I Lied When I Said We Did Everything We Could | Hacker News Reader

I Lied When I Said We Did Everything We Could

doximity.com

729 pointsbookofjoe317 comments

I have an incurable condition and spent about 3.5 months bedridden before finally getting a proper diagnosis. My condition has a significant respiratory component.

While bedridden, I hallucinated wordless conversations with the Grim Reaper. One day, in the landscape of my mind, he rode up to me on a black steed, leaned down and peered into my face, then swirled around and rode off. I ran after him screaming "Don't leave me here! Take me with you!"

That was the last time the Grim Reaper came to see me. With his departure, I knew I would live.

I wasn't happy about it. I knew I faced a long, hard, torturous recovery. Death would have been kinder.

At some point in recent years, I found myself in a group chat. Someone joined. He was a physician who had had a patient die on him that day.

It was a case of 'agreeing to pull the plug.' The man didn't want heroic measures. He knew he was dying.

The physician described this man's final hour and how his breathing slowed, then stopped. It was weirdly cathartic. A lot of stress went out of me and never came back.

Wow. Amazing

What's the name of this condition?

Atypical cystic fibrosis based on the bio

Thank you for sharing.

Beautifully written. Thank you for sharing. I hope you are well.

Beautifully written.

Thank you. Most of my earned income comes from writing. So I've had a bit of practice.

I hope you are well.

Mostly, yes. Everything but my finances seems to be in reasonable shape, all things considered.

I have no connection with this author, but I wanted to point out that they have a patreon account if your so inclined.

My Dad had a cardiac arrest at 70. And consequently deprived of oxygen for 10+ minutes. My Mom did all she could with chest pumps waiting for paramedics. This kept him alive so he made it to hospital. When I saw my Dad, a few hours later, his eyes were glazed over, pupils dilated, unable to make sort of recognizable sound, just soft nightmarish screams, and stretching out his arms like he wanted to get away.

I thought surely his brain is gone, and that he will be in some sort of vegetative state for the rest of his life, if he lives at all. I was already convinced that was it for him. If at that point doctor asked me weather to "pull the plug", I probably would have agreed.

I couldn't be more wrong. Not only did he live. No brain damage at all. 4 years later he's still around. Today he went on a bike ride.

I'm not sure what the odds were for him. The Nurse did tell us that with every hour he is alive his chances kept improving. Brain damage was still a very large risk. But they lowered his temperature, with an ice blanker, to help with this.

Just keep in mind sometimes people can have remarkable recoveries too, especially with modern technology.

Absolutely, but in this case, the patient was terminally ill. The "best" possible outcome of the code would have been a few more weeks more months in a hospital bed.

That's great you guys are so lucky. This happened to my ex's dad and he has been in a vegetated state for years now. Very difficult for the family.

Wow! Almost the exact same thing happened to my Dad. Luckily some big burly removalists witnessed it, and they knew CPR and got to work.

He was out for (if I recall) 27 minutes. It was 4 days of intensive care without us knowing if he would have any brain function, he made a full recovery.

He was back at work in a few weeks, and he's doing great (albeit with a pacemaker).

As a counter story I once attended a talk given by an A&E consultant who was a bit dismissive of the trend for putting in defibrillators everywhere, such as at sports stadiums. He said that by the time someone had rushed to wherever the device was kept, retrieved and used it, it was likely that, at best, you'd be looking at the casualty surviving in a persistent vegetative state. Incidentally, someone asked about having oxygen supply and mask available for people who've collapsed. By all means, he said. That will make everyone feel better.The helpers because they are doing something, the victim because something is being done for them but other than that, it's useless.

I don't get it. Aren't A&E people in ambulances reaching for the defibrillator themselves? And don't the automatic defibrillators allow for a much faster response time in the case of fibrillation, lowering the chance at brain damage and the like?

I mean I don't know how often people end up needing one of those in real life and I'm pretty sure it's some weird conspiracy by the manufacturer(s) of that device, but still.

The opinion of that A&E "consultant" is unsupported by the available evidence. Public access defibrillation is clearly linked to better survival to discharge rates (i.e. people actually leaving the hospital).

EDIT: As an anecdotal example, I know of at least one person who is walking around today because of a defibrillator at a stadium. 17 year old male took a lacrosse ball to the chest, instantly triggering ventricular fibrillation[1]. The athletic trainer used an AED from the seating area and his heart was beating again before the ambulance arrived.

[1]: https://en.wikipedia.org/wiki/Commotio_cordis

No he was a consultant, without the "", which means that he had a medical degree plus postgraduate qualifications and about 10 years in hospital training positions usually including experience in different countries. At least that's the norm here.

70 year old otherwise healthy male? I suspect nobody asked you about pulling a plug because nobody thought you should. At least not so quickly.

That's much different from what is described in the article.

On the topic of describing the events of the code (cardiopulmonary resuscitation) in great detail, there have been studies showing that bringing the family into the room during a code leads to decreased PTSD for the family.

From a study in the New England Journal of Medicine: "Conclusions: Family presence during CPR was associated with positive results on psychological variables and did not interfere with medical efforts, increase stress in the health care team, or result in medicolegal conflicts."

Full study: https://www.nejm.org/doi/full/10.1056/NEJMoa1203366

DOI for Sci-Hub: DOI: 10.1056/NEJMoa1203366

I was in the room when my dad coded. I watched everything. I saw them manually providing oxygen by "bagging" him. I answered questions about DNR. I watched them place eyedrops in to verify death. I walked with his body down to the morgue.

I am thankful by the fact that I was there. But I am tormented by it too.

The first time I saw the death of someone close to me, I was tormented, too, by my own sense of the fragility of life. But especially my own life. I was afraid for myself, and tormented by the certitude of my own terminal existence, the fear amplified by the urgency of my circumstances and especially after witnessing (or participating in) the subsequent deaths of yet more close friends. But after some years of therapy (on a couch with a professional but also especially on drugs in the forest with amateurs), I've come to terms with it, and in fact I get some comfort out of the inevitability of my own death. It's one of the few things we can count on without any doubt, and being able to predict anything about life is a blessing. And actually, instead of being tormented by it, I'm grateful for the experience. I don't take much for granted, and I'm really thankful for every day that I wake up. I genuinely believe that I was given the greatest gift that I could ever receive. And even though it may seem weird to say -- and given that I'm interpreting your words in the right way, and also if you'll pardon my presumption for offering -- I honestly believe that you've been given the very same gift, but that you only don't know how to receive it just yet.

There is a dual or two-aspect irony at the center of modern culture in the West. The ironies - both negative - are the following:

(1) An increasing, intentional aversion to one's own death and the death of others. Instead of living life in full awareness that you and those you care about are all dying (in some sense), our culture runs from the prospect of death through various forms of distraction, etc. This adolescent attitude weirdly breeds a callousness of heart. If death isn't something you ever think about, then does it really have meaning? If you always evade the fear instead of confronting it head-on, then there is no real loss or pain or grief. There is less joy precisely because of this evasion, but at least you've numbed yourself, right?

(2) The second irony is that even though this culture runs from the thought of death, it is also increasingly a culture of death in some regards. A culture of death is one where individual and collective actions that typically lead to the de-stabilization, weakening, or implosion of the society which celebrates them... are celebrated. This can be seen across the West, regardless of one's ideological slant. Cultural/societal death and decay remain invariant across ideological groups (that is, they have no privileged locus).

Facing one's own mortality carries a tacit knowledge of death that can't be got by other means. It's one thing to think about it intellectually, to sort of turn it around in your mind. But it doesn't give you a sense of death. I can tell from your treatment of it that you haven't. And that you hold up this sort of deeply personal interaction as a demonstration of some problems you believe you've identified with an entire culture, I think shows of a different kind of callousness of heart.

Hold your horses a bit, you can't make such blank statements about somebody who you don't know at all. People are so vastly different and unique inside that what works for you and defines you might have little to no meaning to next guy. What you consider an important marker of some aspect of personality might be lacking elsewhere, yet the aspect itself might be very well there.

Psychedelic drugs can give you perspective on, well almost everything that nothing else in western culture comes even close to. Or might not, as said we are so unique that no blanket statement can express the truth.

As for me, doing some rather extreme sports puts me to situation with imminent fear of death (ie climbing hundreds of meters above ground, used to have strong vertigo all my life), that one becomes well-aware and content with it. Maybe not every climber, but definitely me.

If I experience my parents/life partner passing in my hands, it will be a tough moment. But I will manage it, no doubt there. Same goes for rest of close people. If you expose yourself to extremes, you become familiar with how you react to them, and also in managing them.

I agree with what you've said about extremities of life experience, and I agree that people fundamentally experience life differently from one another. As an exception among most of my peers, I support the notion that someone hardly exposed to danger could become affected by e.g. PTSD. But that being said, I can assure you that there is nothing that comes close to the experience of combat, and nothing-er still that comes close to experiencing it continuously across years. It's not like being in the same room when grandpa passes away. It's being consumed by human terminality, every conceivable permutation of mortal extreme. Surely you've read about the continual shelling of the trenches, and at least intellectually understood there's a difference. But even then, I'm sure there have been folks who, through their own relative existence and differential experience, have stumbled high on mushrooms on the same tacit wisdoms as those realized by ascetic monks who spend their entire lives on the edge of existential crises. I'm totally sure it happens, but it doesn't happen often. I'm surprised all the time, but just based on his reply, I made an educated guess, which turned out to be right. I don't have children, but I know enough people with kids to understand that having kids flips a bit in the human brain. It's an experience with a tacit component that can't be got by other means, though I'm sure someone's been there somehow that didn't involve creating a child. There are exceptions to every rule, but they are exceptions.

You get a sense of death in various ways. Life-threatening illness. Experiencing the death of friends and family members (and not just experiencing, but processing your emotions and not running from the pain by choosing to simply ignore it as if it is not really there). Spending time with and caring for the sick and elderly.

There are more ways.

I've only been in a life-threatening situation once in my life, but I've experienced the others a number of times.

My point was that our culture seems to discourage absorbing loss (within oneself) and transforming it from pain into maturity, resilience, increased desire to help others, increased motivation to maintain communities, etc. Instead, there seems to be a pressure to make death (and loss) something ephemeral, such that the loss never really occurs.

No, your point was that you were trying to use my post as a springboard into passing your value judgments about western culture. Which was itself incredibly ironic both in your actually using the word "irony" and in your sort of amazingly insensitive attempt to hijack my small message of encouragement to this poor dude (to try looking at and thinking of his torment in a different way) in order to interject your theories. Which was for me, in the end, the thing which QA folks call an indicator.

I lost my dad recently (he was 84 and lived a wonderful and healthy life, which I consider a huge win for him).

He had a terribly bad stroke that left him very much alive, but without the ability to speak, read, or write. He was a professional book reviewer and writer for much of his life, and continued to read, write, and think with voracity up until the minute before his stroke (he was setting up his Series 4 Apple Watch at his desk when the stroke hit ;) Not an ounce of cognitive decline into his 80s, which we were all thankful for.

He spent about 10 days in the hospital after the stroke. He was mostly lucid, glad to have the family around (thrilled to have his grandson there), but clearly frustrated that he literally could not say a word to us. At one point I handed him his iPad Pro so he could, perhaps, type a bit, but he looked at me and shrugged when the keyboard popped up. That part sucked.

He developed a heart arrhythmia and pretty severe pneumonia very quickly, and after a week or so of minimal cognitive improvement, the attending sat me, mom, and my sister in a room to discuss plans. He explained that, of course, they could and would do the "everything we can" bit if we wanted, but that dad's Living Will (*note: highly recommended for everyone to get one) was clear that if he couldn't live a comfortable life after this sort of debilitating event, he wanted only palliative care. The attending also explained that there was "a 0% chance he'll regain cognitive abilities at this age to live anything near a normal life."

It took us less than a minute to all vehemently agree that the right decision would be to move immediately to palliative care, to let things take their course, and let him spend his last hours/days in peace. The attending told us he was shocked at how easily we agreed -- that most families have a hard time letting go and that he often has a difficult job trying to balance the need to be pragmatic with the wishes of families who might not be in a rational state of mind. He actually thanked us for being so level-headed. Dad died about 2 days later in absolute peace, with family around, a warm and wonderful nursing staff taking care of him, and honestly, I wouldn't have had it any other way given the circumstances.

I share this not to gloat or preach that our family is somehow better than those who choose to request "full code", but as an anecdote to let people know that it's ok to let your loved ones go peacefully. Even in the months since this happened, none of us have even a single ounce of regret about the way things were handled.

