My mother had terminal cancer and chose to forego chemo and spend her final year at home. While some memories of her passing still haunt me, what I remember most is spending my last months with her in our family home where I grew up, where she was serene and dignified, rather than her pain and discomfort being extended for a few more months in a ward filled with machines and strangers in a state of half awareness.

It was a honestly a beautiful gift she gave us in her death. Uncomplicated and emotionally very "real", if that makes sense.

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Really can't stand that article title as a hospice worker. That is not end-of-life care. It's last ditch treatment. What I do is end-of-life care and is actually beneficial and far from useless. I wish more people would honestly get on hospice sooner so we can help patients and families prepare themselves more for death.

There was a very long documentary, "Near Death", by Fred Wiseman in the 1980s that followed a few patients through an ICU and after. (Some lived, some died, mostly you couldn't guess which). One statistic he quoted: the USA spent half its entire medical budget on people in their last three weeks of life.

Make sure you have advance directives in place if you don’t want family members, doctors and possibly lawyers who don’t know your wishes making medical decisions for you.

I read somewhere that physicians and their families routinely opt out of long shot treatment options as they near the end of their lives. Doctors know better than most people how futile and uncomfortable some of these desperate measures are.

One thing missing from these posts about end of life care and people just wanting to die at home is that people start to lose the ability to care for themselves. Often their loved ones aren't able to care for them either.

In a society where children don't inhabit the household of their parents the only option is for the elderly to go to a care facility. This is just the reality of our culture.

ICU nurse here. In my experience medical professionals generally do a pretty good job of letting family know when it's time to switch to comfort measures. The reality is most people don't want to lose their loved one without having 'tried everything'.

It's easy to try and place blame, but this could be helped through public education. People should know what the dying process looks like and be prepared for it.

Other than maybe that one guy, no one is making it out of here alive. Let's all try to make it as nice as we can.

Researchers from Rutgers and other universities have developed a behavioral model that explains a long-standing healthcare mystery: Why do so many terminally ill patients undergo intense last-ditch treatments with little chance of meaningful life extension?

Surveys repeatedly indicate that nearly all people would rather die peacefully at home, yet painful, long-shot treatments remain common, and efforts to reduce usage have failed.

Previous analyses have mostly emphasized patients’ treatment preferences at the end of life. The new model, which its creators named the Transtheoretical Model of Irrational Biomedical Exuberance (TRIBE), focuses squarely on clinician psychology and family dynamics.

“Old models tended to assume that clinicians were purely rational agents, leading patients toward logical choices,” said Paul R. Duberstein, lead author of the study and chair of the Department of Health Behavior, Society and Policy at the Rutgers School of Public Health. “Once doctors have recommended a treatment or procedure, there’s enormous pressure on patients to undergo it.”

https://www.sciencedirect.com/science/article/abs/pii/S0277953622008528#ack0010

My Dad was 91. He had experienced a dizziness spell in the summer, but otherwise was mentally alert, very involved in a number of social activities. However, he didn't trust doctors and attributed the dizziness to a steroid for a sore shoulder. He didn't follow up. We kept telling him to see a doctor. A couple months later, he suddenly had severe shortness of breath and went to the ER. My brother joined him, and after the ER doctor asked, Dad said to perform any life-saving interventions necessary. I arrived later that day.

Well, it turns out that he had a major heart valve that was not opening completely, leading to vastly reduced blood flow. He had lung blood clots. His liver was non-functional and his kidneys were shutting down.

They took him to the ICU to get ready for a heart valve replacement, but the dye necessary to perform the procedure would cause his kidneys to fail. He was also suffering from congestive heart failure, with fluid buildup around his lungs. They needed to give him fluids to try to restore kidney function, but a diuretic to reduce the fluid build up. He was suffering from air hunger so he was mildly sedated. He would not eat.

He had a living will, so finally the ICU nurse, a hospice nurse, a hospice doctor all met with me and my brother. We asked to move him into hospice. We couldn't take him home because at the rate he was declining, we couldn't get the care, bed, oxygen, etc set up quickly. He was quickly moved to hospice.

He had a quiet room with a view of the water in the area he had grown up in. He had just a catheter, oxygen and a line for the morphine to ease the struggle to breathe. They shaved him, cleaned up, combed his hair and made him comfortable. He was always impeccably groomed so I know he would have approved. He hadn't been conscious for a couple days, but was resting quietly.

