How doctors choose to die (2012)

http://www.theguardian.com/society/2012/feb/08/how-doctors-choose-die

by arfliw • 11 years ago

161 81 11 years ago

cup• 11 years ago

This has been posted a number of times in different iterations on HN. I'm curious why the user group here has such a fascination with medical doctors.

Afforess• 11 years ago

It has nothing to do with a fascination with doctors and everything to do with a fascination with death. Death today in first world countries is so far removed from what death ought to be, that it's almost unrecognizable. Dying in a sterile white room, in a building that houses thousands of sick people, with bad food, busy nurses, and often alone, is what I'd imagine a dystopian future from a Hollywood movie like Soylent Green would look like, but instead it's what Death looks like today. There is no need for this, and if most of us were asked in advance, few would choose it as the outcome. Yet very few people have living wills created, nor plans communicated with close family for these circumstances.

You can't avoid Death, it happens to everyone. So it's bizarre why so few people plan for the only truly predictable event in their entire life.

sago8• 11 years ago

To be fair, in Soylent Green you died by opting for assisted suicide in an environment with good food, beautiful views and classical music. I'll go with that over a lot of other options. I'll swap the environment for home, and be surrounded by family, but yeah. Soylent Green was hardly the worst dystopia, I think.

sho_hn• 11 years ago

Engineers have a peculiar relationship with doctors. When they have need of one, and the doctor decides on a treatment plan for them, they think about the complexity of the problem space the doctor had to navigate to reach that decision. They wish the doctor would chart the parameter space for them, so they can agree or disagree with the choice in an informed manner, and have more of a clue about the competence of the doctor. This is usually not what happens, not to their satisfaction anyway, and it's deeply unsettling having to trust rather than know when it comes to something that appears so much like engineering on the surface.

An alternative title for this article might be "what doctors really think", and thus strikes to the heart of this issue.

afarrell• 11 years ago

I'm saving that paragraph. That was a fantastic explaination.

shiven• 11 years ago

Or, as a (former) doctor, I love telling my engineer friends:

Intuition can't be formalized.

Part of the reason simply being the "system level" thinking that has to be developed, practiced and honed by any doctor worth his/her salt. And when you think of it, even with our current understanding of the human organism and the phenomenon called life, we are primarily working using 'heuristics', barely glimpsing the ultra-complex jigsaw that makes everything tick. Someday, when the ken of this knowledge is complete, we may be able to formalize the logic, albeit, the 'computer' it runs on, may well be as complex as our own brains!

cesarbs• 11 years ago

I had a doctor back in my home country who was fascinating. He would give me hard facts about everything and he would explain all the reasoning behind his recommendations with numbers, probabilities, etc., putting everything down on paper. I loved being treated by that guy. I wish every doctor were like this.

Here in the US I've only so far had the tipical experience of:

1) Telling my symptoms. 2) Observing that half of what I'm saying is being ignored - this pisses me off because I'm very obsessive about my health, so any interested doctor can hear me give them extremely accurate descriptions of what I'm feeling, and how those things relate to daily activities, eating habits, exercise, other symptoms and a number of other things. 3) Being diagnosed with something I'm very sure I don't have (and I'm right most of the time). It's usually something super generic, like "upper respiratory infection".

arfliw5• 11 years ago

I can only say why I shared it here:

I thought it would be of interest to hackers. That's what these doctors are doing...hacking the end of life.

fsloth• 11 years ago

Thanks for sharing. Reading and thinking about this makes me feel rather relieved about the 'Do Not Resusciate' status a close person to me had before dying.

shiggerino2• 11 years ago

I once had a conversation with some ER nurses about the best way to commit suicide. They took indeed a very hacker-like approach to the problem. Some of the suggestions were insulin or potassium overdoses. Maybe not what you'd expect as a layperson.