I want to thank you for sharing your story, and also want to point out what I believe to be the most important point: Be clear with your loved ones what each of you considers "life worth living." Communication is paramount, and doing it ahead of time is also paramount because various situations mean it can't be done in the moment.

The goal and ideal scenario is that when circumstances require it, your loved ones do not feel that they are the ones making a decision. They should feel that they are carrying out the decision that you already made for them, with minimal interpretation on your part.

I was in a similar situation with my mother, and without going into too much detail, it was a significant burden taken off of me that she had made it very clear (both in person over the years, and through legal documents) what her wishes were. It is honestly something that I'm very thankful that she did, and recommend to others, especially those facing eminent medical issues.

A very close relative of mine got a similar massive stroke when he was around 60 that also hit the language center. Even if I was quite young I remember that moment of frustration in the hospital when when he could not talk with either of us. The doctor explained he would unlikely survive the night, and even if he did he would not be able to leave the hospital bed. His daughter did the same however what the person in this article did and demanded full treatment including surgery which the doctor advised against. Against very unlikely odds he recovered. A few years later he was biking to the bank and climbing the cherry tree on the yard. His ability to make himself understood was extremely limited where basically only his daughter sometimes understood him, through writing and reading did very slowly come back to a minor degree many years later. He died less than a year ago at age 93.

I writing this not inject doubt in your decision, and there are many differences, but I would like to share how impossible the decision can be. I read articles like this and acknowledge the massive amount of unnecessary pain many has to go through in their last days, but if I end up having to make a similar decision I don't know what I would do or think.

The decision is easier when you have conversations and put wishes in writing before they are necessary. And update them as needed.

My dad has ESRD and we've had some conversations about what he would want at the end. Many of the potential issues we've discussed involve getting 2nd+ opinions if necessary... but he also makes it clear (and I agree with him) that at some point the treatment and recovery process itself might not be worth it for an unknown recovery for him.

I think this communication respects that this is a difficult decision, and I've come to the conclusion that decisions can be reached that may not be the "best" objective decision (e.g surviving another 33 years) but it is a decision that the person supports, so that you as a survivor can be at peace with it too. So like, if my dad were in a situation similar to your relative - I already know that he would feel that the numerous procedures and years of recovery outweigh 33 more years of life. I would not seek full treatment. Knowing this makes me at peace with anything that can happen, more than anything else we could do.

I was inspired largely by Atul Gawande's book "Being Mortal" - where he talks about and discusses ways that we can figure out how to live our life at the end, rather than be worried about death.

(sorry for delayed reply, the comment brought back quite a few things).

Yes. Having the conversation before really helps. Not only is it said to put less stress on those close to oneself, but it put things in a bit larger perspective. A 2nd+ opinion is also critical, and who know what one would have said in our case. I strongly hope that the medical science is today better than 30 years ago so that the advice the doctors gives are today more accurate.

For myself I have thought a few times about what I would want, but have not reached a decision. The article is a strong reminder how badly it can and in many cases will happen when someone demand full treatment.

Communication is key before a loved one ends up in these situations. I've gone through a similar situation to the experiences in this thread. It's so tough even so.

That said... my dad had a living will I didn't know about until he had a stroke... one of the most painful weeks of my life.

My father had a massive stroke one morning in 2002 as he was getting ready to go play tennis. In the hospital he had severe brain swelling and was clearly in tremendous pain. His wife — his second wife, not my mother, and roughly a dozen years younger than he was — was not ready to let him go, despite his pleas that he be allowed to die. She fought heroically with the hospital staff, getting them to do various things they didn't think would help much, until he was recovered enough to go home (I don't recall how long that took — a couple of weeks, I guess, or more). He lived another two and a half years or so, but he was pretty miserable the whole time.

I could admire her tenacity in keeping him alive, but it's very clear she did it for herself, because she needed to get used to the idea of him dying, not for him.

"He lived another two and a half years or so, but he was pretty miserable the whole time."

This was no doubt difficult on him. It must have been tough on the rest of the family members as well. Lives and careers sometimes go for a toss while taking care of loved ones who become disabled. Because you love them, you want to take care of them.

If this happens to me please reach out to my parents to ask them to put me in front of a computer with counter strike.

A similar thing happened to my grandfather before he passed. There was a bit of a conflict within the family as to whether to let him go peacefully or to try and keep him alive, but we ended up choosing to give him palliative care.

Personally, it was a mercy to see him die, it's strange to say but I was happy when he finally passed. He was a shell of a man in his final weeks, most his mind was gone after a series of strokes and he was being fed through a tube. He was alive in a technical sense, but he most certainly wasn't living.

Wonderful article.

This is a not-uncommon situation in end of life care. It's difficult for a family to accept a tragedy like this, a loved young woman dying in the prime of her life from something untreatable. The families often are in almost some sort of denial (understandably, I'm saying that without judgment) and demand that everything be tried, even when it's futile and ends up making the situation worse like in this case. Medical community has been working on trying to change this for years, but ultimately it seems to me like it's a cultural thing as well.

> The families often are in almost some sort of denial

It was like pulling teeth to try to get doctors to tell me anything realistic.

I don't get the impression that anyone in the medical community is trying to change this.

Unlike my other family members, I had seen this person once a month obviously deteriorating in line with what every prognosis and statistic would say. My other family members were there every day and couldn't or weren't willing to see the progression. This isn't a movie with a pleasant ending. The only hope is for the suffering to end, from my perspective, and in hindsight, yes, it was a spot on analysis.

With regard to the doctors, now that part was just like in the movies. They hemmed and hawed and made sad empathic expressions, but didn't explain the possibilities at all. They just assume everyone is in a state of stupor, they probably assumed my rapid conclusions were some desensitized state of shock, just as they assumed my other family members clinging to hope was an equally dismissible state of denial.

I know some parents who had a child with an extremely rare degenerative disorder that attacks the nervous system. They were wealthy enough to afford extremely good care and as such, kept their poor suffering child "alive" for 12 years longer than anyone else who had ever had the same disease. Life expectancy of newborns with this disorder is about 1-3 years.

At every turn, the doctors and nurses charged with the child's care encouraged the parents to end the kid's suffering. The parents were absolutely invested in using all of their resources to give the child "the best care". The last few years of the kid's life were basically vegetative, with frequent interruptions of how a human with an obliterated nervous system manifests pain.

I'm sorry if this reads all tragic and horrible, but that's what it is. There should be laws preventing family members from prolonging the suffering of their loved ones.

And what's to prevent insurance companies from exploiting those laws to reduce costs and increase profits?

As opposed to the doctors, nurses, hospitals, medical supply and pharmaceutical companies who profited for over a decade from the child's care?

As strange as it sounds that's not really how it works.

It's a competitive industry. So, an insurance company's profit is based on total healthcare costs. The only way for the industry to make more money is to cover more people, or for healthcare costs to rise.

Put another way, if total healthcare spending was 0$, their total profits would be 0$. They can cut internal costs somewhat, but that's about it.

What prevents it now?

>There should be laws preventing family members from prolonging the suffering of their loved ones.

I can't think of a way to implement a law like that which wouldn't be fraught with horrible problems. Just imagine the misery associated with doctors deciding to "kill people's children," which in fact in some cases would be unjustified. (Nobody can always get it right, not even doctors.)

My entire family is in medicine and I am well aware of this.

However, cases like the one I mentioned are fairly clear cut, in my opinion.

That doesn’t mean we can’t explore the idea.

In Australia, and I believe most places with well developed legal systems, you can get in quite a bit of trouble for mistreating an animal.

No so much if you mistreat someone under the auspice of medical or aged care.

Our culture has institutionalised the mistreatment of the terminally ill and frail-aged.

There are good arguments to be made that this should be seen as a problem that should be addressed.

Brutal but I remember reading an excerpt from an army doctor during the Napoleonic wars. He had two soldiers in his care who had been burned in a gunpowder explosion. A one point a solder came in saw them and then bluntly asked if they would live and was told that it was hopeless. The guy then went and cut both of their necks. The doctor in shock screamed at the man you monster to which them man screamed back I'm not the monster you are.

Reminds me of another account of a runway crash that left pilots trapped beneath burning wreckage and the understanding that any extraction and fire fighting would take hours when even minutes of a firey agonizing death, the local commanding officer on the ground grimly shot them both with his service pistol to shorten it to seconds and there was no disciplinary action even considered.

Another story a friends 93 year old grandfather was found unresponsive in his apartment. Rushed to the hospital and they saved his life.

And when he woke up he was utterly pissed because they cheated him out of an easy death. And as a devout Mormon he was done with this world.

My born in Greece high school history teacher said the Greeks didn't care how a man died. It's was how you lived that was important. I've tried to keep that in mind.

Assisted suicide has been legal in Canada for a few years now, and there haven’t been many major issues (other than Catholic hospitals refusing to comply with the law). Doctors aren't fools, and won't do it in cases that aren't blatantly acceptable. Most of the scenarios where it is desirable are cut and dry, and we have ethics boards/courts to handle the other circumstances.

Assisted suicide is a completely different thing than "laws preventing family members from prolonging the suffering of their loved ones."

The first gives patients and families more options in how to deal with end of life care, the other takes options away.

> the other takes options away

Yes, it takes it out of the hands of the family and actually respects the patients final wishes, that they made for themselves while still lucid.

What are you referring to? No one is talking about invalidating advance directives, or taking away medical power of attorney, etc., in cases where, as you put it, "the patients final wishes, that they made for themselves while still lucid" are known.

Of course (unfortunately) most people still don't take these steps to make their wishes known. But the original comment was about "laws preventing family members from prolonging the suffering of their loved ones," specifically about an example of a young child, whose wishes were not known (and of course not really relevant for a toddler). The fact is in the absence of any advanced directive I would much rather have the family make decisions about the type of care desired by the patient than the state.

"Refusing to comply with the law" sounds like assisted suicide is mandated, when it's really a voluntary thing. As it is, where are there even still private, religious hospitals in the country? At least here in Ontario hospitals are all public institutions.

Ah, welcome to Alberta :)

A lot of small towns in Alberta only have Catholic hospitals (which are publicly funded, but run by Covenant Health [0], a Catholic institution). They refuse to provide, among other things, assisted suicide or abortion services despite being publicly funded. 4/9 of Edmonton's hospitals are run by Covenant Health.

[0]: https://en.wikipedia.org/wiki/Covenant_Health_(Alberta)

>I can't think of a way to implement a law like that which wouldn't be fraught with horrible problems.

Existing child protection laws are for the most part perfectly satisfactory, if they're actually used. The courts routinely decide on whether a parent is fit to make decisions about their child, or whether a particular decision is in the best interests of that child. Many of these cases will individually present very difficult decisions, but the legal principles are relatively straightforward.

The impediment to actually using those laws is largely that of pro-life activism - few hospitals are willing to legally advocate on behalf of a suffering child because of the fear of becoming the centre of a media circus.

Yeah, the Terri Schiavo case is a great example of how pro-life activism unnecessarily prolonged someone's suffering: https://en.wikipedia.org/wiki/Terri_Schiavo_case

That is what I was referring to earlier in the thread. I think that case had far reaching effects, even to this day.

In some US states the doctors propose a plan, and if the parents of the child disagree with that plan they can go to court to get an injunction to prevent the doctors carrying it out.

Compare that with England. The doctors propose a plan, and if the parents disagree with it the doctors go to court to get an order. The court has to look at the child's best interests and the paramountcy principle means that while everyone's (parents and childs) rights are looked at it's the rights of the child that take priority.

> associated with doctors deciding to "kill people's children,"

They can already do this in most of the US.

The current situation is already fraught with horrible problems! We torture innocent children to death! Would the problems you’re imagining really be worse?

It would already a great step if we would stop criminalizing assisted suicide. My grandmother recently passed away from cancer and she luckily suffered only a relative short while after switching from treatment to palliative care. She said from the first day that she only wanted to die quickly and asked the doctors repeatedly to give her something to end her suffering. Her health deteriorated to the point where she couldnt get up anymore and my parents had to find a palliative care facility. Only there was she given proper pain medication, which is horrible in itself, but still had to die slowly.

Its cruel and nothing more. I have little sympathy for the religiously driven pro-torture faction.

When my dad was in ICU, an elderly woman coded repeatedly for the last probably ten days of her life. My mother spoke about it with disgust. She felt the family wasn't prolonging the woman's life. They were merely torturously dragging out her death because they were not emotionally ready to accept the reality that she was dying and would not be going home again.

