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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

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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.

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

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’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.

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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.

Definitely something everyone should have in place. Just know that if a patient is incapacitated, the family can override advanced directives. It’s also good to speak with your spouse or next of kin and let them know what your wishes would be. You can legally designate a health care power of attorney to make decisions if you trust someone more than your next of kin. And do all way before you need it.

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.

If you want to waste your own money on that stuff fine, but it shouldn't be covered by insurance.

Part of that noise though DOES come from doctors. When my mother died from endometrial cancer, she had just begun a third chemo regiment that she reacted extremely badly to. She choose to just stop all treatment and wait for the end. Her hematologist/oncologist was practically begging her to try a slightly different treatment and not give up. My father had to basically escort him from the hospital room and instruct staff that he was no longer her caregiver and he was not to order treatment.

And we need physician assisted suicide. A family member recently died from COPD. She basically slowly suffocated to death over several months. Fortunately, I wasn't there to witness it but I got a lot of details about the oxygen deprivation panics,her wasting away from not eating, etc. It's one of the worst things I've ever heard. I don't know that she would have gone out on her own terms but she should have had the option to do it in a dignified and peaceful way.

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.

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.

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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.

ICU RN…. We also wish people would go on hospice sooner! Unfortunately, it almost always comes down to patient and family decisions. Some families have a very difficult time accepting end of life news.

A patient can be 95 with a very low quality of life and families will insist on keeping them alive as along as possible.

Totally agreed with the 3rd paragraph. Though I think “suicide” should be taken out of the terminology. I’m a hospice RN Case Manager in the southern US and a lot of people in these parts will call it “physician assisted suicide” with quite a negative connotation because suicide is sinful/blasphemy/whatever nonsense. Physician Assisted Death, or Death with Dignity might take away some of the stigma surrounding the practice.

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.

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I see where you’re coming from bc many doctors and hospitals benefit directly from continued treatments in prolonging illness as opposed to curing it (bringing it to an end.) But as a nurse, I mainly see patients’ families being the reason people are either not passing peacefully at home or ultimately drawing treatment out to the point that they choose hospice at the very last minute. I see so many people in their 90’s being “full codes” (wanting all life-saving measures taken in the event of their heart stopping or they quit breathing.) And these patients didn’t just turn 96, having been active in their community and at home, and then overnight they became sick. You find out they’ve been on a steep decline for some time and it’s worse when you discover they live in a facility of some kind. I’m baffled at how many family members just refuse to acknowledge the elephant in the room and you have to bear witness to their sad and pitiful withering away. They don’t eat, they don’t get out of bed, sometimes there are bed sores, and the amount of medications they are on is insane. It’s not “pointless” in keeping some of these patients alive longer than necessary. But the refusal to accept the inevitable is astounding. No one wants to lose a loved one. But all it takes is some therapy and some introspection to set one’s feelings aside and focus on the quality/quantity of life left for their loved one.

My post above describes exactly that. I’m an ICU RN as well and I shudder at every 90+ patient I get when it’s clear they’ve been declining for a very long time and they are “full codes.” And the family just can’t shut up about how Mom or Dad is gonna be right as rain in no time. Or acting as if a potassium/BUN/Cr level normalizing is gonna be the moment they’re back to their old selves. Like at what point will they realize that old age is the one illness none of us can survive?

I so wanted this for my little sister when she was dying of breast cancer at 46. She deserved to be home with her children.

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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.

Even that leaves a lot of grey area. There is a pretty wide gap between 'you're dying right now' and ' you had an incident that we can treat but if we don't you will eventually die due to complications from this'.

This is privileged advice, but the best is having someone very close that you have spoken with about end of life issues and also emergency care issues. I.E. you will live but you will have to have a trach/feeding tube/wheelchair for the rest of your life, treat or not?

In Canada we call it MAID- medical assistance in dying. There still is some stigma, but this phrasing has seemed to make it a bit more palatable

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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.