It seems like the go-to drug for terminally ill patients is often hoarded morphine or morphine derivatives, but death is slow and drawn-out, and someone might get the brilliant idea to resuscitate you, leaving you brain damaged and worse off than the situation you tried to escape from.

mct• 11 years ago

A few years ago, I heard an NPR interview with a doctor who's friend was terminally ill. Rather than opt for treatment, the friend spent his remaining time living with his doctor friend. He died a few months later. The doctor said that this is how she wanted to die, too. I've tried a number of times to find the story, but I haven't been able to. Does it ring a bell for anyone? I'd love to listen to it again.

Thanks!

berberous• 11 years ago

That does not specifically ring a bell, but Radio Lab did a piece on this topic once. Perhaps it's in there:

http://www.radiolab.org/story/262588-bitter-end/

screature2• 11 years ago

Can't speak for other people, but the fascination for me is a combination of decisions that are difficult and universal and then watching to see how subject matter experts (who view this stuff on a day to day basis) choose for themselves.

I think this invariably results in deeply moving meditations on mortality and dignity from both sides of the table (care provider and patient). Or maybe I'm just suffering a recency bias from this: http://med.stanford.edu/news/all-news/2015/03/stanford-neuro...

hkmurakami• 11 years ago

There's also a factor of compliance and regulation that affects what doctors are able to say to their patients.

jimt673• 11 years ago

I thought this was thoughtful and well written but all I see is anecdote...there is no data presented that MDs choose different options than non-MD patients.

FireBeyond2• 11 years ago

Adding to the anecdote, I'm a paramedic who has also opted for 'no heroic measures'. Even with CPR survival rates in this county being amongst the highest in the country.

gr3yh47• 11 years ago

Is breaking of the ribs really a requirement of CPR done correctly? My understanding was that it is possible for ribs to break but by no means a requirement of correct CPR as the article implies.

arfliw5• 11 years ago

Do you have data disproving the anecdotes?

jimt673• 11 years ago

I don't, but when you title an article "How DOCTORS choose to die" (caps added for emphasis) you are making a generalization and supporting it with anecdote. I realize "Doctors' death stories" might be less attention-grabbing but more accurate. I did enjoy the article -- it resonated with me, but I still don't know if doctors choose to die any differently than the rest of us.

dataminer• 11 years ago

Here is a study that backups the claim made in the article http://journals.plos.org/plosone/article?id=10.1371/journal....

jimt673• 11 years ago

Thank you...exactly the type of information that should have been added to the article (and I should have found in search).

sago8• 11 years ago

This is anecdotal evidence from a small (2) sample. But not all doctors die without treatment at home. Some (many?) are aware of the drugs they need to hasten their demise in a way that minimises their suffering. One doctor I discussed this with said that assisted suicide, in a very limited and measured way, isn't uncommon, if you know what to look for.

As someone with a degenerative incurable condition, I'd like the option of being able to make informed decisions about the end of my life, beyond just refusing treatment. Because spending years dying of starvation (as MS campaigner Debbie Purdy recently did, because she was unable to cope with her symptoms, and there was no other legal recourse to help her die), doesn't fill me with excitement.

We have an insane attitude to death in our culture at the moment. We seem to want to find any way to avoid the fact that being alive has a 100% mortality rate. I think our collective attitude needs to change. And the more articles like this the better.

themartorana4• 11 years ago

It's really hard to change perceptions about death when it requires considering one's own mortality. It is in this only that I understand the desperate quest for religion. The idea of going dark forever is terrifying to me, and considering I'm pretty much an atheist, I don't have much hope of anything else. When people ask me if I'm religious, I usually tell them I'm hopeful that I'm proven wrong.

I know we all die. I know our lives on a cosmic scale are infinitesimal. But even I - as rational as I am, am extremely scared of facing that reality head on.

So convincing the entire nation/world to do so... Well, good luck with that.

sago8• 11 years ago

It doesn't frighten me. It won't go dark forever. Just as there was no 13.5bn years of darkness before I was born. There will be no qualia of time.

