I had to make the decision to stop medical intervention and start palliative care for my 92-year-old father. He had developed an infection, exacerbated by poor circulation and a reluctance to seek medical care. He was hospitalized, given massive amounts of antibiotics, and rallied it a bit. They told us he might be able to go home if he could get around on his own. He was sent to a rehab center but soon declined without the hospital's level of care and was re-hospitalized. This happened a few times, the rally was less each time. Finally, it was impossible to ignore the reality of what was happening despite the doctors' willingness to keep going. He had explicit instructions regarding end-of-life care but my mom couldn't make the decision so I had to. The hospital set up a quiet private room for him and he slipped away quietly in the night before he could be moved to hospice.
I totally understand families not wanting to give up but you have to ask "who are you doing it for, yourselves or them?"
From what I've seen, the next-of-kin sometimes agree to overtreatment due to fear of criticism from other family members. Some random cousin will make accusations of giving up too soon. This kind of dispute destroys families.
For sure. It's also hard to know what giving up too soon even is. The family making these decisions rarely have complete information about the situation, the options, the prospects, nor time to carefully consider these options.
A few years back, my partner and I made the decision to take our own child off of life support.
We knew his death was inevitable for a good long while before the decision came, and still, it was excruciating. Not because we weren't ready to let go. We knew we would never be ready, so, in some grim way, that just wasn't a factor. No, what we came to realize is that it was because we somehow didn't feel we were at liberty to do so. Legally, sure. But it seemed like everyone around us was pushing us to fight fight fight, and, even in such an extreme situation, peer pressure is one of the most powerful forces in nature.
But I also know that, when we finally did say the words, everyone on the care team took turns hugging us and reassuring us that we were making the right choice. I think, in retrospect, that it must have been terribly heartbreaking for them to watch our situation and know what we were thinking, and themselves not feel at liberty to give voice to what we all were thinking, too. We call them heroes for saving lives, and yet they are perhaps at their most heroic when they can't save a life, but still manage to go back to work the next day. Even more so now that it has become customary to remove the proverbial band-aid as slowly as possible.
I think that our only real regret is that we didn't let him go sooner, and instead stupidly, futilely let things drag out long past the point where it could do him or anyone else any good. I think about that a lot, now. And I make sure that the people who might some day have to make end of life care decisions for me know how much I think about it. Perhaps, when the time comes, it will help to fractionally reduce the amount of anguish they experience as they take care of me. I certainly hope so.
And I think that the time to talk to your loved ones about these things is now. It's comforting to think that end of life care only happens to old people, but it can happen to anyone at any age.
My dad's cancer had spread to the lungs, and one day he got pneumonia. After a day at the hospital, he'd asked the doc if he'd ever get home again if he survived the pneumonia. Unlikely, was the reply. The next day he asked them to stop the oxygen supply, and he passed away some hours later.
It was really hard losing him that abruptly, even though we knew it could happen. And at that time I was surprised they had done what he asked. I was under the impression they'd do anything to extend the life of the patient.
But at the same time I was, and still am, so grateful that he got to make that choice, and not have to suffer for months in a hospital bed before reaching the same outcome.
My father is solidly under the impression of these two statements (not judging, just presenting his perspective):
1) if you commit suicide, you go to hell
2) doing anything that knowingly will end your life (as opposed to fighting) is the same as suicide.
That being said, I know he doesn’t want to live anymore. The cancer has taken over and he’s miserable. He’s literally told me this. But the only person that could say “okay I’m gonna let my dad go” is me, and I can’t do that on my good conscious. I’m only 24 and I am afraid that if I just negligently care for him so he gets his wish outside of his own control that I will know that and live the rest of my life in pain of that. It’s a bunk situation all around
I'm really sorry to hear. That sounds really, really rough.
I fully understand your dilemma. At least for my own sake it would be important that I could live with my choices. If my dad had wanted to fight it, and had suffered as a result, well... that'd be his choice.
Take care of yourself though, and be honest with yourself. During and after, I got myself into a dark spot until I dared being honest with myself.
Wow, thank you for sharing that. Most of us don’t like to discus death and we do our absolute best to pretend like it will never happen. It really pains me to read this and I hope you and your partner find some peace.
After years of declining health my grandfather ended up with some sort of flesh eating infection. My aunt and grandmother wanted to keep fighting.
I remember being in the room with extended family and the doctor double checking that everyone wanted to stay for the discussion.
He then discussed, …in detail, how they would treat it and what his life would be like after.
The decision makers in my family quickly came to a consensus.
What I remember most is that it didn’t feel like manipulation. The way the doctor laid out the situation felt like he was informing everyone. Equipping us to understand the situation almost as well as the doctors might. I remember that making it far easier on my aunt and grandma afterwards.
One, this barely touches on the opposite side, when doctors give up too soon. When my mom had a brain tumor that had a high 5-year mortality rate but still had plenty of time left, a number of doctors we encountered either gave us premature "time to give up" speeches or were just lackadaisical about treating her symptoms. (None of those doctors were her neuro-oncologist, and my mom was a fighter who would not give up on the time left to her.) Had I and my brother not been there to push back on the medical system, we would have had months less with her. Should we minimize the suffering when there's no hope? Definitely. But not until that point unless the patient clearly chooses otherwise.
