I read this article in full, and I have to say: Amen. This subject has a deeply personal meaning for me.<p>I watched my wife go through similar things. Her stomach stopped working, and even with groundbreaking surgery and one of the top 10 gastroenterologists in the world at her side, nothing could be done. She tried to get treatments that she thought might help, until one day her GP just down the road finally told her what no doctor had the guts to say out loud: "you're dying."<p>That was a punch in the guts. That was late November 2019. She'd just turned 45. She went on hospice care just 4 months later. Hospice care was the best medical care she'd ever received. Finally she was in less pain (but still a lot of pain- starving to death is the opposite of pleasant). Finally able to have one on one care with a nurse who genuinely cared about her.<p>She passed away at home in February 2021 at 46 year old. Nobody tried to violently resuscitate her. Nobody stuck tubes in bad places. Nobody caused her <i>more</i> suffering in order to prolong her suffering. The green paper on the wall said so. One of my own biggest fears was having our home invaded by EMT's and police, with EMT's shattering her frail body to try to save it. But that never happened.<p>So, doctors have it right. Die in peace the old fashioned way, if possible.
My Mom just passed two weeks ago from terminal cancer.<p>The Monday ~2 weeks before she passed she was at the hospital, I asked her if this was all really what she wanted. She really wanted to change over to hospice and focus on palliative care.<p>We began advocating for her to switch. She didn't have a ton of energy at the hospital to express/follow up on her wishes without someone there. The hospital seems like they would have erred on continuing treatment until all hope was exhausted. But once we began advocating for this want of her, the gears really shifted. She got all the morphine she wanted, and various other comfort measures. The palliative care team was driving the show. She was eventually able to go home for home hospice, and she had a final weekend of energy before passing Sunday before last.<p>All to say, having an advocate that help you with your wishes when you're in a weakened state feels like it is pretty huge. I can't imagine what would have happened if me and my siblings weren't able to help her. She _might_ have been able to get what she wanted ultimately, but all the follow up, checking in, caretaking etc you really want to have someone there advocating for you.
If curious, past threads:<p><i>How Doctors Die (2013)</i> - <a href="https://news.ycombinator.com/item?id=22393335" rel="nofollow">https://news.ycombinator.com/item?id=22393335</a> - Feb 2020 (1 comment)<p><i>How Doctors Die (2011)</i> - <a href="https://news.ycombinator.com/item?id=13122408" rel="nofollow">https://news.ycombinator.com/item?id=13122408</a> - Dec 2016 (45 comments)<p><i>How doctors choose to die (2012)</i> - <a href="https://news.ycombinator.com/item?id=9260286" rel="nofollow">https://news.ycombinator.com/item?id=9260286</a> - March 2015 (81 comments)<p><i>How Doctors Die</i> - <a href="https://news.ycombinator.com/item?id=7446014" rel="nofollow">https://news.ycombinator.com/item?id=7446014</a> - March 2014 (2 comments)<p><i>How Doctors Die (2011)</i> - <a href="https://news.ycombinator.com/item?id=5104430" rel="nofollow">https://news.ycombinator.com/item?id=5104430</a> - Jan 2013 (94 comments)<p><i>How Doctors Die</i> - <a href="https://news.ycombinator.com/item?id=3313570" rel="nofollow">https://news.ycombinator.com/item?id=3313570</a> - Dec 2011 (177 comments)<p>Edit: Just in case anyone's wondering, reposts are ok after a year or so (<a href="https://news.ycombinator.com/newsfaq.html" rel="nofollow">https://news.ycombinator.com/newsfaq.html</a>). Listing past threads is just because they might be interesting.
Just some words of caution, please don't read this article and think that getting treatment is futile. I was diagnosed with Stage 4B non hodgkins lymphoma 2 years ago, numbers were showing that multiple organs were failing, wasn't able to eat much because the belly got so distended, my PET scan lit up like fireworks after months of diagnostic failure. It took around 3-4 months to get to diagnosis and I was miserable. By that time I had read this article and was thinking maybe I should just go home and die in peace, but my wife told me I need to be strong and not give up.<p>The following one year was tough, initially I was carried around in wheel chair, too much muscle loss by time of diagnosis. At first, my body was so weak that doctors decided I can't even take the first cycle of chemo at once. My arms were so bruised with all the poking that I had to move them carefully. Then chemo side effects started getting overwhelming. But slowly, things started working. One year in I was back on my feet, started working again. Two years in, here I am writing this comment and hoping for a healthy bright future for everyone out there.<p>It's better to get advice of multiple doctors, understand risk vs rewards. Yes, there maybe a point when its time to optimize for quality of life and give up, but that should be after one or two lines of treatments.
