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Where Do You Want to Die?

Surely you remember movies from childhood and maybe a bit later showing the patriarch of the story dying in his bed as family members hover around?

I sure do. It was such a common scene back then that images of several different ones are stored in my head still, although I can't name the films.

For eons, dying at home was the norm. And then, beginning in the early 1900s, it wasn't anymore.

Now, for the first time since then, more people in the U.S. are dying at home than in hospitals and nursing homes. As CNN reported in December:

”The researchers looked at the number of natural deaths in the United States based on data collected by the US Centers for Disease Control and Prevention and the National Center for Health Statistics.

“They define natural deaths as when a medical condition leads directly to death, meaning people died from heart problems or cancer, among other diseases, rather than dying in a car accident, for example. The authors looked at data from 2003 to 2017.

“They found that hospital deaths are still common, but that number is declining. There were 905,874 hospital deaths in 2003, 39.7% of deaths. And by 2017 there were 764,424 hospital deaths, 29.8% of deaths.”

As veteran science and medicine journalist, Gina Kolata, reported in The New York Times,

”In Boston in 1912, about two-thirds of residents died at home, [Dr. Haider J. Warraich, a cardiologist at the Veterans Affairs Boston Healthcare System and a co-author of the new research] said. By the 1950s, the majority of Americans died in hospitals, and by the 1970s, at least two-thirds did.

“Americans have long said that they prefer to die at home, not in an institutional setting. Many are horrified by the prospect of expiring under fluorescent lights, hooked to ventilators, feeding tubes and other devices that only prolong the inevitable.”

But it is not always easy to die at home. Dr. Warraich, writing recently in the Washington Post, notes how difficult it can be for both family caregivers and the dying person.

”...as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.”

He says, too, that many people feel strongly about where at home they want to die, and there are other practical and personal considerations:

“Nearness to a bathroom is key. Sometimes, light remodeling, such as installing handrails in bathrooms or ramps, is helpful.

“A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers.”

According to the study, there has also been an increase in the number of people who die in hospice facilities.

”In hospice,” explains CNN, “an interdisciplinary team of professionals that specialize in end-of life-care address the whole person. They work to help manage pain and the person's physical needs, as well as their mental and spiritual distress. Hospice also helps the family and coordinates care.”

Medicare (and other insurance) covers hospice care which often takes place at home. Last year, an internet friend had been under home hospice care but was grateful in the last few days of her life to move to a hospice house where she could receive additional care allowing her the time to let go.

A home hospice worker can't do everything the patient and family need and there are other options. Kelly Sanders, who is an RN and end-of-life doula in Michigan, told Healthline,

“'Hospice does a great job taking care of the medical aspect of dying, but due to the changing nature of healthcare compensation, little time was left for the other aspects of dying that are just as important for a peaceful passing,' she said. 'End-of-life doula services fit that need.'

“She said there is a big misconception that hospice provides the same services as a death doula.

“...a death doula can fill a gap in care. People can work with a death doula before they reach a point where they qualify for hospice. And an end-of-life doula is able to devote themselves to a single person, going in without an agenda to fulfill that person’s needs.”

When I started pulling this story together, I intended to give you these new statistics about where people die, and let you know how people – medical professionals, families, those who are dying – deal with the choices. But there's a lot more to it than I had considered for one short blog post.

So. Let's stop here for now and over the next while I will post additional information about such issues as advance directives, hospice at home and at a facility, doulas, etc. that we can discuss individually.

Today, I'm curious about how much thought you have given to where and how you want to die. Do you think it is morbid to talk about? (Most old people don't.) Have you talked with your family about end-of-life issues? And so on.

(I urge you to follow the links within the story above. They have a great deal more good information.)

Comments

Wow. I must admit I’ve given no thought to it personally, I almost think it’s more important to the loved ones you leave behind. My dad died at home, on a bed made up on the couch, while my aunts held his hands and sung his favorite hymns to him while the rest of us looked on.