Two, I think the much bigger problem on either side is not doctor attitudes, but cultural attitudes towards death. It's something a lot of Americans avoid talking about, avoid thinking about. My mom was a fighter, but because she had run an adult foster care home with an elderly wing, she was was also a realist. She had a DNR on file and we had all talked about what we wanted years before she got sick. We knew she wanted as much of a good life as possible, and then she wanted to be done. So when the neuro-oncologist said we couldn't do any more, that was it, and we transitioned to hospice. But from what I understand, that's not the common reaction. I hear stories from friends of dying patients dragged through all sorts of unwanted treatment because the adult children of the patient are unable to deal with their emotions enough to honor the patient's wishes, tend to the patient's needs.
So I ask everybody to talk with your family about what you each want. One framework I've used is Five Wishes, which has forms you fill out and material to help a family discussion along:
This is the most important thing you can do to minimize overtreatment: talk about it with family and get something written down. That way when the doctor turns to you and asks what the patient wants, you can answer with confidence.
I think it’s also true the other way. Write down what doctors say. Far too often what doctors said and what people heard or can recall do not line up. That’s just human nature.
A physician friend of mine prints out what she is going to say in serious moments and then hands it over after the conversation. She said this was because of how many times, “in cases like this, the x year survival is y percent” being later repeated as “doctor said Z only had x years to live.”
Yes, definitely. And it shouldn't be the patient doing the writing! Having somebody less involved to take notes can be super helpful.
And yes, physicians should absolutely write things down too. Once I went in for surgery and after I woke up both the surgeon and the anesthesiologist talked with me and told me important things. Hours later, I only remembered scattered phrases, with my clearest memory being me saying I didn't think I was in shape to talk then. Happily, some of what they said was written down. But not all of it!
I'd tend to put myself into the other camp, that doctors tend to be too slow to reach for palliative care options, but your comment is thought provoking. A lot of my thoughts on this were shaped by Atul Gawande's 2014 book on the topic of end of life care and the suffering that can arise from never "giving up." Your anecdote about feeling the doctors were too quick to suggest palliative care makes me wonder if it was the exception or if the pendulum is now swinging the other way. I'd say the viewpoint of the article is pretty in line with Gawande's as well.
> Should we minimize the suffering when there's no hope? Definitely. But not until that point unless the patient clearly chooses otherwise.
There are so many things to weigh here, I can't imagine having to help other people make this choice. How do you decide when there is no hope? When literally every possibility has been exhausted? How do you decide when the hope that remains is likely outweighed by the suffering that will be endured to achieve it? What is an appropriate amount of suffering for a 1 in 4 chance of a few more good years, or a 1 in 10 chance, or a 1 in 25 chance? What is the break even point in terms of quality of life where it's better to have a gradual decline at home and then in hospice rather than spending the only months or years you have left under a battery of treatments to buy the lottery ticket that you might come out well-ish in the other side?
> other camp, that doctors tend to be too slow to reach for palliative care options
I don't see a need for camps here. Both can be true! Some people can get over-treated. Some people can get under-treated. These are both problems that we should fix.
> I can't imagine having to help other people make this choice
These are inevitably personal decisions. There are few wrong choices, and often few good ones. In my limited experience, the doctors who specialize in these sorts of thing are pretty good at helping with that choice. They explain the options, say what they can about the odds, and then let the patients and their families decide.
Which is why it's crucial that families talk about these questions before it matters. We need to understand our loved ones' preferences and views, and they need to understand ours. Because once it comes to it, at best it will be a very fraught and difficult time. And at worst, the patient may not be in any state to answer the questions.
> Atul Gawande's 2014 book on the topic of end of life care
"Being Mortal." An excellent book. We and all our loved ones will die; until you come to terms with that, you will not be able to make good decisions as the end approaches.
Yes, this stuff needs to be discussed by every family, at length, and years before stuff starts to happen. I have not heard of 5 wishes before now, but my family had health-care directives as well as power-of-attorney written up by a law firm that specializes in elder law. This was super valuable. There are also serious financial implications for families who end up with someone in a nursing home.
"End-of-life" gets really complicated and bureaucratic at one of the most stressful and challenging times for families. It's really important to plan ahead for this time, in advance, when everyone is thinking clearly and rationally.
> One, this barely touches on the opposite side, when doctors give up too soon.
This was very much my experience with my Mom’s brain tumor.
While I can’t say my Mom’s regular cancer doctors gave up too soon (we had an amazing surgeon, as well as an oncologist that helped fight until the final stand) - it was amazing how few voices actually encouraged her to fight.
She was diagnosed late stage, with. 6-month or less prognosis.
From the moment she was diagnosed, she had a literal line-up of nurses, general doctors, and social workers incessantly reminding her how poor her outlook was, and that “there’s no shame in giving up”.
Seriously, it was relentless how often they would come into her room, put on a somber voice, and say “You know the outlook on these things isn’t very long, and we don’t have good treatments for it.”
I will never forget those first few days in the hospital when she was diagnosed and awaiting surgery. The demoralized look on her face. The incongruousness of being asked to concede a battle you didn’t even know you were in until days or hours ago.
It was only a couple of acquaintances who themselves “beat the odds” that finally gave her the other perspective.
Her eventual oncologist also had the right attitude - a healthy balance of positivity and being realistic.
But that was not the norm, particularly among medical professionals. She ended up eventually passing away after about 5 years - 4.5 years longer than expected. Amazing years that we had together, yes with good days and bad days, but days we had together.
And fwiw, I did everything I could to make sure she wasn’t sticking around just for me or for family. She loved life, she wanted to fight as long as she could still enjoy life, and I cannot tell you how terribly set back she was every time she’d encounter a nurse that would look at her like she was a dead person walking, or when she’d get the “no shame in giving up” speech. But the rare voice that gave her (realistic) hope and positivity was an absolute Godsend.