I think attitudes are changing. The campaign to be able to determine how and when we die is shaping up to be a significant battle for a fundamental civil right. I think we'll win it. Whether it is soon enough for my wife to avoid threat of prosecution if she is with me when I choose to act, I don't know. I suspect not.

michaelochurch2• 11 years ago

If this makes accepting death easier, the good news is the near-death experience. While I certainly don't intend to convince you that it's an afterlife experience (because no one knows quite what they are) it is typically positive and very powerful. Subjectively, it's an intense spiritual experience that seems to be unmatched by most things in life. As for whether it's entrance into an afterlife or the shutdown sequence of a dying brain... who knows? I don't think we'll have that answered within our natural lifespan. Both you and I are likely to die before we, as a species, know whether there's an afterlife. So we have to go into death without full knowledge but, to be honest, we go into every experience without full knowledge. Tomorrow we might wake up and find that the sky is purple. It's extremely unlikely, but it could happen.

Honestly, I'm as irreligious as you are but I tend to think the odds are better than even that there's some consciousness after death, although "after" might not be the right word because I'm not sure whether time is even well-defined outside of this physical universe. Presuming that I came from nothing, that means that "nothing" can produce qualia, which means that if I become "nothing" after death... it makes a plausible case for rebirth. As Voltaire said, "It is not more surprising to be born twice than once."

So, if the last moments of this life are a positive experience and the "next moment" is either nonexistent or a continuation that might be called an "afterlife", then I don't see much to worry about either way. Of course, others' deaths are still really hard to take, and I'm a hypochondriac who hates the thought of sickness (for the embarrassment and sense of failure, not the danger) but I don't fear my own impending death. I'm not likely to hurry it, but I have a lot of curiosity about it and I look forward to the experience.

unabridged• 11 years ago

I know our lives on a cosmic scale are infinitesimal.

I like to think of each consciousness as a prime number, an inevitable pattern if you write out every possibility. Our brains are contained within some 3 dimensional finite configuration of atoms, and in a large enough scale it will be repeated again. Even its exact position when you read this message.

seanmcdirmid• 11 years ago

My mom suffered from MS here entire life, and a few years ago left us on her own terms (with the help of some pills) before the age of 60. I don't blame her of course. I also have no idea if she had any help from a doctor or not.

letstryagain• 11 years ago

being alive has a 100% mortality rate.

Well we assume it does but so far only about 95%

tim3332• 11 years ago

Yeah, historically it has had a 100% mortality rate but there is a significant chance that things will change. eg. uploads

http://www.inquisitr.com/1883084/mind-trip-humans-to-live-fo...

and the like

pikachu_is_cool2• 11 years ago

Wow... when you put it that way, you wonder why we aren't making more progress than we already are.

epicureanideal• 11 years ago

Sago, I hope you've heard of Alcor cryonics? It's not guaranteed, but it's better than 0 probability.

shiggerino2• 11 years ago

https://www.youtube.com/user/OrderoftheGoodDeath

This is an interesting and entertaining YouTube channel that seeks to address the perceived anxiety and denial of mortality of today's society.

shazad• 11 years ago

Atul Gawande, who's written extensively on end of life issues, had an excellent one hour Frontline special that covered the same topic. I highly recommend watching it if you're interested at all in how terminal illness and dying are handled in the United States today: http://www.pbs.org/wgbh/pages/frontline/being-mortal/

quickpost• 11 years ago

His book on the same topic is absolutely enlightening and surprisingly enjoyable to read, despite the sobering topics.

Being Mortal.

http://www.amazon.com/Being-Mortal-Medicine-What-Matters/dp/...

sandworm• 11 years ago

It isn't just how they die. Similar articles could be written on "How doctors loose weight", "How doctors pick their doctors" or "What do doctors do when their kids are sick". Insider knowledge and the education to effectively employ that knowledge always has advantages.

