my family of four. It is usually the people who live furthest away, or have the least involvement, that are unhappy with the decisions that the care-givers make. These care-givers must be supported. The decisions I had to make were heart-breaking, but I could not have done it any other way.

  334. David Welsh,M D says:

    Very nice. Thank you.:)

  335. Linda says:

    So this is where we have come? It is interesting to hear this from a medical doctor because when my husbands family knew there was no hope the doctor in the hospital would not tell the family that. Instead the patient suffered and the loving family suffered. Perhaps getting this word out and affirming your awareness is the first step to change.
    Everyone could benefit with a patient advocate who goes between the doctor and the patient with kind hearts and telling truths.
    Spiritually you can pull the physical body back, but medical intervention has no power over the Spirit and the Soul.
    Thank you for speaking on this and I support your success by holding your work in prayer.

  336. Tom Clark says:

    Very well written, however there is always that one black sheep child that wants everything to save Momma and or Daddy!

    • Wanda Long says:

      Hey , Are you the Tom Clark from Chapel Hill that knows Lisa Long? I remember you if you are the same one, I am Lisa’s mom that worked for Georgette Dent! You are absolutely correct there are different spins on letting mom and dad die with dignity!

    • Nick says:

      Exactly! Black sheep or not, a lot of times, it’s the family members who are demanding this. Some poor souls stay on ventilators for years, just laying there, unable to move, eat or speak, with feeding tubes and tunneling sacral wounds. I wish someone could be allowed ask this sort of decision-making family member, how would you like to live like this? And further, how would you like to pay for it too???

  337. Lynne Sadler says:

    Beautifully written and words that need to be read and understood. I watched this scene play out day after day at work. When it was my mothers time to go she was at home, in bed, surrounded by the people she loved as it should be.

  338. Randy Berner says:

    I have felt exactly like this for a number of years, having seen four parents get sucked up into the system. My cynical view is that the Medical/Big Pharma Complex is just trying to preserve their position and profit and genuinely caring doctors like you are also pawns in that scenario; that all of the overreach that you describe is designed solely to keep them out of court and preserve their plausible deniability. “Well, we did everything possible.” The other side, of course, is “…we have the science and technology and we should use it to its fullest extent.” Ultimately it boiles down to how human the caregiver wants to be. Thank you for sharing this.

  339. ILEANE C Mindel RN says:

    Thx for this long overdue well written description of an agonal death vs a peaceful passing with Hospice support

  340. Marty BowersRN says:

    It is imperative that folks make end of life arrangements before they will need them. DNR’s, Wills, Trusts, Health Care power of attorney, etc. This can make a huge difference in how we die and our families decisions.

    • Judy Harding says:

      Thank you, Marty for your comment! You are exactly correct and right. I lost my husband last August and we had both done exactly as you suggest a few years back. At the time of his death my 4 adult children and I knew exactly what he wanted and his loving instructions to all of us. There is a peace with that.
      Judith Harding R.N.

  341. Virginia Dwyet says:

    This is so true.

  342. Anne. Ret. Rn says:

    So true and truthful about over
    Extending lives that mo longer
    Have any quality or dignity left !
    Wonderful and touching for those of
    us who let our loved ones die as
    they would live. With Dignity, and Love
    Thankyou for touching on a most
    difficult topic in our lives, society and
    Families.

  343. A beautiful and amazing article. I want to die with the smell of soup from the kitchen.

  344. Pam Hubbard says:

    Both my mother and mother in law have demanded that EVERYTHING be done to keep them alive and so we have done so. In witnessing this, many family members now question that mindset and wish to die more naturally. Witnessing a frail body being pushed to live is an eye opener for most.

    • Randy C. says:

      Unfortunately, most folks don’t know what “everything” really entails. I hear the blanket statement, “We want everything done” all the time at the hospital, and when you begin to explain what “everything” amounts to, people often start back-pedalling with, “Well I didn’t mean THAT!” Probably most people are trying to communicate the idea that they want everything possible done IF it will mean an enjoyable and functional life for the patient in the future. But that all-important distinction usually isn’t made clear. So patients consequently often end up in long-term care facilities with feeding tubes, urinary catheters, pooping themselves, developing wounds on their sacrum and hips that they in turn poop on….and get terrible infections that can kill them, etc. Quality of life is gone in many cases, and the patients may have suffered enough brain damage that they don’t even know who their family members are or be able to communicate anything at all. My first nursing job was at a long term care hospital where half of the patients looked mostly dead. If they had any mental status at all, they may have been praying for death. But it was too late for them to attempt to communicate it. So they laid there racked in pain while a machine breathed for them, etc. This goes on for years in many cases. It’s absolutely horrible. Either them or their families insisted on “everything” being done….and they got their wish. Very sad.

  345. Roberta biron says:

    This is,a very awesome article from a,dr that really cares about his patients.it makes you really stop and think.they are,keeping people alive longer but the quality of life is,not there.sime if the the thigs cancer patients gave to go through is almost as bad as dying.where do we draw the line. Thank you for this enlightening article.

  346. Joan Hohman says:

    So Freaking True.

  347. John van de Kamp says:

    Very well written, as medical professionals we sometimes forget we have two mandates, return to health or a dignified death. Remember your loved ones dignity when faced with these circumstances

  348. Susan Evans says:

    Such a powerful and important piece. I especially love the line of choosing to do what they should rather than what they could. So many people worry about “playing God” at the end of a loved one’s life. They blindly ignore the fact that prolonging a life that is over is another way of “playing God”. We should get out of the way when God calls our loved ones home and let them go with peace and dignity.

  349. karen b. says:

    …when friend of 66 years was in hospital dying, one lung deflated, bodily functions attended to by medical staff, crying out ‘mommymommymommy’, being force-fed by caring partner…..
    How I wanted her to stop living. Nothing positive would come from it. Her kids, her sisters & I wanted to end it for her, but none of us had society’s consent. It took her from may [her 70th birthday] until September to finally acquiesce.. it was horrid!!!!
    WE DON’T LET ANIMALS SUFFER LIKE THIS…. WHY DO HUMANS ALLOW THIS?

    • Judy M says:

      We are born and are meant and supposed to die one day. Whether death results from tragedy or disease, doctors and surgeons jobs are to save lives. Unfortunately sometimes they do that job when in reality there is no hope. But there are so many patients with terminal conditions, and the elderly in those final stages of their lives where there is no hope or quality of life left. I’ve seen it time and again. Honestly I don’t believe anyone truly can say that is living! Yet the docs continue to do what they do. Either way, to me they are still “playing God!”; whether they try to make a patient live longer than they should or allowing them to die. I myself have a progressive and terminal auto-immune disease and know the day will come where I do not want my family’s final visions to be of my pain and suffering as you have of your friend. So sorry you had to go thru that. I’ve always have been an advocate for dying with dignity and laws that support it. All states should recognize it for terminal patients. It gives a patient peace of mind knowing their loved ones can be left behind feeling guilt free from trying to perform care they are not professionally trained for, the feeling of being a burden, and relieving family or caregivers to absorb out of pocket expenses for their care that may be catastrophic for them. I’d have to believe our health care/Medicare costs would decrease from all the unnecessary tests, prescription meds, procedures and extended hospital stays provided – for nothing more but the “inevitable end” and “experimenting” to further research. I agree and even have said the same as you that “we’ll put our animals down to keep them from suffering…but not humans beings.

  350. Traci Thomson says:

    Thank you. I have been a paramedic for 20 years. It is a second career and I am now 56 years old. My dying patients are now much older than I or alarmingly close to my age and younger. I have been asking myself the same questions for years. Am I prolonging life? Or death? We have lost the dignity that death deserves. I don’t need to live forever. I do not fear death. What I fear is not meeting death with dignity and under my own terms. I remind my family, friends and coworkers that the choice belongs to me or to the patient. Life or the end of life is my decision and the greatest gift of love is to respect that choice. Thank you for your beautiful thoughts and for having the courage to express them.

  351. Ed Stines says:

    I am 70 and I am ready to go. As nature would have it, it is not yet ready for me. However I have learnt one thing, I am just now preparing a living will which state that I am not to be resuscitated nor my life prolonged for any reason other than to remove organs which can benefit others. What’s left is to be cremated and the ashes disposed of, any way convenient.

  352. When my father had crossed his 80th yr ,a widower for 14 years, he told us ,his 3 daughters that we should allow him to die in peace, without any medico’s aid to keep him lingering on his death bed. And we obeyed him and he had the most peaceful end at age 84 in his birth month itself. The end came just 20 minutes after I and my family reached his home and were embraced by him even as he lay on his bed.He was conscious till his last breath ,and listening to the prayers and hymns that our relatives and neighbours chanted sadly .That is exactly the end I would like

    • Beth says:

      What a beautiful passing. As much as he will be missed, I hope his exit, and the fact that is was conducted in love according to his wishes, continues to bring you peace. When my mother passed unexpectedly age 51 we were offered all sorts of life-prolonging options, but nothing that would change the outcome, and our family has always taken comfort from the peaceful and loving departure we all agreed was appropriate. A life lived in loved should really be left in love, whenever possible.

  353. Jody Garretson says:

    My father suffered an aneurysm at age 88, and the doctor told him that an aneurysm would take his life no longer than 36 hours, and that at age 88, he would not likely survive the surgery to do repairs, and my dad made his own decision to let God’s will be done and did not have surgery. I realize we were fortunate that he could make his own decision…..and I also realize that MANY elderly parents cannot do that and are at the mercy of the “establishment”…….

  354. Mary says:

    What I remember most about my father’s death in a hospital, where he had gone for a heart condition that quickly deteriorated, was a doctor walking into a full waiting room. All 9 children, many of our spouses, several grand- and great-grandchildren. The relief on his face when we unanimously said, no heroic measures. He died peacefully an hour later. That can be a blessing…

  355. Amy Ruth says:

    I couldn’t agree more. When my time comes I would like to die just as i have lived, in peace and love. Hopefully my family would be with me, at my home not in a hospital or other facility.

  356. Loving Mother says:

    I have considered what was written here and I humbly offer an interpretation of why we try to keep our dying with us.
    We are living in an age when “time” is something that we look “forward” to having. We will have more time to relax once our weekend arrives; we’ll enjoy that family holiday down south once we’ve saved enough cash to pay for it; we’ll drive out to visit with the folks once we finish painting the house.
    We are squandering our “present” by waiting “until”.
    I remember the days you wrote about, when kids played boardgames endlessly in the backyard, and neighbours visited each other of a summer evening around a clutch of kids doing handstands and cartwheels on the front lawn. Our lives were lived as they were “happening”. We didn’t put off the visits for another day or year, because life was itself a visit of sorts…a visit to the realms of childhood play, a visit to the storyland of a neighbour’s past; a visit to a dreamland where parents wondered aloud what their children would become.

    We have lost our moments together. Our children are sent to other places for someone else to raise and to hear their dreams. Our families are shamed into believing that having less is somehow a social failure. Single parents struggle to find enough time even to sleep. And, the elderly see themselves as a burden to their time-challenged children who feel guilt when they forget to call.

    Of course, we keep our dying with us through extraordinary, and horrifically painful means. We had no time to share their love and their stories when they were “living” their lives around us.

    I hope I have the chance to slip quietly into that good sleep. My own children won’t likely do what you are describing. It won’t be too long now, and I have no illusions about how it will come to pass.
    I left my career, stayed home with them until they were in their twenties, cooked big dinners when they’re friends stayed over, listened when other parents wouldn’t, and did the Friday night chauffeur run for those who were going to be embibing.
    As a society, we can try to make things the way they were, but life has a habit of leaving the past behind. So, if I’m going to die soon, I choose to die at home. No hospital. No ambulance at the last minute. Even if I’m alone when it comes, it will be on my terms, and a “living will” should take care of that. I didn’t lose any of my time with the ones I love.

    My children are grown men now, with their own families, making their own memories…new ones. I hope they learned from their mother. We have nothing to regret. No need to say the long goodbye.
    There is still more time than life. Use it!

  357. Gina says:

    May me true to some extent but there is middle ground. Not providing any care to someone because they are elderly and should die is not right either.

    • ginger says:

      Gina you are absolutely right. I have been involved with care taking in five deaths and do not feel good about any of them. None were those horrid conditions described above. Nursing home care is not always as described. These are challenging times. It is time for people of differing views to sit together and work out the right solution. I do not advise signing living wills.

  358. Linda Gettings says:

    Finally someone says it like it should be. I watched my father die a horrible death on dialysis, COPD, diabetes. The last night he went into congestive heartfailure for the thousandth time and i said “Dad, we need to go to the hospital” His reply “sweetheart how about I just stay here” The most difficult part is understanding that your loved one is going to leave you. The most compassionate part is understanding that they are ready to go. This was one of the hardest days in my life, my best friend was leaving me, but i watched the anguish, the quiet suffering, and I new in my heart this is what he wanted. It was not about me. Thank you for writing this beautiful piece. I am now 58 years old and a nursing student myself and I see this all of the time. It is difficult to see, but it is the true existance.

  359. R.N.M. says:

    I was adamantly opposed to hospice for my mother because I felt they would hasten her death or refuse her equipment or life-extending treatments, but nothing could have been further from the truth. Much more so than in the past, they not only help you to die, but to live until you die. Overnight, my mother had a Hoyer lift (I learned how to use it, and I’m tiny), a daily bath, a weekly nurse, a hospital bed, and all the supplies for in-home care that we could have wished for. They were all that kept her out of a nursing home, and I had tried EVERYTHING else (agency help was useless, and freelance was criminal). I did insist on keeping her own doctor, who actually came to the house to see her (!), and also on continuing to use her own pharmacy. Yes, I still had my doubts! I was also adamant that, should she get sicker, we would visit the ER instead of “letting her die,” as that was her wish, and we did this several times without getting kicked off hospice. She lived another 18 months after the “rehab” gave up on her, and in the comfort and security of her own home, cared for by loved ones (the hospice staff was also great; although we didn’t personally use them, volunteers will even sit with patients for respite). Additionally, a social worker, pastor, and grief counselor are offered to families. If this is an option that would help you “fill in the gap” and keep relatives at home, I would urge you to look into it.

  360. honoria3 says:

    As a 92 year old, still functioning, although painfully, I truly hope for a quick and dignified end to this life when God beckons me. I am ready to go and have prepared the paperwork to give my daughter authority to provide this. Hopefully, my physicians will co-operate. My personal thanks for this compassionate article. Bless you!

  361. Merrill Wheeler says:

    We need to accompany the dying with love and acceptance, listening to them and helping them to leave no unfinished business, nor leaving any ourselves. Hospice care can be very loving. I don’t know of anyone who wishes to live in an old folks’ home or to die in a hospital, though all too often these seem the only options open to us. Although no one has a crystal ball, honest communication between medical staff, patient and family is essential. The patient’s wishes should be heeded in so far as possible and painful life not prolonged indefinitely unless it be the patient’s true will. Where possible, the patient should be released to die in familiar surroundings. It is often the case that the patient is tacitly waiting for permission from loved ones to go. When we give the patient permission, I trust that the patient him or herself knows when it is his or her time to go even if he or she appears to be less than fully conscious.