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.

A relative was under hospice care and collapsed at a doctor’s office. He ended up in the ER. There was an argument going on between us and the ER staff when the hospice nurse arrived. She sprinkled her magic fairy dust over all of us, stopped them from intubating him, got him pain relief, and into a comfy room where he passed away peacefully a few hours later. To us, hospice was the best care possible.

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I’m sorry for your loss. My dad passed in a similar way. Didn’t want chemo or invasive surgery that had a low chance of working. Just wanted to die the way he wanted. He decided on a date my mom and I were with him and he drank a cup of drugs chased it with some apple juice and went to sleep. It was hard and I’ll miss him as long as I’m alive, but I’m thankful his death was without pain and Oregon gives people options.

Especially if you know your family members will disregard your wishes.

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 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

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

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.

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%.

What is there to prepare for and what are the consequences of not preparing?

I rather die fighting to live no matter how low the odds are. I may know that in all likelihood I will still die or that barring a miracle I will die but I'd rather take even the smallest chance if it's available.

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I am sorry for your loss too.

Decide what you consider “living”. For me and my family, living in a long term care with a tracheostomy and feeding tube unable to get out of bed and 100% dependent on caregivers is not actually “living”. It’s a very prolonged death that’s also very physically uncomfortable.

It is a very large, very grey area.

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.

This is true. It’s something like 80% of the public wants “everything possible” done to sustain life.

80% of physicians (and likely most nurses from personal experience) want only noninvasive treatment measures to sustain life.

It’s why I’m a huge proponent of getting palliative care consults. It is focused on quality of life and has better outcomes in both disease remission and end of life care. It is wildly underutilized and underfunded as a resource.

If I can think, or even just dream I want to be alive. I have a very vivid imagination and can entertain myself.

I'm not saying that other people's preferences are invalid, but people speak as if my preference to try everything is somehow invalid. There is this implicit assumption in today's culture that if you value anything other than net pleasure/pain you're in the wrong. I value being able to do things (including thinking, visualizing, and dreaming) over being able to do nothing, even if the things I can do are limited.

I wouldn't want to be in a state where I can't do anything at all, even thinking or dream but supposing the chance of recovery were nonzero, even the smallest of chances I would rather be kept alive just in case. That includes factoring in the possibility of new discoveries in medical technology that might be able to help.

EDIT: Also you didn't answer my question. What is there to prepare for when it comes to death and what are the consequences of not preparing?

Yes I’m an ICU nurse and this is the most difficult part of our jobs. I love my job but I hate working an assignment where I am truly just torturing an intubated 90 year old who has no hope of meaningful recovery and is spending their last days, their last memories, with me turning them q2 and assaulting their mouth with q4 oral care. We just extubated a 90 year old who lasted 5 days on the floor and is now back after aspirating and coding. She’s re-intubated and the daughter is STILL saying if she was successfully extubated once it can happen again. But only lasting 5 days before having to be reintubated d/t a lack of airway protection doesn’t seem successful in my mind.

I’d like to take a moment to address your first sentence. Whose going to determine what treatments are worth performing and being covered by insurance and what ones aren’t? At what point should the cutoff occur? Is a 20% chance of success too low? 30% 40%? Where is the line where it’s no longer acceptable to try and prolong someone’s life? Should it be on a sliding scale based on their age? Take of 10% for every decade over 60? Whose to say those procedures won’t extend that persons life by a decent margin? They’re long shots not impossibilities, otherwise insurance wouldn’t cover them. Most insurance companies don’t cover experimental surgeries for instance because they aren’t proven to be effective yet. Do we really think it’s a good idea to start making it even harder for the average person to achieve the same level of care as wealthy individuals would?

The stories I have heard, advanced directives are nice to have, but they are not going to stop someone from overriding your wishes.