I do take issue with the concept that these docs are dieing "without treatment". They get treatment. They are diagnosed (a big deal) and have ready access to a host of pain management drugs. Having a full understanding of your condition, along with the knowledge that any pain can and will be managed very quickly, is a massive stress reduction. That's a form of treatment imho.

jrapdx3• 11 years ago

When facing terminal illness, doctors probably differ little from comparably educated subsets of the population. I don't know of studies specific to physicians, but my guess is quality of life is a priority that shapes decisions about treatment for life-threatening conditions.

After decades in practice, doctors have faced death of patients many times. It's not an experience one ever really gets used to. As a result, doctors tend to be realists about illness and its likely outcome.

It's no surprise that doctors might choose "death with dignity". Oregon, where I live, was the first state in the US to pass a law legalizing physician assisted suicide. The Death with Dignity Act went into effect in 1997. Studies have consistently shown that the leading motivations among those requesting lethal prescriptions are the desire to maintain independence and minimize reduction of QOL.

Comprehensive data/stats related to DWDA can be downloaded--the most recent report (2014) is here-- http://public.health.oregon.gov/ProviderPartnerResources/Eva...

Additional info is available-- http://public.health.oregon.gov/ProviderPartnerResources/Eva...

mytochar2• 11 years ago

I'm a little frustrated with this article, but not for the reasons in the article. The doctors were angry at their patients' family members for putting them through the suffering; but, ... that form of suffering is just where medicine is right now.

Medicine is evolving, and growing; and, it's that desire to keep living and to keep those around you living, and to improve their well-being that has, in part, grown our medical abilities to the point they are now.

It feels like some of those improvements that, right now only provide a '15% chance of survival, and include pain', will be the stepping stones for 20, 30, 80 or 90% chance of survival, with varying levels of pain, including 0.

The article seemed to suggest that the doctors didn't approve of those intermediate steps, but ... those are the steps medicine takes, aren't they?

I dunno. I respected the rest of the article. That part of it bothered me.

dragontamer• 11 years ago

It isn't the doctor's job to improve medicine, it is a researcher's job.

Doctors can only prescribe to you the 15% chance of survival, knowing that there's no greater benefit to medicine. They're too busy seeing patients to improve medicine.

mytochar2• 11 years ago

I'm not sure this is accurate, especially in the case of cancers. Doctors were part of the studies with at least one person I know.

marincounty• 11 years ago

There's one thing they left out of the article. Yes, we are all going to get sick, and eventually die. Doctors--know the expected survival rates. Doctors do seem to end up with the right medications to really make those last days comfortable, or take the right amout and overdose properly?

Now, their patients, especially the poor, stereotyped, etc. are sent home, and when a doctor feels like they need Hospice, they give their approval.

I had a poor friend die. It was obvious he only had a few months left, but the doctor wouldn't o.k. Hospice? We went to two clinics, and a pain clinic and neither would give him the medications (Opioids and Benzodiazepines) he needed. One pain clinic(noted one of the better ones--in San Francisco) offered to cut some nerves?(I still don't know what these Blow Hards wanted to cut.)

Why didn't he get the right medications; well in the states we assume everyone is going to abuse drugs. It's just getting worse. Doctors are not taking away pain.

O.K., but once you have Hospice, everything is fine these fine? Doctors are trained in Pallitive care--if you get lucky. My experience watching my father die of liver cancer was a week of Hell. Hs last words to me before he went onto one of his last comas was "Son--when will this end?" Yea--no shit!

The nurse finally came around. She then let my sister manipulate his medications which made his discomfort even worse.(my sister thought he should spend more time with his grand kids, and she wanted him to give her more things?) There I said it. Yea, she's a piece of work.

I know this. When I am given that diagnosis of death. I used to think I would go to the bad part of town and buy smack, crack, whatnot, but as I've gotten older and I don't have the fight in me like I did in my 30's; I will probally just suffer through the agony of death like my father endured? Or, I might do what Robin Williams felt he had to do?

Robin's wife said she was glad he picked up his ipad when he walked by her. She said, Robin hadn't watched tv, nor went on the Internet for the last six months.