(Given that my dad was in his late sixties, I think "elderly woman" as a descriptor from my mother means eighties.)

>There should be laws

Philosophical problems aren't solved by legislation, it is important that people stop looking towards lawmakers to push their morals.

Telling good stories – tragedies – well enters them into the popular mythos effects better choices.

>Philosophical problems aren't solved by legislation, it is important that people stop looking towards lawmakers to push their morals.

Murder, rape and theft are all philosophical questions, why are they easier to resolve through legislation?

I mean, we have laws about murder, rape, and theft, but are the questions actually resolved? did george zimmerman murder trayvon martin or did he justifiably kill him in self defense? if you pick a young woman and an old man at random, will they agree on the definition of "rape"? will either of their definitions be reflected by the law in their jurisdiction?

we do our best (most of us at least) to create laws that are just and fair, but ultimately law is a pragmatic measure taken to prevent societal collapse. murder is illegal because you can't have a viable society where anyone can kill anyone else at any time without penalty. whether or not you treat dying patients humanely doesn't really threaten the stability of a nation in the same way.

What isn't philosophical question? You could say "nothing" and defend it well but that transforms my point from "some things are better off solved with other than laws" to "laws are pointless". Obviously I'm not trying to say the latter.

The issues you mention aren't philosophical questions in the way I am trying to express because there really isn't much of an open question. How many people are openly advocating that murder is generally acceptable? There are corner cases, specific instances, etc. that are up for debate but on the whole there is little question, murder is wrong and there need to be legal remedies when it happens.

That is wholly different from the end-of-life issues we are talking about. People's opinions and behaviors are all over the map and there is generally no consensus about anything. It is not a problem that is obvious and it is not a problem which has existed for much time. Murder has existed forever, the ethical question about when and how to use medicine to extend life is very new and has had only a little public discourse.

> laws preventing family members from prolonging the suffering

This would be inconsistent with the profit motive, which incentivizes patient treatments not cures.

You do know that most hospitals in the US today are run by Non-profits right?

This tired old, inaccurate, and moronic belief that evil capitalism only wants to make people suffer, where good moral socialism would solve all of our medical problems fails even a elementary glace at history and reality

Is wasn't long ago that homosexuality or intersexuality was a terrible condition that "any loving parent" would kill their child to prevent.

When my father was dying a few years ago, the doctors and nurses were very pragmatic and rather blunt in their prognosis and the options. They carefully did not make recommendations, but laid out the results of the various options.

I appreciated that.

Sorry you had a rough time getting information from your doctors.

> I don't get the impression that anyone in the medical community is trying to change this.

This is, in my experience, completely wrong.

> seems to me like it's a cultural thing as well.

This is true. I think that it's also a religious thing as well, and almost Christians. Other religions are more accepting of death, but Christianity has taught many to sincerely believe that Jesus himself would step into the room and heal their loved one, therefore every attempt must be made to save them.

This is something I've seen first hand in my years as a Paramedic. Patients with absolutely zero quality of life, yet remain a full code, in a nursing home. Family hasn't visited them in months (maybe coming 2-3 times a year tops) but there's evidence of a direct deposited social security or retirement check going somewhere. It's sad and I wish that we had a huge cultural shift regarding end of life care.

I believe this might be more prominent among uneducated folks of (at least in my neck of the woods) non-mainline American Protestant denominations. At least the doctors of the Catholic Church will specifically talk about preparation for death, dying well (also mentioned by Fred Rogers in the documentary I saw about him), etc.

More simply, it's not easy to let go of someone you love and say goodbye to them.

It's not fair to the person ready to die, but there's a lot of pressure put on people (through TV, movies, friends) to fight for those you love, even when they don't want you to.

I can't disagree with that.

As a whole, I think that Americans are woefully unprepared for end of life care. I encourage people to have an advance directive on file.

Catholics tend to be on the “full code” end of the spectrum; part of the whole “culture of life” thing.

It’s really strange to me. Christianity also teaches that death is temporary and you’ll be reunited with your loved ones (assuming everyone is righteous). Why such a fear of death?

I grew up in a conservative, Protestant family and I might be able to shed a little bit of light on this. A few points, simply based on the environment I grew up in, which means of course this is just one perspective on just one religious denomination - I won't provide more caveats than that:

- Christians take the afterlife very seriously. One must be judged by God. Regardless of how confident you are in your final destination, the prospect of being called to account for your actions in front of an omnipotent being is not something they take lightly.

- Protestant Christianity teaches that one must be "saved", that is, accept Jesus Christ and have a profound spiritual experience and subsequent spiritual connection with God. Many Christians are honest people who may not have had such an experience and are aware of this fact, which naturally creates fear when the end of life approaches. In other words, they may have doubts about whether or not they are indeed saved. The alternative to being saved of course, is spending an eternity in hell. As you might imagine, this can be nerve-wracking.

- Christians believe that whether or not someone ought to live or die is in God's hands. They take the view that whatever humans ought to do to extend life ought to be done, since death will come when God wills it. Choosing to stop life support is tantamount to choosing to end someone's life, a power they believe only God wields righteously.

- Lastly, regardless of one's personal or religious beliefs, death is scary. I think the appropriate reaction to a Christian (or any other religious person) who is terrified that they, or their loved one, may die, is not observing that this fear may be incompatible with their professed beliefs. The appropriate reaction is compassion.

Note: I'm an atheist, so telling me that all or part of the above is irrational is...uh...preaching to the choir.

> Christians believe that whether or not someone ought to live or die is in God's hands. They take the view that whatever humans ought to do to extend life ought to be done, since death will come when God wills it. Choosing to stop life support is tantamount to choosing to end someone's life, a power they believe only God wields righteously.

On the flip side, couldn’t life support be considered thwarting God’s will?

If God gave man brains and free will, then Christians should be ok with the tools and medicine man creates, because it’s still God’s creation at the root, if even indirectly. (I know this doesn’t square with Luddites/ Amish etc.)

God gives man the ability to make tools that can both prolong their life and end it prematurely. Is there anything special about the latter than makes it “forbidden”?

Christian pragmatism.

I don’t think there is some sort of list of forbidden tools. Though Wikipedia says that Protestants think you go to hell if you commit suicide:

Psalm 139:8 ("If I ascend up into heaven, thou art there: if I make my bed in hell, behold, thou art there.") has often been discussed in the context of the fate of those who commit suicide

This is not universal among Protestants. It is the doctrine of the Roman church (suicide is mortal sin, and you are outside a state of grace if you commit it, and you can’t be reconciled if you’re dead).

As another poster said this is Catholic doctrine. I'll go further than they did and say that this is uncommon amongst Protestant churches.

I think ultimately there’s no good answer to this line of questioning, because an omnipotent god can make whatever he wants happen regardless of what humans do. Claims that someone is thwarting or enabling God’s will are subjective and religious leaders can deploy them however they wish.

Reminds me of people who say that their favorite President was chosen by God. I always want to ask them if that means the ones they don’t like are also chosen by God, and if not, how they can tell which ones are and which ones aren’t.

Yes it means the ones they didn't like were also chosen by God, and it means they have mistake in their belief of what God wants.

It's no different from somebody wanting their loved one to live, and God disagreeing and the person passes away.

So next time you hear that reinterpret it as "wow I must be doing something right if God wants the same thing I want".

Can I also interpret it as “wow, I must have really fucked up if God wanted the total opposite of what I wanted the last time around?”

Partly. But say you want your spouse to live, but God made them die.

Are you wrong? No. You just don't have all the info. Could be the same here, you might be totally wrong as you say, or it could be you're not wrong, you just don't (and can't) know everything involved.

He could even create a rock he himself could not lift. Oh wait...

The answer to that is the concept of "can't" does not exist for God.

Same as how the concept of alphabet does not apply to a number, or how you can't divide by zero.

It's simply not a concept that can be applied.

If he literally created the universe and all the laws of nature, couldn’t he create such a concept?

I think this shows that the concept of omnipotence is itself logically incoherent. It’s the theological equivalent of Russell’s set of all sets that do not contain themselves.

> If he literally created the universe and all the laws of nature, couldn’t he create such a concept?

That would imply that there are two things: God, and this creation of his "the ability to can't", but since God is just "one" this entire concept can not be attributed to him.

You can read about "Negative theology" if you are really interested in this topic.

> I think this shows that the concept of omnipotence is itself logically incoherent. It’s the theological equivalent of Russell’s set of all sets that do not contain themselves.

That's not a new idea, wikipedia has: https://en.wikipedia.org/wiki/Omnipotence_paradox

The subsection "Paradox is meaningless: the question is sophistry" covers it about as well as I could in a comment here.

> If he literally created the universe and all the laws of nature, couldn’t he create such a concept?

What is not, is not. Omnipotence means "being able to do anything that is possible to do", not "being able to do anything that is possible to be spoken of". Re-stating your argument:

* "He could even make a square circle" * "He could even tell a true falsehood" * "He could even do that which contradicts itself"

Making a rock too large to lift is "He could even make something that He could not control". What you have wound up rhyming with is Anselm's argument for the existence of God [1] - for if your god can make a rock to heavy for him to lift, then there exists a greater omnipotence that could lift that rock. Therefore, your god is not omnipotent, and is not god.

[1]: https://en.wikipedia.org/wiki/Proslogion#Faith_Seeking_Under...

> Omnipotence means "being able to do anything that is possible to do"

Would you say that omnipotence includes the ability to define what omnipotence means?

My limited understanding of theology is that polytheistic religions resolved a lot of this by not having omnipotence, and by having hierarchies of gods. You had a sort of overarching force of nature thing that gave creation to everything else, and to which gods answered. And then you had gods like Zeus that were almost all powerful, but still bound by laws of the higher tier being/force/whatever. And below gods like Zeus you had another tier that obeyed even more rules, but was still more powerful than a mortal.

Dualistic religions postulated that there is god and an evil counterpart with which god is in eternal struggle. God in this sense is not omnipotent since an omnipotent god could defeat any foe just by changing the rules of the struggle.

Monotheistic religions hold that there is only god, an omnipotent being and the source of all creation. Christianity is an inconsistent mix of this and dualism where god is omnipotent, yet cannot just do away with the devil.

I think you should rephrase those very specific items as belonging to your very specific sect because those ideals don't hold fast and true for most, even Protestants.

Also, the decision to 'pull the plug or not' is agonizing for everyone, not just one specific group.

And it's definitely not 'irrational' to fear dying.

> Christians take the afterlife very seriously.

That's very variable with denomination.

Good post. The third bullet point is accurate. But, maybe needlessly complicated... In short, the law is clear: Thou shalt not kill. If someone's life is in your hands, inaction -- such as not consenting to a feeding tube or repirator for your unconscious relative -- is ethically the same as actively killing them.

Maybe it is. Maybe it isn't. But the qualms come from relatives not wanting to be responsible for killing grandpa.

I"m not sure what "law" you're referring to there, but I'm quite sure the Bible does not mention feeding tubes or ventilators. As a Christian, I would have no issue following someone's directives that they don't want such care (and I've made it clear to my family the very limited circumstances in which I would consent to those sorts of treatments).

To your second bullet, I think those beliefs are much more prevalent in so-called Evangelical denominations, and less so in mainline Protestant denominations. As a Lutheran, for example, the notion that any Christian would be relegated to hell is basically unthinkable, and there's very little emphasis placed on it otherwise.

Indeed, we Lutherans take comfort in Baptism and Christ's saving work.

In my experience with Muslim families, they have often been the hardest families to deal with (exactly as you describe for Christian families) because they adamantly demand absolutely every measure to be taken

>This is true. I think that it's also a religious thing as well, and almost Christians. Other religions are more accepting of death.

In my own experience growing up in church as a pastor's kid and attending a lot of funerals, people at Christian funerals tend to be a lot more accepting/less obviously distressed than people at non-religious memorial services.

I think what you're describing has more to do with the American scientific optimism of the 50s and 60s and it's left over impact on American culture than it does with any particularly religion.

My parents generation truly believed that cancer, heart disease, and many other common ailments would be cured by the time they were old.

>American scientific optimism of the 50s and 60s

Sam Altman says he “fully expects” his brain to be uploaded to the cloud someday[0]. Is it any different this time, or do humans always delude ourselves about our mortality?

[0]https://www.technologyreview.com/s/610456/a-startup-is-pitch...

I think it's cyclical, and it's a matter of degree. I don't think very many people today believe that they will be able to upload their brains.

I wonder how many of us believe that heart disease and cancer will be gone by the time we're old?

It is simply a modern version of "afterlife", expressed in modern terms, but nevertheless the same idea.