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My 89 YO dad had CLL and injured his spleen in a fall. He ended up at a trauma center where we had an extensive conversation with the doctor about his end of life wishes. After a few days he ended getting sepsis, became too weak to swallow, and we declined a feeding tube for him. They had a palliative team who kept him medicated until he peacefully died. There is no way he wanted to be kept alive in that state, at a certain point we all die.

As someone who cared for a friend with terminal cancer (for whom any treatment was too late), I agree with education. I knew so little about what death even looked like even though I'd lost several family members. But it's harrowing in a way, and I can understand if people don't want to be educated about it, it can be hard to stomach the knowledge.

Thank you and you too. It's really scary to watch a loved one take their livelihood in their own hands. In our modern society it can feel very unmoored, I guess, since we are so accustomed to experts and technology taking over when things get so serious that we can't completely control our fate. And yet the bravery it takes for everyone to get through that process of doing it on the person's own terms truly brings closure in a manner that other methods often struggle to.

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.

Yes, medical aid in dying is becoming the preferred term in the US medical community as well.

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

Hospitalist here. Agree.

Wish more people would decide on hospice sooner so they can get home and be with their family for as long as possible. Sometimes if they wait they miss the golden opportunity to get home and end up dying in the hospital, either as a medical patient or a hospice patient.

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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.

The UK is so behind on this, the proposal gets shot down every time it's brought up. It's appalling that terminally ill people cannot decide themselves when they want to die.

If you don't want something covered by insurance then that just means that you want poor people to not have as many options.

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My dad did this too. Truly a beautiful gift.

>and underfunded as a resource.

It's not really underfunded at all in USA but it is underutilized

If anything, I think it's going to get a nasty crackdown on reimbursement because as is, hospice care reimburses probably a lot more than the labor or medications can reasonably justify. It's using 150-year-old medications that cost pennies, administered by an RN

That's my prediction, but CMS is notoriously well-known to do the exact opposite of what needs to happen

Hospital wants you out as soon as possible 99% of the time

You don't get bonus $$$ for keeping a patient. Exact opposite in fact, you get seriously penalized by Medicare

Where is dying outlawed?

We all die. It's basically the only 100% indisputable fact observed in nature

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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.

That is the most asinine comment I have ever read. We should let insurance companies decide when someone’s life is no longer worth saving and when they will stop covering care? They already scam most patients out of money, anyone who ends up in ICU would get screwed by insurance trying to say “we aren’t covering futile services”.

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!

>death with dignity

Reading is hard.

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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.

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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.

One of my neighbours suffered like your family member but with lung cancer. He was not able to sleep a full night because of his breathing, he was refusing to eat, and the pain was terrible. He chose to take all his medicines one evening. Assisted suicide and euthanasia are illegal where we live so he made his daughter go out with her friends (she's an adult and was visiting for a week) whilst his wife was away for an evening so he could do it and they wouldn't be implicated. His wife was so sad she couldn't be with him, that he had to do it alone.

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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.

How old are you? Seems like such a young naive voew

Thanks, this is very interesting. I haven't heard before about socioemotional selectivity theory, and it is very useful for me to know. In the end I found myself reading about hippie culture to apply these ideas to it.

I hope that when my time comes I can go peacefully like that.

Say his name. SAY HIS NAME

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.

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

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My mother is currently on home hospice, with me as her caretaker. I'm dreading the day that she passes but I've started to realize how fortunate I am to be with her through this, especially knowing how nursing home life is for residents. Any tidbits of advice for staying mostly sane?

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.

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My grandmother is on this also, while I can't be there as much as I would like due to distance and kids need to stay in school, my uncle is with her full time. Growing up he was never big into religion like my grandparents/his parents were but it seems he's found some comfort in it. The local chaplain comes by pretty regularly, gives both of them some comfort, at least we think it does. She has dementia, not sure what kind exactly but she doesn't know hardly anyone and is not "here" most of the time. Other family and friends seems to help him, that and finding a hobby you can do at home, he reads a lot and we talk about games like Monkey Island a lot too.