There is a balance to be had here. Prolonging suffering isn’t right, but neither is the reactionary response in recent years to virtually encourage anyone with a terminal illness to immediately give up.
Thanks for sharing this. Yes, I can totally believe this.
I have all the respect in the world for people who say, "I don't want the high-treatment route; I'll enjoy what time I have left." But that was not my mom! She was a fighter all her life, and that's how she wanted to go out. I respected that too, and we never let the doctors forget who their patient was.
I'm very glad to hear that in your case the fighting paid off. That much extra time is an incredible gift, and it's wonderful you had it.
I think it’s a matter of ability to fight. At some age we all lose that ability and any fight is likely going to be brutally painful and exhausting, which just leads to more suffering.
If you get cancer and have the ability to fight, definitely do your own homework on the treatment options and what the survive-ability and lifestyle looks like. My wife had cancer in early 30s and she fought and thrived. We found the key was finding younger doctors that were more up to date on these things. Not all doctors are equal. Many doctors treat tumors and cancers how they were taught in medical school, which may have been 30+ years ago. Others keep up with the profession and advancements. We found especially with surgeons the techniques the younger folks used were advantageous. Other doctors would actually recommend doctors saying stuff like “he’s young but just studied this new technique and has 2 years of practice, he’s a rising star.” So I suppose this is a known phenomenon.
Sure. But we ought not characterize doctors as “giving up” if they come to a conclusion that it would be better for the patient to pursue a path that shortens expected life span but increases quality life span.
That is a conclusion that doctors should certainly express if it is a well-informed and well-considered one. Which is what our neuro-ongologist did at the right time.
But we had one doctor give us the "time to let go" speech because he had confused a "grade 4" astrocytoma with a generic "stage 4" cancer. He wasn't my mom's oncologist. He wasn't an ongologist at all. He was an arrogant idiot.
And then there were the doctors, also not oncologists and who had not spoken with my mom about her preferences, who did not see the point in properly treating secondary symptoms in somebody who was trying for the extra months her oncologist thought was possible. Those doctors can also go fuck themselves.
It is those doctors that I am thinking of when I talk about under-treatment.
The overmedicalization of death is a giant ethical problem that we haven’t developed the culture to healthily deal with.
If you haven’t read the book “Being Mortal”, I would highly recommend it. It addresses how to approach death from a perspective that combines existential and medical issues. It’s one of a very small set of books that should probably be required reading for all of humanity
My least favorite statistic is that roughly 50% of an individual's lifetime medical costs come in the last few weeks of life.
This is seriously problematic. Families need to learn to let go and doctors need to be more honest about outcomes. My mother was facing multiple organ failure and she was still given a feeding tube against her stated wishes and my family's protests.
The forms they make families fill out are often given too late; and don't offer an affordance of nuance.
My dad had dementia before anyone realized, and even if he had been of sound mind, the forms tend to be all or none, rather than reflecting the range of outcomes that are remotely likely.
The discussions that are suddenly forced onto family at the end of life are an extra level of pain on top of the inevitable loss.
I haven't had a chance to read the article yet but as a physician--yes we often overtreat at the end of life. I have had horrible experiences basically torturing patients with repeated invasive procedures and disease-focused treatments who have designated their decision making to a family member who is unable to accept a recommendation for hospice care from the treating physicians. In some cases this is motivated by religious beliefs that "everything must be done" to save a life no matter how much pain or suffering is causes. It's morally distressing.
There's the "everything must be done" crowds, but they're not (just) religious folks. There's also the bean counters (more tests/treatments = more revenue), and the paranoid about litigation folks who worry more that it's easier to explain action than inaction.
My grandmother went into a facility for palliative care in the last few weeks of her life. We saw all of these folks, and it was a struggle to reign them in.
There's a whole lot of really terrible behaviour that's done just because it makes someone more money or someone's job easier, and if it results in actual pain/discomfort to the patient, who cares.
I wouldn’t characterize it as “paranoid about litigation”. Lawsuits against physicians are common, and you absolutely have to consider the small but real risk of having to defend your actions in court. I’m a physician and see this play out all the time, and there’s a reason malpractice insurance is as expensive as it is.
Malpractice can be $30-$90k/year for an OB-GYN. Hospitals may cover part of this, but a private practice may not. This is a huge percentage of an OB-GYN salary, and creates negative career satisfaction across the specialty. (As if medical school debt and the residency hazing process were not enough.)
In private practice, OB's also often have to pay for their own tail insurance, which also means if they quit the practice, they have to pay malpractice insurance (basically in perpetuity) to protect against late-arriving lawsuits. This also traps physicians in their job/specialty and makes early retirement challenging.
Depends on the specialty, but roughly $500–$1500 (higher for surgeons and proceduralists; ~5% of your salary). However, if you work as an employee for a hospital or a large group practice, you don't pay for malpractice insurance directly. The institution covers it, but obviously it will indirectly impact your salary.
I would question whether extra treatments for an end of life patient is really a profitable venture for a hospital vs the opportunity cost of more lucrative elective stuff.
End of life treatments are, I assume, very profitable, because either they'll be covered by insurance, or they'll be paid by the deceased's estate. They'll probably get paid the full asking price rather than having to give a discount too.
I wouldn't argue they aren't profitable, but there is a good chance Medicare is covering it, which is substantially lower reimbursement than private insurance.
If they have a limited volume of beds, I'm sure a focus on profit would drive a private patient getting care versus an elderly Medicare patient.