  362. jrtrainor says:

    My Wife passed on Dec 13,2014 at our home because that is what she wanted. She spent most of her last year in a skilled nursing center with all the tubes you can imagine. I spent every single day with her hearing her beg me to take her home. When she was finally able to come home, she was home around seven weeks when again she went to sleep and I could not wake her, it was back to the hospital again. She finally recovered again but this time her lungs were deteriorating to the point that she needed oxygen around the clock. She looked into my eyes and said, Jim I want to go home with hospice. It was not an easy decision but it was the right one What she wanted was more important than what I wanted. I am truly a blessed person for the privilege of having her in my life for 47 years. God Bless

  363. Ralph Raynes says:

    So very true and sad lets get back to the old ways .

  364. Chip says:

    Although Dr. Profeta’s well-written reflective evoked strong, sympathetic emotions in me, the coin has a flip side: my mother’s last months were far better than they might have been in a past age, thanks to modern medications and institutions. What she feared the most was becoming afflicted with Alzheimer’s, and, to be sure, modern medications and institutions didn’t prevent that from happening. However, her dementia was manifest in verbal and physical violence, which in a past age would have been addressed in a far more intrusive manner than it is today. Instead, she was prescribed medications which didn’t appear to dull what was left of her mind, but which allowed her to live her remaining days in relative calm and peace. Her paid care-givers provided company and companionship in her institutional but independent apartment at a level which neither my wife, nor I, could ever have provided. She certainly didn’t die as she would have wanted, but her passing was far gentler that it would have been had it happened 30, 50 or 100 years ago.

  365. Erin says:

    I understand the point of this article and agree that it is horrifying when a 96 year old is a full code. However, the author’s explanation and view of nursing homes is downright insulting. A death in a nursing home should not be compared with a death in the emergency room or hospital. Nursing homes are often portrayed in a negative light, and I do not like perpetuating the myth. Everyone wants to pass away peacefully in their sleep, at home, surrounded by family. Unfortunately, we don’t all get that gift. Some of us will develop a terminal dementia that will slowly destroy our brain and rob us of all our memories that make us who we are. Some people suffer a massive stroke making it impossible and burdensome for our loved ones to care for us at home. As a result, yes, people will end up in a nursing home and eventually pass there. This does not mean they will be “penned in a cage of bed rails and soft restraints,” “fed a steady diet of Ensure through a tube directly into her stomach,” or be surrounded by teams of doctors, nurses, monitors, and medical supplies when they do pass. First, bed rails and restraints are illegal and if a nursing home is using such equipment they will be shut down immediately. Secondly, feeding tubes are rarely placed in a resident and if they are, it is that person’s decision. Lastly, people who pass away in a nursing home are surrounded by their family and also by staff members who care deeply about them. DNRs are upheld and people are able to pass as they would if they were in their own home. If a resident chooses to be a full code, the risks and process is explained to them and their families at length. Should they choose to be full code, it will be a traumatic death, but that is their choice. Our staff outwardly feels and mourns the loss of residents; they become part of our family. To insinuate that dying in a nursing home looks as the author describes is inaccurate and makes good, loving people feel awful and guilty about doing what is necessary for themselves and their beloved family member.

  366. David Rinaldi says:

    More than 9 years ago my wife of 35 years died of cancer. It had appeared suddenly, stage IV. In spite of treatment she died 5 months later. The last 8 days were in home hospice. She attained peace in those 8 days and I was next her when she took her last breath. It was a good way for her to die,, peaceful, and helped me and taught me a lot about living and dying.

  367. Cindy says:

    I have one daughter. I do not ever want to be a burden to her. When the day comes that I can no longer live alone I will be in a nursing home. Sad but true. Sometimes family can’t take care of their loved ones at home. I have worked in a nursing home for years taking care of the residents. I can tell you firsthand that is somewhere I do not want to be. Every word this Dr wrote is true. We don’t all have the choice to die at home. I can tell you NONE of those residents WANTED to be there. Very sad place

    • Mary Beth G. says:

      Exactly how I feel Cindy.As an R.N. since 1984, I have never worked in a Nursing Home where I would’ve wanted to be a patient.I did my very best to treat every patient as if they were my own family member. However, due to lack of adequate staff, I’d find myself as the Charge Nurse doing meds, wound care, sending a patient out to the hospital, filling out incident reports,calling MD’s, keeping my eye on some less than ideal staff, dealing with emergencies ( especially when side-rails were deemed ” restraints ” ! ) , helping the CNA’s, & all the while attempting to give what little time I had to spare to patients suffering through their end stage of life ( with poor pain mgmt.) More often than not, I’d be teary on the drive home hoping that I did everything possible to provide for my beloved patients’ needs.I began a new job at an indigent Nursing Home ( run by the County, poorly funded, cloth diapers,use only 1 G-tube per month, etc etc ) & wanted to quit that first night ! But I felt I had so much to give to these sad, lost patients.It was a nightmare, there were both good & bad staff members, but once they worked for the County for a certain amount of time ( 3 mos.) they had tenure & it was extremely difficult to fire the bad ones & they knew it.I don’t know where these great Homes are located that people are talking about… I’ve worked in NY, NJ , & PA…, but I know when I had to place my own Mom in one because I have a terrible back injury & she had Alzheimer’s & it was impossible to care for her at my home ( I tried ), I was very sad.I had to trick her by telling her she was there only for rehab so she would cooperate & she believed me.Naturally, they took her $$, & she was placed in a room with 3 other patients, one who screamed out constantly.The guilt was overwhelming & thank the Lord she passed after ” living” there for only 6 mos. I’ve worked for Hospice, however my patients only received a scant amount of hrs each week.I don’t have any solutions, I can only keep praying that I’m able to keep my husband, who has several serious health problems,at home with me, God willing. Bless all of you !

  368. Jan says:

    As a nurse with 20+ years of ICU experience, I’ve seen many elderly patients tied down with tubes, IVs, ventilators, pleading with their eyes for someone to end their misery. I would see my sweet little mother in each of those patients and I vowed that I would never do that to either of my parents. Choosing to “let go” of a parent is hard and often means earlier death but it is a wonderful gift to give that parent the right to live his or her last days in peace, comfort and dignity.

  369. I don’t fear dying, but as my ex-father-in-law put it once “I’m scared of the pain it takes to get dead.”

  370. Anne Brennan says:

    Thought provoking.

  371. Carl Seale says:

    I long for the simpler life. I just went thru this with my mother of 94 years in November of 2015. She lived with me until about three years ago when my brother whisked her away to an assisted living; where she hated the last 3 years of her life since she no longer lived near any of her friends and few of her relatives including me, her youngest son . All of this so that at the end they wouldn’t let her die in a clean hospital for less than a week. No! We must send her to a nasty old nursing home to leave this world in a poor excuse for living…especially no good smells of soup cooking on the stove , only stale depends full of pee. Is this really modern medicine? If it is, let me die in the country rather than the city. Let me leave this modern world with some old fashioned dignity. I know there are no perfect solutions, but as a society we are missing something somewhere. Maybe we need to give less freebies to the young as in welfare; and better care for those who worked or cared for others all their life. Something is just not right here!

  372. Helen Leamy says:

    This is why we have Palliative Care – dying in a place of our choice – whether it be at home or in a hospice . Our Palliative Care Physician can advocate for us – giving permission to the oncologist or surgeon that it is ok to let go now.Palliative Care teams are often called in too late , when they can be advocating for the person that is ready to let go and die peacefully.

  373. songsalieri says:

    It depends largely upon the doctors and nurses involved, and whether you make your wishes clear. My friend was hounded by a doctor to “let his mom die with dignity”, no more food and water until she dehydrated to death….ummm…nothing dignified about that. A nurse approached me, insisting I talk him into it….right next to the woman being discussed. I asked why and was told she is old and she cries. I looked at the ill woman whose eyes were full of fear. She shook her head no and began to cry. The nurse said see, she cries I had to force the nurse to clean her breathing tube. The son insisted his mother be fed and given medicine. She recovered from pneumonia and thanked me profusely for speaking up for her. When she finally died, it was quietly in her sleep.
    My own mom, in contrast, had a great doctor. I was called when her lung condition got to the point medicine no longer worked well. I took all my kids to the hospital. She was visited by as many as could get there and was on the phone with the others. Then she refused the breathing treatment and asked for pain med. The doctor said the pain med could shorten her life by as much as 2 hours. I said hours, not months or even days? He said hours. Everyone agreed she should get what she wanted. She went smiling and blessing God. I did not go with the others to eat and she yelled at me! The last thing she said to me was: “You are not priviledged to be the one in this bed. Not today. Your time will come, but until it does, you have children who need you and I won’t have you passing out, now go and eat. Take care of yourself so you can take care of my precious grandbabies”.
    I am now blessed with a nurse for a daughter. I trust that she will speak loud and clear for me if need be when my time comes, and all my kids work to see that I get good care until then. Ironically, my daughter, who is a nurse at a nursing home, is determined that I will not be in one, no matter what happens. She could be making better money but won’t leave the facility understaffed. Its in a remote area. Doctors and the government need to stop deciding for us according to what surgery someone wants to get more practice in on or what drug needs more guinea pigs at the moment, or what their personal view of life and death is. I don’t believe in “assisted suicide” which could be abused and forced upon people, or “death with dignity”, which is far from dignified. Those are deliberately ending life. That’s killing. But I do think patients need to decide how much life prolonging treatment is appropriate, and directives are imperative for everyone old enough to make choices. My paperwork needs updating. Put that pot of soup on the stove in case I want a sip. I think we should have “wait and see” rooms where those who doctors think are at the end can have music, friends and family, comfy beds and great pain meds, soup or juice, and if no friends or family, clergy or counselor to ease the heart and mind, a telephone, whatever, and the comfiest jammies. That would be death with dignity. Then celebrate the fact that I lived and went to a better place, and get on with life. Its awesome.

  374. J. B. says:

    I remember when my grandmother died of a heart attack, she was in the hospital and it was sudden and quick. Her father, my great grandfather, was a couple of floors above her, dying of cancer(he chewed most of his life). I missed saying goodbye to my grandmother( I was in the Navy) but made it to the hospital the day after she died. I went to visit my great grandfather. He couldn’t talk because of the tubes in his throat, but I could see the pain and suffering he had. I remembered what he looked like when I was a little boy. He looked nothing like the man who taught me how to whittle a stick, or about how to be a man. When I got ready to leave, be grabbed my hand. He still had a strong grip, and with a pleading look, movedy hand towards the venterlator, which he couldn’t reach. He wanted me to turn it off. I cried and said to him I couldn’t do it. I couldn’t take his life. I was scared of the consequences. He let go of my hand, stareing angrily at me and turned his head away from me. I apologized to him , said that I love him and left. He lived for one more month before he passed. I have felt guilty for not turning the machines off. He was suffering and wanted to die with dignity and I couldn’t do it.

  375. Kiley Floren says:

    The Conversation Project is a campaign to encourage people to talk to their loved ones about their end of life care – it is much easier to make these decisions when you know what your loved one wants! This free kit helps walk people through their own decision-making and provides guidance for communicating these preferences to loved ones: http://theconversationproject.org/starter-kit/intro/

  376. Duane Wingo says:

    There is hope in the field of palliative care, where sensitive medical professionals walk beside and guide anguished patients and families in making difficult but often rewarding decisions regarding end of life care. Privileged to be a hospice nurse, I have seen the beauty the writer describes in his initial narrative of a “good death”.

  377. My mother stayed in the house we grew up in until she took her last breath. She had suffered from Cancer for 6 months. My father refused to put her in a home and we all agreed. She was 62 years old and he woke up with her gone. It is better to be with your family, in the comfort of loved ones then in a nursing home with employees regardless of how amazing the nurses and doctors are. I would do it all again if I needed to.

  378. Lisa Davenport says:

    The final step of death is just as individualized as the person’s life. There is no empiric “right” or “wrong” way to do it. The real key (in my experience) is good, frequent communication with patient, family and caregivers. Patients should spare their loved ones the agony of trying to guess what they would or would not want done. Family members should listen and love them enough to let go when it is time. Generally, the family member that insists that everything must be done usually does so from guilt. Again, this is a failure of communication.
    As a member of the healthcare industry, I can admit we can do a much better job at communicating a patient’s prognosis. That’s difficult- it goes against our training, where death is the ultimate defeat. We need to learn, to BELIEVE, that death is just another step in the journey of life. We need skills in recognizing and communicating when the opportunity for cure has passed, but there is still time to heal.

  379. Sue says:

    Towards the end of life, families need to hear advice from the Doctor. I made the decisions on my mom’s behalf for the last 8 years and up until she died recently. When in the hospital near the end, we just wanted her comfortable. The Doctor was compassionate and me with these difficult decisions. She had not asked for food for days. We chose to respect that, but we did have to battle with some nurses. This article simplifies the complexities of the now common realities of Alzheimers’s and dementia. My mom needed the level of care that only a nursing home could provide. But at the end, we were able to help her pass peacefully. It was beautiful, with only her kids in the room. Be kind to care-givers. It is the hardest job ever.

  380. Narelle says:

    This is not a very true picture of what happens in death, then or now.
    The romantic notion of gazing out the window, fading peacefully away with soup on the stove is so very far from the truth of total organ failure, dehydration and pain its laughable.
    Has this man ever been at the bedside of a person dying naturally? Seen their struggle to breath,. Heard the rattling of fluid filled lungs and seen their leatherised lips?
    Its utter Hogwash to insinuate that the interventions vused to prolonge life as described are common practise. and likewise the use of bedrails in nursing homes.
    Perhaps America is a long way behind the times when it comes to palliative/ end of life care. Bedrails are banned in australian nursing homes. More likely to be surrounded with pillows and airmattresses to prevent injury and a discreetly hidden infusion of pain relief and muscle relaxants.
    The gung ho approach to heroic saves that Americans seem to thrive on has no place in a caring palliative environment. Ive been at the bedsie of many dying folk and can say without reservation that they have all been given every opportunity to die in comfort with dignity and respect. Much of which would not happen if left at home lying in a soiled bed occassionally touched on the had and tortured by the offering of soup that would chhoke them if they tried to swallow it.
    Its difficult enough for people to cope with the realisation and persuant self condemnation that they cannot care for their loved one at home anymore. Yes some do but these are exceptional folk.
    Yes consider how it is best to allow a dignified death but dont accuse todays carers of being barbaric to the dying.

    • Laurie Mead says:

      Perhaps you are missing the whole point he is trying to make. By using these “heroic” measures that weren’t available many years ago, we are extending people’s lives much longer, simply to apease families desires to have their loved ones with them (in a nursing home of course), unable to walk, talk, or feed themselves, unable to do even the simplest of basic self care. That is not a life I would care to live, and with any luck my family would not put me through that.

      The writer of the post was not saying we as caregivers are barbaric but that we now have so much technology available that we extend life without really considering the quality of what we are preserving.