My mom died in the hospital, under the care of Hospice, in the middle of the night and alone. My sister & I have been wracked with guilt over it for 15 years. She had 6 kids (and did the bulk of the parenting) and deserved better.

Being unmarried with no kids of my own, it doesn’t really matter to me. I just hope it’s quick, like a stroke or heart attack, and not from a lingering illness like both my parents cancers.

I remember in the '50's when my foster parents cleared their front sitting room to turn it into a bedroom for her mother and then his mother. My older sister's husband and my baby sister's mother-in-law passed in hospital beds moved into their living rooms. They were loving experiences. I've also sat with a number of people as they passed in hospitals and it was always cold and... clinical. I expect to pass as I've lived, but I think I'd choose a homier setting if I could.

My friends and I talk frequently about this topic. I live in an Over 55 community plus I coordinate the memorial services. I lost a friend Sunday who was in an adult family care home via Hospice. Several people have chosen to die at home with caregiving done by family members with hospice support.
My husband died at home. We had Hospice but the majority of care fell to me. I regard it as a traumatic experience. My Mother died at home with round the clock care which was much easier on me. My Mother in law died in a nursing home.
My preference would be to die at home with home care so all of the care wasn’t done by family.

My parents each died at home after brief cancer battles (4m for Dad, 7w for Mom). I wouldn't have it any other way. My youngest sister and I were both with each of them. My husbands' Grandmother was in the hospital. 5 kids and a load of grands and no, they didn't divy up the day and have someone with her around the clock those 5 days. Yes, it made me angry!!!!

Hubby and I hope that we are both at home until the end. (we have no children-we would bring in a caregiver when needed having remodeled with a large live-in bedroom and adjacent bathroom). At just 58, some would say the discussion is morbid. I say NO! We need to be real about the fact that this life will end someday.

Yes, I've thought about it, and the corona virus has me updating my advanced directives and putting the papers together that my survivors would need.

Re: place. A lot depends on what I'd be dying from. A blanket wish to "die at home" is problematic if you're dying from something like Alzheimer's or Parkinson's or ALS that can take years to kill you. That's a horrible burden on the family, especially if there are children in the home. And the physical demands of such a task are tough on anybody, but certainly especially on older people.

My Dad died in the ICU at the local veteran's hospital after a brief stay, and we couldn't have had a better experience anywhere. The nurses were so, so fantastic...warm and helpful and empathetic. His wife, kids, and brother and sister were with him, and we had a chance to say goodbye.

My Mom died in the nursing home where she'd lived for six years. One aide switched shifts so she could be there with Mom. Again, the staff was wonderful; Mom's death was their loss, too. I will always remember with great warmth and gratitude the aide who cracked the window open. It was her custom to do that when someone died; she believed it "let their souls go."

Maybe it doesn't matter so much "where" as how and with whom. Personally, I don't expect my sister or nephews and nieces to provide 24/7 care, especially for years. I'm rather assuming I'll die in a nursing home if a quicker disease doesn't get me first.

My father died in his own bed, after a day of serious farm work. He was irrigating his cotton land and held on to the very last minute so he could get the water turned off, sending it on down the canal to the next farmer who was expecting it. He came home, lay down, and died.

My sister died at the end of the day of Christmas shopping for her great grandchildren. She came home, unloaded her packages, made a cup of coffee, put on her slippers, and slipped away.

These are two deaths I hold close to my heart as I really want to die at the end of a day having done something I really love.

Ideally I would like a Viking death, on a raft set out to sea and set on fire with flaming arrows. Perhaps with a bottle of wine. But that's unlikely to happen. What ever does happen, I would prefer it not be in any sort of clinical setting. A a peaceful outdoor natural environment would be nice.

Where & how? I have Parkinson's, a chronic, no-cause-no-cure malady which debilitates by millimeters. You do not die of PD, you die "with it". So, I can perhaps act out my wishes when the time comes, before I am completely debilitated, without broadcasting my intentions. I do NOT think it is a morbid conversation. Yes, I have spoken with my children. They know my wishes and will act accordingly. I wear a DNR bracelet, have placed Advance Directives in appropriate places. NOW - if EMT's and/or any other medical personnel will pay attention??? Hopefully they will. It is the best I can do.