That's a bizarre bigotry. Christianity teaches of heaven and the second coming, and also that Jesus heals regardless of doctors. There is a huge diversity in Christianity.

How do you as a paramedic know what's happening to a patient's social security check?

When a family member actually says "If she dies, we aren't getting paid anymore." I've also talked to nurses who have approached the topic of hospice with family members, and there is an undeniable financial incentive in many cases.

And that only happens among Christians? Atheists and Muslims aren't motivated by money?

Did I say anything at all to insinuate that?

No.

The death of a family member can change the entire family dynamic, and greed is a powerful emotion that knows no political or religious boundaries.

I mean... yeah? You specifically called out Christians, then you described this behavior. That certainly falls into the category of "insinuating" in my opinion.

> This is true. I think that it's also a religious thing as well, and almost Christians. Other religions are more accepting of death, but Christianity has taught many to sincerely believe that Jesus himself would step into the room and heal their loved one, therefore every attempt must be made to save them.

Nope. Everybody dies, with rare exception: the Bible is pretty unequivocal on that. I hate to drift so close to playing an SJW card and I'm not saying what you've described never happens, but please don't tar us all with the same brush and, instead, educate yourself.

This has been my own experience over the years, and if you'll please take the time to re-read what I said, you'll see I said "many" and not all. There are going to be differences, of course.

Think back to the Terri Schiavo case. While she was apparently Catholic, the sentiment was the same. Her family believed that she was going to be healed by God (or Jesus, either one) and would make a full recovery.

I also think that years of medical dramas on television have given many many people (again, not everyone...) unrealistic expectations of medicine.

Her family did believe that she had more than a nonzero chance of some level of recovery, but that was not why they did not want her to be starved to death by having her feeding tube removed.

Though they held out hope, they acknowledged that she might never get better.

Their objection to withdrawing her feeding tube was not because they considered it wrong to do to a person who might recover but because they considered it wrong to do to a person.

That does not mean that they considered every life support measure to be necessary. It just means that they considered the denial of food and water to be different than something like turning off a ventilator.

>Think back to the Terri Schiavo case. While she was apparently Catholic, the sentiment was the same. Her family believed that she was going to be healed by God (or Jesus, either one) and would make a full recovery.

That's a mischaracterization of what happened. They had several arguments.

1. They believed that she wasn't actually in a persistent vegetative state, but that she was still conscious and could understand what was said to her and display emotions. They even found doctors (who were probably wrong, but they still had validation) to agree with their theory.

2. They believed that her husband wanted her to die so that he could get remarried while still inheriting her estate.

3. They didn't believe her husband when he said that she wouldn’t want to be kept alive via feeding tube. They believed that since she was a devout Roman Catholic she would have seen denying nutrition as euthanasia even though she might not want to be kept alive via a ventilator. This is the main religious argument made at the time, and it’s more of an argument about her wishes than a religious argument.

4. They found doctors who told them that there was a chance of improvement through experimental procedures.

They also seem to have made money since then by taking a salary to run a foundation in her name. It seems like either they were just parents who didn't accept that their daughter was in a persistent vegetative state, they believed the doctors who told them that their was small chance of improvement, they were trying to make money, they really hated their son-in-law, or some combination of all 4.

It didn’t seem to have anything to do with them thinking that God was going miraculously heal their daughter. It’s definitely not evidence of wide scale Christian refusal to accept death.

> It’s definitely not evidence of wide scale Christian refusal to accept death.

True if you are speaking only of the events you described. However you left out the national debate(and I use that word loosely) over the matter. That was evidence of wide scale Christian refusal to accept death. It took the typical form of the extremists appealing to and living under the shield of the larger group of religious believers who didn't exactly believe the same, but presumably felt some need to side with a "believer".

The national debate was mostly pro-life groups trying to spin the situation for political gain.

And even among those groups, I don't remember it being a common argument that she should live because God would miraculously heal her.

The argument was that (they believed) she was still conscious and that her life was still worth living.

>I don't remember it being a common argument that she should live because God would miraculously heal her.

It was one of many arguments for continuing care. No, it wasn't the only argument, but I remember it being a fairly common one. I remember the dozens of websites popping up around the time and the frequent call for "prayer warriors."

there are still a few pages around, but a lot of them went away with the demise of Geocities, or just link rotted.

There's always a call for prayer warriors about literally every major news event--elections, judicial confirmations, catastrophes, droughts etc...

Yes there were people praying for her to be fully healed, but there's a difference between believing it's possible to be healed and arguing that we should keep her alive primarily because of that possibility.

The focus of the argument was that her life was already worth living because they believed she was still conscious, and other sanctity of life issues. At the end, the most common argument was that it was cruel to deny someone food and water. They were talking about how the family couldn't even give her ice chips.

The pro feeding tube people believed she should keep being fed regardless of whether God was going to heal her.

> The national debate was mostly pro-life groups trying to spin the situation for political gain.

That is what I would call a distinction without a difference. The underlying motivation for those actors is still the same no matter you call it religion or politics. They appealed to the identity of the religious and largely got the response they wanted. Same thing Russia did with BLM except Russia was inciting both sides.

Christian's believe in miracles/supernatural by definition. This includes faith healing. It absolutely prevalent everywhere in the religion and its different sects. The Terri Schiavo incident was not specially exempt from this belief.

>Christian's believe in miracles/supernatural by definition. This includes faith healing.

The first assertion is true. The 2nd doesn't follow from the first--many Christians don't believe that miraculous events still happen. Faith healing in particular has a very specific meaning, and many denominations outright condemn it.

As to what extent belief in the possibility of miraculous healing affects the vast majority of Christian's actions. I'd say no more than the belief that there is a tiny chance that a science might be wrong about a diagnosis affects a non-believer's actions.

>It absolutely prevalent everywhere in the religion and its different sects. The Terri Schiavo incident was not specially exempt from this belief.

People existed who believed that there was a small chance that God could choose to heal her. It doesn’t follow from that premise that these people were against removing her feeding tube because of that belief--it certainly doesn't follow that the broader Christian community was against it because of that belief. That was not the stated reasoning of the vast majority of her parent’s supporters.

This case just doesn’t provide evidence that Christians are more likely to pursue aggressive treatment or less likely to accept death because they believe God will save their family members because there was no national debate about miraculous healing.

The national debate at the time was primarily about whether or not she was conscious and was her life worth living, whether or not it’s cruel to kill someone by denying food and water, and whether or not denying food and water through a feeding tube is the same as killing someone.

> The 2nd doesn't follow from the first

We'll have to disagree on that. I did not assert there is a 100% correlation. I did mean to imply there is a high one.

> many Christians don't believe that miraculous events still happen.

I reject that assertion. I believe nearly all Christians engage in intercessory prayer at least once in a great while. Doing so shows they believe in the possibility their prayer coming true.

> It doesn’t follow from that premise that these people were against removing her feeding tube because of that belief--

You are overlooking the fact the main court challenges were by her parents on the basis she was not brain dead when in fact as a point of knowledge she was. They held the belief she might recover even after numerous experts and medical scans showed the damage was irreconcilability permanent. They then went further to cloak the case in religious themes. There were several organizations with strong ties to faith healing working with her parents. There was a large volume of innuendo and direct appeal to faith healing for the duration of the event. Some of it's even still around if you look.

This was similar to the Dover intelligent design case in that the side holding supernatural belief doesn't come straight out and say what their true beliefs are, and for good reason. Instead they attempt to sow uncertainty in court, in hopes of what they belief will come true.

> there was no national debate about miraculous healing.

You're right on that mostly, but only because it's very rare to find the open questioning of another Christian's supernatural beliefs in America. Even Mormons are generally afforded that. I won't speculate as to why that is.

I was raised evangelical, specifically Southern Baptist. There is a relentless focus on positivity. On prayers being answered. The person, that you're replying to, got it largely correct, at least as my childhood faith goes.

Sure, even the most deluded Baptists realize death is inevitable. And they're not entirely hostile to DNR. But their approach to the sanctity of life, and the countless stories of last minute miracles, means they will take an aggressive approach. "Pulling the plug" was often considered suicide / murder, and many in my church considered it a start to mass euthanasia of the old and chronically infirm.

Perhaps your experience in Christianity is different. But you should educate yourself and realize your experience is far from universal. The brouhaha over Terri Schiavo was not an anomaly in my former faith. The evangelical approach has created much suffering for people in end of life care. I have no qualms about tarring such people for what they perpetuate.

I was also raised Southern Baptist (though I’m a liberal mainline protestant now) and my dad was an assistant pastor/choir director for most of my childhood. I couldn’t disagree with many aspects of Southern Baptist theology and doctrine more, but this was not my experience at all.

Sure people prayed for sick family members, but the focus was always more on repenting and being reunited in heaven than it was on staying alive via miracles. If anything, in my experience, devoutly religious Southern Baptists tend to be more accepting of death than less religious people.

>"Pulling the plug" was often considered suicide / murder, and many in my church considered it a start to mass euthanasia of the old and chronically infirm.

I agree that evangelicals tend to be very strongly against assisted suicide. Part of that is that anti-abortion activists groups are also anti-euthanasia and part of their tactics include scaring old people by convincing them that assisted suicide will eventually lead to forced euthanasia.

I don’t however believe that most or even very many evangelicals believe that removing someone from a ventilator is equivalent to suicide/murder.

We apparently had vastly different experiences within the same denomination. Prayers were almost always for healing. Repentence almost never came into it as the subject of the prayers was usually "saved". Nor were the prayers for being reunited in heaven because that was assumed to be a given. Feeding into all of this were the half-baked stories from the pulpit of healing. Of some miraculous last minute renewal of health. Always the result of praying, fasting, etc.

Once the death happened, they were accepting of it. But they fought like hell until that moment.

This was my experience. There is (or used to be) some variance between SBC churches, so I don't doubt your experience was different.

>Prayers were almost always for healing. Repentence almost never came into it as the subject of the prayers was usually "saved". Nor were the prayers for being reunited in heaven because that was assumed to be a given.

I didn't mean the focus of prayers. I meant the overall focus--sermons, Sunday school etc...

>Feeding into all of this were the half-baked stories from the pulpit of healing. Of some miraculous last minute renewal of health. Always the result of praying, fasting, etc.

I've heard thousands of hours of sermons in multiple SBC churches from dozens of pastors, and I've been to multiple conventions as a delegate. While I have heard stories about miraculous recoveries from the pulpit, they were fairly rare and not an important focus.

The focus on miraculous healing sounds more like a charismatic church than an average SBC church.

Now as you said, there is a lot of variation among SBC churches. It sounds like the churches you were involved in had a much more of a charismatic bent than was common.

Not charismatic in the slightest. But my church definitely put the "Southern" in Southern Baptist. Very folksy at times. And when I say "healing", it was always healing from God. There was no belief in faith healing.

And on top of all that, I sometimes conflate my "church" memories with school. I was sent to a strict Baptist Christian school. A very conservative and horrible place which often made my church look like a bunch of hippies by comparison. Sometimes the terrible theology from one bleeds into the other.

Now Episcopalian, I grew up Southern Baptist, in the First Baptist Church of a mid-sized Texas city. There was a world of difference between the prevailing attitudes of mostly-multigenerational Baptists (at 5+ generations, you might even call us "ethnic Baptists") in a congregation with loads of doctors, teachers and very successful businessmen, and one with relatively recent converts and not many professionals. My Sunday School teachers always assumed I was going to college, and were proud that it was a competitive East Coast school.

My mom went through her metastatic cancer surrounded by an amazing hospice chaplain who happened to also be her Sunday School teacher, helpful Sunday School classmates and other church members, and realistic expectations all around. She was pretty blunt but cheerful about what was happening, and insisted on a DNR when it started looking really futile, which one of her fellow Baptist friends witnessed without hesitation.

It was a great comfort to be able to begin her obituary, "she passed away at home, surrounded by her family and friends," and her church community believed that she went to meet her Lord in peace.

> Christianity has taught many to sincerely believe that Jesus himself would step into the room and heal their loved one, therefore every attempt must be made to save them.

This is a completely unsensitive and arrogant comment. Replace 'Christianity' with 'Muslim' or 'Jewish' and see if you still would've pressed the submit button.

Further, as a Catholic who has many friends and family of different forms of Christianity, your opinion-stated-as-fact is not accurate in the slightest.

It's also business. The hospital looks at how much money they will make vs lose if you stayed at the hospital and weigh it against the probability that you will survive. If it works against them they push towards hospice.