      • Kc says:

        I agree Laurie- they missed the entire point.

      • I completely agree with the perspective this article takes, largely because my brother and I had to make the decision to “pull the plug” on my mother, who had lost brain function in the days before we let her die. The choice was much easier for me than it was for my brother; he had an extraordinarily difficult time letting her go. When I conveyed to the collection of six or so doctors we consulted with that it was clear she was already gone, the doctors practically cried with relief. One of them immediately replied that she was glad we understood that they could do nothing. My mother had a “do not resuscitate” order, yet the reality is that she lay between life and death for about a week while my brother agonized over what to do. The staff kept trying to take out the breathing tube, in the hope she would breathe on her own. At one point, I became ridiculously angry with a nurse who, although well-meaning, attempted to reassure me that she had seen people get up from these conditions, and live out the rest of their years. I asked her if the people this miracle had happened for also had the underlying conditions my mother suffered from, whether they were also 71, a smoker, with COPD and diabetes, who had never given up her daily habit of drinking too much after my father died. I do not blame the doctors at all for allowing this charade to continue for the week it took to do the brain scans and see that she continued to deteriorate each day, that she suffered multiple brain embolisms, lost control of bodily functions, etc. The point is, she was not in a coma, she was vegetative. Vegetative means there is no use to employ the “do not resuscitate” order. Vegetative patients can last for years, draining the resources of the family. Fortunately, my brother saw the evidence he was looking for in the CT scans, and let her go, albeit unwillingly. She was dead, basically, that whole week; her eyes wandered randomly from side to side. He would hold her hand and tell everyone in the room that he felt her squeeze his hand, but the fact is, he made that up to comfort himself in his intense grief. Around us in ICU, other people stood over their relative’s beds, and I noticed that everyone else in that ICU was much more functional, more obviously alive, than my mother. She had died the week before, from a massive brain embolism, and yet lay between life and death. Agonizing decision for us to make, yet it was necessary to move on. The point is, the “do not resuscitate” paperwork was absolutely meaningless, and often is. Might as well pay an attorney to write up a piece of paper that says your next-of-kin can decide what is done with you, because that’s the reality. The doctors cannot decide, and they will hope that you are strong enough to realize when someone is not coming back.

      • Joanne says:

        Not for me to judge whether or not she is missing the point. Just as we are not all born in the same way, we do not all die in the same way. I agree with the points made in the article as well as some of the points Narelle makes as well. Wouldn’t it be wonderful if we ALL could die peacefully of natural causes. Life and death are not a one size fits all and the meaning of dignity to one may not be dignity to another. And most of the time families and medical care providers want to do the best for their loved ones and patients. “Tolerance”

      • Nicole says:

        agree..we tend to forget the nursing is the people’s home, and there are things done there..that have no place to be done! Die with dignity yes…but in some nursing home the soup and the food are not good….nutrition is awful…saving money, or write good notes on the patients is not the most important, making this part of their lives happy …is!

      • Ellen says:

        I agree Laurie that the extra measures are at issue, yet quality of life should be most important and discussions with medical professionals should weigh heavily!

    • Suzanne says:

      I think you’re missing the point of this article. It’s speaking to those family members who insist on everything being done for their extremely sick family member who are obviously dying but family wants to hold on and ‘do everything’…including full resuscitation effort and putting in a breathing tube just to keep the patient alive. Unless you are in a hospital on a daily basis you probably can’t appreciate how often these scenario’s play out. There are times patients are literally kept alive by artificial means for weeks and months. These are the scenario’s the article speaks to.

    • Curt says:

      Very well put!

    • Couldn’t have said it better. This piece romanticized death and quite frankly, his realism and nostalgia is exactly centered where he knew, Midwestern American white reality.
      What about the picture of the person of color? Those Lillie whites and little brother in overalls was to us, denigration and slave master mentality still rife. We couldn’t afford hospitals and were not let in most. Our old were cared for, and in tears and sadness, we clung to hope. Saying goodbye was often difficult and heart wrenching.

      • ‘Couldn’t have said it better’? Far from it Dotta! Guess you chose to overlook that part of nostalgic Midwestern American healthcare reality where care had nothing to do with access to a hospital (not every town had one) and everything to do with old docs or wise old women making house calls and providing home care for the sick and terminally ill. If thoughts of ‘Lillie whites and little brother in overalls’ is haunting you, try some counseling. The truth is this .. Saying goodbye is heart wrenching and difficult PERIOD!

      • Linda says:

        It’s always about race, isn’t it. For God’s sake, there are poor white people, too, and it pains us just as much to lose our loved ones. They’ll always be racism, as long as there are people like you.

      • mnethomas@sbcglobal.net says:

        Dotta, why on Earth would you turn this into a racial issue. It is not. It is a human issue.
        This isn’t “Black lives matter”…. this is ALL lives matter.

    • Jan robinson says:

      That’s exactly how my Mother died, in my house on a horse ranch with family coming & going. she had a large bay window that she could look out of. We got her a bed that would raise up & down like a hospital bed, only it was a Posturepedic w/ egg crate mattress on top. I couldn’t have done it without Hospice though. One of the most wonderful organizations & government benefits that has ever been established. We also had a private company to come & help out at night. With the help of an O2 machine , Pain meds, and an enormous amount of LOVE she died in comfort & in dignity. She was 86 & terminal with advanced Lung Cancer. I wouldn’t have done it any other way. I was able to be with her when she took her last breath & experience the Angels coming to Whisk her away. My Sister is testimony to that. Unfortunately people are so very busy with their lives & have to work so hard due to the competition in the work force, & their
      lifestyles. I was fortunate enough to have my business at home so I could be here 24/7. Don’t get me wrong, I was exhausted both physically & emotionally. but I would do it for her again in a heart beat. Sincerely, Jan Robinson Kelseyville, Ca.

      • Janet Heidtke says:

        Jan Robinson, thank you for taking care of your Mom the best that you knew how, my sister & I were able to take turns giving my Mom Love & comfort along with the rest of my family helping in between until her passing! Your right about it being exhausting, but if you love someone very much you will give your time & energy to the them because nothing at that time matters to you & they would do the same for you! It’s all about the Love!
        Sincerely, Janet Heidtke, Thorp, WI

      • My Mother also passed away in my home. She had a beautiful bedroom set up just for her with the curtains open to allow sunshine in. Our family came and went as they could to visit with her during her last weeks. She had lung cancer. I am a nurse, but am so grateful for Home Health and finally, Hospice care. It would have been so much more difficult without their help. I also have a wonderful husband that helped so very much. My sister was actually in the room at 3am when mom took her last breath. I had fallen asleep on the couch. Mom was allowed to die a peaceful, dignified and caring death. And thanks to Hospice, pain free.

      • Nancy says:

        Thank for mentioning Hospice and the wonderful service they provide to both the patient and their families. End of life is inevitable but given the choice I would rather be at home surrounded by loved ones with the assistance of a caring Hospice team.

    • I am affronted by your description of care at home being ” left at home lying in a soiled bed occassionally touched on the had and tortured by the offering of soup that would chhoke them if they tried to swallow it.” Many many people homecare including myself, and our loved ones NEVER lie in a soiled bed.. they are cared for to a standard unachievable in a hospital or care facility, as the care , and love is given to one, and not stretched over several patients… how dare you!

    • Michele says:

      I agree 100%, I’ve been there and tried taking care of my mom for 7 years to the point my back and neck and other health issues have deemed me permanently disabled. I couldnt get hydrologic lift machines to constantley change her and to pick her up 12 times a day and giving a 140 lb person a shower every other day and the constant changing of pull ups and cleaning everywhere was so bad. As my body gave out I finally found a very decent place to put her. I know when the time comes if they can’t resuscitate her I would hope they would give her enough pain medication to pass peacefully.

    • Kathy says:

      I have stood by my mother, father, 4 grand parents and countless aunts and uncles as they pass and I can assure you I have see what is described in the above article. My grandparents passed at home, with the hospital bed set up in the living room, by the window, so they could look out at the world around. My father died in a nursing home. They had tubes stuck in his stomach, and arms, a barge of crap meant to keep him alive but just drawing out the inevitable. I have been beside a dying person, passing naturally. And I have been beside a person passing with all the artificial tubes and monitors. I still heard the rattling in their lungs also. So it is utter hogwash to insinuate that extending someones life for your own greed is somehow better than letting someone pass naturally. I do not see this as a “gung ho” approach – but do see your comments as distorted. I also see your vision of America has been ever so polluted by whatever your choice of media outlets may be. I am so sorry you feel that a family is not equipt to take care of a dying person. I sat at my grandparents house for weeks with my grandfather. Along with many others, keeping him comfortable, giving him broth – that – by the way – he did not choke on. The realization should be that our current society has strayed so far from the family unit, and things that should be important to us – into a self centered realm of fast paced life – but are people really living? I read and re-read the article and saw no accusations of today’s care-givers being barbaric to the dying.

    • Doreene says:

      I have had this shoe on the “other foot.” What you fail to see (I have 41 years experience in ICU and ER)is the fact that simply because the technology is there does not mean that it is appropriate to use. The picture painted herein is simply one of a gentler time when technology was not what it is today. This article simply addresses our changing time. I would like to address the fact that the “conversation that no one wants to have” is a VERY VERY important conversation TO have. There is a big difference between aggressive critical care and palliative care. What it does take is a caring family and loved ones who will share the burden of that care giving. Not everyone has that, which is why it is so important to make your wishes known and to have someone and an alternate decision maker provided as a power of attorney for health care. That in and of itself is NOT an easy job, but IS a very important one.

    • Deborah Klingaman says:

      I absolutely agree with you! MY Mother chose to stay home and died one morning from a massive heart attack. She was actually ” Dying slowly for three month, had stopped all her medication and sat peaceful without complaint as her body demised.She had no desire to continue living at 80. Heart disease, diabetes, arithritis, had wreaked havoc with her body. SHE EXPIRED IMMEDIATELY WHEN SHE AROSE FROM HER CHAIR TO GO TO THE BATHROOM. AT THE SAME TIME MY MOTHER WAS DYING, my Dad was in much worse condition dying in the hospital from heart disease and fighting every minute to live to go home and take of Mother, the love of his life. THE DAY MY DAD WAS TO BE DISCHARGED, HE WAS ON THE PHONE WITH MY MOTHER.She ask him to call back because she had to go to the bathroom. They hung up.Mother stood up and had a massive heart attack. It was over….Dad died three weeks latet, peacefully, peacefully surrounded by his children , knowing Mom was laid to rest and would not suffer….. his heart failed and his eternal life began. The good thing was they bother chose their final exit, supported by their children. We all were at peace. Let the dying person decide, and respect their wishes.

  381. Mary Ellen says:

    I really don’t know if other nursing homes are still using restraints and side rails but the only side rails we have are little quarter rails at the top of the bed for certain people that use them for positioning. We have absolutely no restraints, but throw plenty away when they arrive with new patients from the hospital. Yes, we have staffing issues and we certainly are not perfect, but we are not the nursing homes of the 70’s and 80’s. And finally we can tell you more about a lot of our residents than their families can, cause THEY RARELY VISIT!

  382. Debbie says:

    Part of the problem is that doctors time is viewed in billable hours. Sometimes family members who are not medically inclined hear the possibility of a treatment as a solution when the reality of such aftermath is likely to prolong agonizing death, not enhance quality of life. Shame on the docs for not presenting a realistic portrait of what could happen with the feeding tubes and other interventions. Shame on us for not acknowledging the dignity of ones cumulative experiences.

  383. Deborah says:

    I worked in a nursing home for 6 yrs and vowed that no member of my family would ever go there. I would see patients curled up in their wheelchairs lined up in the halls and just begging God to take them. How many patients did I see come in alert and somewhat with it, to being frail and weak with no ability to walk, talk or eat. Yes, some of the families didn’t care, but then there are the families that do. I am currently taking care of my mom who is 89 with end stage CHF and dementia that is getting worse. She walks, but just barely with her walker and can still manage to get to the bathroom …sometimes. There are days that I think this isn’t so bad and I can handle it and then there are days that I just sit on the floor and cry (especially if I had to scrub the carpet because of an accident). The endless repetitive questions and the fact that I can’t leave her alone in a room ( for me to go to the bathroom is a challenge, because God only knows what she will get into in that 2 minutes) is really getting to be a problem. This is no life for me or her. She is on hospice, so no surgeries or heroic measures to save her life. My health isn’t the greatest and I just don’t know how much longer I can do this. Like everyone, I pray that she dies peacefully in her sleep, before she is bedridden, because if it gets to that point I know I will not be able to care for her. And if that day comes, she will have to go to a nursing home. I think we all want that peaceful death with family around and in our own bed with no tubes, but sometimes it is out of our hands and in God’s.

    • w says:

      Deborah….big, long, warm hug. 11 months ago I said goodbye to my mom of 84 years. She was a very vibrant woman up until her last year, and she never became bedridden thank goodness. Last January she went into the hospital for shortness of breath issues she’d been having; turns out was cancer and it had spread to other organs. She was surprisingly not in any pain from this. All us siblings knew for the last 20 years that mom’s wishes were DNR. I was able to give mom the choice of dying in the hospital or at home, she chose home and so home she came. I was able to give her the medicines that kept her very comfortable as she daily lost the ability to maintain her oxygen levels. She was very much at peace about her situation so letting go for her wasn’t difficult. I can understand that not everyone can have the luxury of passing at home but the one thing that family can do for their loved ones is to NOT ask for extreme life saving measures on the elderly. We all love our parents, extending a life that has come to its end is not showing your love, it’s cruel.
      But the best thing is to start talking to your aging parents BEFORE they become incapacitated, or early dementia sets in. Have a game plan in place so that when the time comes it will be easier. I will always treasure that I was able to be with my mom during her last moments. It was amazingly peaceful and easy, she certainly deserved no less. Deborah, you need to have some help however, I couldn’t have done it alone. You mentioned she’s on hospice but obviously not full care. Perhaps get someone from hospice to do a 24 stay on the weekends? You have to give yourself breaks or you will crash and burn. My sister would come and stay with mom on the weekends and I would sleep almost the entire time. By the time she would leave I was completely regenerated. I recommend using adult diapers on your mom to alleviate those accidents, much easier to change one than to have to clean floors. I wish I could help you, I would in a heartbeat. Talk to hospice, tell them your exhausted. See what they can offer, medicare does cover a lot of things like this. Above all, stay strong. While it’s sad and bittersweet to let a parent go, especially a mother, you will in time treasure even this time with her. God Bless you and God speed to your mom.

      • Amanda Perez says:

        You guys are truly blessed to know watch your mothers turn old and gray. My mom took her life at the ripe young age of 43, with only a beautiful silver hair here and there. I would give anything, even caring for her so beautifully as you mention, so I could enjoy a few more precious years with her.

    • B says:

      Beautifully said, Deborah. My heart goes out to you and your mother. I had a small window being caregiver to a family member and it was extremely taxing. I now look at full-time caregivers in a new light–you are all angels. Find a way to make time for yourself because you deserve it and a healthy you means a better caregiver for your mom.