I’ll counter with my own anecdote…
My BIL passed earlier this year after a life of alcohol and drug abuse led to organ failure. He made peace with his fate and was ready to go. But, the hospital placed him in a coma and on a ventilator. Then made it extremely difficult to have him moved to hospice and removed from the vent. It took days of phone calls, lawyers, and social workers to allow him to die. This caused much unnecessary stress for my wife, who was the only family member present. This was at a facility run by Floridas largest hospital group. I wonder if it was profit or their own religious affiliation that caused this? Either way, it wasn’t as simple to let a family member pass on as it should have been.
Most times when this happens its because the patient doesn't have these goals clearly documented, in my experiences hospitals are willing to follow the wishes of the patient. If the patients wishes aren't clearly documented that's when it gets tricky.
Florida's largest hospital group has a religious affiliation? Ugh. We can be crititcal of goverment-run healthcare, but at least that headache is avoided. I live across the street from the one hospital in my small city. I think there would be protest marches if it ever proclaimed a paticular religion.
Not just any religion, it’s a Seventh Day Adventist Hospital (an offshoot of the Mennonites, who believed the end of the world was predicted in the Bible). This has all sorts of weird implications; from my memory, they can’t serve caffeine on the premises. There’s a giant painting of Jesus guiding a surgeon’s hands in the front of the Orlando branch when you walk inside.
I grew up overseas. All the hospitals were technically "islamic" but the great thing about that was zero religeous paintings. There were no crosses hanging over beds, but neither was any other image. Christians felt as welcomed as anyone else. The architecture and decoration was agnostic. Even the attached mosque was basically just a square room pointing in a strange direction, and was open to all peoples.
Isn't that a direct result of the Islamic belief that man made art is offensive to God? The same reason mosques are decorated with geometric patterns and not "art".
As someone who was on the other side. I will say that these decisions are made by patients and family on a daily level, one at a time. It is hard to step back and look at a big picture and say ok today is the day when we pull the plug on the treatments.
I do agree that a final 'big picture' decision needs to be made but its hard to get that mental clarity when you are in the eye of the storm.
Also, I've personally decided to go by euthanasia after I lose my independence but I am also not clear at what point I should make that decision. I am worried that I will delay that decision and end up in a situation where I lose my faculties to make that decision.
> I am worried that I will delay that decision and end up in a situation where I lose my faculties to make that decision.
I'm concerned about that too. Broadly, the circumstances in which I'd want to get it over with painlessly are circumstances where it's hard to see what I could do about it, like if I'm immobile in a hospital bed. I want a stash of Nembutal in my medicine cabinet, that's the drug recommended by Exit International; but I can't get it. You sometimes see sellers offering it on dark markets at $600 for 10g, but typically they have zero trades and zero reputation.
Jimi Hendrix neither had alcohol or heroin when he died.
He aspirated his own vomit and died of asphyxia while intoxicated with barbiturates. Specifically, large doses of the sleeping pill Vesparax.
Opioids kill by slowing breathing, full stop. The medical term is "Opioid-induced Respiratory Depression." Narcan very rapidly reverses this, which is how it saves lives.
“ I am worried that I will delay that decision and end up in a situation where I lose my faculties to make that decision.”
Same. I have cognitive issues from m.s. and intend to move somewhere where my desire is respected. My quality of life already sucks, so I may make the decsision sooner than would normally be expected.
I feel bad for you having to deal with this stuff.
It is strange how they often cite religious beliefs, but if they firmly believe in "god" why are they always willing to go to such great lengths to prevent dying?
This is VERY unfortunate in Canada because these people cost the country a small fortune for no real reason. There was a story a while ago about an individual, 70+ and braindead, family fought and fought to keep him alive. I cant help but wonder if they had to pay, would they have continued to fight?
Health care wise Canada already heading down the drain. Trying to save few people should be the least of your worries in this department. Our fucking "servants" are doing stellar job.
I am "denigrating" our masters, not workers. And if you think we do not have huge problem in healthcare you've got your head firmly planted into the sand
We must be living in different Canadas. It is getting worse every year. And the people responsible just keep raising their own salaries. "Heckuva job (TM)" they do.
Yes, and far too much. I don’t get the doom and gloom about how the system is supposed to be collapsing though. Canadian health insurance is much better than the private insurance I had before I moved here.
Blaming just the patients and families is disingenuous. The incentives on the hospital, and doctor to overtreat are large and are an equally contributing factor.
> The doctors I know (roughly ~10 to ~15) are very much against “overtreatment”.
Well of course that's what they think. Everybody is against "overtreatment". If they aren't against a treatment, they don't consider it "overtreatment", they just consider it "treatment".
Different people have different boundaries for what they consider "overtreatment".
[2] Following Shalom’s brain death his family had discussions with the staff at Humber River Hospital. They explained that in accordance with Shalom’s and their religious beliefs, Shalom was not considered to be dead under Jewish law until he stopped breathing and his heart stopped beating. Neither had occurred because he was on ventilator life support.
The hospital board ruled he met the guidelines to be considered "dead" - the family went to court to overturn this.
No, wife is a doctor and she faced this many times. Doctors in such places are never working there for the money, if you consider them as such you are just projecting your morals on other people.
Its almost always the family - they just can't let go or have some christian type of excuse. Thus their moral weakness causes tremendous amount of suffering of their closest ones. And doctors have to obey family wishes, even if they personally wouldn't chose to, which is true for most doctors in such situations.