I recommend this article for another essay on this topic: https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...

It really boils down to quality over quantity. After all, I'm sure most would choose to die comfortably in their bed after a week rather than in a few months all while in excruciating pain.

I'm not so sure.

I think I'd lean more towards quantity if it were a choice - my kids are very young though so right now I just want to know them for as long as I can.

It is a difficult question for sure but in some cases your choice is between heavy medication in a hospital that makes you unable to spend quality time with your family. While the other option might mean you would die in 2 months instead of 6 months it might also mean that during those 2 months you would have the strength to play with your kids.

Obviously but that's not the choice people make. Medicine is full of uncertainty.

There is a current trend to enable this peaceful dying and I'm a huge fan of allowing people to have the right to die.

But absent cost as a factor (I don't want to blow all my savings on myself - rather leave them to wife+kids), pain isn't a reason for me to go.

My early years were in the rural Third World where I had a whole bunch of near-fatal diseases as a young child and (unrelatedly) nearly committed suicide when I was a late teen, early adult.

The one thing I'd really like is a "resuscitate at all costs" marker. Imagine if there were a consent token marked upon your body, written into your bloodstream. Medical staff just test it and it says "let this man die", "put this woman through all pain so that she may have a few more days", or "kill this person actively if this happens".

There is pain so unbearable I want to quit. But I was wrong so many times in the past. Put me through it again and I'll want to quit but if I make it I'll be glad I failed to.

Force me to live. Let me say I must be forced.

This reminds me of this Planet Money episode about a town, where people casually talk about their terminal treatments and death. It turned out that most people chose a rather natural death when the choices are given. It was originally started by a nurse who wanted to reduce the burden of a family, but the town ended up with the lowest Medicare spending because of this community custom. It was a very thought provoking.

https://www.npr.org/sections/money/2014/02/28/283444163/epis...

Two sides show up here, fear and avoidance of pain and suffering :: fear and avoidance of death.

Most of the comments here advocate accepting death to minimize pain, but it doesn't have to be one or the other. With the right mindset you can accept both gracefully.

A life in pain can be worth living without running towards or away from death.

Fear and avoidance of worthlessness.

When you really drill down everything is pointless besides the just being conscious.

Even that is a mixed bag most days.

So, I have been living with constant neuropathic pain for almost 4 years now. Unless you've experienced it, you can't understand what being in pain 24/7 for years is like. It takes a terrible toll on your mental health, and affects those around you too.

Getting through each day is hard, and it's really not so easy to just 'gracefully accept' that I'll be in constant pain for the rest of my life, which will likely continue to worsen over time and possibly spread to large (motor) nerves.

Your final point is valid, but at the end of the day it should be up to the affected person to decide.

My grandfather had a do not resuscitate legal order. However, they did not have that at the hospital at the time he had his final trip to the ER.

As a result the man went through a failed code attempt he did not want.

So It is pretty rough to read this article, because It describes the sad experience for the patient in such real detail.

This is very unfortunately a relatively common problem. Fragmented EMRs and lack of interoperability and data sharing are often to blame. So too is not telling your family what you would want.

This happened to both my parents. In my dad's case, they failed and he died. In my mom's case, they succeeded in saving her a few times even after she was brain dead. She had a DNR, but it wasn't an actual medical order from a doctor, but a legal document, so they ignored it. No fucking clue why.

I’m not sure but I suspect there is a big insurance billing associates with performance of a code.

I remember being 10 and seeing my dog Moglee crawl up a 150m driveway to see his family after being hit by a truck. I remember the blood from his mouth and how much he wanted to be with his family. It was 2 days after Christmas.

Recently my old cat Jackie passed away. The moment I saw her not pee in the litter box but instead leave tiny droplets on the floor, I knew it was time to start planning for what the next few hours were going to be like. She was deaf, blind, failed kidney, two times underweight, and a tumor in her mouth. Her inability to eat or relieve herself had peaked. In the next four hours she was euthanized.

There's many instances throughout life that you know there's nothing you can do.

This doctor was right, your everything isn't always to spend moments with doctors. Sometimes it's to make the final moments worth it. I wasn't with Moglee. No one was. I was with Jackie, but the vet talked me out of getting antibiotics so she could eat instead of starving to death.

The description of "popping" the ribs during CPR reminded me of this medical article in "comic strip" form:

https://annals.org/aim/fullarticle/2217632/annals-graphic-me...

Click on each panel to get a larger version.

"Popping" is a much better description than "breaking". In most cases the ribs aren't actually breaking, their dislocating and the cartilage that attaches them to the sternum is tearing.

If anyone else isn’t familiar with the term “code”: https://en.wikipedia.org/wiki/Hospital_emergency_codes#Codes

I am married to a ICU physician. Neurological Critical Care is their ultimate specialty, but they practice in all parts of the critical care system: Emergency->ICU/Neuro ICU.

It's a very emotionally and mentally taxing job. Basically nothing that arrives under your care is good news. Often you know the potential outcomes before anyone else, including the other physicians who are sending someone in to your care. A large portion of the job is telling other specialities "No", either because they haven't done their job or because the case is "non survivable". This is necessary because you have a very limited number of beds in an ICU and if you fill one, someone else might very well die while waiting to be prioritized in. Because of all that, you are almost never the 'hero' in the story. The very best you hope for is that people acknowledge that you were able to keep someone alive long enough to get the treatment they ultimately need, or you were able to stabilize them enough to move to a step-down or palliative care department.

Then there are the families. The vast majority seem (based on my external observation) seem to grasp what is happening and make reasonable decisions. There are some amount of them however, who are completely ignorant of the pain and suffering they are imposing on their loved one. Over time it seems like a young ICU physician goes from seeing these families as ill-informed and possibly well meaning to seeing them as selfish and uncaring.

Externally I would say that it seems like groupthink is almost always a component of the decision making process. In a setting where just a single partner or other person is making a decision, they have a lot of empathy, if it is a family or group, they have empathy for eachother, but not for the patient. At least not in the way they think they do.

I'm not sure where I am going with this other than to say that as an observer to this almost every day, this article really just scratches the surface of this issue. I shared it with my partner and another ICU physician and their reaction was "that's minor leagues after a while, but your first few do always stick with you" to "I don't know why I even do this job."

Current example: 87 year old patient, already has metastatic cancer, had a stroke and is being "maintained" entirely by machinery. The family "Doctor, you have to do everything, we want her to make it to her 90th birthday"

I don't have asthma. My doctor says I have something milder than asthma. I have a puffer, and if you put me in the same room as a rabbit or guinea pig I will be struggling to breathe in about 20 minutes. I've lied awake at night coughing and hearing the accordion-like chorus of my wheezing windpipe. But it's not asthma. It has, however, made me very aware of what it feels like when lungs are not working well.

Nothing scares me worse than death, but idea of my lungs slowly giving out over years is a pretty damned close second.

I'm a doctor, and what you're describing sounds like textbook asthma. It could be a mild form, but it may be worth it to have a second opinion.

You may also want to buy a peak flow meter to quantify the obstruction when you have an attack (assuming you never had a spirometry while obstructed). Something like this will do:

https://www.amazon.com/Quest-AsthmaMD-Lung-Performance-Meter...

You probably do have asthma. I'm a lifelong asthmatic and what you're describing is me on a rare bad day (it didn't used to be as rare as a kid, but is more rare for me in adulthood). You should probably get a second opinion, and an inhaler, peak flow meter, and a nebulizer as soon as you can.

I got worried about life expectancy for asthmatics recently, and it seems like, generally speaking, as long as it's well treated, the life expectancy is about the same as a non-asthmatic on average. You have to be careful when you have a severe asthma attack though, those can potentially kill you if you don't go to ER.

Here's an article from the CDC that includes a page that gives the breakdown of deaths and demographic breakdowns of it:

https://www.cdc.gov/asthma/pdfs/asthma_facts_program_grantee...

If you're actively wheezing at night, something is wrong and you need to get treated for it. I only have that happen to me once or twice a year, usually, and whenever that happens I'm taking medication to help combat it.

My attacks are very rare - basically only brought on by extreme spring cleaning without a dust mask (dust allergies), and I have a corticosteroid inhaler that I take through allergy season.

Either way, I'll have another conversation with my doctor. My understanding was that asthma was generally a lifelong thing - my breathing was fine until I was around 30.

There are two components to asthma: bronchial hyper-reactivity, and trigger factors. Trigger factors comprise allergies, physical effort, cold air, depending on the person.

Allergies often get better with age, but their exact pathophysiology is not well understood.

I think I would have said "Yes. She lived as long as it was physically possible."

If you have a loved one in this last stage care you can't have reasonable goals because nothing is reasonable anymore. Instead you measure success with time. The longer loved one 'lives' the better everyone did. It's irrational and harmful for everyone involved but that's how it is. That was actually what the person was asking when he ask if they did everything they could. Could she live longer?

My loved one today told me she would like to die on the operating table. She already had 4 head surgeries to remove her brain tumors. Last two last year left her physically disabled. She might need another one this year. The day after tomorrow we are doing her next MRI.

What is "the code" in this context? The article masterfully reveals details slowly over time, but I don't want to lean on my own understanding of what that means.

Doctors often use the term as slang for a cardiopulmonary arrest happening to a patient in a hospital or clinic, requiring a team of providers (sometimes called a code team) to rush to the specific location and begin immediate resuscitative efforts.

https://www.webmd.com/a-to-z-guides/code-blue-code-black-wha...

https://en.wikipedia.org/wiki/Hospital_emergency_codes#Code_...

Code blue is not literally used everywhere... many places in the US use a number these days like 99 for "Blue" and then other memorable two digit numbers for more specific, less emergent needs like respiratory support or rapid response. Same thing.

I feel like there's an inherent drift in the slang because part of its job is to not freak out bystanders, but once everyone knows what it means, you need to pivot to new slang.

Rather than slang, it's more appropriate to call it argot[1].

1: https://en.wikipedia.org/wiki/Argot

Technically it’s not slang (I took issue with that webmd calling it slang.. because it isn’t informal just nonstandardizd), it’s jargon. Because although different institutions do it differently, all this stuff is formalized pretty clearly.

There is both the PA codes, ie anything from fire (unsurprisingly often code red), active shooter, to rapid response (person still has a pulse but ain’t feeling so hot)... to full on code blue.. but most places I work these are “quick” numbers like 66 or 88.

I don’t think freaking out bystanders is a consideration.. since the non medical codes are often posted prominently in conspicuous locations, and the medical ones.. I mean who cares. But in most hospitals if you look near a nurse station you’ll find them not hidden. But who gets freaked out by a trauma alert or a code blue at of all places a hospital? there’s no saving those types.

Having worked in a number of places it is more about expediency and scale. Code Blue was fine in the 1960s.. it was basically a tack on to other colors and it’s not too confusing. Now fast forward and there are different types of teams you want to call... respiratory, rapid response, ACLS, police, psych.. colors don’t scale well for this unless you want to go off of roygbiv.. and then you’ve lost.

Edit: there have been efforts to standardize. In the US sometimes you get consistency in a region.

>"I wanted to tell him that if we had done everything we could she would have gone to the palliative unit or home on hospice."

I'm confused by this part. It almost implies that the code also involved intentionally not saving her

They did all that they could to save her from death, but in the author's opinion that's not what they should have been saving her from.

As an example, they intentionally didn't save her from the agony of receiving CPR.

CPR is brutal, both for the person receiving it and the person providing it. You crack the person's ribs and end up mushifying their chest if you persist in doing CPR too long.

The other thing is without an AED (a defibrillator) the success rate of CPR is quite low, one physician I know equated it to buying time for the brain, as he had never seen CPR alone bring someone back.

As far as I know (my wife is an emergency physician), despite what the name suggest, CPR is not really for "bringing back". Is a technique to keep the blood flowing so the brain doesn't suffer damage until other techniques are applied. Also, as she explained to me, the defibrillator is only used on certain kind of arrests, it can actually make things worse on others.

CPR circulates blood to the oxygen and brain, keeping it going long enough for the heart to (maybe) be restarted.

For the first few minutes after someone's heart stops beating, it probably hasn't actually stopped, it is just beating in a chaotic way that isn't actually moving any blood (this is known as "ventricular fibrillation, hence the "defibrillator"). The electrical discharge of the defibrillator is like someone standing up in a loud room and blowing an air horn. It shuts everyone up for a second, and hopefully the heart's normal "pacemaker" can take back over.

There are some medications that can be given to "strengthen" that pacemaker, and to make the rest of the heart a bit less "twitchy" (and therefore less likely to go back into a lethal arrhythmia).