###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.

And people are eligible for up to six months of hospice under CMS, but in general only receive a week or less. It's a tragedy fueled by misunderstanding of what hospice really is

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.

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.

We already let them decide what care they cover within certain regulations.

And if they are futile it won't matter, the hospital won't be collecting anything

No, I just want reasonability in the process so I'm not paying ridiculous premiums so people can throw hundreds of thousands of dollars at a losing cause just because of some misguided belief that everyone moment of life is worth fighting for.

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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.

Monkey Island!!! Nostalgia for the win.

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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!

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.

I call it “Kitchen sink medicine” as an ICU Pharm

Well that’s half the issue with healthcare is that insurance dictates what care patients get and that’s not how it should work. What really needs to change is that patient’s advance directives should be followed according to their wishes and we shouldn’t let family member’s wishes supersede those of the patient when they no longer have capacity to make decisions. A lot of families that will continue life sustaining measures when the patient clearly wrote they did not want it in their advance directive or they never had one.

My 2c- Watching a loved one die really sucks no matter what, and it's stressful and very emotionally painful in a way that you just can't escape. Every day it gets closer and closer and you don't really get that "I'll feel fine in the morning" effect. That said, you really have to go easy on yourself and just accept your feelings without being guilty about them or wondering if they're appropriate in the moment.

It's also super easy to make everything about the person dying, since it kind of is, but that's a lot of pressure on them. On the other hand some people deal with stress by making everything about themselves, which is also something you have to avoid. In the end I found it best to treat it a bit like meditation- you accept emotions, situations, thoughts as they come, and you don't grasp too hard on any one thing out of fear or desperation. I found that helped put me in the moment and ultimately feel like I made the time worth it.

I appreciate that you give it to them straight. This is the type of care all people should have access to. If I get diagnosed with dementia, ALS, or terminal cancer let me know ASAP. So I can make appropriate arrangements to be able to travel to a state/ country that allows some sort of end of life care. I’ve watched my mother and both my grandmothers suffer and pass from dementia it’s a a hell of a way to go and so much suffering we are nicer to our animals. I also watched my grandfather pass from ALS and I have an aunt suffering with Parkinson’s. I have no wish to even fight any of these diseases and I’d never want my children to see me suffer or feel like they would have to put their life on hold to take care of me. Each individual person holds the right to know what they can and cannot handle in terms of suffering or fighting a disease. The choice should always be left up to the patient and to have a doctor they can turn to for good counsel. I honestly don’t know how someone in your profession unwinds at the end of the day. I’d be a ball of fried nerves if that was my day to day job.

Absolutely agree

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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

The 'dignity' term is controversial also for a few reasons. Medically assisted dying is the most neutral term.

Gotta squeeze every possible dime out of you

After working in health care I now have a very detailed living will and POA and everyone close to me knows my wishes. I have seen the horrors and torture families put their loved ones through. No thanks.

Yep and then unless you have Medicaid your room abs board is not covered. Often leaves family and patients with no options.

But “god” already decided a long time ago

Yep these conversations take so much time and providers just do not have it.

“We believe in miracles”. Your family member has zero quality of live, is brain damaged, can’t breath on their own, has tubes stuck in them, can’t eat but yeah let’s keep waiting on that miracle

Insurance dictates how much money is given to the hospital based on a diagnostic code. For example pneumonia is 2.9 days so the hospital gets that amount of money if the patient is admitted for 2 days or 20. Also, insurances do not cover 30 day readmits. So it’s not really the hospital. They make money on surgeries

Extremely depressing. People don’t understand how much pain and suffering happens because of futile measures to keep ppl alive. Also the lack of basic understanding and science. For example someone I talked to recently had a friend that had a very rare form of anal cancer. No one has ever survived with this cancer but her friend was determined. People don’t understand it’s not just the primary type of cancer you have but what stage it is that makes it incurable.