I watched my Grandfather die in a way which was truly horrific from terminal cancer.<p>We have some family members who cared a lot about him and have very deep pockets, so they assembled a team of the best specialists they could find over a variety of disciplines and demanded they throw every treatment possible at him to try to keep him alive. So in his late 80's, with terminal cancer, they have him on chemo, pumped full of an ever changing diet of pills, going through one invasive procedure after another. He was a smart guy too and I think he hated it but didn't have the heart to tell his family who thought they were doing the right thing to stop.<p>All for what? To keep him barely alive hooked up to machines for an extra month or two? It was one of the saddest things I've ever witnessed that that is what the end of his life had to look like.
I can’t find the documentary name, but this article reminds me of it. Basically, a man had chronic pain and spent a decade or more trying to solve it. It got to a point where he realized that even though he had treatments, he was still in a lot of pain and felt like he was just eking out his life just to be miserable every day. At one point, he mentions his grandmother dying of cancer. She’s taking a regimen of pills to stay alive but she’s miserable. She doesn’t have a quality of life, so he eventually asks her why she keeps taking her pills then because they’re basically artificially keeping her alive.<p>By the end of the film, he says goodbye to his loved ones and has an assisted suicide to escape the pain he was in. It was a really touching documentary. As a society, we have a big focus on “fighting” cancer or other big illnesses. I guess there is a quiet, difficult dignity in deciding to face your mortality too, but it’s rarely talked about.
Quick Google Scholar search shows the following study with the conclusion, "U.S. physicians were more likely to use hospice and ICU‐ or CCU‐level care. Hospitalization rates were similar."<p>How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life, <a href="https://doi.org/10.1111/jgs.14112" rel="nofollow">https://doi.org/10.1111/jgs.14112</a>
My mother died, we bury her on Tuesday (2 days from now). Her last few years were difficult, so we put her in assisted care; wonderful place with lots of social activities and a great restaurant.<p>Well, Covid meant lockdowns and isolation, no friends, no restaurant, just her small apartment with no visitors. We could have 'window visits', like when we dressed up for Easter and waved at her through highly reflective plate glass.<p>Then she had a stroke. Couldn't speak, couldn't swallow. I thought she was going to die in hospital before we got her to hospice care. Tubes, beeps, shouts, blaring TVs, robot-like doctors.<p>When we brought her home -her own bedroom- and my siblings cared for her, she thrived. I designed a board for her to communicate with. She laughed, she ate (sort of) and even had her morning coffee looking out at the lake as she always loved.<p>She died in her sleep, cared for by her children. It wasn't pretty but it was the best anyone could hope for. As for me, I'm going to develop that board and help others with it.
Get your living will, DNR, etc done now.<p>My dad suffered from a stroke four years ago. I lost him that day, although he’s trapped in his own body. He’s debilitated and suffering in a way that is awful. He’s a writer who can’t speak or use his fingers; a chef who can barely feed himself. My mom is a former medical professional guilt ridden over calling 911.<p>It’s not anyone’s fault; the doctors and paramedics acted quickly and did their best. But our ability to sustain life is ahead of our ability to save it.
Reading this made me think of Sartre's The Republic of Silence [1]. In this article, Sartre claims, "never were we more free than under the German occupation." He explains that, roughly, in the face of death, each choice becomes more meaningful, more "authentic."<p>This goes along with the article's discussion of how doctors, in general, choose to receive far less care than the typical patient when faced with terminal illness. This choice grants an opportunity to live authentically, in Sartre's parlance, for their last months as opposed to going out via the indignity of excessive treatment (e.g., life support machines).<p>[1] <a href="https://www.theatlantic.com/international/archive/2014/09/paris-alive-jean-paul-sartre-on-world-war-ii/379555/" rel="nofollow">https://www.theatlantic.com/international/archive/2014/09/pa...</a>
Having been through the death of both my parents, my observation is that there is death industry engaged in a giant transfer of wealth from dying people to the medical establishment (who are already very wealthy).<p>Long term care insurance is a scam. Don't bother. They will find any excuse not to pay. You'll need to go to court or arbitration and the legal fees will eat up any settlement.<p>When it's my time, I plan to go expediently. No heroic measures, no experimental drug trials. I'd rather my kids inherit what I've worked for in my life than hospitals, doctors, or nursing homes.
As a haematologist, I find my faith in how well something is going to work is often inverse to how new or expensive it is. Whereas I see many patients who really seem to put faith in a phase II drug or something only recently licensed. New and expensive doesn't necessarily mean good.