  384. bs says:

    Dear Dr’s, just because you can dosen’t mean you should.

    • w says:

      It’s rarely the Dr’s decision, it’s almost always the family demanding it. Every doctor I have met knows when it’s time to let an elderly person go….unless they’re of poor moral character and are just wanting to pad a bill.

  385. Suzanne says:

    Everyone has their own life experiences relating to death. I am both a registered nurse case manager in a large academic hospital system and a daughter who helped, along with four siblings, care for her mother at home with Hospice until she died…peacefully at home. There are a lot of families that can’t let go. It’s not about the doctors keeping patients alive for the billable hours…unless of course the family insists and then what recourse do the doctors have? Damned if they do and damned if they don’t. Death in the days of yore did mimic the doctors picture to some degree…although I agree that in the last hours people do struggle with air hunger and it’s not fun to watch. People did their best at home because that was the only recourse. Today we have medication and the help of professionals that deal with death on a daily basis and are able to guide the family and patients to the end more comfortably. On a personal level, the letter above is poignant and beautiful. So happy we were able to have my mom at home for 3 months caring for her as this doctor described…offering her favorite foods and drink, looking at pictures from her life, remembering and sharing! If only people took that time to sit and listen.

  386. Lisa says:

    So, so true, sad, hurtful, painful, lonely, scary, costly & unnecessary! What next? My own mother tells me ” you know what to do, your a nurse.” I would never do that but truly wish nature can take its course with family at your side & nothing artificial. My mother, age 83 now lives with us. Peace be with all.

  387. Kathy Barnes says:

    This is beautiful! Both of my parents died at home with loving family all around them. We played music for my mom that she enjoyed. When it was my dad’s time to die we stood around his bed and sang him into heaven.

  388. Kerry says:

    I feel for you Deborah, and all of you out there who are caring for your elderly parents. It is a challenge for sure, but also such an honor & privilege to be care for our parents. I remember the days when I too would sit in my car crying because I didn’t think that I had anything left to give. The exhaustion of raising two young kids while caring for my elderly, confused mother was sometimes more than I could bear. Sadly, at 89 my mother passed away silently in her sleep one night last year. Now, of course, I would give anything for one more conversation (even if it is the same conversation every minute…just repeated over and over), one more opportunity to tickle her back and just one more game of cribbage. I miss my sweet mama.

  389. Susan says:

    This is so true. Sometimes the patients or family’s try to tell us enough is enough ,but not everyone is listening. Everyone is so rushed and so focused on the “care” of the patient that no one is CARING. Sit down and listen for a few minutes and let them know you care. What you hear may uprise you

  390. Lyndsey says:

    I totally agree with the article and it would be lovely to die in peace like that at home. Unfortunately my nanna is currently dying from pneumonia in hospital and she is very distressed. At home with no medical intervention this would have been an absolute nightmare for the family. In hospital the hyoscine, the morphine and the diazepam let her drift comfortably, but seem to be prolonging her agony. We were told going home wasn’t an option as there wouldn’t be enough time…. Its been 3 days. So my nanna does not get to die at home as she wanted. But had she been allowed home i’m sure there would have been periods of pain and agitation whilst waiting for a nurse to visit and administer the next dose.

    I wouldn’t let an animal suffer like this. I think its disgusting.

    • Michele says:

      I totally agree, death is the worst physical pain for the person passing. I just think different states don’t administer pain meds as needed. That’s the part that freaks me out when I was caring for my mom at home she was in pain and all the doctor would give her is a 500mg of Norco. Omg now she’s in a nice facility thats loving and clean but all they give her is aspirin! The state of CA is so ridiculous on not giving pain relief meds even to proven MRI suffering evidence. That’s what scares me the most is if I ask to be given meds so I can peacefully pass especially at home that they won’t hesitate to so so. Everyone should have the right to end there lifes if the pain becomes unbearable.

      • For the last few days of his life my Husband was on Hospice care in a Nursing home (the VA put him there and paid for all) he was given plenty of pain meds just like at home. I’d be in the House Doctor’s face if a loved one was denied sufficient pain medication when they were terminal.

    • Rita says:

      Sorry about your sick nanna but there is no reason you cannot take her home with hospice. You would have to be willing to give her the medicine yourself. The medicine can be administered in ways that are simple, under the tongue, in pudding, and even rectally. The hospice provides support to you and teaches you but do not provide 24 hour care.. i have seen the most beautiful acts of love by family and friends doing the care,but it takes strength,courage and alot of work. Sadly, there are many people, not saying you, that are unable to do these things. I was a hospice RN ( now retired) for ten years and never had a family sorry having their love one die at home, and mostly, they were proud of themselves that they were able to keep them at home.

    • You can ask for Morphine and diazepam etc to take home. My husband died at home, holding my hand, at 87 and taking both of those meds and family and hospice had been in and out at will. Very nice way to die. Judy MD

  391. Carolyn norris says:

    As a retired hospice nurse, I know that in many instances your description of death is wonderful and achievable especially with support from the medical community. I have seen death in so many ways. I hope for the people I love that they can experience the peace of being released from a sick body to whatever they envision the afterlife to be. I hope the same for me.

  392. Nan Vroman says:

    What a beautifully written article. I remember when I was 4 and my Grampa was dying of cancer. It was 1960. He was in his home, on a daybed next to a window that was exposed to the sun. I have vague memories of family members coming and going and being gently admonished to be on my best behavior because “Grampa was very sick.” He passed surrounded by those he loved in a place that was familiar and comfortable….Your compassion for the elderly and the dying is so touching. Thank you for your words of kindness and wisdom.

  393. phil kyson says:

    When you consider 70% of our healthcare costs are spent on those over 70 it does make you wonder?
    My father died in his own bed at home in agony at 45, his choice. My Mother 90, passed peacefully in a nursing home bed pain free.
    If I get to chose I know which way I want to go. It’s all about choice and what those choices are, if you have any that is?

  394. Norma says:

    Suzanne, I agree with you! I’ve been a geriatric nurse for 30yrs and our society has gotten to the point because of modern medicine many families believe that we need to do everything possible to keep their loved one alive at almost any cost, regardless of the pain and often torture that we put some elderly through.I understand that initial thought is we don’t want them to leave us! We watched my 52 yo father suffer in excruciating pain for a month in intensive care, until we realized, we were hanging on for us. Not only was I a nurse, so was my mother and my 2 sisters. We realized he would never breathe on his own and he couldn’t handle the pain any longer. We turned off all the machines and gave him morphine to let him go as peaceful as possible, he died within 12hrs.I cringe every time I admit a patient with a terminal illness, or in their 80’s-90’s and they are a full code! The family doesn’t realize how horrible doing CPR, often breaking ribs and torchering these people till the end! What a difference when they are naturally and peacefully put on hospice and do comfort measures only, play soft music in a quiet room. It’s amazing the difference! If the family can’t keep their loved one home at the end, then they need to request this treatment in a care center or in a hospice facility. Well never go back to the old days since most family members work now, but they deserve comfort and dignity until the end.

  395. Kelly Gaston says:

    I can see the point of the Dr and the opinions of the replies. Yes, we tend to keep our elderly alive long after nature would have taken them. Yes, sometimes it’s billable hours and sometimes it’s family not able to let go. Yes, many Nursing Homes are horrible places and, I admit, I do not want to find myself there. You see, I have both my in-laws, who I love like my own, suffering from Alzheimer’s.

    Mom first…we lost her about 6yrs ago. We lost her body a year ago last December. Yes, we kept her healthy. We fed her, bathed her and loved her. When her body started to fail and it became obvious that this must end after six days in the hospital to quell an infection, we made her comfortable, in her bed, in her room, at her Adult Care Home…not a Nursing Home but, a home with a family, four other elderly patients including her husband, and all the love and care that we couldn’t give her…under her window, with soup on the stove.

    Dad was Mom’s caregiver for 4yrs before he too, developed a type of Alzheimer’s. His is different…there is no slow decent into oblivion and quiet. He is going kicking and screaming, only controlled by medication. He is happy, he believes he is living in the 70’s, when he was happiest. He thinks I’m his “Lulubell” and his son, my husband, is his brother who is long passed. He thinks he is having a “flirtation” with the nice, Romanian lady who keeps the house. Of course, that would be Claudia, his wonderful caretaker, who with her family, Aunts and siblings, cares for the people in their home. He is happy. He is reliving those days long gone by and that’s okay. That’s just as we would wish. He has had UTI’s and we watch it closely. This trip to the ER for testing and labs also found that he now has Congestive Heart Failure. When they released him, they wanted to send him to a Skilled Nursing Facility for OT, PT and ST (speech therapy). What? He has Frontal Lobe Dementia. He’s having small strokes, destroying his brain, stroke by stroke. Why take him where he is disoriented and frightened to teach him something that he will probably lose next month due to another small stroke…or a the “big” on that will most likely end his journey? So, we said “No, he goes home where he can pinch his Romanian sweetheart, smell the soup on the stove and wonder when his “Lulubell” is going to get out of the shower…you see, he doesn’t know that she is gone. To tell him, would only hurt him. Then he would forget and remember again. He would pull the scab off the fresh wound constantly. So, she’s in the shower or out with the girls. He forgets and when he asks again… So, now they want to send out PT, OT and ST. Why? He doesn’t want to have his limbs moved, his day bothered, to be told he “must” do something he doesn’t with to do. So we said…”NO!”

    We couldn’t give him that care in our home. I looked long and hard to make sure I found a wonderful place for them both. But, it took two horrible years of showing up at odd times to make sure they were cared for. The staff at the two separate Nursing Homes learned fast that they NEVER knew when we would “pop” in. Kept them on their toes…kept our loved ones safe. You see, it’s up to us to walk that fine line between too much and not enough.

    It’s our job to give our dying loved ones dignity and love. It’s our job to know when enough is enough…and I promise you, that is a hard decision and not one to be taken lightly. Mom survived 6 days in the hospital with nothing but pain meds and sedation. No food, no water, no monitors, no one to bother her. We were told that the infection in her lungs would take her in two. After 6 days, they said they made a mistake…she wasn’t going to die and was to “well” to be in the hospital. So, we took her home. Hospice said she could live for months with no food or water…in a sort of suspended animation. I told them “No, she will leave before the end of the week” That was Monday. She left at 4:10pm, on Wednesday afternoon, with me holding her hand and her son, holding the other. She left us without a sound…in out, in out…nothing. When I went to tell Claudia…there was soup on the stove, laughter in the kitchen and my then 6yr old grandson said he saw angels playing in the backyard under her window.

    Find the fine line between one and the other…

  396. Scott Fitzmaurice says:

    It is about Being Relevant.

  397. Merrill Saleen says:

    I was brought back from near death suffering from heart disease 10 years ago. I can honestly say I have had the pleasure of living a high quality of life since. I have also seen my mothers quality life extended for 15 years following a near death illness. The question raised by this article is who has the right to determine if a quality of life is possible? If it were left up to the Hospital and some doctors as well as the approval of the insurance companies our lives would be much shorter and of less quality. The attitude displayed by the article scares me and makes me wonder if the “Death Squad” mentality is being overemphasized in our culture.

    • schwartzwq says:

      This is an important aspect to keep in mind. Despite all the above complaints about doctors insisting on “heroic” treatment, that wasn’t my experience at all with my parents–in both cases the hospital doctors were jumping up and down with impatience to pull the plug. I think the culture of medicine has swung sharply the other way, while the excesses of the previous culture continue to be lamented.

  398. Barry Minster says:

    Each death in unique. I think that the point is that we prolong life because we can – not because that is what should be done. I think that each person should give a medical directive as to what they wish to be done for them when they are terminal. Heroic efforts or make comfortable. God bless the care givers. Theirs is a tough job with lots of second guessing.

  399. Jennifer H says:

    People go to nursing homes because they’re unsafe at home alone and families can’t provide the care they need. Most are not at death’s door being fed Ensure through a tube as the article states. Most still enjoy life – family, friendships, food, activities. They smile, laugh, reminisce, have meaningful things to say, joyful things to experience, new friendships to make. Who is an ER doc to pass judgement on these people and their families? Yes, some people become as frail as he describes. Most do not. Most have a quality of life they and their families find value in but can’t support in their own homes. When they pass they are not full of wounds and tubes. They lived. Assisted, but with quality. Life has value not to be extinguished when you become inconvenient to society. If you don’t want interventions to live, get your affairs in order with a POLST or advance directive. Don’t let some ER doc decide you no longer should live.

  400. Sheila Adams says:

    This has been my outcry always I spent my life working as a nurse saw alot of death and it continues to astound me that while we proclaim the right for our beloved pets to die with dignity we don’t afford the same to our elderly It’s time we came to an openness and acceptance of death

    • David Wilson says:

      Thank you. Exactly. I’d much rather be put to sleep like my cat rather than die in agony and indignity, and at great expense.

      • Michele says:

        I totally agree!

      • Katie Lee says:

        I completely feel the same way. My dear mother is dying of old age. No heroics, but after 94+ years numerous little strokes have taken Mom, not her life but the sweet, happy, giving person. In place is a shell of a person who can’t walk, hold a newspaper or book, or understand why the doctors can’t make her well. Her existence is on of physical and mental misery despite daily visits from family and friends. Genetics play a role. Mom watched her brothers and sisters die slowly and painfully of age, muscles and mind shutting down while the body continued to live. She knows what’s in store for her; a timeframe none but God can control.
        As painful as it is to lose your parent to death, I believe it’s worse to lose them to near death to which nothing can legally or lovingly be done. Too well for to die, too ill to live, unable to perform the smallest task for oneself. A dear pet would be lovingly given peace, the law prevents us from caring for our loved ones in the same manner.

  401. Barbaranne Unrau says:

    Your story was well written and interesting to read. I am a 37 years of nursing with mostly elderly who I too wonder “Why we do what we do some days .” The thought that I had when I was reading about the surrounding atmosphere in the years gone by was now if there is family around they are on their cell phones. Everyone says they are busy. No time to visit or call or bring a meal just too busy .If they would put the damm cell phone away that they just used for the last hour they could have done one of those things I mentioned . No one takes the time to ask their loved one what they want and if they do they aren’t around to tell you cause they are ” so busy “. Some days I’m embarrassed to live in a world where people have no respect for our elderly who once took care of us and loved us .