I've been been recently an unfortunate witness to one of the cases when its not closest family - grandmother of my wife was nearing her end, suffering tremendously. Her daughter, my mother in law who is a nurse and teaches nursing too and knows all staff of their hospital very well was looking for some strong painkillers ie morphine to help her with final sufferings, which went on about for a week. As her mom didn't want to die in hospital, nobody was willing to sign receipt, not even close personal friends (mind you we don't have opioids crisis in the country, so its not controversial to give them to 92 year old dying). Some folks from closer family or friends even said its fine to suffer before the end, to shorten/skip purgatory, or some similar religious bullshit. One of those times when I hated christianity and its believers more than ever, you know those. As they say, you will know true friends when you need them the most.
Switzerland is, as usually quite ahead on this - assisted suicide. Folks from all over the world come here to die peacefully, in full control. Ie Alain Delon is going through the process of getting this done right now. It doesn't cover all possible situations, but it gives certain control and dignity in times where most people have none left. Me personally, if facing such a situation, would do grand farewell gathering with all, sign my will and go somewhere in the nature to die quietly, ie jump from some cliff or overdose on heroin (first and last dose, but they say its quite an experience).
<<As her mom didn't want to die in hospital, nobody was willing to sign receipt, not even close personal friends (mind you we don't have opioids crisis in the country, so its not controversial to give them to 92 year old dying). Some folks from closer family or friends even said its fine to suffer before the end, to shorten/skip purgatory, or some similar religious bullshit. One of those times when I hated christianity and its believers more than ever,
I am not a religious person by anyone's description, but the choice here appears to be that of lesser evil. Final wish of a dying person ( along with their ability to govern their life ) here being that she did not want to die in a hospital. Wouldn't 'helping' her die break that wish? And more importantly, what if the dying person is ok with suffering?
<<Thus their moral weakness
It feels like the sentence is emotionally loaded. Is it a moral weakness to follow one's moral compass? I hear what you are saying, but you may want to consider that they do not want to make that decision, because their moral compass marks it as killing someone ( including some earthly jurisdictions ).
Sorry if I didn't describe it properly, english is not my native language. Giving of opium wouldn't anyhow shorten her lifespan, which was already on a fast spiral down with various organs shutting down, while causing huge amount of continuous pain, and there was nothing current medicine could do to fix it.
Her being in hospital vs being at home was just decision to not die surrounded by nurses and doctors but by family, which is completely understandable and I would opt for it too in same situation.
The fact that even closest folks refused to ease suffering while shielding themselves with at-best dubious christianity-based moral stance of easing/skipping purgatory is just beyond my comprehension.
And yes I truly consider it their moral weakness and failure. Its not about killing in any way, but sedating enough to have their last moments filled with sanity and focus on family, and not screams of huge pain.
> And more importantly, what if the dying person is ok with suffering?
Now this part is complete bullshit, of course she didn't want to suffer, she had brighter moments when she was begging for painkillers. I presume you were never in situation where you suffered huge amount of pain continuously for at least many hours. I experienced it once, and it completely utterly breaks you down mentally. You are willing to do basically anything to make it stop - there is a reason why it is/was used so much to get any intel, at one point everybody breaks, its so overwhelming that people make up anything to make it stop.
I hope its a bit more clear, it was a complex situation to describe fully in few sentences.
Maybe I misread the post above, but it sounds like no one would take her out of the hospital to die at home.
I agree that often times it is a matter of moral weakness. If the family knows what the wishes of the dying are, but are scared or unwilling to carry them out, that is a moral failing. I know many people who have gone through this, and the family often regrets their choices and weaknesses after the death. They wish that they could have been stronger and tell the doctors that they can stop treating the patient.
It is possible I misread it. If so, I would agree with your interpretation. There is a question of whether dying wish outweighs one's own moral compass ( and therefore is a moral failing ), but I accept your point especially if it is motivated by fear rather than consideration of one's principles ( I was never in that position, and hope I will never be, where I had to make that call ).
Even in socialised medicine in western europe, this phenomenon exists, where the financial side of those incentives is much reduced as funding is much less directly tied to treatments.
Hospitals and doctors are already fully booked, they don't need the additional work from overmedicating and overtreating patients in the last weeks of their lives.
Being overbooked is only the start of profitability. Just like airlines, once you have the customer inside your facility, you upsell. A patient recuperating/dieing in a bed nets only a daily rate. You need to then charge for as many additional treatments as possible.
having been on the family side of this, i can personally guarantee that the people actually performing the procedures are against it. You should draw a distinction between a hospital and its doctors.
I have always considered some of that as practice for the eventual patient who may actually be helped. All those ecmo treatments on doomed elderly covid patients is good practice for when a 12yo kid with hope of survival needs the proceedure. Over the decades, hail mary treatments at end of life (radiation/chemo etc) eventually trickled down to become practical treatments for everyone. Appendectomies were likely debated as painful end-of-life treatments by those who first attempted them.
I know this an outlier, and not related to emotional hospice decisions, etc but my mother had a heart attack in her 60s and was flatlining after they were reviving from cooling? protocol at the hospital. The doctors used defribrillators multiple times while I and siblings were in the room. The head doctor turned to us with an annoyed tone saying "look this isn't ethical to continue" when we asked if they could do anything. He then agreed to give her an adrenaline? shot, then they packed up and everyone walked out to our confusion.
She stabilized and survived, and is still here 12 years later. I appreciate what the doctors did for her, but I am very cynical about blindly trusting what overworked/numb medical workers tell us now though.