Here is a counter-example. Dr Michael DeBakey, pioneering cardiac surgeon, suffered an aortic dissection at the age of 98 and refused surgery until the decision was made for him by the hospital's ethics committee. Fortunately the surgery was successful and he went back to practice medicine after a lengthy recovery process. From what I could gather he was pretty please with the outcome.<p><a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(08)61223-4/fulltext" rel="nofollow">https://www.thelancet.com/journals/lancet/article/PIIS0140-6...</a><p><a href="https://www.nytimes.com/2006/12/25/health/25surgeon.html" rel="nofollow">https://www.nytimes.com/2006/12/25/health/25surgeon.html</a>
If you want to sidestep the expensive, sketchy funeral home industry<p>1. Donate your body to science, they'll cremate you for free (<a href="https://www.anatomygifts.org/" rel="nofollow">https://www.anatomygifts.org/</a>)<p>and/or<p>2. Look into natural burial of your remains (<a href="http://www.orderofthegooddeath.com/resources/natural-burial" rel="nofollow">http://www.orderofthegooddeath.com/resources/natural-burial</a>)<p>Preparing for your death now, doesn't somehow influence when you're going to die. But it makes a world of difference to the people that survive after you
One thing I hear from doctor friends is how incentivized they are to try everything, because if they forget something our legal system strays towards malpractice. Also they get incentives from various lobbying groups to try this or that.
Ending up on life support is the biggest fear of my life and no matter how I talk to this with my mother she is just not of the idea that people can just choose not to stay alive. I truly believe she's the kind of person that will keep me plugged into a machine so long as she can still feel like she's doing something to keep me alive. We never, ever agreed on the dignity of letting go and dying in one's terms... Of course, I dont live with her anymore, not even the same country... but one of greatest mysteries for me will always be what her idea of life is, we're both religious, I just dont see any point in keep pumping air and blood into a dead corpse... I would seem to be someone figured a way to make a load of money on grief, which disgust me to no end.
When Einstein was ill at age 76 and asked if he wanted to undergo surgery, he refused, saying, "I want to go when I want to go. It is tasteless to prolong life artificially. I have done my share; it is time to go. I will do it elegantly."
From my experience as a rescue-worker, I have instructed my SO to never have me on a machine for life support longer than one week before I'm in my sixties, and no longer than 3 days if I'm over.<p>This is my decision, and I won't go into details, because they are personal and I am not a doctor. Perhaps the point I desire most others get from my post is this:<p>We are all going to die. Usually unpleasantly. Most often, unexpectedly, even with a prolonged illness.<p><i>Plan your death. Plan your medical treatments. There are things you can control, you need to know & state what they are, and have it in writing.</i>
The lead in story isn't terribly surprising to me. Pancreatic cancer is just so bad. Even if you catch it in stage 1 or 2, the median prognosis is under 2 years to live, and it's exceedingly rare to catch it that early. Usually, it's caught stage 4, and the median prognosis there is a few months. I imagine a lot of people with that ahead of them choose to skip chemo and radiation. It's a miserable experience, one you would choose only if it had a marked effect.
This is a good example of death phobia. Anyone who is interested in research of someone who has faced death head on over 1,000 times should read "Die Wise" by Stephen Jenkinson. He was in charge of end of life care in Canada health care system for a decade. He despises palliative care and thinks it distances us from the reality of death which makes it all the more worse. This article really emphasizes the extents people will go to hide their own death, or deny it.
Very good article. I think there is an important distinction between acute and chronic disease, with respect to how much time you have to consider the choices you need to make - while you retain the capacity to make them.<p>In the UK there is an initiative to address some of these problems by having a proactive conversation with all patients before they become too sick. The ReSPECT process (<a href="https://www.resus.org.uk/respect/respect-healthcare-professionals" rel="nofollow">https://www.resus.org.uk/respect/respect-healthcare-professi...</a>) encourages clinicians and patients to establish a shared understanding of what outcomes the patient values and fears before recommending which clinical treatments they would and would not benefit from. It's adoption here has been very positive - for context there have been multiple problematic issues with the use of DNAR (Do Not Attempt Resuscitation) form - especially during the pandemic.
My father had Esophageal cancer. He underwent radiation therapy and round of chemo. Cancer spread and his esophagus was badly damaged from radiation.<p>I was lucky enough to see a prominent oncologist. He went through his file and gave me a few options. Since his esophagus was badly damaged all of them included drilling a hole in his abdomen through which he would be able to eat. Well, I should't say eat. The nutrients would be pored in. Oncologist said it's a procedure he would not wish upon his worst enemy. In those exact words. Knowing my father he would never agreed either.<p>So we switched to palliative care. We never told my mother and grandmother.<p>He died in his home early afternoon on New Year's Eve in 2012. surrounded by his family. He was 55.<p>I often think that, in a way, I killed my father.