  402. It has changed, as I, the way I see! - Rand Grubbs says:

    I found your article to be spot on in regards to the possible scenero’s at the end of ones life. As well as the dignity that may not be present in some passings. This past August 29th marked the Sixth Year Anniversary of my partners Transition. With his medical situation we were in a hospital basically for two months. He and I talked things through and his wishes stated and I was the guardian of those wishes when times appeared that he needed that of me. I think that so many times people don’t discuss things and live their whole lives with “the elephant” in the room but continue to ignore things thinking it will go away. I know that a diagnosis of Alzheimer’s of a loved one sends the majority of families into the ostrich mode, head in the sand and their a** in the air. We as a society have put doctors on a pedestal and so many just want to let the doctor make the decisions because then they don’t have to read, think about or look at the situation themselves. So is it fair to then blame the doctor because of ones own lack of inquisitiveness, questioning, clarification etc. I guess it is a by product of also the rise of reality TV. People can wrap themselves up in all that drama and going on in other’s lives and not think of their own. I know Hospice is a truly beautiful branch of medical choices at our disposal if we should so choose. But it was not that long ago that it frightened people in this country. You are helping a soul that is on its own journey. Yes, love and support of family and friends at the end is just as beautiful as the day we were welcomed. But the quote “good death” may not be the way things happen for all. We all did not win the powerball drawing, get blonde hair, stand six foot four, etc, etc. Whatever the “Good” should be. We all got life and with life comes death. So instead of knocking the doctor off the pedestal because he did not have time to tell one every possible senerio let’s seek knowledge ourselves and that way it will remove a lot of “Fear”. My partner had chose that he only wanted seven days of life support and by me holding his medical power of attorney as he desired then it rest upon my shoulders to meet with his medical team at least once every day to get updated on whatever had changed. Meaning, I knew if a new med had been added or subtracted and the reasoning behind that change. But before that update was given or I even ask for it, I stated to the medical team “don’t bring him back to just make him suffer.” I had to love him more than my own “ego” desires of holding on to him. On the seventh day the medical team ask for one more day. He was taken off life support the next morning and would live and experience one of the most incredible week and a half’s of his entire life. But at that times arrival it was to be to “Let Go & Let God” take care of his Soul as well as God taking care of my grief filled Soul. We only had eight and a half years together. If I were to be presented with the same journey knowing the outcome, I would be right there, without a doubt. Life is a journey and for the eight and a half years I am eternally grateful because it could have been none. Yes, death is hard but it also has a lot to give as well. Life never said it is fair. It is Life! And if you one did not have the capacity to love then one would not grieve either. Loss is the price we pay for the ability to feel love. Let’s see that we as a society start talking about the journey we are all on, and death is a equal partner in the journey as is birth. To all that have had loss and have grief and a heart that may be heavy and the darkness may be all around you. I wish you Love and Light and may your loved one have eternal rest and take your hand as you step through the door of your own transition.
    It has changed, as I, the way I see!

    • Nicky Kaufmann says:

      I have not read many of the replies but I did read yours. I lost my husband 5 months ago (I wrote this morning) to ALS and because he had always told me No heroics – ever I knew what to do plus we had all the paperwork to back it up. I pat is side of the bed every morning knowing his last breath was there, with me by his side. We were lucky – and prepared. God bless you.

  403. anna says:

    This article hit my heart. My mother died in a hospital from sepsis. Everything spiraled out of control and it came to a point where the doctors attitudes changed from healing, prolonging to using her dying as a teaching moment. The end of her life was very much like the article states and it was horrible. Although the doctors tried to save her, it was and endless parade of tubes and needles, monitors,machines,nurses, med students bruises and pain. She was in total confusion and stress. If they had let us take her home perhaps her physical ailments would have remained but mentality she would have passed in peace. That’s what hurts the most, as the article portrays…here is this beautiful life that fades away in chaos.

  404. Ned Sparks says:

    Outstanding! I appreciate this physician sharing the thoughts that I have had for many years. I have been a firefighter for 32 years and began believing the system was broken in the 90’s when we would “save” someone only to hear they died a short time later and leaving the family in debt to pay “the bill”. The system is geared toward money; insurance, hospitals, health care workers, attorneys (obtaining the elderly property to pay the costs and of course frivolous lawsuits for malpractice) – it is America – and the medical industry does not care about the patient or their family. Let people have dignity and accept the truth about the mortality rate – it is 100%. Give the elderly the right to live and die with compassion and honor. We will all be there someday…how do you want to transition into death, living a fulfilled life, or slow suffering for both patient and family? Let them (us) go in peace…

  405. Doc says:

    But we did try years ago. We didn’t try as hard, per se, because we didn’t have the equipment, drugs or information. It cannot be denied, that effort was given, as you carry 150lb oxygen tanks and 80lb resuscitators into homes, trying until they are nearly stiff. That was all we could do. It rarely worked.

  406. Garry Scadding says:

    A well articulated description of values lost and misplaced contemporary truths. I wonder if it were not for medical insurance paying for the discovery of medical innovations whether we would have the practice of keeping the elderly alive well past their more natural term of life. Is their not a better way to fund the obtaining of innovative medical discoveries to advance the quality of human life?

  407. symorris says:

    Whew…such a difficult topic. We are much better about controlling pain now. I’m skeptical about the idealized notion of dying at home nearly 100 years ago. But it’s a much more viable scenario today with the wonderful hospice care available today.

    My father died in a hospital following a fall and massive cerebral hemorrhage. He lingered for several days. An extremely compassionate neurosurgeon helped me wade through the treatment options–even calling me on a rare escape to dinner because he was torn about the decisions we were attempting to make.

    Ultimately, I asked what the very best scenario was for my father’s future. his response was grim. And he told me it was likely my father would soon die from pneumonia–with or without surgery. I asked for palliative care and let dad go.

    My husband and I were alone with dad in his hospital room when he died. Unfortunately, I was familiar with the process and recognized that he was slipping away. We held his hand and sang to him. (Poor dad, he was High Episcopalian and all I could think to sing was “Amazing Grace.” And the thought of dying hearing my singing voice-he surely must have thought he was heading to hell.)

    But when I went to the nurses station to tell them dad died, a nurse snapped at me. I was shattered. Dad had just died. My sister had committed suicide five weeks earlier. It was such an unnecessary response.

    I’m afraid I’m venting. Making a decision about my father’s care was excruciating.

  408. Nicky Kaufmann says:

    I have just spent the last six months considering my husband’s last 12 months on this earth. He was diagnosed with ALS just five months before his death although looking back he had had this devastating disease but it was undiagnosed. As soon as he understood his diagnosis and read about this terrible disease, he signed a Do Not Resusitate and carried it everywhere with him plus it was on the fridge. In Florida, it must be on yellow paper so as not to be missed. He was a veteran and was looked after by the amazing staff at our local VA. They tried hard to EASE his suffering with breathing machines (his lungs and throat were the primary organs affected) but at no time did they pressure him to do things he didn’t want to do to prolong his life/suffering. I called in hospice when it was obvious that he could not longer take sufficient food/water to sustain his life. He died within a few days in his own bed, in his own home, surrounded by those who loved him. I held his hard as he took his last breath. His last gift to me after a 42 year marriage was his wishes made clear while he still could. My message is – make your wishes known to your family while you still can. Fortunately or unfortunately, I have not yet made up my mind – the industry is changing. As I understand it Hospice is now offered not only by non-profit organizations but for profit organizations that will be paid by medicare and insurance. This EXTRAORDINARY group of women and men, health professionals, chaplains and hand holders will forever have my thanks and admiration.

    • I too have had to watch two loved one’s go through their passage to eternity. My father at the age of 82 passed in 1999, he had dementia and I had to put him in a Nursing home. This is never an easy decision, but sometimes situations do not permit the loved one to remain at home. My Dad could not live with me, I worked full time, I had stairs which he could not do. I visited him almost every day up until his last days, his second home was much better than the first, but I was there to be sure his care was up to my standard. He passed with me at his side and a caring nurse helping me to understand what was happening. I told him it was OK for him to go to mom and as a tear rolled down his cheek, I believe he heard me and passed peacefully as I held his head and brushed his white hair with my hand.

      My only brother just passed in November and along with his wife and family we spent the last hours of his life in a lovely Hospice room. His journey was not long, but it was hard for his family, because of my faith I was more at peace for my brothers passing, my only concern was for my brother not to suffer. He was in a coma state with no coherent conversation for about a week before he passed. With his wife of 47 years tucked in next to him, me and his oldest daughter at his side we comforted him and talked to him. This seemed to be as peaceful as passing can be, so I do believe passing at home might be fine for some, while others might find that a caring location of your choice does work too.

      The loss of a loved one is never easy, but in a loving, caring place, wherever it might be, we can “love them to death” so they never feel alone!

  409. James keating says:

    It is about time we irish try to remember facts, only for our poor mother who gave birth to us just like all other mothers, who with so little for themselves have given so much and so much more?, that we never heard about.
    Is it not about time we put aside facebook twitter and all these so time consuming gadgets.
    Our Mothers going forward in their life, with open arms and most important Open Hearts, to help on each and every call for help for you, and I, BUT,now also for our children, their Grand Children, and we being us, in our selfish way step aside as we are,always happy to do.
    NOW has to be the right time for us all to seriously reflect in how we were spoiled rotten, Make the move, get up off our, getting bigger back sides. AND GO AND GIVE THESE PARENTS A, visit. big hug & just say i love you folks.
    But most important make this a very nice habit at Least once a week, Every week

  410. P.Stahl says:

    If you want to have control of your death (or a loved one’s) you cannot be involved with any institution–hospital, ambulance, nursing home, etc. Even hospices may not cooperate. My mother refused all medical care as she was dying, and we had to beg hospice to give her pain meds. Her pain was never under control, and her dying was agony. Human beings staff these institutions and each human has a point of view–even if it doesn’t match the stated “mission ” of the facility. My father’s death was after 5 years of 24-hour care. Although I knew he didn’t want to go to the hospital, I was unable to watch him suffer and sent him there (where nothing was done, in actuality). After caring for him at home for 2 years, we had to put him in a nursing home where I visited daily and oversaw care as best I could. Even in dementia state, he knew at times what was happening and said, “They don’t treat me the same when you are gone as when you are here.” The nursing home sent him to the hospital again at the end of his life–despite my instructions not to do so. Then I had to fight the nursing home to allow hospice to attend him once he returned from the hospital. Yes, we had all the legal papers in place with every facility he entered, but that did not matter. I finally threatened the nursing home administrator that if they did not allow me to have hospice come in (and find a quiet room for him to die in) I would put him in his wheelchair and roll him over the streets to my house to die. When he finally got to the quiet room (very difficult to find in a nursing home) he calmed down and died rather quickly–me at his side. I don’t understand why we can’t have the benefits of meds and support as well as the opportunity to die in a reasonable way. I wasn’t able to have both for either parent. We actually had to “stand guard” with each parent. I know people who are afraid to follow through with loved ones’ wishes because even with legal paperwork on hand, they may be accused of abuse or neglect.

  411. Rich Kontny says:

    So much medicine today is contrary to our Christian beliefs and expectations. Fact passing is part of moving into our spiritual realm and we must understand that our physical lives are finite. The key to eternal life is not artificial methods to extend the agonizing part of our lives biut to properly prepare for our spiritual lives like so many others have done. There is no mystery here only denial of the inevitable! God Bless!

  412. Leann says:

    Amazing commentary. I wish all families who are tending to ailing and dying loved ones could read this. I worked as a respiratory therapist for over 30 years. Most of my time was spent in ICU, CCU or MICU. So I was exposed to end of life decisions almost daily. As much as I love my family, knowing the consequences of these life sustaining procedures, I will be my families loudest voice when these decisions need to be made. I will fight with everything I have to ensure my loved ones leave this world in peace and with grace and dignity.
    There is nothing as heart-wrenching as looking into the beautiful, tear filled eyes of a wonderful person and seeing such pain and fear in their last days. Those eyes that begged me to turn off the machine that keeps them bound, painfully, to this world used to haunt me in my dreams. Some still do. They suffer at the hands of ‘loved ones’ who can’t let go. What most do not know is that their inability to let go consigns their beloved parent, sibling, child to endless torture in their last days.
    I left the mefical field when, as I was consoling the family of a 32 year old woman who was dying of lupus, I was called to resuscitate, intubate and place on a ventilator a gentleman 95 years old. There was a DNR on this man, (his wishes) but because a family member could not let go, CPR was initiated and this kindly man spent his last days hooked up to machines. Every time I went into his room his blue eyes begged me to let him go. He would hold my hand and squeeze so hard it made his thin arm tremble. Those blue eyes cried out for release but all I could do was wipe away his tears and tell him how sorry I was.
    Make your end of life wishes known before you are too ill to make your wishes kniwn. And PLEASE! let your loved ones go gently when their time comes.

  413. Charlotte says:

    Very good article. Hits home with my Mother. I hope and pray when it’s time she will be at home. In fact I will do everything in my power for her to never leave this house.

  414. Rose says:

    This is so true.

  415. Bob says:

    * 8 years ago my wife Nedra died, at home, under hospice care. But I’d like to back up 3 months from that day. It was the third attempt at chemo. And the cycle went like this. Get chemo, sleep for two days, get progressively sicker, end up in hospital dehydrated etc, get propped up and start again, She was spending more than half of her time hospitalized and the tumors were still growing and spreading. On one of the trips to the emergency room one of the residents politely and quietly asked “Why are you doing this?” That led to my wife’s decision to go into hospice care. That was her last hospital stay. She was able to have some great visits with friends and family, hang out with her niece and while dying isn’t ever easy she had less pain and more dignity that she would have had.

    None of us wants to die and we have a system that can offer ‘solutions’ but no one talks about how likely those solutions are to be successful and at what cost to one’s quality of life they come.
    Being in a hospital or under care might have prolonged her life, by hours, maybe days, perhaps even weeks, but at what cost? She wouldn’t have gotten to take that last trip to Monterey to her favorite mission, She wouldn’t have gotten to see her niece whenever she wanted to, or get outside to feel the sun and watch sunsets, and she wouldn’t have been able to have her parrot around all the time, or have a chance to say private goodbyes to the people she loved.

    That emergency room doctor couldn’t offer a cure, but what she did made a huge difference to Nedra’s quality of life. She saw a person and not a bunch of tumors and dehydration and side effects to be addressed and I believe she provided the most appropriate care possible.

  416. patty bloom says:

    All very interesting and valid stories. It is different for each person and family. We all have to get more educated and then feel more comfortable,perhaps, making those tough decisions. I was a hospice volunteer R.N. several years back. Have seen them help so many folks and would advise anyone to: go hospice. They can be amazingly helpful to patient and family. Especially if done early enough. patty bloom,R.N.

  417. Angela M Holmes says:

    I have been on the same plane. I have worked with geriatrics and with ESRD. They both broke a part of my spirit. Then I was blessed to work on my own. A very personal and private duty. I called it BY HIS HANDS. The families quietly giving their parents into the hands of God, all pleased. The families still hold on to me. I pray someone will do the same for me. I loved the article and can’t wait to read the book. Thank you for sharing.

  418. Rhonda Wahls says:

    My dad has chosen to have a defibrillator put in & I am glad he’s made that choice. I don’t think he would have chosen this route if he was going to be resigned to a bed in a Nsg facility.

  419. Rhonda Corazalla says:

    This is the most amazing & truthful story I have every heard. I’m a RN & ask my self all the time “when did we all become God or the right to be God”? It is so sad what we put are so called loved ones through, is it for them or it it for us because we don’t want to let go & play God. Let’s all read & re-read this story until it sticks into our hearts minds bodies & souls & we stop playing God & let our family & friends die their own way & with dignity. God Bless & open all of our eyes!!!