My father died at home, and my husband and I traveled to Western Nebraska to be with him and help my mother. He was a radiologist, so knew the medical community. His oncologist visited him a few days before he died (of a brain tumor) and Dad asked what would happen if he quit taking the steroids that were keeping the swelling down. The doc said if he quit, in a few days he would die. Dad said he was afraid he wouldn't know when to quit. The doc said "You'll know." And he did; after the last of the grandkids had visited, he said "Well, that's the last of them." The next day he quit the steroids and a few days later, on 9/9/'99, at 12:09am, he died, with my mother and one of my brothers and me at his side. It was peaceful. It was beautiful.

One year later my husband was diagnosed with colon cancer, and two years after that, he died, also at home, also by choice, and also with the help of Hospice. The Hospice nurse, a close friend, and I were at his side, and the most remarkable thing is that I felt his soul, or spirit, just waft out of the room, leaving his poor body behind. I had planned a ritual for when the time came, and soon the women began to arrive. We bathed his body and wrapped him in unbleached muslin, with rose petals on his chest. After a time, we called the mortician and then he was gone, out through the garden for the last time. It was peaceful, and it was beautiful.

Nine years later, my mother died, also at home. I made it home in time to be with her at the end, but she had had a massive stroke and was not conscious, so I didn't get to say good-bye in the way I had hoped. For her death the whole family was there. She struggled at the end, and couldn't breathe, but we said "It's ok Mom, you can do this. We are all going to be ok. We love you." And soon the struggle was over and she too was gone. And in the end, it was peaceful. It was beautiful.

Last year the eldest of my younger brothers fought hard against acute leukemia, and I spent a lot of time with him, in the hospital in Denver. His wife was there the whole time and their son as well. Todd and I had many conversations about life and death and the meaning of it all. He, too, wished to die at home and was concerned that he would miss his window of opportunity to travel back home. He was a physician, he knew what was likely coming even as he chose to try every treatment available. When the last one failed, they went home. They made a plan (my sister-in-law is a nurse) and executed it well. In one month, Hospice was called and we all gathered to be with him and hold vigil, at home. When he died two days later, he just slipped out of the room, with all of us there, and he was gone. It was peaceful. It was beautiful.

Having attended four deaths now, I am in awe of the process. This final transition is magnificent. There is no other word that captures, for me, the power and beauty of death. When my time comes, I want to die at home. I want to be ready, I hope I will be at peace. I hope my loved ones will do for me what I have done for others, in bathing my body, blessing my spirit, sending me off with love. For time out of mind, women have attended to the dead. I think it is an important ritual we do, a way of saying good-bye with love and dignity.

So these are my experiences and my wishes. I hope everyone gets the kind of death they most wish for.

I used to joke about this at work. I am somewhat estranged from my family and have no children. If my wife is still cognizant, I would like to have her by me. Otherwise, I don't care as long and my life isn't artificially extended. Bernie Fleming is not my real name, but the
military will only provide a headstone with my "military" name on it. My real name is John Marion Wolfensberger. Long story, but I'm clean in either name. I am now in the "third" phase of life. Family members died at home, I was there. Others have died in a hospital setting. I have no preference.

I haven't given it a lot of thought, but I imagine circumstances will dictate. A heart attack or stroke, at home. Something lingering, in a hospital or hospice. I'd much prefer to go quickly. And as introverted as I am, I'm not sure but what I'd rather die in private. Besides, I worry most about the pain it will cause my son; it might be easier for him if he weren't there.

I do not want to put on my family the stress and responsibility of caring for me at home in my last days, even with home care assistance. I would prefer to be in a homey residential hospice, with aides and nurses for my physical needs and family around me, as they can, for emotional support.

A good post, and I'm delighted there will be more on this subject.

About 10 of us have a bi-monthly salon that meets to discuss these issues and things aging related. And to build the close community that will see each of us out when it's time.