I'd imagine that as a doctor you would have grown accustomed to all of the varied pathways that terminal diseases and their treatments take. It would be inevitable to think through how you would view any given path should it be your own fate one day.<p>Someone who hasn't had a lifetime to grow accustomed to how, when, and why humans die is less likely to suddenly become accustomed to what a terminal illness means for them in the days following diagnosis and ahead of treatment. Particular to TFA's pancreatic cancer story, should I be diagnosed with it in a few years I'd imagine I'd want to stick it out for a while just because giving up would feel ... weird.
> According to the statistics, about 30% of those who survive CPR wake up with a cracked sternum and/or broken rib. The key words there are, "wake up." <a href="https://www.cprconsultants.com/is-it-true-that-ribs-can-break-during-cpr/" rel="nofollow">https://www.cprconsultants.com/is-it-true-that-ribs-can-brea...</a><p>I did not like it
> someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).<p>Made it seem like it always happens when correct CPR is done.
End-of-life memoirs, the type where the author has a terminal illness and knows the end is nigh, are one of my favorite genres. Key takeaways after having read ~10 such books:<p>1. You will die.<p>2. Enjoy life.<p>3. Be kind.
The medical profession spend a long time (rightly) ruminating on death. To die is, unfortunately, a natural consequence of being born: all doctors can hope to do is change the order around a little bit here and there. Yet that does not mean that the practice of medicine is pointless, nor does it mean that death has to be accepted. One of the main medical training "shorthand" books in this country, the oxford handbook of medical sciences, affectionately known as 'prawn cocktail' owing to the similar colour of its binding and a packet of Walkers' [EN-US: Lays] crisps, simply has two double-page spreads on the subject: "death of a parent" and then, following that, "death of a child". No mention is ever made of "death of yourself".<p>I think that doctors spend a long time subconsciously thinking about this subject, and knowing full well that there are some conditions -- like gastro-oesphageal reflux disorder, let's say -- where it is overwhelmingly like that, with the help of the last few decades of technology, be something that you die with, and not of. The difference between refusing treatment may be pain initially, and a preposition to get cancer of the oesophagus later on. Then there are other conditions that are awful death sentences, and have been since time immemorial, diagnoses where a good outcome changes dying at home in four months to dying in a hospital in eight.<p>When I received a spinal injury following trauma, one of my colleagues (a cardiologist specialising in heart failure and transplant, both conditions where unfortunately a sizeable proportion of patients do not survive a long time) simply said to me: "well, this is life -- you're born, bad things happen, and then you die".<p>I found it oddly comforting, and had absolutely no qualms about taking the next dose of morphine...
The older I get, the more I understand why some people refuse to go to the doctor for any reason. They are not stubborn fools, they are perfectly rational.<p>Some people don't even want to know if there is a 10% that they will die, they's rather just die than face their own mortality. They know their nervous system can't handle that.
For some reason, a intro and video by the author he linked to is giving a 404 error.<p>Here's the wayback copy of the intro: <a href="https://web.archive.org/web/20180415050715/https://www.saturdayeveningpost.com/2013/02/14/health-and-family/ken-murray.html" rel="nofollow">https://web.archive.org/web/20180415050715/https://www.satur...</a><p>And the video on YouTube: <a href="https://www.youtube.com/watch?v=_KG8Z428Hpw" rel="nofollow">https://www.youtube.com/watch?v=_KG8Z428Hpw</a>
Not, doctors normally don't die like this. This is a very local point of view that shouldn't be treated as dogma.<p>Of course for assurance is good to put money into convincing every patient to go home, die peacefully and refuse the expensive treatments that they would have to pay otherwise. "Kill-yourself-at-home kit, is good for ya" will be probably the next step.<p>Not trying to ignore the fact that healthcare looks very broken in some parts of the planet, but people has what they voted for.
My dad was lucky enough to die in his own bed with my Mum holding one hand and me the other. The last several months he was on morphine for the pain, but overall it is hard to see how it could have gone better (if it was going to happen of course - he didn't have as long with the grandkids as we would have wished).<p>I am also reminded of this book "Final Chapters: A Hospice Social Worker’s Stories of Courage, Heart and Power" which I found very insightful.
I wonder what doctors do with their terminal ill children. It's easy to decide to decline treatment for oneself if one knows that there is no reasonable way.<p>But to do same for children?