It was Thanksgiving day as my brother and I sat with him. Since he was no longer able to object (he was a proud and strong man), I had some friends come to say their good-byes. As we left, I said goodbye and that I loved him and would be back tomorrow. Shortly after midnight, the hospice nurse called and he had quietly passed away. I drove, picked up his stuff, held his hand and said I would miss him and left. I was kind of numb, but he had passed without pain

Did I have second thoughts? Of course, I did. Maybe we could have done the procedure and then gone onto dialysis. Maybe the fluid buildup and clots would have resolved with a restored blood flow. Did we give up too soon? Should we have tried to move him home? He was no longer conscious when we made the decision to withdraw treatment. Would he have approved? He opened his eyes for a bit that final afternoon at hospice, his mouth was no longer slack and he just looked out at the riverscape and said nothing. Was he aware, was he upset? I talked to him, but got no response. Should I have stayed that evening so family was there when he passed? I just don't know. He was not in pain, and I know that he went peacefully.

Hard as it was, I believe it was the right thing. His body had failed and marvelous as our medical technology is, sometimes a person is just too broken. The nurses, techs, housekeepers, and doctors were compassionate, friendly, cheerful, kept us informed and, without pressure, helped us make the decision. I glad we worked as a team to give Dad the best care possible.

Why this long testimony? Maybe I can help you with your choice when a loved reaches the end of their days. Talk with the medical professionals, become informed, . Because we should never treat life casually, not just giving up on people and saying "pull the plug!!!", but neither should we try to cling to them, hurting them in the process. It should never be an easy decision, but it must be made with compassion.

I have already told my family that I do not want to suffer so they have a minute chance of me recovering, and I vowed to try my best to separate my emotions from it if they ever find themselves in the same situation and I have to make the call. While I would be devastated to lose them, I'd rather they go out on their own terms and comfortable than to die in a hospital bed, suffering.

When my dad was in an ICU for months, the doctor kept telling my mother there was a chance he'd recover. The doctor finally admitted it was hopeless. My mother told him to shut down the life support and "Let God decide." It was time.

In America, where litigation is king, fear of a malpractice suit for failing to exhaust all options is probably a factor. The expense of fighting off even a clearly frivolous suit is daunting.

This article is a very good one

https://www.newyorker.com/magazine/2010/08/02/letting-go-2

My father and my mother-in-law both opted for home hospice. My father had made arrangements with my brother in the years before his decline. He settled out his affairs and put properties and assets in trust. He and my mother also purchased a package from the Trident Society to take care of their remains and certain of the paperwork for us.

Prolonging suffering in family members seems to occur most often in uneducated families in my experience. We try and explain the statistics, the likely outcome, but for some reason family members always think paw paw “is a fighter” and “miracles happen” so their neurologically devastated family member will DEFINITELY pull through this unscathed.

I am a hematologist in Sweden and there is no denying many patients are treated too long. Number 1 reason is usually that the patient wishes it. However, this is mostly a consequence that the patient overestimates the benefits of a late chemo course or underestimates the side effects. Fear of dying and wishes of the relatives also contribute. Unfortunately, for many physicians it is easier to offer another treatment than having a difficult conversation about dying

Recently read a very thorough treatment of this subject titled "Being Mortal" and I strongly recommend it to anyone who is expecting to be involved in these kinds of decisions with themselves or a family member.

I agree that the culture around end of life care needs to change towards acceptance of the inevitable. I can understand why researchers would want to explore the role of physicians in driving end of life care, but this is a situation where when you start to measure something, it changes. Just because they are measuring physician's impact does not mean it is the major contributing factor.

My observation of physicians post-COVID is that they are less willing to advocate for more end-of-life care when the patient is unwilling to help themselves.

I think Americans at large, more than physicians, need to change how they view death and dying. Physicians egos are not the reason we spend more on end-of-life care than any other country.

I’m glad I live in Victoria where e we have voluntary assisted dying laws that are governed by strict criteria. That allow terminally ill people to die at home or in care at a time of their choosing and with the people that they love. There are still some legislative obstacles to be removed but it does work.

It's a shame that death with dignity is outlawed by zealots.

ED doc here. So often I see patients that have no chance of long term survival, might die in a day, might die in a week or a month. I am always clear with the family that what is best for the person is comfort and nothing aggressive. 9 times out of 10 the family chooses to make the patient full code no matter how much I emphasize the definite lack of any future quality of life. So often a patient will come in with paperwork indicating that they are DNR and family will show up and make them full code anyways. It’s entirely depressing to see

My dad died of ALS. He spent his time at home, and through Hospice, he was able to choose the day he gave up living. We were able to have family and friends the day he chose to remove the trach.

I was able to care for him for 6 months before he passed, by recreating an ICU room in his home. I gave him what he gave me, love, respect, and the care he deserved.

This wasn't how it would have been in a hospital. We should have the choice when a terrible illness or disease takes our lives, slowly and painfully.