My wish, though a distant one, is to win a big lottery so that I can build our Co-Housing community, and then die peacefully there, in our own hospice unit. I keep that as my best dream, but realize that it is only a remote possibility. I've done a fair amount of research though, and have a plan in place jic the lottery win happens! :)

Four and a half years ago, my wife died in a hospice unit of a hospital in Albuquerque. If I can't have my Best Dream, I'll happily take that, or a similar one. It was peaceful and beautiful.

Thanks for sharing your experiences, everyone.

I don’t think about where I would like to die as I don’t believe I have a choice in the matter. For me what’s important is my body and what’s done to it after death. I’ve made my wishes known to my son and husband. I’ve witnessed many an argument in families over this.

I agree with Julie B. My father hired home health aides for his last days when he needed help to bathe, dress, and use the bathroom. They stayed up with him at night so we could sleep without worry. When Dad climbed into in his armchair to prepare for Medical Aid in Dying, the aide stayed until the attending doctor arrived, and then left the family for our last hour together. I'd choose the same.
Home health aides allowed us to share my Dad's last days without worry and gave Dad the dignity he wished for.

I want to be where I am receiving care necessary to my situation. My father died in 1982 in a hospital hallway because all the rooms were full. My mother died, in 1995, in a convalescent hospital where she had been moved that day. Only people who checked the chart to know their names were with them. Those deaths would not be my choice.

Of course , I'd like to die at home or in nature. But as a single person without family, I am investigating both Aging in Place, and assisted living places. Hoping to avoid the latter. And really, I think it's such an intense experience, place, and attending people really may not matter all that much. I trust it will go well.

Ideally I'd like to die in my rocking chair sitting in the sunshine on my patio. I hope to avoid dying in a hospital. A friend of mine died at a table in a restaurant with 8-9 of her friends who had gathered for lunch. My Dad died in a hospital the night he came in and Mom died in a hospital with all her family with her also the day she came in. Dad didn't want company, made us leave, Mom did and everyone was there. Who can tell what will really happen?

Check our The 5 Wishes program.

Of all your great posts, Ronni, this is the most moving. Still in tears.

I'll decide once I'm near death.

I, too, appreciate this topic, something we do not often get to discuss.

My father was 94 when he died of congestive heart failure, at home on morphine, with 3 of my sisters around him. That weekend I had made a commitment to be in Honolulu babysitting my 3 month old grandson. My DIL , his mother, was breast feeding and so the baby was with her while she attended a conference there. They had purchased my ticket to fly there and my son was at home with their other 2 children.

I had visited my father, and brought dinner for everyone, right before I left so I was able to say good-bye although I didn't expect him to die while I was gone (denial?).

My mother died in the hospital of a massive stroke. She lingered on life support for about 3 or 4 days and I was able to talk to her while she was comatose to tell her I loved her and that she could leave and it would be OK. I think she was lingering on so my sister in the Bay area could visit, however that didn't happen. She had many TIA's and was impaired from the strokes, could no longer talk, or walk, so it was a blessing for all concerned. She was 83 and my father was 85 and it was very difficult for him to care for her at home.

I have read that often the loved one's soul will depart the body when the family leaves the room, and patient is alone. I think it was good for me to be with the new baby b/c
of the cycle of life. My older sister told me she was traumatized being with our father as he died.

I think it’s very important to discuss all this and not hide from death or deny it.

Right off the bat, I’d like to die at home, but not if I require 24/7 care. Then put me in a hospice place where the care would be exceptional, hopefully.

I’m widowed with no children and close friends who are older than myself, so I imagine I will have a lonely death wherever I am. But that’s just the way it is.

I only wish we had the legal right in this country to chose our own time to die when we are ready and to be able to put that in our living will.
I look forward to more posts on this subject.