There is a related arrhythmia known as ventricular tachycardia where the heart is beating too quickly to move any blood (and the beating is being triggered by random cells in the heart, not be the heart's intrinsic pacemaker).

If someone is unresponsive and doesn't appear to be breathing, high quality CPR and early defibrillation are what will help them. If you have an AED, put it on them and follow the prompts it gives. And AED will not do anything that would make the patient's condition worse (to hurt someone with a defibrillator, you need to be using a manually controlled one).

s/blood to the oxygen and brain/blood (and therefore oxygen) to the heart and brain/

That's what I get for late night commenting...

Obviously everyone is different, but I have never thought of CPR as "brutal" for the provider. Exhausting, certainly, but not brutal.

For the provider, this was primarily a reference to the potential emotional rollercoaster of CPR (depending on how empathetic you are).

That really hasn't been my experience. There certainly can be hard emotions surrounding the event (telling someone their loved one has died, etc), but CPR itself is pretty straightforward.

Definitely, I agree that the physical act of CPR is straightforward.

It read a bit weird to me as well, but they’re saying that would have been the best option many months prior

CPR done correctly can break your ribs. Those broken ribs can then puncture your lungs.

What he means is that they did everything they could medically, at the cost of broken ribs and punctured lungs. But that it was probably not the right thing to do.

"The code" is the attempt to keep the person alive. "Coding" is used as a verb either for performing "the code" or to describe a person dying.

Thanks, that makes more sense than the other answers. Strange to use a term like that in an article that is presumably for mass consumption.

Docility is a social network for psyicians, hardly a strange place to use medical terms.

OK then it makes more sense. Still, if they just rephrase the references to “code” anyone will be able to read it, but perhaps that doesn’t matter.

> “You all did everything you could, didn’t you?” he asked hopefully.

> I wanted to tell him no. I wanted to tell him that if we had done everything we could she would have ...

I struggle with things like this. Its like I want to answer accurately, but then have to consciously remember the culture and consequences. Other people are so natural at this

> I want to answer accurately, but then have to consciously remember the culture and consequences. Other people are so natural at this

(elsewhere)

> I had seen this person once a month obviously deteriorating in line with what every prognosis and statistic would say... it was a spot on analysis

IMHO these two are inextricably linked. Most people want to live in their own emotion-mediated reality. By not innately editing your own thoughts based on their emotional implications, you're able to arrive at more correct (but inconvenient) conclusions. But everyone else still has to take the slow road.

And yes, it's very hard to get doctors to break out of that mode when communicating. The vast majority of people they see need that mode, and it's very hard to directly convey that you are non-medical but still highly technical.

It's necessary because people have very different reactions. I remember when my doctor accidentally referred to my test results as a brain tumour (rather that the less immediately concerning to the layperson benign growth or glioma). I was thinking it's a growth that hasn't changed for five years and is barely visible on a contrast MRI (small enough that one of the MRIs reported that it wasn't even there) - it's nothing to worry about, but I can could tell that my mother was panicked. You have to convey the meaning and consequences, even if it's technically slightly inaccurate or imprecise - sometimes the technically correct answer leads to the wrong interpretation (as to treatment/prognosis), in part due to the emotional baggage it carries.

The interesting thing to me is that doctors die very differently from the rest of us. They’re far more likely to setup structures to avoid coding later in their life or when they’re dying.

I'm really curious about this, do you have more about it? It's almost like "what is the best way to go?" and people that are around it all day long probably have a decent idea of what they want

One article about it: "How doctor's die"

https://www.rd.com/health/conditions/how-doctors-choose-to-d...

This reminds me of the Charlie Gard case, and cases like it that seem to happen every year or so, where parents spend months fighting pointlessly in the courts to delay the withdrawal of life support for their already-beyond-saving child. It's distressing every time.

This article reinforces my view even more. We as a society needs to allow people to end their life in a medical environment and only if they're capable of making the decision on their own in a rational manner. I've witnessed horrible situations where the life is not going to improve and is intolerable for the victim who wants an exit even if it means death. Why do we allow our own selfish desires to have these people continue in pain and when the other person wants death.

Agreed. Both at the end of a life, and the start of one. The rationale around abortion tends to follow the same warped logic in my experience :)

The subjects are very emotional ofcourse, which makes doing “the right thing” extra hard in the best of circumstances.

They're very different, the parent talks about "when the patient wants death".

I'm in favor of letting terminal patients pull their own plugs. But I'm not sure it's a selfish thing when we don't allow it. I think it's because we value life so high that we would rather error on the side of caution..

Note. I do think we could be more flexible on this matter.

Exerting one's own values upon a person who values to die instead of be in pain is selfish. Its a my values are more of a concern over your values and when it's the circumstance of the person being in pain that wants to have choice over living or dying.

Well that was depressing. My wife has sarcoidosis.

However while depressing it's gloriously mind opening and motivating to do some quality stuff.

We had the exact opposite problem with doctors. My mother was near-unconscious, suffering intensely and we wanted it to end. The doctors could not and would not give her a quick exit. We finally got a family friend doctor to prescribe fentanyl and we administered all the patches at once and she died within 12 hours.

  Turn the light's out 
  when you're leaving.

  I want to 
  watch the car park empty.

  It's easy, 
  when they're strangers.

  To wave goodbye.

May she rest in peace.

FYI for those who are wondering, these are lyrics from the song "Lights Out" by Broadcast.

https://www.youtube.com/watch?v=aRUO411-vJ4 (audio of the track) https://en.wikipedia.org/wiki/Work_and_Non_Work (album it appears on)

"Everything we could" [and more than we should]

I can't help but wonder if there was anyone with medical training acting as a patient advocate in this and similar situations.

Doctors can undergo special training in 'palliative care'. These docs have a pretty broad spectrum in terms of when they become involved, but from my own experience they've been pretty good at being patient/family advocates to primary care teams. They should ideally get involved at the beginning of any chronic illness, to discuss goals of care regularly, and provide patients and families with resources for end of life care (e.g. hospice, home hospice, etc).

This is not the best explanation, but hopefully it brings you and other readers awareness of this growing specialty.

Palliative care is an incredible specialty. Something I wish more patients understood is that palliative care is not just end of life care. Their remit is the alleviation of symptoms and pain at any stage of a life limiting illness. In the UK many people consider palliative care to be synonymous with end of life care for cancer patients and are unwilling to be referred to them. This can lead to unnecessary suffering. Perhaps a re-brand is in order.. :/

This. This is messed up.

Much of our medicine feels like it's not meant for the patient, but for the people around the patient. We struggle to let the person go, regardless of their own - often voiceless - suffering.

We all feel pain. We all fear loss. Whose choice should it be to live or to die?

Could it be an extension of the perverse concept our society reinforces throughout life, that: suicide is illegal.

I feel that one rule ingrains in all citizens a notion that each of us does not have free agency over our own body. That someone else’s decision trumps our own regarding our own body.

I claim this is a perverse notion and the that feelings of the family in this article are a mere extension of this pervasive philosophy.

it stems from love. Nobody can truly accept their loved ones dying.

Maybe they did lie, but the core point is, did they do everything they felt they should ?

Arguably no: they should have stopped, reviewed, and helped her and the family decide to withdraw treatment and die with some personal dignity, but the time for that was far earlier.

Having had two in-laws die with medical staff disrespecting their end-of-life issues (in different ways) I feel quite strongly the 'do no harm' myth is being a bit over-extended. At the end, prolonging life does harm. Withdrawing anti-anxiety drugs does harm. allowing a surgeon to go ahead and risk a catastrophic stroke and loss of identity does harm.

It sounds like they did do that though:

> He had spoken with her family innumerable times explaining her dismal prognosis, the virtues of palliation and hospice care, and the harms of overtreatment. Like many families, anything other than a “full code” meant giving up on their loved one. In the midst of tragedy, changing that mindset, like the code itself, was often an exercise in futility.

Yes. He tried, and I like that. The system needs to change

I spent today in the hospital watching my grandmother come to terms that she is 99% likely on her death bed. I am happy that she chose a DNR over going out like this article.

I've thought a lot about death this weekend, as I knew what I was going into before I got here. The only real conclusion that I have is that I'd like to feel like I'm always doing my best to satisfy what I believe is a good life and to not be blindsided by it in life by coming to terms with it in a healthy way.

> “You all did everything you could, didn’t you?” he asked hopefully.

This may have been misunderstood by the author. The patient's loved one may have asked that question in a more general context, to achieve some form of closure. And the answer to this, truthfully, would have been that, yes, they did everything they could - especially in the early stages of the disease when there was still hope of minimizing the damage and/or alleviate suffering.

I understand the young doctor's judgement that the patient's loved one was partially to blame for the needless extension of the patient's suffering. It's a hard call to make, and people don't want to be the one who let a loved person go. They're afraid that they'll always be asking themselves the question whether they should really have given up on that person. That's why it's better to have the patient set the policy while they're still able to make that decision, precisely to not put relatives into that position.

Whenever I read something like this, I am reminded of several friends of mine who are physicians, and how a couple of them seemed to undergo personality changes during or after med school and residency.

After residency, they seemed to have lost an important part of their humanity - namely compassion and a desire to help people. It was replaced an air of superiority and contempt for others, tinged with cynicism and a joyless gallows humor.

I'm not sure how common this is, or how my other physician friends managed to avoid it, but it was a disturbing and obvious change that bothers me to this day.

(Though now I think about it one thing some of them had in common was wisely quitting general surgery residencies because of the massive and unprofessional mistreatment of residents as well as rampant sexism.)

“Being Mortal” by Atul Gawande goes in-depth on this broad topic, highly recommended.

I'm sure when you're in the medical field for a while, it's impossible not to think of people as meat, but it is frustrating to be judged for making difference choices.

My mother, over the past few years, has been going through the consequences of being a lifelong smoker. She has had cancer, aneurysms, a heart attack, and multiple breathing crises resulting in trips to the emergency room and weeks in the hospital. She has survived all of this, despite the doctors' predictions and in some cases best efforts to facilitate those predictions. They see an elderly woman with multiple terminal illnesses in pain, so they give her morphine, it depresses her breathing and causes hallucinations, and she looks and acts the picture of someone who's not going to make it to next week. That happened a year ago and my sister figured out that she was being overmedicated, and a short time after stopping the end-of-life treatment, she was able to go back home. Eventually she got enrolled in Hospice, which at first meant access to some equipment and a bit of "help", but before long they brought the morphine into the house to deal with some back pain, the amount escalated, and she ended up back in the hospital where she stopped eating, got an untreatable bowel obstruction, and rapidly lost a ton of weight. She wasn't actively being treated for anything, and all of our interactions with the doctors and hospice people were about ensuring there would be no life-saving interventions, so we questioned the point of being in the hospital. Once again, off the morphine she came back to life and went home. She didn't want to die. We have had years of decent quality time together that would not have happened if we hadn't taken an active role in preventing her from being prematurely shoved down the "old person dying" chute.

I am a huge fan of modern medical science. It saved my mother's life and the lives of many people I know. At the same time, people are human and do human things. Not everyone values the same things. My sister and I found it very upsetting to be constantly judged for wanting to do anything other than medicate my Mom to death, and as it my be obvious from my tone, I'm holding a grudge. I feel compassion for the author of this article for the trauma they had and have to experience, but I do not respect them for it is obvious they don't respect the family with the judgmental and holier-than-thou attitude.

I agree that frank discussions between the healthcare team and patient/family would be ideal. Suppositions that the team knows best, intimidation from lack of knowledge, and unrealistic expectations can lead to unhappy outcomes for both parties. I'm sorry that your mom didn't receive the care that you and your sister felt she deserved. Messages like this will help others.

My father in law has sarcoidosis like in this article, twice they were sure he was going to die and called in a Priest each time. He is still alive now decades later.

I wish the author would have done more to explain the medical terms. Presumably, the audience is not people who know what sarcoidosis is.

Just the opposite. Doximity is a network for medical professionals; if you Google it they expliticly advertise "no patients, just clinicians".

If I ever end up bedridden with no hope for a viable recovery, please just pull the plug or shoot me in the head.

Thanks in advance.

This article, and most comments here, seem to be of the opinion that most doctors, friends, and family members don't present "accepting death" as a valid option, but my experience has been the opposite.

5 years ago, my mom was given a cancer diagnosis, and a life expectancy of 6 months. And from that day forward, there was no shortage of people lined up to tell us "there's no shame in giving up", "you don't have to fight", "die with your dignity", and "don't prolong the invevitable".