  420. Carolyn Zollars says:

    Very powerful piece. I thank you for sharing your insights as an ER professional. Thank you for caring so much about the people we love. You all are angels for the difficult work you do ever day on behalf of patients and families. Thank you!

  421. Becky F. says:

    Amen. I am a healthy 58 year old but I am slipping in these conversations with my adult children so they know how I feel and what I believe. I hope that will help them respect and appreciate my death process.

  422. Terry Skovronek says:

    We are now asking our loved ones to live at death’s door for weeks and months, not days and hours.

  423. Megan says:

    We should have a law that everyone over 65 is a DNR!

    I am not saying we ship all the old people on an iceberg like the Inuits do!

    Knowledge is power… Saving adults at any age from cardiac arrest almost never works.

    Cardiac arrest strikes almost 600,000 people each year, killing the vast majority of those individuals, says a new report from the Institute of Medicine. Every year in the U.S., approximately 395,000 cases of cardiac arrest occur outside of a hospital setting, in which less than 6% survive.
    Approximately 200,000 cardiac arrests occur each year in hospitals, and 24% of those patients survive.
    People suffering cardiac arrest in an ICU have the disadvantage of being sick enough to be in an ICU already, the likelihood of surviving after cardiac arrest is 16%.

  424. I am so disappointed in this article. It paints healthcare as inhuman and inhumane. In all hospitals, you are required to show JCAHO that you are making every effort to address the social and spiritual needs of patients, and to keep the family involved with options for care.
    We tell patient and family that our goal is to get them HOME. We introduce them to hospice whenever it becomes apparent that this condition is terminal. We tell them about all the “machines”, then tell them to ask themself about what quality of life they want to give their loved one, and inform them of whatever pain a treatment will cause…including the pain of CPR.
    We discuss home care and volunteers available in the community. And we talk about what to expect. Pain control is paramount! We explore how much the family can do to care for the patient, and develop a plan that they and the patient can live with, to give them the best quality of life possible, and to support them and family at all times.
    If your facility didn’t do these things, then they failed!.

  425. Ruth A Redd says:

    I truly believe a death by dignity pill should be available for one to swallow when we can no longer function on our own. My mom has been in a nursing home for 16 months now, and the past 6 months I’ve watched her slowly dying. Her living will is in place, DNR, no feeding tubes, no antibiotics, nothing to prolong her life. I don’t know what keeps her going. She has no clue where she is, or why, and I don’t even think she recognizes me anymore. It’s the saddest, most pathetic life one can have. When she first entered the nursing home, and still had most of her faculties, she said please don’t let me be like that, when seeing other patients, sitting in their chairs, gazing into space, their drooling mouths hanging open. What is the purpose of continuing to pump medication into the elderly who are in nursing homes, on their death bed? Why prolong these lives with machines and meds? It’s not a quality life. These folks are going to die anyway, let them go peacefully. When someone told me that God keeps her going, it makes me wonder what the heck is God thinking? This is cruel. No kind loving “god” would do this to a person. I think it’s all about greed in the medical community. Nursing home costs are outrageous at $6000 plus per month, and that doesn’t include co-pays on meds. Mom always said she hopes she doesn’t outlive her money, but in 2 months I will be applying for Medicaid assistance. Mom would be appalled to know she is going to soon be on government assistance.

    • judy box says:

      Ruth – We have a county awash with enough drugs in most medicine cabinets to be able to help ourselves and our loved ones die on their own terms, but, it takes doing your homework well in advance. Then it is tricky to agree on what and when you will or won’t do and you need to be careful to not do anything you can’t live with for the rest of your life. We can’t speak honestly about this under the current laws but I suspect many families have figured this out. There are books by the Hemlock Society and others. Best wishes to you – I agree with you. JUDY

  426. Diana says:

    This is beautifully written; and so true. The picture has nothing to do with the article, at least to me. As a nurse, I have often thought about this. As a daughter, I have also thought about it. My 80-year old mother has told me many times what she wants and what her expectations are of me. She is aware that my siblings may not agree and I will follow her wishes to the letter. Perhaps because I’m a nurse, or perhaps I have experienced death in my patients. It’s part of life and it’s a bridge to the next place.

  427. Gill says:

    Thank you for your common sense. Dignity needs to be foremost otherwise we treat souls as meat attached to technology and outside ego. Not a fair go at all.

  428. Lam-ang Diwa says:

    I do appreciate the analysis present but wandered if there may have been something to consider about some economic factors behind the efforts of mankind prolonging life without regards to insuring quality of life in the first place. There ought to be more than just being emphatic about the subject.

  429. Nicholas says:

    This essay is far too romanticized.. You would do better to discuss things as they really are and offer actual solutions.

    We are not trapped by any means. Doctors simply have to get better at recognizing when it is appropriate to consult palliative care. They are almost always too late to place that order. They need to be braver, less lazy, and more proactive when it comes to having candid discussions with family members about things like DNR/DNI and other advance directives. They need to take the initiative to educate themselves on how to have that discussion properly and on how to overcome the common barriers (e.g. denial, financial worries, conflicting wishes among family members).

    Deans of medical schools and directors of training programs are recognizing that many doctors don’t understand how to go about end of life care. They are adding more palliative care and hospice lectures to their curricula. Culture change is slow, but it is happening.

    Another thing worth mentioning: You say that at the end of our lives, (when we are terminal is how I’m reading it), doctors should let us die rather than do what they can to save us. As I am sure that you know, doctors must code a patient that is full code. They simply must. There is no choice involved. Code blue on a full code patient = code the patient. As I said earlier, the problem is that many doctors simply do not have proper end of life care discussions with their patients early enough. Or the discussion is carried out in perfunctory manner. Or its worded in such a way as to coerce the patient to be full code. They almost always fail to mention that only about 15% of coded patients ever leave the hospital alive. The start of any solution to this problem is to have that discussion well beforehand and in a way that is meaningful and does not strip the patient of his/her autonomy. Educate your patient so they can make decisions about how they would like to die.

    If you want to help then go and get some CME credits in palliative care, end of life discussions, and hospice. Then go present on those topics to your colleagues in the ED. Be a part of the culture change in your own hospital. And never be too lazy, too burnt out, too shy, or too scared to have the conversation with your patients. And if you are, then get palliative on board to help you. Good luck.

  430. B.A. says:

    The at-home dying process isn’t always that peaceful, painless, and romantic, with flowers and broth and happy kids playing nearby. Some people linger for months and are in great pain during the crossing over process, even at home. The emotional toll taken on those watching the death of a loved one take place in their home can be profound.

    I spent months taking care of a dying family member 24/7 so he could die at home like he wanted, and it almost killed me before it killed him. Every two hours all night long for months, sometimes more often — like every hour, then nonstop special care during the daylight hours. I had to stop working during that time and it was really hard for me to financially recover.

    And the pain from the dying process needed hired professionals or sometimes ambulance rides to the hospital for more intense pain care (at his request). Hospice showed up once a week for 2 hours. Distant family members did what they could but it almost added to the stress with their own emotions being vented as it was happening.

    I agree the medical industry can be brutal — using up every last ounce of the dying person’s situation to practice experimental tricks and doing as much as possible to extract from their health care insurance. But avoiding their brutality isn’t even possible if those at home aren’t free to be ongoing day and night caretakers and aren’t wealthy enough to hire in-home professionals for pain and comfort care that’s beyond a layperson’s ability. If the dying person was going to die within 24 hours GUARANTEED — well, then, yes, more people could die at home. But dying doesn’t obey that way and can take a hellishly long time even without life support systems.

    But perhaps a new business, or volunteer service or expanded Hospice that can stay 24/7 in the home, taking shifts, could emerge to make it more possible for people to die in their home, even for those who don’t even have any family around them.

    • Jen says:

      Our brutality !? I hope you’re exaggerating? In most of your post you condemn us as if we are death himself and I find it very offensive. As a healthcare professional (ICU RN) I have NEVER ever participated in or witnessed acts of brutality against sick/dying patients or seen keeping them alive for insurance reasons!

    • Jen says:

      Are you serious lady!??! Brutality, experimental treatment, extending life to take pt’s insurance money?! …..are you living in a movie and do you even comprehend the kind of back breaking, selfless, compassionate work we do!?! We (most of us )love our patients. Remember I treat my patients and one day even maybe you as I’d treat my own family’ my mother. So please have a little faith and respect for us, we’re not all bad.

  431. Sharon Easterday says:

    I am a retired hospital nurse of 37 years. This article brings back so many memories that broke my heart. Another issue that needs to be addressed is quality of life no matter the age. Thank you so much for this article.

  432. Phyllis Maness says:

    Why can’t we support letting us die with dignity….no artificial heroics…no forced feelings,
    just let us be at peace with no pain to suffer in the end.

  433. Pat Richards says:

    In a long career as an LPN, and then RN, I have seen many people die. Anyone in the nursing profession knows that there are so many things worse than death.
    In time gone by, people who got really sick, expected to die. All in all that’s not the worst thing in the world. Certainly there are young people who will want treatment for severe illness. But so many times for the elderly, the cure is worse than the disease.
    I had an aunt over 80 who got ovarian cancer. She elected not to take any treatment as she knew the ravages of chemo, radiation, and surgery. Her words to me were “I am not afraid to go, it’s just the getting there.” Death should be pain free when possible. Hers was.

  434. This. You articulated something visceral.

  435. Glenda Saunders says:

    I have volunteered in Palliative. Being coordinator for many years. Many asked how can you do that! My response was that I always felt it a privilege to be a part of this very personal time in ones life. I would always try to get to knew each one. Asking for them to talk about themselves. Trying to see who they use to be, before they become this patient in this sterile environment that most think is the norm or right thing to do. Taking away all they have known. Sometimes they are angry, sad, confused. All so real emotions. But if you just take that moment to listen, really listen. Sometimes reading between lines to fill in what they can’t express. You understand why they feel the way they do. I have heard some amzing stories! I just hope that the day my time comes that I have someone with compassion talk to me , hold my hand. To tell me how I feel is ok. We really need to remember that dying is just another passage in our life. It needs to be accepted, taked about, not something to be afraid of. As so many it is not dying but the journey there that scares us.Many of us have never seen someone dying. But once you talk to them explain some of the things they are seeing with their loved ones. To help them except that they no longer need to eat or drink . How they can help a little. Small things like wiping their face with a cool wash cloths. Makes them feel just a little less helpless. We need more hospice and palliative care. To talk to our loved ones and ask what they want. How they want their care to be handled. Respect their wishes. Continue to talk to them. But more important listen. Be ready to let go. Put some of our old beliefs with our new. Educate more on palliative care. We all fear the unknown. Lets change that!

  436. Reta McCoy says:

    This is beautiful, but all so true. God I’d God, and we are not !!!!!

  437. Robert Baden says:

    “death-defying, death-dealing military industrial medicopharmaceuticalized culture” Seems like you are leaving out certain religious attitudes. Remember Terri Shiavo?

  438. Leisa Stapleton Kincaid says:

    Looking for it will repost

  439. slateone says:

    “You see, that’s how she used to die. We saw our elderly different then.”
    I don’t think that is true.

    People only have this view of how we die now because they demand choice.
    God has nothing to do with it. He is simply a construct like talking animals for children.
    Nursing homes like to keep people alive, it is cash flow for them.

    I agree there is a desire for a better way.
    Doctors in the UK think we need to rethink end of life care.

    ——

  440. I am completely overwhelmed by the pure empathy from this man that writes and allows me to completely take this small beautiful journey with a lovely God fearing woman in her Golden Years…..I felt every word that passed from his hand to our mind……this is the wonderful ending to a wonderful life. Then it changes fueled by a generation of exact.

  441. Edie Hill says:

    I was lucky enough to have both my Mom and Dad sleep at home. I want thst for myself also

  442. Rev. Stephen E. Bridwell says:

    Having worked in the healthcare field to fund my education toward becoming a member of the clergy I have experienced just about all of the physical and spiritual aspects of dying in modern America. Put my name in the list of those who questions the sanity of our culture and our willful self-deceptions about death. Countless times I have advised the dying and their loved ones to softly embrace the inevitable end of life and to make the most of the remaining time only to watch the “survivors” grasp at straws and agree to try everything possible to keep death at bay. Rarely do they feel good about taking the cowardly path and prolonging their loved one’s life. Regret is a hard emotion to carry into a funeral. It appears to me that regret only intensifies grief. I recently told my wife of 40 years that if a doctor should tell me that my days will be foreshortened by some disease unless extreme measures are taken to “save my life” that she should begin now to prepare for such a moment, for I have had a long and useful life and wouldn’t want to create a lousy end to an otherwise great story. I will shake my doctor’s hand and say goodbye with a “no thank you” and a reassuring bit of encouragement to do no harm to those who are afraid to die. Then we will go out to an expensive restaurant for a fine meal to celebrate what was and to plan for what time remains. Fortunately, she is a practical, life-loving woman, who agrees that knowing when to leave the party is the most gracious act one ever extends to one’s Host. Amen?

  443. Michelle Duarte-Anderson says:

    Beautifully written

  444. Arushi says:

    Such a well written article. 3 years ago, we rushed my grandmother to the hospital as she had a heart attack, and specifically mentioned that what she wanted and what we wanted was to let her go in peace. We specifically asked that she only be given anything that would keep her comfortable and alleviate pain. The hospital however, was most persistent that they could not do this, and had to actively fight to keep her alive. It took my grandfather, father, mother, Aunt, and 2 grandchildren to convince the hospital to just let her go in dignity. In India today, hospitals see these situations as opportunities to milk it for the most money, and it’s truly sad.

  445. Helen says:

    So many beautiful heart felt and soul touching story but the underlying message of the MD at the beginning has been lost. We should not use the vast developments in medicine to prolong the life of a body worn out and no longer strong enough to live. In an age in which we are constantly fighting the moral battle of what is right or wrong in the field of DNA modification and engineering, at the beginning of a life, let’s be very much clearer that medicine is not for extending a life that has come to a natural conclusion. I withdrew active treatment as my poor Mums body succumbed to sepsis after heart surgery, I have absolutely no doubt at all she would thank me for putting a stop to potential leg amputations, bed sores, life in a nursing home and the loss of her fiercely guarded independence. The message is simple, let nature take its course and make the passing from this world as comfortable as possible.

  446. Tamali Ganguly says:

    Very true. The modern medicine is perhaps a boon, but there is no justification in keeping a person mechanically alive when the person is no longer a human. Our elders have lived a full life, and long to go home once their responsibilities are over. When their minds are no longer in the present, its our duty to let them go. Present medical system keeps them alive mechanically which is a torture both for them as well as for the children. In India, where medical treatment is a personal cost, often puts the children in heavy debt while bearing this cost. In the name of medical ethics, it is the doctors and Nursing homes that make money. The elders should be allowed a peaceful end with love and support from family.