I cared for my mother in the last five years of her terminal battle with Parkinson’s, and for my father-in-law in his 14 year battle with kidney failure and Lewy body dementia. Both died at home in hospice care. Looking back, my mother probably should have died about a year earlier than she did, and my father-in-law, perhaps as much as a decade earlier. But hindsight is always 20/20. It is only possible for me to see how their life was extended now that it is over.

Up until the week both of them died, everybody involved, doctors included, believed they both had months to years to live. Thar the extension of their lives passed a point that many 3rd party observers would call reasonable suffering was partially due to them and their desire to keep living. They didn’t believe that limited mobility or diets mainly of ice cream was considered suffering. As their worlds and capacities diminished, so did their standards and expectations, meaning they still believe they lived a pretty good life until the end.

I also observed that once the family broached the hospice topic, doctors were enthusiastic and supportive. The doctors were reluctant to bring it up on their own. I can only guess this was because of a fear of upsetting the family and the patients, and perhaps a perception of malpractice.

Both were very frail with limited faculties at the end. It was clear when both of them died that it was time. If they had died sooner of sudden natural causes or chosen assisted suicide, my grief would probably be different. I remember them both as sick and suffering, so the pain of them passing was very much diminished. If my memories of them stopped abruptly when they were in their prime, I expect I would have stronger and different grief.

Options to extend life can bring pain and suffering, but also hope to the patients. Options to end life sooner can bring pain and suffering but also hope to the family members and other survivors, albeit usually in different ways.

This problem persists because it is truly a difficult problem.

Absolutely agree 1000%. The medical profession in the US is a gigantic and elaborate Ponzi scheme. I've heard of people hiring a hitman or ordering poison on the Dark Web just to avoid a slow lingering and expensive death leaving their families with nothing but debt. Heroes like Kevorkian deserve to be celebrated for preserving human dignity and not villified. I've printed and posted copies of certain pamphlets to folks before.

After my stepmother slowly going down hill at home, my dad finally convinced her to go to the ER. She had so many problems and complications, they kept her alive for 6 months in various hospitals until she finally passed away, after being hooked up to every machine possible. My poor dad was trying to keep her alive, but the doctors kept telling him it was time to let her go. They were together for almost 40 years. About a year and a half after, my dad started losing weight and had problems getting around the house for 4 months. I kept telling him that he needed to go and get medical help. He knew he was slowly dying, and passed away at home alone. After everything he went thru with his wife, I could see why he hated hospitals. I hope when it's my time, it's at home surrounded by loved ones and pets, maybe watching cartoons on TV.

I did a research study a couple decades ago, with frail elderly homebound individuals-about 3/4 definitely stated they wanted to die at home and didn’t want to go to the hospital for a bunch of interventions. At the time, among those folks, only about a third of those expressing a desire to die at home had documented advance directives, so it took all of about 10 minutes to have that conversation, offer to help them fill out an AD if they wanted one, and get it filled out, signed, and witnessed. After 6-12 months we did a follow up on anyone who had died to asses their place of death. 90% of deaths among those with an AD died at home (n=18) while 100% of those without an AD (n=2) died in the hospital. We didn’t do a cost analysis, but prior to our convo to ask if they wanted help to fill one out, had the same people died, it would likely have been n=6 dying at home and n=14 dying in the hospital. DEFINITELY a higher price tag, and not even what most of them wanted!

Grandma should NEVER feel OBLIGATED to die, but when you talk to seniors they are usually pretty clear and what they want and what they don’t want-and I think we should listen to them!

I live with a long-term chronic illness and worked as a nurse for 25 years. I talked with my husband and son about my end of life wishes. My husband and I had a lawyer prepare our advance directives. Give a copy to your PCP and the hospital you use. The best thing you can do for family and friends is take the decision out of their hands. Some states allow reversal of your wishes, but I never saw that done. We choose Death with Dignity

It is going to be hard to make the changes they are driving at in the US when one party will stand up and scream "death panels" when you try to discuss it.

Hospitalist here - I do a lot of End of Life care. The authors here seem to have developed a theoretical model to describe presupposed behavior but this isn't presenting evidence regarding the percentage of patients who are pushed to prolong life and for what reasons.

In my experience (in the US) there are some conditions (i.e. advanced metastatic cancer) where it's pretty clear if a patient is nearing the end of their life, and more often than not the oncologist is on board with not offering any further cancer-directed therapy at that point. I'm seeing patients admitted to the hospital so it's a good time to discuss goals and maybe reframe their options and lots of times we send folks home with hospice or approaching that course.

But a lot of times both patients and families want to try as much treatment as they can. I give my honest assessment but as long as the patient is making informed decisions and is getting the care they want I don't feel too bad about it. The issues come in when a patient is unable to make decisions for themselves and family is pushing for a lot of treatment that the patient might not want. That is when you really need to have tough discussions, but honestly that doesn't happen all the time.