What was far more rare were the people that reminded us that anything was possible. Other survivors who had also been given months to live with an untreatable cancer, only to "still be ticking" decades later, with an active life. People that offered hope in traditional chemotherapy, clinical trials, alternative approaches like special diets and exercise.

None of these people said to fight at all costs -- to live a hellish and painful life. Instead, they offered the alternative -- that despite what the doctors were saying, the doctors didn't know how long or how well anybody would live any better than we did. They didn't tell us to ignore the doctors' prognosis, only to be open to the possibility that the prognosis would be wildly wrong, even if the diagnosis was right.

These people were the minority, but I'm so thankful we had their input.

My mom lived, without cancer growth, for over 4 years, when she was told not to expect 6 months. And while we had plenty of rough days, we had so many amazing days as well. While I can't speak for my mom, I'm as certain as I can be that she wouldn't have traded those days for anything.

This wasn't for lack of concern that she was fighting just for me. I would ask her at times whether she was just doing this for me. I'd tell her that, though it would be hard, if she decided she was done, I would support her. Her reply -- that she was grateful for the life she was still living, and didn't want that to change.

And yet still, for 4 years, I had to constantly deal with nurses she would meet, at work (as a hair stylist), online, etc. who would talk to her. Inevitably the conversation would turn toward her cancer diagnosis, and when my mom would tell the nurse or health care worker the type and stage of cancer she had, immediately the happy conversation would turn grim.

Sometimes, the nurse would say "I'm sorry" to my mom, as though (in my mom's own words) my mom had already died.

Others would come right out and say "you know that most people don't even live 6 months with that", as though somehow my mom would have made it through regular doctors appointments and treatments without a single person telling us what the prognosis was. Then came the dreaded "no shame in dying" part.

In every case, I'd find my mom depressed, defeated, and heart broken. It wasn't that she was hearing information she hadn't heard before, but rather, she was being reminded by people that presented themselves as smarter and better than us, that the prognosis was bad, that we should just accept it, and in some cases give us the impression that it was wrong to even want to fight it, as though every day that we already had together beyond that 6 month mark wasn't even deserved.

I would have to remind my mom that, at 1 year, 2 years, 3 years on, she had already proven the prognosis wrong. And again I would ask, with guilt that I was the only reason she held on, whether she was done fighting, and made sure she knew I would support her either way.

I don't relay this to try to give false hope, or encourage people to live horrible lives when they're ready to move on. I say this because I truly believe my mom would not have been happy with her life, however long, had we just accepted it from day one, and done nothing to fight it.

I say this, mostly, because the people telling us to give up or even just reminding us of how this was supposed to end, no matter how well intentioned, had NO idea the damage they did to my mom's spirit or quality of life, even as she was seeing amazing results that were not supposed to happen.

And also, the people who helped us fight, I credit to giving us the time we had, and the quality of life she had. Time that I am so grateful for.

If I have one take away to give, it's this -- if you meet someone who's dying, no matter what you believe, the best thing you can do is offer simple encouragement. Tell them, simply, "fight if you want to fight, and amazing things might happen. Don't be ashamed or pressured against accepting it when you feel like it's time. But YOU decide that, and NOT your friends, family, doctors or nurses".

This is very well written - https://www.saturdayeveningpost.com/2013/03/how-doctors-die/

Reminds me of the slow code article a while back

Quality above quantity.

We didn't do everything we could, but this goes beyond palliative care.

We underinvested in research. We aren't as far along as we could be, and we're moving slower than we can.

We, the voting public, are responsible for this tragedy. The US allocated just 2% of its budget to scientific research, and we elected officials who want to push it lower still.

There shouldn't have been a tradeoff between quantity and quality of life. The real tradeoff was made years earlier, between research and slightly more material comfort. We chose material comfort, and she paid the price for it.

I want to go out as a result of a series of violent mistakes trying to save my life. Why would anyone want anything else? Peaceful death is basically suicide.

Why do doctors continually perpetuate this notion that slipping softly into death (palliative care, hospice) is preferable to continually trying to avoid it by way of riskier and riskier attempts at treating the root cause?

At the very least, we could be honest about it and say what the real reason is: we don't have the resources to try everything for everyone, and normalizing a set of not-quite-everything standards is the best way to keep the average level of care up for everyone.

I 100% agree with you. Though everyone should be able to make their own decision and because people are diffrent they will come to diffrent conclusions about what the right path for them is. We should not be trying to impose our path on other people.

That said I'm going to speculate that as a doctor being asked to do long series of futile actions while watching a person die has to be traumatic. So I can understand why many doctors like the idea of palliative care.

The fact that doctors overwhelmingly choose non-intervention and palliative care for themselves at their end strongly implies that they're not merely traumatized as doctors, but also that they feel it's terrible for the patient.

> I want to go out as a result of a series of violent mistakes trying to save my life.

The problem is that excruciating pain is only obviously better than death if there’s something positive at the end of it.

Otherwise it’s comparable to being tortured 24 hours a day for the rest of your life.

Sorry, but excruciating pain is always better than death, because death is eternal nothingness. At least excruciating pain is something.

Have you seen someone in excruciating pain for a long time without hope for improvement or experienced it yourself? It's really easy to talk tough while you are healthy but your opinion may change once you are in that situation.

From what I have seen I would prefer to go out in dignity at my own will instead of being an experiment of the medical machine. Others may feel different and I think both paths should be available.

Yes. And no, my opinion hasn't changed.

What does dignity buy you if you're dead? Nothing. You can have yours, I'll spend mine to stay alive as long as possible.

That's your choice. As I said both options should be available.

In the end you will only know how you will really feel once you are in such a situation.

such absolutist statements make me think you are relatively young and likely have not experienced any form of chronic pain, mind you not momentary pain that you 'rise above' but constant, unwavering, always-on pain. that changes perspectives, especially when you are old and don't have much to look forward to.

These kind of ageist arguments are pretty annoying. Some people have chronic pain and still want to live as long as they possibly can.

There’s a significant difference between chronic pain and crippling state of existence that requires your ribs to be broken to sustain life.

From my understanding: any CPR done properly has a risk of breaking people's ribs. You've got to push quite strongly to resuscitate the heart.

If you're not coming back, the doctor performing CPR will push harder and harder to try to get you to breath again. And yes, that means broken ribs.

Medicine is ugly. We rip out veins in the legs and attach them to the heart to "cure" blocked arteries and prevent heart attacks. We pull tendons out of corpses, drill screws into bones, and re-attach the knee bones... to provide additional support to torn tendons.

And in some cases: doctors tell the patient to live with the condition (ex: some peculiar shoulder bone breaks), because the treatment is sometimes worse than the ailment.

---------

I don't know all treatments or all ailments... and even doctors won't know all the possibilities. But, the overwhelming expert opinion of the health care industry seems to be against full code. (and btw: they make money when they drag lives out... they have a financial incentive against this recommendation. The longer they drag out your life, the more money that they make.)

I suppose I might choose the excruciating pain if I were alone on a desert island with nobody watching. But if my wife and children were sitting round my death bed I think I'd prefer, for their benefit, to die in a dignified way. And in a timely manner so as not to keep them waiting. Death is not eternal nothingness. Life goes on.

Death absolutely is an eternal nothingness, don't fool yourself. Your kids, your wife, none of that matters after you're dead. It's literally irrelevant at that point.

My kids and my wife absolutely matter after I'm dead. I'm not so self-centered as to believe that they exist solely to give me pleasure.

To you? Nope. Nothing does, you're dead.

You don't feel the same way about the """nothingness""" before you were born as you do after you die. You're just weirdly flexing your ego in the most pompous way possible in this thread.

That's a crazy argument, of course I don't feel the same about something now that I have it...

Mark Twain was quipping, not building a life philosophy.

You dont seem to understand. There will be no you to have lost it. There was no you to gain it.

What you don't understand is there is a me now, currently, so this comment/argument is completely pointless and generally wrong.

> there is a me now

Like I said, your ego-- the sense of self-- is doing a weird flex. But ok.

Not weird, and not a flex, I'm simply acknowledging it's existence, unlike apparently everyone else here.

Is there?

Death is not eternal nothingness. Eternal implies that something "is". Death "IS NOT".

Seems unlikely.

Pretty much every healthcare worker I know, religious or non-religious, leans towards DNR over "Full Code" on themselves. To the people who have watched others die on the operating table, they do not believe that the final moments in a hospital is worth it.

Death is inevitable. You can either have it with dignity, perhaps a week or month earlier than usual. Or, you can drag it out for weeks or months in a hospital (possibly bankrupting your family). Regardless, you'll die eventually.

There are plenty of stories about brain-dead patients staying in a hospital for years (!!) while their bodies atrophy and inevitable brain damage prevents any hope for a reasonable life afterwards. Modern science can keep someone technically alive, but at an unfortunate cost.

Its far luckier to die peacefully (and suddenly) in your sleep... without dragging out your life. Doctors for the most part know this, but they don't want to change American culture or trample on people's right to choose how they die. But its pretty clear what option is preferable.

It's not only likely, it's certain. Death is nothingness, not peace, and pretending like it's preferable is basically acquiescing that infinite nothingness is preferable to nothingness, which is definitionally false.

There is literally no such thing as a peaceful death. It may sound poetic, and it may be comforting, but it's not true or real in any sense to the people actually dying.

The reality is, it's peaceful to the living, and so we falsely optimize for that.

> Death is nothingness, not peace, and pretending like it's preferable is basically acquiescing that infinite nothingness is preferable to nothingness, which is definitionally false.

This seems to be in the realm of philosophy, meta-science and religion. I don't really want to bring the discussion there, but I simply need to point out that many, many religions (and atheists) have different opinions on this matter. For example, a dignified death may bring you closer to the creator (emphasis on "dignified", because suicide doesn't count for some religions).

And I don't believe there's any way to properly gather evidence about what happens to someone after they die. And without establishing our religious ideals as ground rules, I don't think we can really have a good discussion on the matter.

This article only talks about useless symptomatic treatments, not about effort at treating root cause.

If you’ve just been diagnosed with something terminal you’d want to try every experimental treatment no matter how violent or dangerous. But if you’ve already established that nothing is working and your body has begun the shutdown process I don’t see why you’d want your last feelings to be shocks to your heart, your ribs broken or your throat being cut and plastic tubes shoved in.

Emergency reactive procedures (codes) for a 20 year old who had an accident on the way to the gym and a 80 year old in the last stages of terminal cancer are the same, the article is arguing that they shouldn’t be.

You seem to be thinking of a case where an otherwise healthy person is dying of an incurable disease, and risky treatments might bring their health completely back.

I don't think that's an accurate portrayal of most sicknesses and death in a hospital for the elderly. It's more like a progression of failures and problems (or a constellation), some mitigated, leading to more or less prolonged suffering with no end in sight but death. An 80-year-old with Alzheimers, diabetes, and cardiac problems doesn't have a "root cause" that you can just fix with an experimental treatment. They're old. We all get old. In that kind of case, I hope the doctors' perspective makes more sense...

No, it makes zero sense.

My grandfather had advanced Parkinson's, but had zero intention of dying to it or its cornucopia of related symptoms/effects. So what if he has a major disease that made life many orders of magnitude worse for him? Life is still life, and death is still infinitely worse.

Giving up and accepting death may seem reasonable to some, but not for me or my grandfather. There's always a root cause, and there's always a way to keep going.

Giving up is suicide.

>Life is still life, and death is still infinitely worse.

I assure you that this is untrue. There's a reason why people on the upper floors of the World Trade Center jumped from the windows, and it's not because they expected a soft landing. There are many, many things in this world worse than a peaceful death.

I assure you it is not untrue.

People failing to realize a truth doesn't make it less true.

Peaceful death is suicide, if chosen. Period.

> Peaceful death is suicide, if chosen. Period.

Then suicide is preferable.

Stop using the word suicide as if it was an insult.

I feel like that is a crappy example to shove in people's faces. I guarantee you there is a nonzero amount of people who did that on 9/11 who could have made it down safely and enjoyed the rest of their lives.

Actually it's a perfect example of the other kind of suicide, not due to permanent illness so much as temporary circumstances that could be resolved and lead to the person not wanting to do that. That is something for which friends, family, and medical professionals ought to intervene.

If you down voted this please explain your position to enlighten others. Otherwise I am just going to assume you did so out of poor life experience. Suicidal people often need and can use help, after which they can return to not being suicidal. Gp's 9/11 reference was also kind of nonsensical, and I say that as someone who was in the DC area at that time.