> Patients who rely heavily on their religious beliefs to cope with cancer have been shown to receive more aggressive interventions (e.g., cardiopulmonary resuscitation and ventilation) in the last week of life compared to those who rely less heavily on [Religion and spirituality] beliefs.
> The most commonly highly endorsed items (i.e., at least ‘somewhat’) were “my faith helps me to endure the suffering that comes with difficult medical treatments” (71%); “I will accept every possible medical treatment because my faith tells me to do everything I can to stay alive longer” (67%); and “I believe God could perform a miracle in curing me of cancer” (69%). Most patients (87%) reported some (‘somewhat’, ‘quite a bit’ or ‘a great deal’) endorsement of at least one of the RBEC items and a majority (62%) endorsed three or more RBEC items.
> Item-total correlations revealed high item-total correlations (>0.7) for five items and moderate correlations for the items “do not resuscitate orders are immoral due to religious beliefs” (0.48) and “I would be giving up on my faith if I stopped pursuing cancer treatment” (0.63).
You'd think they'd be pro-death and look forward to meeting them again in whatever afterlife they believe in. Or does faith falter in the face of the fragility of life?
There's a correlation between being religious and being "pro-life". Even the dimmest pro-lifer can see that it's hypocritical to insist on saving the life of a foetus that has never seen daylight, at the risk of the mother, while allowing an old, sick person to die naturally. So they are forced into an "all lives matter" posture.
>religious beliefs that "everything must be done" to save a life no matter how much pain or suffering is causes. It's morally distressing.
A life full of pain and suffering is still a life. The alternative you're offering is not something without paid and suffering, it's worse. Notexisting is worse than pain and suffering.
Far more important to come to terms with mortality than extend life indefinitely.
Is it even still living to have a heartbeat but with motor control, limited or no ability to speak, and no memory? Is “living” in this way best for the next of kin?
I found a recent episode of the Making Sense podcast in this topic to be thought provoking. You might give it a listen.
A case I recall particularly vividly was a man in his late 90s who had end stage dementia to the point that he couldn’t interact with his environment or even speak. His limbs were contracted and he was permanently in a kind of fetal position. He was fed through a tube but was still severely malnourished. He had a line of bed sores starting from his coccyx extending up to his middle thoracic spine and most of the bones and ligaments could be clearly seen. The only real signs of life were moaning when he was turned in bed. I saw him in the icu where he was being treated for these incurable bed sores and bone infections. To me it was pure torture and his poor nurse was new to the job and broke down sobbing one day after she had to turn and clean his wounds. It was terrible for all of us.
I would never want anything other than comfort care for me or my family in that situation but the families religion dictated that we continue.
All your vitality and youth eaten up on the hamster wheel to get 10 miserable years surrounded by medical equipment at the end of your life consuming the rest of your fortune.
And why exactly? to move the doomsday clock an inch closer to midnight?
Ofcourse they are. Having spent a whole lot of time in hospitals with elderly family members over the last couple years its pure madness. One doc told me its like watching farmers keep entire fields of mostly dead plants alive.
An awesome book that points out the hidden motives behind what people do: Elephant in the Brain by Robin Hanson sheds some light on this phenomenon.
It seems like one of the ways people try to show their love for others is by acting like "money is not an issue when your life is on the line" which results in a tremendous amount of spending per healthy day of life generated (poor QALY trade off).
The answer to this in my opinion is "Yes".
It is not a trivial topic, however.
We now have the technology and medicine that can extend life far beyond
what I find ethically defensible.
Assisted suicide / mercy is not legal in most places but it does
happen every day when a doctor in good conscious cannot inflict further
suffering.
My grandmother, after being in hospital for weeks, wanted to check out.
She refused to eat. The doctors gave her morphine to make it easier.
Having to go on a hunger strike to be allowed to die sounds awful
way to go.
At least in the west where I have spent most of my time we are far too
"afraid" of death.
Death is as natural as birth.
"whereas there is obviously nothing in the world over
which every man has such an indisputable right as his own
person and life” (Schopenhauer, 1851, 1974: p. 306)
One of the problems is that we think that we deserve to have everything done to save us, even if futile and families think they get the next priority in deciding what the hospitals will spend.
How does a Government/Medical Profession agree to what is considered acceptable or not acceptable without incurring the expense of legal action? It seems like the "easy" answer is to be seen to do everything you possibly could.
The article did mention, however, how the communication of the medical staff can be instrumental in coneying the graveness of the situation, although it's a lot to take in if everything has happened in the last 30 minutes and you are suddenly staring death in the face.
I can't stress this enough. Get a living will and end of life directives. Your family will do everything to keep you alive because they'll feel awful if they don't. Their guilt about not doing enough will override common sense.
I suspect that people are more likely to want their loved ones to be treated in spite of glaring suggestions toward the end of their love one’s life when they fear that death will approach within the hospital walls.
It’s likely that many people would prefer their loved one to die at home than elsewhere. Which I suppose is a natural feeling. But they then catch themselves in the dilemma of choosing between what they feel is an environment of care medically and an environment of care, well, “familial-ly”?
It’s easy to make faith or religion a target for phenomenons such as as this. But which faith (or whose, rather) are we talking here?
For anyone who hasn't already seen it, Scott Alexander's Who By Very Slow Decay [1] (2013) is a classic on the subject. Please take the trigger warning seriously.
I read this in its entirety last year and sat quietly for a long time knowing many of these observations will one day be true for me too. Its sad, depressing and really harsh truth.