My first experience with at home dying was when I lived in Brasil and my brother-in-law was dying of liver cancer. My ex-husband and I lived close and were at his home days and nights before he died, as he became weaker. He died in his hammock in his bedroom, with his wife and children right there, as well as the rest of us. It was an amazing experience and, although I don't think this kind of experience could happen for me, here in the USA (at least with a hammock present), I would like to have my family with me (as many as possible) when my soul leaves this planet. My father died in the hospital, but my mother and all his children and some grandchildren were there, and my mother also died in the ICU, but my sisters and I were by her bedside when she breathed her last. I guess I want to feel LOVE as I leave this world!

Both my parents died at home during the 1990s -- mostly because it would not have occurred to either of them to do anything but soldier on until they dropped. My father had a heart attack in the bathtub. I was holding my mother's hand when she died. She had a massive stroke and was placed on her bed by an attentive neighbor as she knew that was Mother's wish -- I got there ASAP and sat with her for about 2 days.

My friends were surprised to learn they had died at home -- it was still a time of expected hospital deaths I think.

I would hope to die at home, with hospice help for my caring partner if possible. But who knows, she could go first, though that's not my picture as I'm a little older. But what will be will be.

So much to consider, but I am working on my plans. As a widow, with 3 boys who live on the other coast at the moment, I am likely to be alone. Looking into my options which I am glad to have. Having experienced the death of my husband from cancer at home with Hospice, and my dad in a Hospice facility, I realize not all areas have the same options. Some areas don't seem to have enough facilities available. My mom died in a Skilled Nursing Facility/rehab after a fall. I could not take care of her at home or I would have done that. we never really talked much about what she wanted, but she and dad had funeral arrangements prepaid with the funeral home which made things much easier for me. I did take her ashes to PA where dad's were buried a few years earlier. Now, to figure out more of my plans, and glad to know what others have done.

My mother died in a nursing home, having had dementia for many years and, at the end, 20 days in a coma. During those last days lots of family members visited for several hours every day. We reminisced aloud in hopes she could hear us. Although we never saw a sign that she did, it was comforting to all of us to talk about happy times in her presence.

My father died just a few weeks later. He hung on long enough to celebrate his 90th birthday, then one week after his party, he joined my mother. He had been living at home, but on the night of his death was in the hospital being treated for congestive heart failure. None of us - family or hospital staff - realized he was so near death and we weren't present when he died.

My brother was diagnosed with stage 4 colon cancer just 2 years later at age 47. He was much too young to die and fought the disease with every available treatment, including some that were clearly bogus. He remained in denial to the last. He was in the hospital by choice, believing irrationally that he was healing. He was actually in a hospice unit, but we (family and hospital staff) knew better than to mention the word hospice in his presence. When I visited him on the last evening of his life, he asked me to write his goals for the future on the white board in his room. He had been experiencing periods of an altered state of consciousness which he interpreted as supernatural healing. He died at midnight. There was no family present, but there was a wonderfully kind hospice worker with him that night, masquerading as an Aide, keeping him company and avoiding any mention of death.

Just last year a cousin died pancreatic cancer. He chose to die at home, with hospice care. But hospice alone wasn't enough. He and his wife couldn't afford 24/7 caregiving. His hour-to-hour care overwhelmed his wife. He was in pain from the cancer and uncomfortable in his bed, being much too large to be re-positioned by his wife. Even the part-time caregiver couldn't move him without help. I visited often to offer moral support to his wife, but couldn't offer much in the way of direct care to him. It was a very stressful situation. On his last day he was screaming with pain and when the hospice nurse arrived, she administered a dose of morphine that quieted him. He died a few hours later.

So the upshot of all this is, I don't want to die at home unless I'm sure there will be adequate care so that i won't be a burden to my loved ones and won't be in pain.

Sorry for this downer of a post. Despite all this, I don't find this conversation at all morbid. These things need to be shared openly and honestly. Many of us will be able to choose where we die and we need to understand the realities.

I would like to die by the sea as if I were just relaxing on the beach. My ashes will go to the sea, at the same place my beloved son's ashes were dispersed.
I don't romanticize about it: I might even die in a plane crash since I travel a lot:-)

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