The North Tower of the World Trade Center was engulfed in flames above the 93rd floor and suffered severe structural damage, cutting off all possible routes of escape. At least 1,300 people were trapped above this point; none of them survived. Even if the towers had not collapsed, these people would almost certainly have died from smoke inhalation due to the difficulty of firefighting and the impossibility of rescue.

The South Tower was struck more obliquely leaving one intact stairwell, but this was difficult to locate and descend due to the huge quantities of thick, black, choking smoke. At least 600 people were unable to find an escape route before the tower collapsed. Most of these people would have likely died of smoke inhalation if the tower had not collapsed.

My reference to 9/11 was, in my opinion, entirely apposite. On that day, nearly 2,000 people were faced with no choice other than the manner of their death. Around 200 people chose to jump.

https://usatoday30.usatoday.com/news/sept11/2002-09-02-jumpe...

This is much more detailed than your original statement. Thank you.

I still think the number is likely nonzero (a word I chose to indicate it may not be a high number but it is not zero) and my earlier point is reenforced: they were forced into it by circumstance, and would have taken another path had it been on offer.

It was most certainly not a "peaceful death".

Edit: I will be honest, some of my reaction came emotionally from offense at the implication that theirs was somehow a "peaceful death" (your words). The USA Today piece you cited says it was officially called "homicide". That is accurate. Assisted suicide is a totally different thing.

My grandma had cancer. A doctor had ignored her complaining of throat pain for too long, and it didn't look good. The doctor who told us chemo was an option was pushing my grandma really hard to just go ahead and die instead of trying chemo. It was horrible, and I hate the attitude that people shouldn't try so hard to stay alive.

My grandma tried the chemo. She did die anyway, which I'm sure some folks will see as a reason that she never should have tried.

Would it be OK if your gradma had decided against chemo and the doctor was pushing her really hard to take it?

Doctors bullying patients seems like a problem regardless of the direction they're pushing them.

>Life is still life, and death is still infinitely worse.

And if that's truly your choice, you can choose it. In fact, as the article makes clear, your choice is the default one as things are now.

But you should understand that other people's choice might be different from yours, and you don't have to right to insist that they get your preferred treatment if they don't want it.

> there's always a way to keep going.

Did your grandfather die? I'm assuming he did, since you don't refer to him in the present tense. If so, doesn't that falsify this statement?

The Norse of old would agree with you, where if you die a "straw death" outside of battle you don't get to go to Valhalla. But apparently if you stabbed yourself on your deathbed you still got to go to Valhalla?

>Why do doctors continually perpetuate this notion that slipping softly into death (palliative care, hospice) is preferable to continually trying to avoid it by way of riskier and riskier attempts at treating the root cause?

I think one reason is because they see people with terminal diagnosis take a beating from heavy medication like chemo and being unable to spend time with their family instead of just taking pain killers and spending their last months with family and friends.

In many cases, there are no mistakes made. Imagine a doctor saying: "You're going out but if we inflict pain you will stay longer." What would you choose? Peace or pain? What would you want your relatives to choose for you? In case you can't decide anymore?

If the rest of my life will be nothing but pain, I don't think I'll want it.

Death is not peace, stop perpetuating that lie.

Stop trying to pass off your own personal opinions as facts.

Stop trying to interpret my opinions as facts. Are you seriously fooled into thinking what I'm saying here is even arguably fact? Of course it's my opinion...

If you call something someone else says a lie, that's not a statement of opinion. You're saying they said something false. That's a factual matter.

An opinion can be false/wrong/a lie.

Something can't be an opinion and a lie by definition.

Lying is consciously uttering something you belive to be untrue. It can't be your opinion at the same time.

So unless you're planning to insult the people you are talking to by calling them dishonest, you should cease this way of discussing the topic.

It's obvious you care greatly about this matter and tempers can understandably get heated, but people calling each other liars rarely have productive discussions that leave all parties wiser.

Something can be an opinion and a lie by definition.

Also, I don't care if I insult people by stating facts, including, "Your opinion is wrong/a lie." Getting upset about a fact is yelling at a cloud.

And why is it obvious I care greatly about this matter? Because I've written less than a page's worth of content on the topic? Seems like a weirdly low bar...

> I don't care if I insult people by stating facts, including, "Your opinion is wrong/a lie."

You can't know their opinion is wrong, because you've already admitted that's just your opinion. It's not a fact. Your opinions are not facts.

That's not how opinions work at all. An opinion can be true or false, justified or not. I'm not countering anyone's opinion with my own opinion, I'm pointing out facts that disprove those opinions, and then offering my own alternative opinion that isn't proven wrong.

> I'm pointing out facts that disprove those opinions

You have pointed out no fact that justifies your accusation of lying.

Ah so now you rope back around to the actual conversation. Nope, you've poisoned this well too much with your semantic nonsense, you don't deserve to benefit from anything I have to say about death.

> you don't deserve to benefit from anything I have to say about death

You've already said what you have to say about death pretty clearly, so if I were going to derive any benefit from it, I would have already done so. But if it will set your mind at rest, no, I haven't derived any benefit from what you have to say about death.

All you're doing is being petty and generally terrible. Why?

I've been watching this thread in amazement. If this is how you communicate with people you'll often have your style described as petty and terrible. Are you just repeating what you hear yourself a lot?

> Something can be an opinion and a lie by definition.

Where opinion means "belief held", that's an obvious oxymoron.

> Also, I don't care if I insult people by stating facts, including, "Your opinion is wrong/a lie." Getting upset about a fact is yelling at a cloud.

Let me quote yourself at you:

> Stop trying to interpret my opinions as facts. Are you seriously fooled into thinking what I'm saying here is even arguably fact? Of course it's my opinion...

As another commenter already said, you can't have it both ways. Right now you're directly contradicting yourself.

> And why is it obvious I care greatly about this matter? Because I've written less than a page's worth of content on the topic? Seems like a weirdly low bar...

I said so because that would excuse your uncompromisingly hardheaded and rude conduct towards virtually everyone in this discussion. I often try to think the best of people.

I have a hunch this will go nowhere and I am not going to reply to whatever comes next.

Epistemologically, there can be false beliefs, so no it is not an oxymoron, obvious or otherwise. Basic philosophy.

You're right, this will go nowhere because you're trying to have a semantics argument while also being wrong about the semantics you're trying to correct.

And again, I don't care if you find me to be rude. Bringing it up is distracting from the larger conversation, about how we're being sold a bill of goods by doctors about "peaceful death" because it makes their lives easier to think about, at the cost of giving up earlier on patients.

> we're being sold a bill of goods by doctors about "peaceful death" because it makes their lives easier to think about, at the cost of giving up earlier on patients

At last, an actual substantive statement. But unfortunately, it's still your opinion.

I have no problem at all with you choosing to fight to the last and continuing to seek treatments right to the end even if you are diagnosed with a terminal illness where all known treatments have slim to no chance of success. But that's your choice, and other people might choose differently. And the problem with accusing people of lying simply because they don't share your opinion and would make a different choice from yours isn't that it's rude (though it is); it's that it's not justified.

So to be clear, you can obviously see when I'm expressing my opinion, but due to semantics of English, you demand I express it in a way that doesn't offend you?

Jesus dude, why the fuck would anyone listen to that level of hubris? What the hell kind of incentives are you giving me here, because right now my only incentive is to laugh at the person who can't actually have a conversation because they're too busy derailing it with semantic arguments about things they did understand, but didn't like how it was presented.

> So to be clear, you can obviously see when I'm expressing my opinion, but due to semantics of English, you demand I express it in a way that doesn't offend you?

It has nothing to do with offending anyone. (Note that I explicitly said that rudeness was not the issue). It has nothing to do with how you presented what you said. It has to do with the substance of what you said--your accusation of lying--being unjustified.

It's not unjustified, and even if it was, a belief can still be true or false.

Again, I urge you to read about epistemological knowledge. Basic philosophy concept that will educate you.

> you can obviously see when I'm expressing my opinion

Yes, exactly, which is why I keep objecting when you express your opinion but then treat it as if it were fact.

I don't care if you object, I'm not going to stop.

> You're right, this will go nowhere because you're trying to have a semantics argument while also being wrong about the semantics you're trying to correct.

Yikes. Okay. You goaded me into replying.

About lies and opinions: If you said something factually incorrect that you nevertheless believed to be true at the time, you were not lying.

That is why it can't be a lie when you say something that you honestly believe (i.e. your opinion).

Now it might be that "Lie" means something different in your culture, but in the English language it means "[..] an assertion that is believed to be false, typically used with the purpose of deceiving someone". (https://en.wikipedia.org/wiki/Lie).

Here's a good article on the matter: https://philosophynow.org/issues/27/The_Truth_about_Lying

Now whether I lied when I said I would not reply is for you to figure out.

Sorry, you can't have it both ways. Opinions are opinions: nobody knows for sure which ones are right or wrong. IMO you should retract your accusation of "lie" since you have admitted you were just stating your opinion. Your opinion might not agree with someone else's opinion, but that doesn't justify you accusing them of lying.

Not all peace is welcome, mind you.

Most end-of-life decisions don't involve an otherwise healthy young person who might expect another 50 or 60 years of good-quality life, they involve someone who has multiple serious health problems and is definitely going to die of something in the very immediate future.

We're not talking about saving lives, we're talking about briefly delaying an inevitable death. How much suffering would you be willing to endure for the possibility of another few days or weeks in a hospital bed?

Doctors know what these deaths look like. They know what it feels like to effectively torture someone for no good reason. Doctors overwhelmingly choose palliative care for themselves, because they know that extraordinary medical efforts for very sick patients are invariably brutal, miserable and futile.

>Most end-of-life decisions don't involve an otherwise healthy young person who might expect another 50 or 60 years of good-quality life, they involve someone who has multiple serious health problems and is definitely going to die of something in the very immediate future.

One significant problem, at least in my experience, is when doctors take that approach with someone, based primarily on their age and on inaccurate diagnoses, who has multiple serious health problems and does not die in the very immediate future.

The common view seems like an inversion of Blackstone's ratio (better to prematurely end the life of one individual than to let however many other individuals suffer). To be fair, as a personal point of view this is fine, but it may also merge with socio-economic constraints in a really ugly way. In addition, no one I've spoken to has made any effort to even consider and explore differences in how other people experience pain or view death.

When all is said and done, it can be a real shit show.

though I agree with you mostly I feel you are ignoring a couple of things

1) Pain, often pain management becomes a much bigger issue than going all out fighting vehemently to prolong your life by a few more days/weeks/months. Its hard to understand what chronic pain does to you and your mind unless you or a close loved one goes through it. Often pain management also aligns with 'slipping gently into the night'.

2) Incentives, hospitals are in the business of making money and they's gladly run marginally useful tests and medicines until they max out whatever coffers they can. as I see its not long before the ethical/common sense minded providers get overpowered by the money making machine and give in. as it is perhaps you are not aware there was a study that concluded most (IIRC 75%) of a persons healthcare expenses happen in last 18months of their lifes. just ask yourselves this, would you rather give your inheritance to your kids & grandkids or some hospital trying to maximize profits by promising you random treatment that increases you life by a few months? ultimately this should be your decision to make but there should be strong protections around the options providers can present to you.

edit:formatting

2) brings to mind all too common scenario of patient being discharged from a psychiatric unit on day 22 because insurance only covers three weeks.

Adding a study to back up yours. "Spending on Medicare beneficiaries in their last year of life accounts for about 25% of total Medicare spending on beneficiaries age 65 or older."

https://www.kff.org/medicare/issue-brief/medicare-spending-a...

Yeah. No. Let me cut your crusade against the medical profession short by telling you that doctors are putting their money where their mouth is [1].

They see the kind of suffering that prolonging people's lives with certain conditions can inflict and choose to have none of it.

Other than that your comment is incredibly rude towards people who will do everything in their ability to keep you alive anyways - if you/family so insist - and also borders on being a conspiracy theory.

[1]: https://www.zocalopublicsquare.org/2011/11/30/how-doctors-di...

Everyone has a threshold regarding the amount of suffering they are willing to endure rather than dying. Yours (and your grandfather's, per your other comment) may be high, but so isn't everyone else's.

Suicide and euthanasia are valid options in some situations, which are up to each individual to evaluate for themselves.

The doctor in the article has been confronted to the selfish side of love too many times. People want their family members to be kept alive because losing them would make them sad. Somehow more sad than seeing them suffer and slowly die anyways.

I wonder whether you would have such strongly held opinions if you had more experience of medicine, disease, and end of life.

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