Dying at a hospital isn’t profitable either… hospitals do not want to keep you there to do.

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People should get all the facts, and then THEY should make their own minds up, and insurance should have to cough up the money. Damn thieving insurance companies should be terminated and replaced with universal health care like every other developed country.

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Yep. And it’s amazing how many families have a 98 year old “They were doing fine!” Who hit their head and all of a sudden you need to have an intubation conversation while they herniate because they deferred the end of life chat until the literal end of life. This is a huge problem, although much better than it used to be. ER doc in PNW.

"prolonging your life shouldn't be covered by insurance but euthanasia should be because staying alive is a waste of money."

Yeah, as someone who has had family members use physician assisted suicide and fully supports it, shut up please. You've got no business making calls like that. :-/

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Just call it humane euthanasia. We do it to dogs and cats at their end. Because we love them and don’t want to them to suffer. Why not also for human? Being able to choose your end is hell of a lot better than letting it come for you.

I would simply like to know if you are even 35. When I was young, I felt the same way, but chronic pain changes your brain. It changes how you see the world. If all that is left of my life is pain, suffering, and helplessness, then my life is over. I have been over 35 as long as I was under 35.

Horse manure. I don't owe anyone pain and suffering. You want to be a lab rat for science then by all means, you should be free to do so. My death is more personal than my birth, and I will NOT be manipulated into prolonged suffering.

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

Of course actually dying isn't profitable. What is profitable is extraordinary, highly expensive treatments to prolong life. THAT is exceptionally profitable.

When those have been used up, and nothing is left that could work, or all the money is gone, then the hospital will dump you in a hospice or to home. If the money is gone, then there is no point anymore.

Insurance companies control everything.

It’s important to talk about this topic beforehand. If anything bad will happen, will we resuscitate, go to icu, operate, iv meds, feeding tube, antibiotics etcetera. It will be confronting but talking about it will be harder for the doc sometimes than for the patient. It’s a skill you can learn and useful for a lot of doctors.

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You need time to do something meaningful that you enjoy. It's easy to forget that you're important too, and have your own needs.

After your mother dies you are going to feel empty, at a loose end, as though life is now meaningless, (by my experience, you might be different,) so you need to establish interests now that will help give you a sense of personal worth, and give you something to turn to later.

Find fulfillment in some hobby you enjoy, study something you're interested in and make opportunities to regularly socialise.

MD here

I’ve done CPR on enough people to know that’s the last way I want to spend my final moments in this world, naked in a room full of strangers, broken ribs, vomiting on myself and aspirating half of it back into my lungs so that I have like a 15% chance of recovering in extreme agony to be intubated and die shortly thereafter through the same process that eventually doesn’t work.

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.

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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.

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.

My mom was a nurse for decades and is adamant I "pull the plug" if the time comes. She got all of the legal papers drawn up too. She's terrified of being put on some machine for any length of time.

If there is anything I can do (including mental actions such as thinking dreaming or imagining) even in a very limited capacity then that is better than there being nothing at all. And if I am alive but cannot do anything at all then logically it is the same as death so taking measures to try to preserve life can only be neutral or helpful, they cannot make the situation worse.

Pain and suffering are just signals in the brain that only have the value that we give them. It's an alarm saying "something is wrong". Sometimes it's faulty. Sometimes it's right but you understand and yet it continues since natural selection built it and didn't think of that (since of course natural selection does not think). Sometimes you don't understand but you are not in a position to do anything about it though caregivers or doctors may or may not be.

And then as another point some people live with chronic pain disorders but are still quite capable of getting around and still live fulfilling meaningful lives.

Meaning does not come from pain or pleasure, mere physical sensations. Meaning comes from the actions we take using what ever it is we got and the values we choose to give to things (and this valuing is itself an action). Without action there can be no meaning. Without life there can be no more action unless there is an afterlife or reincarnation but there is no hard evidence suggesting there is. Supposing there were it's unlikely to be any different in duration or in your ability to act meaningfully within it just because you live longer so you might as well try to live as long as possible.