Well either the Hospital gets the money in your insurance or the insurance company keeps it.

You don't matter anymore, you're about to die, this is about who gets to keep all that money you had to pay but didn't really use, not your family, which company with a CEO gets it, the Insurance can't declare you dead, but the hospital can justify torturing you for 3 more months to squeeze the last bit of juice out of you.

MONEY!!!!!

It's an American symptom

Hard to beat hope with something as flimsy as science. Especially when death is the cost.

The last year of my grandpa’s life, he had a stint in the hospital where he nearly died due to heart failure, and all the related issues it causes (low oxygen, fluid buildup in his legs, etc.)

After some intense intervention & a week’s stay, he barely made it out of the hospital. He then spent a year at home miserable, in constant pain, barely aware of what was going on. He spent all day & night sitting in the same recliner chair, “watching” TV, and was barely able to stand or walk a few steps. It was heartbreaking to see him & know how much he was suffering, he was an empty shell for most of that time.

I think the people who want to try any and all measures to prolong someone’s end-of-life, don’t realize how much suffering they could be putting that person through. Expecting an 85-90 year old person to leave the hospital after CPR, intubation, etc. and go back to a normal life is crazy or just completely naive.

Seeing that taught me a lot about the realities of end-of-life, and I hope that mine will be easier.

Lots of people talk the talk, but when it's time to walk the walk, i bet most people would not have it in them to make the call and abandon this life.

I wonder how much life expectancy would fall, if they changed this approach?

With aging Boomers, there really should be a public campaign promoting adults and their parents discussing what the parents want for their end of life care and getting the appropriate legal documents. It's irresponsible for an adult to go into their senior years without a plan on what they want in the event they get dementia or something like that.

I needed to see this. I lost both my parents over the last several years. Losing mom was the harder one. I still feel guilt that we didn’t force the doctors to keep fighting for her.. they said the risk wasn’t worth it.. Or if we had lined something up with the Mayo Clinic.. At this point what’s done is done.. still not sure but I know it wasn’t easy letting go. She was in hospice care at home with her family as she slowly let go. She needed a kidney/liver transplant- just wasn’t meant to be. All you can do sometimes is pick up the broken pieces and make a life out of it

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Where’s the money in letting someone die? Experience in end of life care, so I know. The businesses are designed to suck your accounts dry harder than just trying to be an adult.

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###If hospitals and third-party providers can find a way to monetize it and reach an equalized profit level of what they receive in hospital…

It is always driven my revenue.

As an AI how to monetize it more optimally.

Or you know, human professionals.

Perhaps more important, from a policy standpoint, this phenomenon is a huge contributor to health care costs.

well let's not gloss over the capitalist angle where hospitals are chafing millions of dollars for treatments and hundreds of thousands for the room.

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Gotta squeeze every possible dime out of you

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From the comments I’m reading, you’re all trying to explain something that can not be explained, only learned through experience.

I lost my mom a few weeks ago in a matter of 24h. I would do anything to go back and send her to the hospital a day before, just so that she could endure a life-saving procedure to live a few more years, even if with some discomfort. Why? Because of how I lived the situation.

It’s a matter of perspective. You can’t teach what’s RIGHT or WRONG, because no one knows that, we can only say that we feel in a certain way because of our past experiences.

I totally understand this om one hand, but don't expect doctors to adopt this. Their job is saves lives, end of story, not help people take the easy way out. Can't fault them for that, even if it doesn't work.

Say his name. SAY HIS NAME

On the other hand you have doctors and insurance companies trying to force disabled people to sign DNR's against their will. Respecting body autonomy, providing dignified care and making people comfortable should be the number one thing taught at medical school IMO.

Dying at home isn't profitable for hospitals. How is a proper capitalist hospital going to increase revenue and stock value if people just refuse useless, super-expensive treatments and accept the inevitable? That's socialist talk.

America is a capitalist nation, god dammit! Profit is god!

I’ve read many of these comments and have witnessed several family deaths. But do you know who wants to live to be 99 years old?
98 year olds.

Useless depends on your values.

I love life. And to me pain is just a signal my brain generates to indicate damage and alert me about it. Avoiding pain is not a priority compared to staying alive. To me even the smallest chance would be worth enduring pain. Even 0.000001% or smaller as long as it's not literally 0% and it never is literally 0%.

Think about it this way: If people hadn’t gone for yesterday’s long-shot treatments, today’s standard treatments for geriatric illnesses would not have become the known-safe standards they are today. We owe it to future generations to continue to try long-shot medical treatments.