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.

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750 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..

      • 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.

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  4. 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?

  5. 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.

  6. 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.

  7. 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.

  8. 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!

  9. 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.

  10. 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.

  11. 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.

  12. 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.

  13. 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!

  14. 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????

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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?

  21. 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.

  22. 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.”

  23. 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

  24. 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.

  25. Sau says:

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

  26. 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.

    • Carol says:

      Spot on!

    • 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)

  27. 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.

  28. 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…

  29. 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!

  30. 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.

  31. 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.

  32. 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.

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  34. 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.

  35. 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.

  36. 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

  37. 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.

  38. 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..

  39. 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!

  40. 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.

  41. 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.

  42. Judy says:

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

  43. 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.

  44. 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.

  45. 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.

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  47. 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.

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  49. Cathy Gray says:

    Nothing to say except God Bless You.

  50. J says:

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

  51. 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.

  52. 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.

  53. 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

  54. 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.

  55. 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.

  56. 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.

  57. 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.

  58. 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.

  59. 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.

  60. 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.

  61. 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.

  62. 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.

  63. 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….

  64. 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.

  65. 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.

  66. robin beattie says:

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

  67. 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.

  68. 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?

  69. 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!

  70. 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”.

  71. 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.”

  72. 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.

  73. 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.

  74. 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.

  75. 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.

  76. Debbie Taylor says:

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

  77. 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.

  78. Tina Baker says:

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

  79. 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.

  80. 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.

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  82. colleen says:

    Bring back dignity in death. X

  83. 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.

  84. 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.

  85. 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.

  86. 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.

  87. 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

  88. 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.

  89. 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.

  90. 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!

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  92. 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:)

  93. 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.

  94. 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.

  95. 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…

  96. 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

  97. 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.

  98. Patti Loyd says:

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

  99. 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.

  100. 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.

  101. 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.

  102. Maureen Dane says:

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

  103. 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????

  104. 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.

  105. 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.

  106. 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.

  107. 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.

  108. 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………..

  109. 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.

  110. 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.

  111. 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.

  112. 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

  113. 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.

  114. 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.

  115. 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.

  116. 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.

  117. 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….

  118. 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

  119. Debbie says:

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

  120. 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

  121. 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.

  122. 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.

  123. 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

  124. Jamie Bales, MD says:

    This is lovely Lou. Thank you!

  125. 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.

  126. 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 .

  127. 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.

  128. 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.

  129. Betsy says:

    Very well written and I agree.

  130. 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.

  131. 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”.

  132. 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.

  133. 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.

  134. Pingback: How we used to die; how we die now | The View From My Studio

  135. 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!

  136. 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.

  137. 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!

  138. 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?

  139. 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.

  140. Cindy says:

    How do I go about following you on Facebook?

  141. 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’!

    • Jeannine says:

      I agree, that is a very good book. This is a difficult topic. My mom is 84 and has a lot of health problems. She is on so many medications it is ridiculous.

  142. 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.

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  144. Tracy says:

    Reblogged this on Dal Segno.

  145. Pingback: how we used to die; how we die now | Neil Westbrook

  146. 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.

  147. 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.

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  149. 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!

  150. 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.

  151. 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.

  152. 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

  153. 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.

  154. 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.

  155. 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

  156. 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.

  157. 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.

  158. 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.

  159. 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.

  160. 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?

  161. Randy says:

    Good Read on Dying

  162. 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.

  163. 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

  164. Nancy says:

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

  165. 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.

  166. 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!

  167. 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.

  168. 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.

  169. 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!

  170. 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.

  171. 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.

  172. 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!

  173. 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!

  174. 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…

  175. Bobbye Eachus says:

    Thank you – Well done!

  176. 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

  177. 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.

  178. 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.

  179. 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.

  180. Viv says:

    Right to Die laws need to be passed!

  181. 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.

  182. Patricia says:

    This is so sad but true

  183. 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.

  184. 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.

  185. 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.

  186. 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,

  187. 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.

  188. 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.

  189. 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…

  190. 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.

  191. 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.

  192. 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???? ????

  193. 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.

  194. 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.

  195. 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.

  196. 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.

  197. 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.

  198. 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.

  199. 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”

  200. 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.

  201. 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!

  202. 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.