I've prepared a "living will" - basically a signed directive that I don't want anyone to strive officiously to save my life, a.k.a. "Do Not Resuscitate". I gave a copy to my GP, and I sent another to my health trust. There's a copy in my desk-drawer. My kids know my intentions.
But I'm afraid that if a paramedic attends me in an emergency, she won't know about these documents, and will be in too much of a hurry to search. Also, if I get in trouble outside the area of my health trust, they won't have this document at all.
A living will is only as good as your designated power of attorney when push comes to shove. It’s just as important to have these discussions with you power of attorney repeatedly and in depth before the time comes.
Not sure where you live, but in my state (and states around me) EMT/Paramedics know to check the fridge door for a MOLST form that is usually brightly colored (easy to see) and contains your wishes - i.e. no CPR or no intubation etc; usually these are filled out in conjunction with your doctor, they keep a copy and you put a copy on your fridge where it is easy to find - more common for very elderly folks and those with terminal illnesses - but I supposed anyone could have one.
Yeah, that only works well if I carry my fridge around with me! /s
I could carry the note, of course; but the chances are I'd forget to pin it back on the fridge. Perhaps I should stick a colourful note to my fridge, saying "Paramedics: instructions in desk drawer".
My terminal illness is called "life". I have COPD, which is supposedly incurable, and there's a fair chance that's what will kill me; but what guarantees that I'll die is the fact I'm alive.
Informed, decision making away from the pulse of the emotion is essential here. High quality physicians with the time and space to guide a family are immensely impactful but sadly both the time and space are becoming increasingly limited. Having a trusted advocate by your side who is not as connected is becoming a significant trend.
Advanced health directives are great. Sadly most of the time they're placed in a box somewhere and it's not the first thing you think of when something critical is happening.
The cost of care at end of life is unsustainable in its current form. The graphs of average cost per patient as a function of age are all shaped like hockey sticks. As a civilization, we cannot afford to spend like this. It will catch up to us, and then everyone will suffer.
Great book called The Conspiracy Against the Human Race: A Contrivance of Horror touches on this… the fact that everyone is so obsessed with keeping people alive whether the patient wants it or not. Some people may just want to die… and that’s ok.
I've been trying to figure out how to define a living will that is actually quantified, but I just can't come up with anything. Everything I can think of has exceptions in it, and I'm sure I won't cover all the holes.
Mine is very simple; I don't want people struggling to keep me alive, if the chances are that I'm going to die soon anyway. But this kind of thing can only work if the medical staff are trustworthy, and use common sense. My GP knows my attitudes, but in an emergency it might be any old jobsworth that has to interpret my wishes.
I think making a reasonable effort to cover likely scenarios is a good way to communicate your intent, and if a situation comes that you didn't cover, a trustworthy reader has a good chance of taking the action you would have wanted. At some point you have to accept that you're going to have diminishing control over things.
It is not very ethical to spend hundreds of thousands to minimally extend the lives of people who will use this new gained time to watch a little more television. Someone has to pay the bill.
Ethically speaking, Ukraine would now be toast (which means: occupied, enslaved, tortured and raped) if the Western powers didn't spend enough money on their war readiness.
World peace requires unanimity. Absent that, there is nothing principially unethical to prepare for future wars. And that has to be done continuously, because technology evolves.
I wasn't referring to Ukraine at all. Let's not make this about current affairs please.
Whenever there's a new billion dollar plane or ship or whatnot there's plenty of money for it. When someone requires half a mil for some procedure suddenly it's a big no-no.
You can’t cite war preparations as wasteful and then hand-wave away an argument that they’re being used to good effect right this minute.
The problem isn’t that one person in total needs $500K; if that was it, we’d be done talking about it. The problem is that a lot of people need $500K and if some of those are spent on people with literally hours to live, then people who could enjoy years of benefit if treated are at risk of not being treated.
Having an inadequate military relative to our adversaries would be an existential threat to our entire society. Whereas the death of any single individual, while tragic, is ultimately of no consequence.
In Canada, both situations are just symptoms of the same underlying problem: the various public health care systems in Canada are quite inefficient, including when it comes to the allocation of resources.
This should be expected, though, since socialist systems tend to remove, or lack, the balancing factors that can encourage improved efficiency.
There is little incentive for Canadian medical practitioners to do better. The artificially restrictive and anti-competitive nature of these health care ecosystems, from education, to funding, to providing service, helps ensure that the situation doesn't improve over time.
That's interesting. I've seen a table that said Canada's health system has the among the lowest percent admin overhead of any developed country, so I had the impression it was relatively efficient.
Sure, but what specifically? Do they have bad doctors? Do they test your reflexes too many times, time which would be better spent looking in the ears? What is actually happening that's a waste of time?
The last few paragraphs detail specialized long term ICU centers in the USA that treat such patients where the survival rate is low compared to non patients and the medical technology is utilized to fullest so as many patients as possible reach the one year point so the statistics look great, and then it is withdrawn after the 365 day mark (because that is the only measurement used for funding) so the care can be used on the next customer. There's one near me where any time I pass by there is usually an ambulance taking away a patient or delivering a patient (the lights and siren are never used).
I think it's a bit more complicated than that, because in most socialized medicine systems, the suppliers are not owned by the government, so there's a lot of private industry billing (pharmaceuticals, medical devices and implants. etc.)
It's comparable to the USA's freeway system - yes the roads are publicly owned, but road repairs and material procurement are contracted out to private industry, and there's always the possibility of things like a government employee getting a kickback from a construction company for signing off on unnecessary work requests, etc.
Correct..but pretty much any "medical supplier" requires a doctors note to provide services.