You can disagree but it's rather arrogant to assume that everyone inevitably arrives at your way of viewing the world or that doing so is a mark of maturity. Otherwise I'd love to have a rational logical discussion of our different views without insulting each other's maturity intelligence or character.

Name checks out. DRE? Better make it three!

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I have been there and hope you are doing ok. It isn’t easy. Allow yourself to feel and cry. Try writing as much as you can- just write- it helps and can help you compartmentalize your thoughts and emotions.

If a family member is going through a long death bed I sometimes feel relief when they're finally dead. The pain is sharp and intense in that moment. But the months or dread and anticipation can really wear you out.

But physician assisted death sounds much more horrible than physician assisted suicide: it implies that the death was brought about by the physician as the primary actor, ie. it associates it with murder.

"Death with dignity" is a good teen, but it does not refer to the assistance

Focus on the small things and getting through day-to-day. Put chapstick on her. Rub her feet. Watch her favorite shows while holding her hand. Cook dinner and include her by asking her to taste test it. Finding joy in the mundane allows you to focus your energy on her living (in whatever capacity she’s capable) vs the impending loss. Much love sent to you.

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 agree on the second part but not the first. There has to be a gatekeeper if you want healthcare that's affordable. Doctors don't want to be it (understandably) and patients will abuse the hell out of it. If a patient has met their deductible/out of pocket they don't even blink an eye if a treat is $100 or $1000000. That's a big part of our cost over overruns.

In a perfect world, sure cost shouldn't determine care, but unfortunately it's something that has to be considered in the real world. If it's not the doctors and if the patients won't do it themselves, that leaves either insurance or the government.

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I worked in a nursing home for 6 months after college trying to find my career path( was trying to become a PA and needed healthcare experience and instead now I'm a therapist). But being near that much end of life or post injury rehab just taught me that I don't want life saving measures. If I'm dying let me go out peacefully and comfortably. I've had enough trauma and suffering for a life time.

But like if I get the kind of illness (dementias) where I will lose myself and my memories and have to relive my early life experiences.... I will literally not tell anyone and take myself out of the equation as peacefully as possible like the woman from an article I read who got end of life care delivered from Mexico and got to spend time with her family for a year before finally passing happy and safe.

Would you be able to share the article info please, I may need this care in the not too distant future.

>But like if I get the kind of illness (dementias) where I will lose myself and my memories and have to relive my early life experiences.... I will literally not tell anyone and take myself out of the equation as peacefully as possible like the woman from an article I read who got end of life care delivered from Mexico and got to spend time with her family for a year before finally passing happy and safe.<

Would you be able to share the article info please, in case this care in the not too distant future.

My husband and I are just starting on this after losing my father recently with an advance directive that had I don't know checked for all the standard questions and without being notarized. It was useless and I'd like to be very clear and comprehensive in ours so no one has to decide anything, it will all be there.

What I put in my living will is to have no artificial nutrition (tpn, tube feeding) if I am in a permanent altered mental status, dementia, or in a coma etc. The artificial nutrition is given wayyyy too often for no benefit to the person and it’s what keeps people alive. Also, once it is started it becomes VERY difficult for family members to take people off of it because they then feel like they are starving them and killing them. Not eating is a natural part of the death process.

I completely agree that it can be traumatizing for some people. As a provider I just want the people that aren't prepared to make decisions to walk away from making them. Alas, that is almost never the case.

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All of my replies are getting removed.

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

According to some news reports, too palatable - there are patient accounts of being pressured to sign MAID papers due to housing troubles or inability to work, for example, which is abominably unethical.

I like the way Oregon handles things: eligible patients are screened and offered a lethal prescription which they can choose to fill and use on their own terms or not. About half die naturally without using the prescription, & they and their families often say that the knowledge of chemical assistance being available/at hand creates peace of mind.

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.