  447. Linda says:

    I gave up my 30s caring for elderly relatives while the rest of my immediate and extended family had babies, built careers, and went to Disney. The doctors and hospitals made millions. None of them cared how the constant doctor appointments and care giving affected my life. I was alone in caregiving and now I am alone in life. This isn’t working. Well I guess it is for everyone but me. Ha!

    • Yes, Linda. I wonder how many people are in your situation, also growing older, and with your history of service to family. Very sad. My heart goes out to you.

    • Linda I read your post yesterday. I contemplated it again today on my morning walk. I hope you have no regrets about the path your 30s took. I don’t know you, but from reading what you wrote I do know that you are a kind, loving, and thoughtful person. That in itself means more to people than you are probably aware of. I hope you know that you were not alone. You were with people who you cared for. To be a caregiver is hard work. I commend you for caring. I hope you know that you are one special lady! Namaste. I heart you.

  448. There are some people that like to keep granny alive because they continue to get their Social Security checks and the hospital covers all the costs of all of the care so the Social Security checks need to be used to bring granny home and care for her in says:

    The best and most qualified people to know about life and death and the appropriate time are the nurses who care for these patients in the hospitals and nursing homes I have seen countless doctors ask family members if they want to do everything for their mother what kind of answer does that evole?? I have seen countless doctors ask family members if they want to do everything for their mother What kind of answer does that evoke? The question really needs to be what kind of quality of life do you want for your mom do you want a peaceful ending with a smile on her face or do you want to tour of the ICU to see the litany of tubes and bed sores and medicines. Oh by the way these bills and the care will be transferred to you and your family. Not the tax payers. The government is reimbursing for end-of-life discussions it is time to really make sure that we are doing the right thing for our people always ask the nurse There are some people that like to keep granny alive because they continue to get their Social Security checks and the hospital covers all the costs of all of the care so the Social Security checks need to be used to bring granny home and care for her in the home clean her diaper try to get food down her I’m sure people would make the right decision like we do for our pets when they were forced to pay for these items

  449. Rae says:

    I never even hoped that a blog like this existed, and I thank you very much for having the courage to write it! I, too work in Long term care and the things I see on a daily basis have numbed the humanity in me. It astounds me the lengths that, while I hate to say it, most families and administration will go to for what they think. They are incredibly stupid idiots 9/10s of the time and don’t know jack squat, other than sitting behind a plush desk and freaking out if they don’t clock out on time. And that is the nice way of putting it.

    In the last 6 months, I can think off the top of my head severals things outright. That are not only fantasticly stupid, also downright disturbed.

    1. A person who is vomiting/passing massive amounts of blood to much for their frail body. Family fights tooth and nail to get them to the hospital where they are pumped full of drugs and invasive surgery is done. The person is comatose for several days and hooked up to IVs constantly before being brought back to original state which is in a babbling, dementia arthritic fetal position. Rather than letting person go with dignity.

    2. Another person stops eating, they lose weight. Family starts wailing they don’t want them to die, more invasive care. The aides are forced to start force feeding them, then almost get hit with abuse charges for doing what they were told to do in the first place. Facility gets off scot free.

    3. Resident with severe dementia, and is a HUGE fall risk. Therapy department thinks its a fantastic idea to teach this person to undo their wheelchair belt, saying they had to by law. NO, you don’t! Now not only has a HUGE potential risk been created. Because resident is facinated with it, tries to undo it and get up constantly, cannot walk, almost falls. As well as will get severely physically aggressive if stopped. But in the wrong circumstances, there is also grounds for a bigger lawsuit if the worst happens.

    4. A spouse has their significant other, who btw is basically a non verbal vegetable. This resident is atrophied in the fetal position, always in superhuman pain. Tubes in and out, the only thing this person can do for themselves is defecate. Its very obvious the spouse loves them, but refuses to let them pass on with grace. Every sniffle get them sent to the ER in a panic! When I suggested it might be better for spouse to let them go, rather than constant pain/no quality of life. The nurse tried to get me slapped with an abuse charge, I was livid!

    What has this world come to, we lock our elderly in basically end of life prisons. We let people who can’t see/speak/hear/think for themselves etc. be in constant pain and physical torture all to satisfy the selfish whims of people who can’t get how people used to be out of their heads rather than the “reality now”.

    What truly angers me is, liberals who have no clue what really goes on in these places. They think that all elderly are cute little dolls, that can be taken out of the cabinet, played with then shut away again when done. Its not the case, there are bigger issues, that people who while are well meaning are totally clueless after the fact of what is really needed. But refuse to educate themselves, because it “upsets” them

    I am SO tired of it all!!

    • Ruth A Redd says:

      Rae, what disturbs me most about your comment, is you say Liberals have no clue what goes on in these places. No one is more Liberal than I am! And believe me, I totally agree 100% and more with everything you have stated! I’ve been watching my 93 year old mom slowly dying for the past 6 months. When she went into the nursing home over a year ago, she was in the beginning stages of dementia, but still had the wisdom to tell us she did not want to linger and be kept alive. Thankfully, her Living Will is in place, stating no feeding tubes, life support, antibiotics, etc. I don’t know what keeps her going, but she is in a pathetic state and can do nothing for herself. Her food is pureed, but yet she pockets it in her cheek, because she cannot swallow. Many times I have to clean out her mouth, because the CNAs just don’t do it, even though I have complained numerous times. Mom sleeps 20 hours a day, what kind of life is this? There is absolutely nothing “cute” about the elderly who are beyond taking care of themselves. My heart breaks every day, and I just wish mom would pass peacefully so she wouldn’t have to live like this. I can only hope when I get to that stage in my life, I’ll have the strength to take my own life before I have to go to a nursing home, or live in a vegetative state. I am sick of people telling me that “God” is not ready for her. Some “god” for allowing people to go through this. We treat our animals better than our elderly. When the pet’s hind legs go out, we take them to the vet and they are humanely put to sleep. Basically, this is what is happening to our elderly, their hind legs have failed and they can no longer function on their own. I’m sure some people will think I’m cruel, but I do believe we need to have a pill we can swallow when we can no longer function on our own. I am going to have my Living Will edited to included something to that effect.

  450. Diana Daves says:

    We were so ignorant as a family and watched my Mother die in the very situation you describe..she was kept alive only to be starved to death. The nursing home was highly paid and qualified..it did not matter..my Mama should have died at home..I am so glad she is at home with Jesus..God forgive us!!!

  451. Tammy Brasel says:

    He paints a bleak picture. I’ve been in nursing homes for almost 1/2 a century (starting very young as a candy striper). While this may have been the picture 25 or more years ago, it no longer represents the care in a really good nursing home. Nursing homes are highly regulated to prevent the nasty things he talks about. The elderly are respected and treated with dignity. Their stories and life are who they are, not their ‘shell’ as he calls it. We work hard to have no restraints, no bedsores (not in my nursing home!) and we strive to provide a meaningful life until our Lord and God calls them home. While I know there are bad ‘eggs’ that just do this for a job, the majority of us caring for the elderly do just that….care and love the ones entrusted into our caring hands. God Bless you!

  452. Leigh says:

    Bravo to the Dr. that wrote this! I don’t understand why people are so afraid to die and kling to a life that has nothing to offer. Don’t they realize that the best is still ahead. I embrace death and can’t wait for the wild ride that lies waiting!

  453. Vickie says:

    Thankyou for this wonderful article. I myself have a directive and have discussed and remind my daughter of my wishes of not having life prolonged on machines and I want to pass on at home. I have helped 3 people to be able to do this at home home. While two had homeaides etc. Coming in.and nurses. I myself became to disabled to work any jobs. But just being there when no one else is , was first of all a necessity of law and all. And I do believe they were much more relaxed and enjoyed a bit of life more. I have raised my children. I don’t want to be any burden on them neither do I want to live in a nursing home. But have purchased and will have electric wheel chair ready and all. If one of them can just plug me in to electric and water hose and tap into Dewar, even hidden out back or something. Where I can do as i can . and get help aide. But one is in Colorado and one in Kansas they are both more expensive living as far as I can find anywhere close at a place already ready for hookups and I done want to be set side by side being able to hear neighbor conversations, fart, etc. And vice versa. I am a private type person. But do like to be able to have visitors and not worry if they’re a loud talker etc.than you again. Mo.

  454. Lindy Yost says:

    God bless this doc who has put it so well in words…..had me in tears,thinking of my own mother,and how she left us,and now seeing my mother in law, almost 94,as she moves slowly through her days in a nursing home,asking her son to take her back to where she was before.My husband wishes to live to be very old,doesn’t want to miss anything,but I tell him,we will always miss out on something;,let me go at home or in my sleep,as i will be happier to go at home with my loved ones….

  455. As a Chaplain I have contemplated your concern many times when I provide care with the sick. Yet when the time comes for a loved one of my own, the story changes. I (we) want to do everything possible to keep them well. One perhaps would call this double standards. The difference is I hope to stay strong enough to keep my loved ones close by until the times comes, and not in a restraint nursing home. Takes courage and wisdom to know when it is time to let go and let God.

  456. Aimee Hanrahan says:

    Amazing! Hopefully this will enlighten people who consider G tubes for 90 year olds (doctors included.) Dignity is what it is about.

  457. Joyce Hoffmann says:

    Because knowing when enough is enough is my right, I’m trying to find someone to help me write advance directives so I can die with my dignity intact.

  458. Debra says:

    I want the right to spend my last days on this earth with dignity. Manage my pain, but allow me to rest in my own bed surrounded by the sights and sounds of my loved ones around me. I have that right.

  459. Laurie says:

    I would GLADLY let my loved one die, but she won’t. I can’t take care of her. She needs full time care for toileting, eating, grooming, etc. I have a family of 5, 2 jobs, vehicles to maintain, and a house and property to care for. We had grandmother with us, but we were not able to care for her as she was bedridden. HOW DARE YOU try to blame or shame anyone who has made the gut wrenching decision to place a family member in a long-term care facility. Your view is a bunch of sentimental drivel, referencing a time when people did not work outside the home, family all lived within a few miles of each other and weren’t flung all over the globe, and medicines didn’t keep people with debilitating conditions alive 20 years beyond a reasonable life expectancy. Y I u want us to care for our relative who CAN’T hear or watch the children playing; YOU and your partner quit your practice and come on over. We’ll need both of you, because it’s a 24-hour a day/7-day a week job.

  460. Each of us has our own struggles with end of life issues for our loved ones. My mother was pretty far gone in Alzheimers, but she did not know it. She did not understand, so she was fighting to live. Finally, I told her without using any euphemisms that it was time for her to die, and she needed to let it happen. It clicked finally, and about 9 days later she passed on. I fought hard to keep her at home, and we were able to do that, in part because had very good insurance and in part because I am single and could focus on her needs and my job was reasonably flexible to allow her to pass in her own bed, in her own home with her stuff all around her. But I am not joking when I say I told her it was time to die. Her quality of life was gone, and she’d already outlived the hospice expectation of six weeks…by several months! But I could not keep up the pace, and so I told her that she needed to die. It was time to die. She finally understood and let go. She went peacefully and gently. I felt guilty about it afterwards. But not any longer. She died the way she wanted to, and she understood, and chose to let go of her life. Now, I know that she loved and trusted me, and was taking my advice because she loved and trusted me.So…if your loved one is teetering on the brink, maybe you just need to tell them what they need to do next. Tell them with love, clearly, and firmly. It will be OK. And then don’t beat yourself up because you did the things you had to do. Trust yourself. You are doing the very best you can for them. And you still love them. They know this, also. In the end, all that remains is the love.

  461. S says:

    My husband was taken from our home when I had to be hospitalized. My step daughters took him 200 miles away. I was well in 4 weeks but they would not bring him back. He was wheelchair bound but could transfer, could do personal care with my help, had some memory loss but not dementia. His daughters had him drclared incapacitated, put him in a care home, placed a restraining order on me, filed for guardianship. He had long ago told me to never put him in a nursing home, he had no social or mental activities and the food was not to his liking. I spent 60000 dollars in attorney fees, lodging, transportation to try to get him back. Both the daughters are doctors and claimed I was not taking good care of him. For the 12 months he was undertheir care and the home, he was in the hospital 8 times, 4 in icu with pneumonia. He was depressed and angry that he could not go home. In the last 3 months, no sun, no exercise, so social, he did not eat well, and just wasted away. And died. I know he would have lived longer or at least been happier at home with me and his friends. The court system did nothing to help. Could not get situation resolved in timely manner.As defendant I was looked on as the one at fault…even by some friends.

  462. kathleen says:

    S~ that is horrible you had to endure that, wicked step daughters!

  463. Cheryl Sweet says:

    Wow, this is SO true. And terribly sad! My Grandmother turned 100 this past November 2015. She has been living at her own home and functions well.
    I received a general message from my mother talking about all of their expenses. Then she said that she an her brother had been talking about the future arrangements they needed to make for their 100 year old mother to go to a nursing home!
    I haven’t had the words to come back to her about my horror at her saying this! Why??? Both she, my Dad, her brother and his wife have huge beautiful homes! They are both retired with millions of dollars! Why would they put my Grandmother in a nursing home?!!! Why not leave her? And bring her to one if their houses when the time comes?? What is wrong with them?!! My dad’s mother died at 95. She fell asleep peacefully in her own chair in her own house. It’s sad that she was alone. But she was feeling fine earlier that morning. And she passed the way everyone should have the right and dignity to pass. Thank you for this article.

  464. chuck says:

    Even if a person goes through every legal channel to make sure this does not happen to them (having a living will and medical proxy), a black sheep family member who happens to walk in the hospital first with the parent can take on the role of health care proxy and override every single decision, every piece of legal paperwork, and every other family member begging to follow the clearly stated wishes! My loving father had his wishes in writing and notarized, and well known to all family members. His wishes were based on his religious beliefs and he never faltered. But when the time came, the black sheep offspring did not follow any of it, for their own selfish reasons, and no health care provider from MD, nurse, receptionist or high administrator would discuss it with any other family member. Father lived for almost a year in ICUs, hospital rooms and nursing homes, tubes everywhere, unable to communicate, could not eat, etc. At the very very end the black sheep did bring father home to die, but only to receive assistance and benefits, and to look good. We can’t be the only family manipulated like this. We are still haunted by thinking of how father suffered.

  465. Kate says:

    There’s such truth in this article! As an ICU nurse, I experience my patients being tubed, trached and tortured, all while knowing the inevitable outcome. I talk to my patient’s families and often use the phrase, “let them die with dignity” when helping guide their decision making. Often, my input falls on deaf ears; if they only understood the entirety of what I’m talking about. Nobody wants to feel the heartache of losing someone that they love, but sometimes it’s the selfless thing to do. I know; I’ve been there.

  466. Pat Reszkowski says:

    Beautifully written. Having just experienced the loss of a sister who was just 69 yrs old and witnessed all you described for close to 6 weeks in TICU, I agree with you wholeheartedly. My family knows ‘I do not want this, do not ever put me in a nursing home’ I am putting my wishes in writing so this never happens. I made a promise to God that I would never put my parents in a nursing home. Thank God it never happened. Dad. Passed at 85 at home & Mom was 90 & living with me. The medical field is wonderful, but you are right, it has to stop at some point.