That part about CPR done right breaking ribs seems to be refuted by a lot of the top results that come up when i looked for "Should CPR break ribs?"
I have stage 4 metastatic cancer and this article confirmed what I thought myself - it's not worth it to "put a fight". My life haven't been great, so I am even relieved now it is ending. I'll tell my family only when it's time to load up on oxi.
If I am given a death sentence where I know I have X months to live I want the following things:
- I want the right to take some opiates and feel as comfortable as possible
- I want the right to refuse medical procedures with a low chance of success
- I want to be able to be with my loved ones
We're all scared of death, and fear clouds judgement. It can be so difficult to get small treatments that improve your quality of life done. But when you're 80 and near death, they'll stop at nothing.
My grandma had dementia for the last few years of her life after having some strokes. My dad told me that if he ever gets like that, to buy him a one way ticket to Nome and say goodbye.
I'm afraid of death. Very afraid. I'm pretty sure we're just meat sacks and when my heart stops beating that'll be the end of all that I am, and that scares the shit out of me. Calling what I feel about death "fear" is almost a category error; it's a five-hundred-foot-tall Godzilla of dread looming just behind me always, and every so often I happen to think about it, I happen to turn and glance at it, and my stomach just drops. The realization that it's all going to end is the ultimate anxiety underlying all others.<p>So when I read something like this, it just seems... so alien. I can't imagine a pain or any feeling, really, worth wishing I was dead over. There can't be anything worse than death. There just can't. Pretty much any amount of bad is preferable to infinite nothing.<p>Maybe the scariest part is that one day, I'm afraid I might change my mind. I'm afraid I might be brought to a point where I think, "Ah, this is it. This is the feeling that's worth dying to escape". The only thing scarier than the worst fear imaginable is the unthinkable idea of a pain so unimaginable that it makes succumbing to that fear seem like a mercy.
Another article written by a doctor giving an unromantic view of death:<p><a href="https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/" rel="nofollow">https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay...</a><p>I was particularly struck by this comment from one of the readers:<p>""" My grandmother has dementia to the point that she yells and moans the same thing non stop 24 hours a day, including the phrase, “please help me”. This is continuous except for 15 minute patches of sleep here and there as she no longer really sleeps just dozes. She weighs 90 lbs if that and is eggshell fragile screaming when touched due to degenerative muscle tears compounded by arthritis. Her bowels no longer work and she fluctuates between constipation, where the assistants administer a suppository, or she has explosive diarrhea that must be cleaned up which requires moving her excessively and thus more screaming and claims of pain. She is on peritoneal dialysis and has congestive heart failure with a pace maker, prior to loosing all capacities a few months back she was swallowing nitroglycerin like candy and up until she stopped walking entirely my mom was dragging her to doctors and what not. Even then moving was difficult and required wheelchairs and walkers. Her dialysis port is always sore and semi infected despite meticulous hygiene.<p>She has a raging UTI on a twice monthly basis though she is bathed by attendants and her diaper and garments changed regularly. She is on oxygen though she does not even move about to use oxygen as she can no longer stand nor even muster the strength to hold a sippy cup. She has forgotten how to eat or even swallow and still she is forced to choke down at least 15 pills per day and takes the occasional bite if food which she may stop chewing and allow to fall from her mouth. Her mouth is so dry the pills do not even dissolve when they lodge so she has to be coaxed and coaxed endlessly and given water in a dropper. She has round the clock private care to the tune of a few thousand per month. I had rather this money go to medical research or a non profit hospital. This team also includes a physical therapist which is useless. She is always freezing and has to be by a fireplace or heater or covered in layers of heated blankets so comfort is hard to achieve.<p>She is moved around like a doll with much ado and her screaming in pain which my mom would claim was from her dementia and not so much pain. Finally after months of this torture on her poor failing little body my mother is now considering hospice care mainly due to the cocktail of pain killers and anti anxiety pills no longer soothe her at all-I really have no clue why it has not stopped her heart. It has been surreal to witness this and I feel so bad for people who do not have the resources or loved ones for even this much relief if relief is what you call it. However I think my grandmother would have never considered euthanasia or absence of life saving measures if given a choice while she was cogent because she had an unhealthy fear of death even then.<p>The way we view death is really twisted and I fault religious nonsense with a lot of that phobia. Modern medicine, while mostly positive, can be grotesque because it can extend life past a semblance of life. I personally have had a living will made since this despite being young and can only hope we make strides in having physician assisted suicide legalized so people have options. """
Dad was a radiologist, and I found it strange how he believed in the Catholic god. Irish dad I suppose. Strange how intelligent people can be so doggedly unintelligent when it comes to youth brainwashing.