  203. kristina says:

    Thank you for writing this!

  204. 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.

  205. 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. 🙂

  206. 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.

  207. 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.

  208. 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.

  209. 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.

  210. 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.

  211. 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.

  212. Tina says:

    I want option 1

  213. 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.

  214. Pingback: Survival Podcast - Listener Feedback for 1-25-16

  215. 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.

  216. 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!

  217. 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.

  218. 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.

  219. 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.

  220. William says:

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

  221. 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.

  222. 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!

  223. 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.

  224. 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

  225. 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

  226. 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.

  227. 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.

  228. 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

  229. 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.

  230. 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.

  231. 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.

  232. 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

  233. Pingback: How we used to die; how we die now | marinor1964

  234. 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.

  235. 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!

  236. 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

  237. 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’.

  238. 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

  239. 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.

  240. 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.

  241. 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.

  242. 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.

  243. 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.

  244. 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.

  245. 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

  246. 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.

  247. 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”.

  248. 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!

  249. kat says:

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

  250. 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.

  251. 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.

  252. 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.

  253. 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!

  254. 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.

  255. 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.

  256. 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?

  257. Pingback: How we used to die; how we die now | design and dementia

  258. 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…

  259. Pingback: Dying Better | Austin ED Education

  260. 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.

  261. Betty richardson says:

    Could money be part of the practice?

  262. Mischelle Paton says:

    This is why I left nursing

  263. 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!

  264. 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.

  265. 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!

  266. Karen Wan says:

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

  267. 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.

  268. Lois says:

    Makes me feel so sad.

  269. 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.

  270. 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.

  271. Betty Sexton says:

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

  272. 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 .

  273. 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.

  274. 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.

  275. 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.

  276. Laura says:

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

  277. 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

  278. 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.

  279. 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. 🙁

  280. 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.

  281. 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.

  282. 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

  283. 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.

  284. 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.

  285. 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.

  286. 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.

  287. Leslie says:

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

  288. 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

  289. Liz says:

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

  290. 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…

  291. 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?!

  292. Carole says:

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

  293. 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.

  294. 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?

  295. 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.

  296. 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.

  297. 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.

  298. 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.

  299. 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.

  300. 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?

  301. 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.

  302. 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.

  303. 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.

  304. 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…..

  305. 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.

  306. Mary Johnson says:

    Thank you.

  307. 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!!!

  308. 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.

  309. 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.

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  311. 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.

  312. 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.

  313. 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.

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

  315. charles Baker says:

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

  316. 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.

  317. 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!

  318. 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.

  319. 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.

  320. 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.

  321. 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.

  322. 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’.

  323. Mary Ann says:

    Thank you

  324. 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.

  325. 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.

  326. Paul Sarnoff says:

    DNR makes it easier for everyone.

  327. 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!

  328. 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.

  329. 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.

  330. 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!

  331. Sydney Daughtry says:

    I understand completely.

  332. 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.

  333. 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

  334. 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.

  335. 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?

  336. 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.

  337. 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.

  338. 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.

  339. larryjben says:

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

  340. 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

  341. 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.

  342. 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.

  343. 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

  344. 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”?

  345. 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.

  346. 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 .

  347. 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.

  348. 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.

  349. David Welsh,M D says:

    Very nice. Thank you.:)

  350. 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.

  351. 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???

  352. 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.

  353. 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.

  354. ILEANE C Mindel RN says:

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

  355. 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.

  356. Virginia Dwyet says:

    This is so true.

  357. 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.

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

  359. 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.

  360. 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.

  361. Joan Hohman says:

    So Freaking True.

  362. 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

  363. 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.

  364. 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.

  365. 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.

  366. 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.

  367. 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.

  368. 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”…….

  369. 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…

  370. Pingback: How we used to die; how we die now

  371. 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.

  372. 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!

  373. 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.

  374. 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.

  375. 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.

  376. 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!

  377. 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.

  378. 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

  379. Ralph Raynes says:

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

  380. 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.

  381. 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.

  382. 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.

  383. 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 !

  384. 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.

  385. 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.”

  386. Anne Brennan says:

    Thought provoking.

  387. 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!

  388. 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.

  389. 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.

  390. 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.

  391. 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/

  392. Duane Wingo says: