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We’re Bad at Death
- spenrose 9y agoHighest recommendation for Atul Gawande's Being Mortal, a book on this topic: http://atulgawande.com/book/being-mortal/ http://atulgawande.com/book/being-mortal/
- badgers 9y agoNPR's Planet Money did a podcast on a a town in Wisconsin that reduced health care costs by having conversations with patients about death. It's worth a listen for an inexpensive solution to a costly problem: http://www.npr.org/sections/money/2016/10/05/496751771/episode-521-the-town-that-loves-death http://www.npr.org/sections/money/2016/10/05/496751771/episo...
- gavman 9y agoCame here to post that link. RadioLab also did a good episode on the difference between what doctors vs regular people say they want in terms of end of life care: http://www.radiolab.org/story/262588-bitter-end/ http://www.radiolab.org/story/262588-bitter-end/
- zafka 9y agoI was forced to have this conversation early as I was not married until recently, and my then girlfriend and I signed power of attorney for each other. It is really worth the time and discomfort to talk about this with your spouse and loved ones. If you really want to be prepared , volunteer at hospice, or at least talk to someone who does.
- deleted 9y ago[deleted]
- lmm 9y ago> Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else. I don't suppose the New York Times thinks articles like http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html http://www.nytimes.com/2013/11/20/your-money/how-doctors-die... played any part in creating this "popular misconception"?
- cbhl 9y agoThere are two ways to parse this sentence: 1) Doctors "choose between hospice and hospitals" at rates similar to everyone else, and 2) "Doctors choose hospice care" and "die at rates similar to everyone else" (despite preferring hospice care).
- tgb 9y agoWhich sentence? I wouldn't have read the parent's quoted sentence as either of those.
- burkaman 9y agoThat was a Marketplace story[1] that the NYT ran. Marketplace updated their story in 2016 to point to the same study[2] this NYT article points to. The study says doctors do die differently than the average American, but not when you account for education and income. [1]: https://www.marketplace.org/2013/11/19/health-care/new-math-health-care/how-doctors-die https://www.marketplace.org/2013/11/19/health-care/new-math-... [2]: http://jamanetwork.com/journals/jama/fullarticle/2482317 http://jamanetwork.com/journals/jama/fullarticle/2482317
- TeMPOraL 9y ago> The study says doctors do die differently than the average American, but not when you account for education and income. Correct me if my linga sciencia is a little rusty, but doesn't "something does X, but not if you account for [factors]" literally mean "something does not X"?
- mattnewton 9y agoNo, the important question there is whether or not doctors as a class die differently. If you don't account for education and income, you are just proving that doctors have different education and income than the average American, which is not very interesting.
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- germinalphrase 9y agoFrank Ostaseski did a talk at the Long Now Foundation about his experience working with the dying and the families of the dead. It's moving and touches on some similar ideas to the NYTimes article. [0]http://longnow.org/seminars/02017/apr/10/what-dying-teach-living/ http://longnow.org/seminars/02017/apr/10/what-dying-teach-li...
- tn135 9y agoOne thing that can ease the pain of death is by probably discussing the benefits of it. I wish people could sell their organs after their death. Putting grandkids through college or paying for the mortgage etc. could make it easier for people to talk about death.
- coldtea 9y ago>Putting grandkids through college or paying for the mortgage etc. could make it easier for people to talk about death. It will also make it easy for rich leeches to force poor people into "voluntary" deaths, to improve the fortune of their remaining family members.
- sithadmin 9y agoIn the end, is it truly that much different than the prevailing economic structure disproportionately forcing the poor into high-risk or hard-labor occupations that result in significantly degraded lifespan and/or quality of life? Putting organs on the market might make certain ethical dilemmas about economic inequality more obvious to the casual bystander, but the same sort of ethical quandaries are already structurally woven into the global economic system.
- xherberta 9y agoThere's only one place I'm aware of on earth where organs can be sold: Iran. Here's an interview with an economist who helped set up that market, which does seem to function fairly efficiently and has some safeguards in place to prevent coersion. http://www.econtalk.org/archives/2015/09/tina_rosenberg.html http://www.econtalk.org/archives/2015/09/tina_rosenberg.html Edit: specifically, this is about kidney donation from living donors, not after-death donation.
- eli_gottlieb 9y ago>In the end, is it truly that much different than the prevailing economic structure disproportionately forcing the poor into high-risk or hard-labor occupations that result in significantly degraded lifespan and/or quality of life? It's not different at all. We're not different from the Aztecs: our economy has become an elaborate system of human sacrifice to false gods.
- deleted 9y ago[deleted]
- xherberta 9y agoHere are a couple of related resources: An eye-opening conversation with a palliative care physician: http://www.econtalk.org/archives/2014/11/becky_liddicoat.html http://www.econtalk.org/archives/2014/11/becky_liddicoat.htm... "Five Wishes," a tool to guide you through conversations with loved ones about end-of-life care (not to be taken as a replacement for a living will, as I don't think it will hold up legally in all states) https://agingwithdignity.org/five-wishes/ https://agingwithdignity.org/five-wishes/ And if you really want to get motivated to have these conversations with your loved ones, check out Otis Brawley's book "How We Do Harm," which has a chapter that is a HORROR story of what happens when a patient's family asks that "everything" be done to keep him alive. The doctors felt that they were torturing the patient, who had no reasonable prospect for recovery. Yet the family insisted that "everything" be done, including extremely painful procedures and withholding pain medication because the patient's respiration was too fragile. Don't be this family! Don't be this patient!
- jasim 9y agoDeath is probably the most philosophical moment of our lives, but unfortunately it leaves us no time to contemplate it. Among the few things I appreciate about religion is how it tries to bring our lives into perspective by incessantly reminding us of its end. But we're all sorely under-prepared for it. Not just in the western countries - I'm from India and a close member of my family died of cancer two years ago, and we were all woefully underprepared for it. The treatment got more aggressive as the day neared; we were shuttling to and from the hospital every week, and towards the end my extended family of around twenty people were staying at and near the hospital for three weeks. He was intubated after both lungs failed. We didn't know what it really meant - a few family members wanted the doctors to "do all they can" and so they obliged. He was under tremendous pain, and went through multiple radiations, and then was intubated for about a week. It was pointless because the lungs simply weren't going to come back. But the patient nor the family was ready to acknowledge the inevitability of the situation and so we went ahead with it, and he was intubated, and we all waited. Intubation puts the onus of the big decision on the caretakers. Medical care can prolong the state of coma for quite a long time with artificial respiration - the bills simply accumulate, the patient prolongs their extreme suffering, and the entire family waits in extreme agitation and anxiety. The laws concerning removing intubation and thus letting go the patient seemed to be murky in India, and so (or for the money) the doctors were reluctant to move to palliative care, and the caretakers weren't ready to carry the responsibility of forcing the decision. I now know that in my terminal condition I do not want to be intubated. I also know that death is a taboo and it takes a certain kind of philosophical wisdom to think and speak about it. I value that a lot now, and as someone else recommended Atul Gawande's Being Mortal should be read by anyone who might die.
- WalterSear 9y ago>Among the few things I appreciate about religion is how it tries to bring our lives into perspective by incessantly reminding us of its end. Most religions, and all the major ones, do the opposite of that.
- spike021 9y agoI think at least some consider the end of life as something independent/separate of "what comes next", for lack of a better phrase.
- pschon 9y agoBe aware that hospice care is simply to end someone's life without pain. It's giving up. My father was not even in pain but everyone had given up and I can still hear the hospice person asking " are you in pain, are you in pain" but he was never really in pain; just very weak. The hospice care he received in-house in TN was free. It didn't last long. I've nothing against people who do want to give up when the pain is too much. Just be sure you understand hospice care.
- avtar 9y agohttp://deathcafe.com/deathcafes/ http://deathcafe.com/deathcafes/ I've been meaning to attend a regularly scheduled Death Cafe here in Toronto but life events keep coming up. Looks like they take place in a lot of cities around the world.
- adrianm 9y agoI have a terminal diagnosis of metastatic rectal cancer at the age of 27. I'm receiving treatment at Memorial Sloan Kettering and the disease is under control. However, it's still incurable, and making the patient aware of this was clearly difficult for my doctor, despite his incredible bedside manner. It was actually sort of humorous because the news didn't phase me; I had already come to terms with my death months ago. The reason I mention this is because today I finally went over the long term plan for my life and death. Essentially Sloan Kettering embraces palliative medicine and combination therapies and they don't give up on you even as you transition from a control-focused treatment plan to a palliative one. Furthermore, your team of doctors orchestrate all of this so you and your family do not have to stress about how to manage end-of-life care. It's really amazing. So in my case, I will continue treatment until the disease becomes progressive and we've exhausted all treatment options (chemotherapy, immunotherapy, etc). Then comes the experimental stage; MSK is a research institution so they could potentially have experimental treatments I could trial. Failing that, my primary oncologist will work alongside a doctor here specializing in palliative medicine and coordinate all future care together. Once the cancer has progressed to the point where I can no longer live a normal life (I'm still working and living life fairly normally, with caveats), they will coordinate hospice and such. It's nice to not have to worry about that stuff despite the terminal nature of the disease. My hope is that MSK will be "good at death", to paraphrase the title, when it comes to my own. So far I have received amazing care and treatment here, so I am very optimistic. All I know at this point for sure is that I'm going to keep hacking until my last breath.
- Numberwang 9y agoI'm happy you seem to have this figured out. You could spend all your time in anxiety and horror (I guess I could too, I have no idea what is in my future) but it's so unnessary. Hack on and enjoy the sunshine.
- JPLeRouzic 9y agoSir, I wish I would be able to think so clearly when facing this issue.
- anigbrowl 9y ago
- Merad 9y agoI'm surprised it hasn't been mentioned yet, but no, we can't talk. We literally cannot have an adult conversation about this topic. Not, at least, in the US. The ACA (Obamacare) tried to add a provision allowing Medicare to cover voluntary counseling on living wills, end of life care, etc., to encourage more seniors to get educated on the topic. Conservatives made up the blatant and absurd lie that the ACA would require seniors to "stand in front of death panels and convince them that they deserved healthcare." The lie stuck, and stuck hard. At one point polls showed that 30% of the public (and 47% of Republicans) believed the lie, and it persists to this day.
- cloverich 9y agoI remember this clearly because I had only just become literate on the dying process and the costs that simply not having those conversations incurred. It was so disheartening to see such an easy win for both reducing suffering and costs get politically derailed (ironically by a party claiming it's fiscally conservative). There are so few easy wins in medicine and this is very clearly one of them.
- deleted 9y ago[deleted]
- 6stringmerc 9y agoI'll take the time to explain my 20+ year journey of philosophy regarding the Meaning of Life: Why Death Isn't Scary when people finally loosen their grip on binary "Reward" or "Punishment" conceptions of "the Afterlife" tied to choice of [Insert Name Here] Religion. We're still extremely primitive as a species, by and large. In the US, this manifests in our immaturity with the subject of Death, whereby lots of people show more acceptance with pets than relatives (understandable!) on the subject.
- swayvil 9y agoI think that we need religion here. No, I don't mean this corrupted book-cult that religion has become. I mean real religion. The kind where we have an expert who goes and sees gods, heavens, afterlife stuff etc using special technology like mushrooms and meditation; and then tells us about it, and helps us deal with it. We could really use that so we can handle death better.
- Broken_Hippo 9y agoI disagree. I'm perfectly ok with death being final. No afterlife. No amount of hallucinogens have hinted at such a thing, and neither has meditation. You have to have the belief first for that to happen. You might feel better with it, but I'm good. And I'd rather not force these sorts of things on others.
- swayvil 9y agoGreat, but what about the other 99.999%? And what about the mysteries of the afterlife? Aren't you even curious?
- stupidhn 9y ago>It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. This one bothers me as a Canadian. As everyone knows, we have a strained socialized medical system with long waiting lists. How many resources are tied up futilely attempting to stave off the death of people who, for lack of a better term, "have no chance"? Meanwhile, it's pretty hard for us to get anticipatory or preventative care. I can count on one hand the times I've spoken to a doctor.
- deleted 9y ago[deleted]
- api_or_ipa 9y agoIt's unfortunate that the article did not speak of the Right to Die movement. I recently had a close family member choose to exercise this right. Instead of wasting away from inoperable cancer, she chose precisely the time and place she wanted to die. It's a tough subject, but for a non-trivial number of people, having control over their destiny provides a more satisfying end of life care. It's time for more states and countries to pass more holistic and comprehensive legislation around this right. I'm Canadian, so here's the Supreme Court judgement that established this right for Canadians[0]. The arguments are very well justified in my opinion. [0] https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/inde...
- peter303 9y agoI did not directly witness a death until I was 44. We live in an age-segregated and health-segregated society which limits experience with death. Some people asked said they were older than me for their first death. More than century ago when death rates were greater, death was commonplace in the community.
- thatwebdude 9y agoI witnessed the death of my close grandfather a few years ago at 27. I was there at the moment he died and it was quite eye opening. Ever since I've developed a different outlook and understanding of death that I would have never had had I not witnessed it first-hand so closely. He seemed okay, and didn't fight it. Ironic considering how long he fought cancer all the years before... having witnessed that fact was a little relieving to me. I imagined it much more difficult. However he was at a very different stage in life, saw it coming, and was ready. I suppose that's the most optimistic outcome.
- owly 9y agoNo fear, no death by Thich Nhat Hanh is an outstanding resource. “We should live every day like people who have just been rescued from the moon.”
- mikhailfranco 9y agoAlso see recent Economist leader and article: http://www.economist.com/news/leaders/21721371-death-inevitable-bad-death-not-how-have-better-death http://www.economist.com/news/leaders/21721371-death-inevita... http://www.economist.com/news/international/21721375-how-medical-profession-starting-move-beyond-fighting-death-easing-it-better http://www.economist.com/news/international/21721375-how-med...