Robin was found in his stepson's bedroom with a belt around his neck. A towel was wrapped around the belt. I'm assuming to make the suicide more comfortable? Crude knife marks on his wrists--from a pocket knife. An ipad was found near the body with websites open to the the various side effects of the drugs he was given. I don't know all the drugs he was given, but they found a bottles of Seroquil? and a drug used to help with the neurological disorder he had.

Why did I repeat this story. Because this is how we are forced to die in the United States. I don't know why Robin committed suicide. He sounded like he was suffering for a long time, on many levels? I don't know if the prescription drugs he was taking made things worse? Either way, he shouldn't have had to die like this. I'll pass this along too. Don't think suicide is easy. I knew a guy who tried to blow his head off with a shot gun. He blew his frontal cortex off, and spent the next 30 years paralized in a rest home. He died of a lung infection. I didn't know him personally. I worked for the Cororners office at the time, and picked up hs body.

Enough, I feel sick from even writing about this gruesome stuff, but nothing changes. Doctors should treat the pain of their patients, and the government shoud not harass them.

And we need a "right to die with dignity" law like Oregon passed. They passed it a few years ago, and very few decided to use the kit. Most decided to go naturally, but it must be reassuring knowing you have an alternative? I yacked on, but it's something I think about often.

hippiefahrzeug• 11 years ago

This reminded me of an article I've read a long time ago which had a really strong impact on me. I've just found it by googling a couple of words that were still in my head after all these years.

Here it is (probably not where I originally read it): http://www.nbcnews.com/id/21643646/ns/health-behavior/t/what...

rckrd• 11 years ago

Fantastic and relevant read.

This was surprisingly well written for an NBC or Men's Health article for those who are skeptical.

ColinWright3• 11 years ago

And the bowl of petunias said: Oh no, not again.

For those interested in the collective wisdom of the HN community, here are some previous discussions:

https://news.ycombinator.com/item?id=3313570 : 1206 days ago | 177 comments

https://news.ycombinator.com/item?id=4865742 : 841 days ago | no comments

https://news.ycombinator.com/item?id=5017104 : 807 days ago | no comments

https://news.ycombinator.com/item?id=5104430 : 790 days ago | 94 comments

https://news.ycombinator.com/item?id=6040804 : 618 days ago | 1 comment

https://news.ycombinator.com/item?id=6767385 : 489 days ago | no comments

https://news.ycombinator.com/item?id=7446014 : 368 days ago | 2 comments

arfliw5• 11 years ago

While that certainly is an intimidating set of links you have there, only two of those have any discussion -- one over two years ago, the other nearly four years ago.

ColinWright3• 11 years ago

Indeed - has anything changed?

If not, then those discussions are still relevant, and there would be value in skimming them rather than simply repeating all the points again.

If so, then it would be of value to see what has changed, possibly by reading the previous discussions. Perhaps the mood of the audience has changed, perhaps the general opinions of the HN community have shifted.

Either way, being aware of the past is of value.

    Those who cannot remember the past
    are condemned to repeat it.

        -- George Santayana

EDIT: People often misunderstand these back-links. They are not intended to scold people for submitting things that have been submitted before. On the contrary, I believe some things should re-surface from time to time, bringing them back either for the informing of the newer community members, or for re-evaluation in case things have moved on and should be re-considered. My main concern and motivation is that previous contributions should not be wasted.

mattlutze• 11 years ago

I had a conversation about this with a friend yesterday.

What I would like to understand, is what the difference is between one incurable terminal condition and the next is, and why we're culturally stuck on trying to divide things up into "approved" and "not-approved" categories.

Death happens for everyone. Most everyone, if they make it to very old age, will have degenerated physically and mentally from where they once were. I wonder, if our sympathies are telling us to consider whether a person with X condition should be allowed to end their life, whether that same thought process shouldn't consider all end-of-life conditions to be equal, given their shared terminality and expectation of degeneration.

Or, on the flip side, should we think terminality and expectation of degeneration in these cases is not enough, whether it is appropriate to accept it in this subset of cases.

How doctors choose to die (2012)

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