  467. giselaperez says:

    I agree. It’s sad to die like that. I remember my grandpa on my father’s side, in a hospital room, conscious but unable to move and seeing how his room-mate died, waiting for his own turn to expire surrounded by an aseptic atmosphere.

  468. Jane Moore says:

    I can speak from a position of knowing, as I have experienced both in my capacity as a nurse on a care of the elderly ward and as a daughter, who nursed both parents at home and granted their wishes to die in their own bed.

    Hospital is such an impersonal place to die, nothing familiar surrounds the dying person, just hospital noise and bright lights, people chatting and laughing as they walk past, unaware of this most important time in someone’s life… Death is feared by Western societies, swept under the carpet, never talked about nor planned for.

    My mother was 74 when she was diagnosed with terminal cancer in 2000, she was offered treatment to prolong life for a few extra months, but she just wanted to go home, so that’s what we did, we bought her home and she died about 6 weeks later. For those six weeks she became the very centre of our world, for the first time in many years we all came together as a family and together we cared for her and my Dad and enabled them to spend precious time together.

    On the morning of her death, the sun was streaming through the window, she had been more or less unconscious for a couple of days and her breathing had that rattle, but with my Dad sitting in a chair beside her holding her hand, she opened her eyes and smiled the most beautiful of smiles, she was beautiful and serene in her dying, she was glowing as she slipped away.

    My fathers dying was much different, he had many little strokes that slowly took parts of him away…his Independence, his mental agility, his mobility, his speech and finally his ability to swallow. All through this he adamantly refused hospital visits and when I discussed the option of a feeding tube into his stomach, he firmly refused that too. He wanted to remain at home and I honoured his wish.

    He was a man of slight stature and I was able to move him from chair to bed, he spent his last days in his chair, trying to sip his wine and smoke his cigarettes, I was with him constantly, I washed him and I chatted about the things I knew he loved…reminiscences of happier days when he was young and life was good. He could still write, and he prompted me with scrawled sentences of memories he wished to share. A couple of days before he died, he took to his bed, he slept a lot but he wasn’t in any pain, which was such a blessing.

    On the morning of his death there was such a sense of calm and peace, he reached out a couple of times and I asked if Mum was here, as soon as I asked I felt silly because my Dad didn’t believe in such things, but to my utter amazement he nodded! Again there was a glow in the room and he lay there, with me beside him on the bed, his breathing so quiet, gently slowed and he was gone. If there’s such a thing as the perfect death I think that was it. I and my two children surrounded him with love in that room and with that he slipped away….in my minds eye I could see them, my mum and dad together again and I was comforted.

    Now I talk openly to my children about what I want and what is to happen, my son assures me that he will be up to the task of doing for me what I did for my parents and I trust that he will. Families are much stronger and more able than they give themselves credit for. It is such a privilege, such a humbling experience and really it’s an expression of love and respect to allow ourselves and our loved ones to die in the busom of family for no one understands us like our own.

  469. A great issue about death and it’s prolongment by procedures that are obviously profitable… and that’s how i see it… we have a profit motivated system that is at the core of this prolongment and it needs to stop. Just about the whole world has changed except us…

    • Ruth A Redd says:

      In my opinion, you are correct! I believe it’s all about the almighty dollar and I wouldn’t be surprised if the nursing homes get some kind of kickback from the pharmaceutical companies. Just recently we had mom’s quarterly review at the nursing home, and questioned the meds she is still taking. Why in the world does a 93 year old need cholesterol medication? Even the nurse agreed to stop that, as well as two anti depressant meds. We’ve noticed that mom seems to be more alert since those anti-depressants were stopped. This is what it’s all about folks, they keep your loved one so drugged, that they sleep most of the day and don’t bother anyone. I see from my own mom’s routine: she gets up for breakfast, then is put immediately back in the bed until lunchtime. Then back to bed until dinner time. I have to catch an aid in the morning to ask them not to put her down after lunch, so I can take her outside for a while. It’s a horrible life, but there is no way I can care for mom at home. I urge anyone who has a loved on in a nursing facility, to ask about their meds, and see what can be safely discontinued. Let them die peacefully without being kept alive with drugs. Most of the folks in the homes have no idea who they are, or where they are, much less what meds they are given. They certainly cannot function on their own anymore.

  470. Lisa Cox says:

    Thank you so much for writing this. Our mother has had Alzheimer’s for nine years. There was a time when all of us kids took Momma for awhile and care for her needs. Now she sits in a nursing home, alone and wets her pants. She sits in poop when we catch the nursing staff neglecting her. I pray God will take her home everyday. .

  471. Andrew Shaneyfelt says:

    Advanced Directive

  472. Chris says:

    I completely agree with the thoughts and understanding of this doctor. Several years ago when I worked in a hospital, a reg. respiratory therapist voiced similar thoughts, saying the elderly and very ill or critically injured patients had lost a good friend- pneumonia. Since it was “conquered”, those people would no longer be allowed to die. Instead they would made to live too long, in pain. Health care has become more inhumane than ever.

  473. Sandi says:

    My mother-in-law lived with us until the end. She had Alzheimer’s and when her doctor asked her about the choice of medical intervention she simply said,”Whew! Just dig a hole and throw me in it!” That is Irish for,”I love you, let me die.” We were criticized the day she had her stroke for simply calling a priest and making some soup. There was a desire by some to intervene and save her, so that she could now wake up paralyzed and hopelessly lost. Her six boys voted for hospice and she passed peacefully here holding our hands in her bed.

    It seemed so normal until we realized no one does this anymore. It was beautiful and our children were happy for her. I hope it comes back in style to accept death as a family event.

  474. Summer says:

    Let me die!!!!!

  475. Denise D'Asto says:

    Beautifully and poignantly said. My own Dad, rest his noble soul, was also a physician and would have agreed. We, his children, will ever be grateful that, although in a hospice bed, he passed holding all of our hands after singing, praying, laughing and crying together and sharing beloved family stories, all within his conscious awareness, till his last aching breath. God bless all healers, especially those who know that even doctors and medicine have their natural limits.

  476. Ciciley Lester says:

    You are exactly right about the best way to die. My 94 year old mother passed recently and chose to do so at home. We had Alive Hospice in the last six months. They did a wonderful job. She went naturally peacefully and exactly the way she wanted to go. I was with her the whole time and am glad we could honor her wishes.

  477. Eileen says:

    Beautifully written., it is so sad that this generation is so selfish..All that matters is themselves and the almighty dollar…me me me..seems to be the mantra…….it just tears me apart that people no longer care….so so sad…wonderful article though.

  478. Regina says:

    Being in my late 40s, I’ve had a DNR since my early 40s due to one illness wrecking my body after another. I am hurt, I am tired and when my body says ‘I am done’ then I am done. Spend the money and energy on the healthy who need and want saving.

  479. I look at death as being the doorway to the next part of the adventure. And I’ll be pretty upset if the doctors keep me alive unnecessarily and keep me away from passing through that door.

  480. Inge Diodati says:

    Such a good article. My mother and father died at home well taken care of. My father was so worried that we would stick him in the hospital or a nursing home, which we did NOT. I hope my family will let me stay home and go when the time comes. All this other ado is not necessary. We all have to go sometime.

  481. blondieaka says:

    A brilliant, thought provoking article maybe we all take a step back and make our wishes known to our families as to how we wish to go….

  482. BC Bud says:

    The human brain is a wonderful device. It is the only part that is with you, providing a sheltered home for the conscience and controlling the body, from the very start of life to the last ember extinguishes from existence. In the absense of the perfect death setting, we do have the ability to imagine ourseves in any scenario we enjoy. Well, that is true in my brain, anyway. Likely a large percent of anyone’s brain will work like that.

    Thank you for this impression I shall take along my journey towrds those last days pethaps so long from today for many of your readers. Onwords forward now, enjoy your day!

  483. Melissa says:

    I have a 12 year old daughter who has several chronic health challenges. One of the big ones is severe scoliosis due to severe cerebral palsy following premature birth. This has deformed her rib cage and is compromising her internal organs. My prayer is that she won’t contract pneumonia this winter like she did last year. At that time she also had an hour long seizure in the emergency department triggered by the infection. Her Dad and I were not permitted to watch the staff intubate our child.They pulled a curtain and who knew what happened? How could that have been any worse than seeing the buckets of ice placed on her neck to try and cool her temperature down? We are very concerned that a spinal fusion surgery wouldn’t be the right choice for her. Just because her vast team of medical and educational professionals think it is the right choice, how will her long term quality of life suffer? She seems so happy now, always smiling and ready for a game or joke. I really do wonder if we will bury our child and will more medical interventions hasten the arrival of that day. I am her primary caregiver with limited physical help at home.

  484. Jennie says:

    I would like to share the flip side of the author’s argument, as summarized in this video:

    https:/youtu.be/F2VIFY_Lcrk

    This grandma’s desire to die a natural death was not honored due to financial considerations, which is a growing danger with large sums of money being handed down, service shortages, an inadequate caregiving workforce, etc.

    Neither extreme is good and it is going to take honest discussions and some creativity to find solutions that will help us strike a balance as the Boomers come along next….

  485. Chuck Geurin says:

    Very nice summery. That is why I think so highly of the people working in Hospice. They are truly earth angels.

    God bless them and you for taking your time to write this down.

  486. Nana Qwequ Quainoo says:

    Deep

  487. Cheryl says:

    So so sad my prayers to all in that situation god be with them! ????????????????

  488. Yes, stop the madness. Let me die at home peacefully with my family.

  489. Nymeria Rahl says:

    My grandfather just passed away at home just short of 97 years of age. He had a bit of a cold but that was about it. My uncle was with him while he was passing and we were all very happy he was able to die at home. The people at 911, the police and ambulance people were not so nice. Everyone was super excited that my uncle did not try to preform CPR. There was no do not resesitate order as he was healthy living at home and had never been in the hospital. The ambulance people tried to force my uncle to let them do CPR. My uncle had to be overly firm to get them to back off, which was the last thing he should have had to deal with! At some point everyone has to die, so why would we want a sharp minded mostly healthy man to spend weeks or months slowly dying and possible be in pain in a cold isolated hospital room? Emergency personnel should read this article to help them understand why some people and families they want to save would rather accept dying at home. Emergency personnel should also been given some guideline to discuss with families where the patient is over a certain age, regarding if it is best for the patient to try and revive them or would it be better to let them go peacefully at home.

    Thank you for such a well written article!

  490. You put my thoughts into words. Beautifully written, thank you.
    -Meg

  491. Jai says:

    She might also have died in incredible pain in some filthy squalid working class ghetto.
    The writer has written very poetically about how we used to die, how we’d like to imagine people dying, pleasantly.

  492. Lorraine Traylor says:

    BRAVO BRAVO!
    25 years in prehospital medicine and I couldn’t tell you how many dying patients I was forced to violate because of their ignorant families! I wish the same death on everyone of the idiots that have left comments here condoning forced medical treatment on those that want to die quietly in their own homes, in their own beds and are forced into ambulances and into hospitals by families and “healthcare” workers playing GOD! Hospice at home or at a facility is the best thing since peanut butter! Don’t think you have the right to choose when I die or how! It is only an Emergency Medical worker that knows what this Physician has said, AND IT IS ABOUT TIME SOMEONE HAD THE GUTS TO SAY IT!

  493. Tricia Duffy says:

    Excessive care! Absolutely. My mother is 95 and in hospital, bleeding from the bowel. The doctor wanted to operate and I said, no, I will not give permission. He was extremely angry with me and told me that she “would not make it” unless I agreed. My reply was “Guess what? She is going to go soon. Why put her through the drama, pain and suffering of a major operation?” She didn’t have the op, but she did survive and is still imprisoned in her room in the Nursing Home. Turned out the bleeding was a direct result of the drugs she had been given. Her weight is 31 kilos or less than 70 lbs. Her skin is translucent. All her bones protrude and she looks like a survivor of a concentration camp. But they give her wonderful care. Every time she looks like passing peacefully they summon all their marvelous drugs and techniques and bring her back. Yes siree. Be impressed by the wonders of modern medicine – it could be you next in the Nursing Home!

  494. Debbie Kelly says:

    I have been caring for my Mom for 3 years now in various capacities. We had her living with us after a fracture in her right leg and signs of dementia. We own our own business and I am a heart patient so we put her in a personal care home for a while, funded by us majorly so I could concentrate on our business for a while and that proved to be too costly but it did allow me time to get her applied for VA benefits, etc. then we had to bring her back to our house due to cost and needing to give our poor company/business a financial break from all the beating. Either options you’re paying a hefty price. She is now on hospice care and has been for six months and was just re-certified. I am worn out, my husband is worn out and I am coldly ready for Mom to go on to be with her family in heaven. She is still eating some, she is mostly bedridden but I will not subscribe to any feeding tubes, no extraordinary measures to save her life.

    Her quality of life is an almost blind, unable to walk, barely able to stand and definitely not able to care for her own bodily function human who is surprisingly pain free, happy with life, as it is but lives in a fabricated reality where she things she can see, she thinks she gets up out of that bed and she thinks she has many people around her. Perhaps she does in a spiritual form but I feel like I am living my life on house arrest, compacted to a box existence, while waiting for her to be ready to face her maker.

    I work daily to not become bitter, not let it absorb me completely and lose who I am as a person. My Mother was always working in her garden, moving about and I guess this created realm is the only way she can cope with this condition but I am ready for the goodbye. We’ve been through it with Dad, back in 2005 and I am tired of this day in day out routine of going nowhere.

    Sounds cold, I know, but its been a long road of acceptance of each and every step to get to this place I am at. My guess is once I’ve reached there, then there will be a huge void in my life where she is sitting at this juncture but I will just have to walk through that process as well. I hope she finds a peace and a new body with none of the horrible aspects we see daily. No muscle tone, no ability to stand, sit straight, hold a fork, feed herself a bite, smile when a child comes into the room.

    To me this is worse than death. It is cruel and unusual punishment. I pray for a cure for dementia/alzheimers.

    • Ann Kreilkamp says:

      Thank you so much for this view into our common predicament in a culture that refuses to face the reality of death. I am thinking seriously of collecting the hundreds of comments from this post into an e-book. You have just nudged me closer to that task.

  495. Emily J. M. says:

    “We have accumulated so many options” – so true! But we have neglected the one necessity – being able to discuss death rather than hide from it.

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  497. Alaysa Hamilton says:

    This article is very accurate. Many families wish not to put their older family members in nursing homes yet they do because they want them cared for. People grieve their deaths before it happens because they know it’s coming. It’s their family, someone they grew up knowing and now for them to be dying in front of them it hurts them and they want to be there ever step of the way.

  498. his article is very accurate. Many families wish not to put their older family members in nursing homes yet they do because they want them cared for. People grieve their deaths before it happens because they know it’s coming. It’s their family, someone they grew up knowing and now for them to be dying in front of them it hurts them and they want to be there ever step of the way

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