"blood testing labs" for example might want to blood test everyone in the country for everything imaginable..Without a doctors note they are prohibited from taking blood.
Doctors (effectively government employees) do control the gates.
Kickback schemes are possible (and have been uncovered), but this is a pretty big tangent to "over-treating those near death" isnt it?
Most "medial fraud" in canada tends to focus on "services charged but not rendered".
Hospitals perhaps not, but someone always makes money in the system and those people may have conflicts of interest.
I live in a country with a population-wide insurance system. Big Pharma dealers do their utmost to curry favors with all the doctors out there, showering them with gifts, inviting them to "conferences" in attractive locations etc.
As my friend from high school, now an accomplished ORL expert, said: "Of course it works. They wouldn't be doing it otherwise."
Lots of people here are willing to let others die so as to not "overburden" the medical system - financially or otherwise.
I for one would like be overtreated to the max, because then what's the point of having EOL care if not to prevent death.
Also, I'm a religious person, and I don't think it's in any way conflicting with my beliefs.
You might want to talk with some of the healthcare workers that are performing these treatments. Most of them will say things along the lines of, "I don't want the last moments of my life to be someone breaking my ribs" or "there are fates worse than death."
It’s definitely true, though I’m glad you’ve not had to whiteness such fates. I’ve seen it first hand with family members and it’s traumatic for all involved.
> then what's the point of having EOL care if not to prevent death.
Death can’t be prevented, only delayed.
I would say EOL care is for making your last days as pleasant as possible for you and (a bit less so) those who care about you.
As an example, “overtreated to the max” may mean replacing “a few days to talk with family, sitting in the sun” by “a few weeks being sedated undergoing various invasive procedures”. I think that, if the choice were that clear, few people would choose the latter.
While I do not wish this upon anyone, should it happen anyway, I’d encourage you to observe closely and reflect on the patient experience if anyone in your circle of friends/family has to face this before it’s your turn.
Watching my grandparents’ experiences (and our dog’s) gave me great perspective on the topic. One of four grandparents “got it roughly right”; the other three suffered extensively.
Of course, it's always easy to be cold and calculating when it's not your life or your love ones at stake.
And sure, I think most people would argue it's not worth spending another $500,000 treating a terminally ill patient with a 0% chance of survival.
But often the chance isn't 0%, it might be 15%. So if it's your loved one who has stage 4 cancer and the doctor says "it's going to cost a lot of money and only a 15% chance we'll cure the cancer", not many people will say "meh... those odds aren't good enough, so lets just put grandpa in a hospice and let him go"
15% is clearly too optimistic. It is closer to 0.15% and it is usually not only about chances but that the person is experiencing extreme suffering despite pain killers that any therapy only prolongs this suffering.
For people with cisplatin (chemo) resistant metastatic (spread through the body) bladder cancer, if you treat with immunotherapy only 6% achieve complete response (cure). The other 94% has a partial response (which means they progressed) or no response at all. So they would likely die of their cancer relatively soon.
Lots of cancer drugs are like that.
Immunotherapy is expensive. Is it worth spending $250,000+ on cancer drugs for a 6% chance of a cure?
Then why bother with immunotherapy at all if it's so expensive. After all it's been available for 130 years if google serves me right, and it still hasn't come down in price besides being not very effective.
It's been available for about a decade at this point.
Why bother? That's a good question. I think the answer is "because 5% will be cured and another 20% will have some response which means they may live another few years."
But the problem is, you won't know who benefits and who doesn't. So do you deny everyone a chance at a 5% cure of 20% chance of a longer life? No, you treat everyone and see what happens.
The UK government put a price of ~25,000GBP per year of life (quality adjusted). So even if people are cured there is value in extending years of life.
Maybe it's closer to 0.15%. So what? We do things with little chance of succes all the time. As I said, I'll take my 0.15% chance of living longer and be very grateful for it. Others might not. I still find it strange that money has a part to play in this at all. How cruel would it be to be denied life-saving treatment just because it's not 100% guaranteed to work.
Money has to play a part in it because the people and companies working to deliver the care need to be paid somehow or they’ll eventually have to stop doing it.
This is a resource allocation problem. People (whether individually or collectively) work to create things of value and direct some percentage of that to medical treatment. If that is wasted in rare cases, that’s unfortunate but we accept some amount of imperfection. If it’s wasted in a lot of cases, many other people will go without needed care who didn’t have to if we allocated that spend more effectively.
Because 0.15% is not a life-saving treatment but hoping for a miracle. And when people are immensely suffering they actually prefer to die than prolonging the sufferings.
How could not money pay part in this? If the continued care costs, let's say $10,000/month (not unusual for the US) and you have 1:1000 chance to live that month, it means this month has cost $10 million dollars. Who is going to pay for that? In fact, taking all this money for yourself, the healthcare for other people will need to be reduced which can lead to shortened life expectation for those people.
A basic issue is simply choosing to have a no cpr order if you have a terminal cancer. It doesn’t mean you won’t get treatment but if your heart stops in this particular situation (metastatic cancer) odds of survival to hospital discharge are routinely quoted as <1%. No cpr doesn’t even mean no intubation or no critical care, it’s more of a “seatbelt” to protect you and your loved ones from suffering if everything goes to hell.
> what's the point of having EOL care if not to prevent death.
That remark sounds odd to me. "EOL care" is provided to people who are at end-of-life, by definition. And neither EOL care nor anything else can "prevent" death.
I totally understand families not wanting to give up but you have to ask "who are you doing it for, yourselves or them?"