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Medical aid in dying, my health, and so on
- daedrdev 1y ago> Another slim possibility is a heart transplant. I am not interested. I’ve explained my reasons more fully to people who are close to me, but they basically boil down to the fact that an organ transplant requires a full commitment to the process, and I’m not willing to make that commitment. Seems a little strange to not want to try to commit to the requirements for transplant and instead just die. Perhaps they (arguably justifiably) fear the trauma that further interventions will bring.
- jrvarela56 1y agoI always ask not to be snarky but because our culture seems fixated on living forever: what’s so bad about dying?
- ian-g 1y agoI can’t speak for anyone else, but it feels like there’s more to do. More to learn, to see, to visit, etc… When you’re ready, you’re ready, but people should have the option of continuing if they want.
- nancyminusone 1y agoIf you're a big fan of doing nothing forever, I'm sure it's fine.
- jf22 1y agoBetter than getting shocked all day or feeling shitty after a transplant because of the drugs you have to be on forever.
- mrguyorama 1y agoFor some people yes, for others no.
- the_af 1y agoI get what you're saying, but continued existence has to be balanced against the quality of said existence. If it's agony, pain or extreme disability that prevents enjoyment of life, life seems less compelling.
- SoftTalker 1y agoSame as before you were born. How traumatic was that?
- buildsjets 1y agoThe Bardo time? Pretty fucking traumatic, at least first one I can recall was. Practice makes perfect. Why do you think so many kids are afraid of the dark? And why do you think that infantile amnesia exists to begin with?
- wat10000 1y agoDoesn't matter, it's not like there's a choice.
- jvanderbot 1y agoI would be horribly sad about missing my kiddos' milestones. It's an absolute joy watching them grow up. But if my health made me feel like I was going to miss them (or worse: derail them), then I would be forced to admit it wasn't for the best for me to keep going as is. If I was sure that was the case, it would be easy. Conversely, it's easy to examine "from the outside" someone else's situation and say they should keep on going. I'm not so sure I could endure what TFA describes either, especially since it's probably hopeless, and especially after watching my own father sit dying for days in a hospital after his heart attack while the doctors poked him to make him move to show my mom he was still alive. It was gruesome and he died anyway.
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- daedrdev 1y agoNothing is bad about dying, its a part of life, but his insistence on giving up despite a major medical option remaining feels illogical even though they may have good reason to not want it.
- vjvjvjvjghv 1y agoThe decision may be more logical once you experience the same situation
- the_af 1y agoMy take from reading the blog post is that this person is understandably disappointed, scared and traumatized by past treatment failures. He described being scared to even try sleeping, always fearing the next shock or heart attack. Also some of the treatments seem to have been exploratory or "just in case", and then failed. That leaves a psychological scar. It's very difficult for someone who hasn't experienced this (like me and, I guess, you) to put themselves in the other person's shoes. I think I can understand the decision he's making, and it doesn't seem to me to have been taken lightly.
- daedrdev 1y agoWell said, I think you put up a reasonable answer. And at some level their situation will not change, they still will have heart problems while waiting and may go through all that to not even get a transplant
- weatherlite 1y agoI get it but can't a transplant actually work well for him ? I've just read the statistics and they seem really decent. Perhaps he "needs" anti depressants and go for a transplant. It's not clear to me he is in a completely lucid state of mind - he is saying himself he thinks he has PTSD, plus he has a bunch of stuff to live for it's not like he hates life - he just hates this shitty medical mess he is in. However, it looks like his family is on board with him going through with this so what can I say.
- gusmally 1y agoWhen reading the rest of his posts, I think you are right to ponder how his mental health is negatively impacting his outlook. He seems to be more ready to accept death than I'd expect, given how young he is. I wish him and his family the best; an unimaginable situation.
- finaard 1y agoA transplant always is a life altering change. You'll be on immunosuppressants for the rest of your life which has a massive impact on your quality of life - and that's _if_ you get a transplant before you die. I have no idea how I'd react in that situation - but I can understand people who'd rather not. Especially considering that you might not want to take one of the few organs from a person who might be willing to fully commit to that.
- nancyminusone 1y agoThis is at least the second time I've heard someone say that the defibrillator implant shocks are so bad, they would rather be dead.
- the_af 1y agoI never thought about the uncertainty of it all. If the shocks are very painful and can come at any moment, without notice, they must be terrifying. The author of the article describes being fearful of even trying to sleep...
- Modified3019 1y agoIt’s literally like those experiments that test the effect of electric shocks in rats for avoidance of something, and there’s a control group of rats that are just shocked randomly. The randomly shocked rats become highly stressed and neurotic.
- nneonneo 1y agoIf the defibrillator has any kind of warmup period before it fires, I wonder if that interval could be used to send a signal to the patient, e.g. to their phone. The most “usable” form of this would be to allow the patient to agree or disagree to the shock (maybe defaulting to agree if no response is given in time); this would place the agency in the hands of the patient and allow them to be mentally prepared. Missing that, at least a couple seconds of warning would be better than nothing. (Disclaimer: I don’t know much about these devices or the latency requirements between detection of an abnormal condition and treatment; these suggestions only work if the heart can tolerate a few seconds of delay. It seems plausible since the detection itself is based on monitoring of heart rhythms over some period of time, but I am not an expert.)
- alwa 1y agoI can only speak for myself, but, assuming it's feasible to implement as you describe, that sounds awful. In full auto mode, unpleasant experiences happen, but at least without specific anticipatory distress. I don't see that you alleviate the overall existential state (of the possibility of shocks constantly looming over you forever) by offering individual instances of temptation to choose comfort over lifesaving intervention. Now the unpleasant experiences become something that I'm doing to myself, and that my animal brain in the moment has the power to prevent. Every intervention becomes a test of my willpower: I know that I need this, I know I don't want to do it in the moment... What's the harm in rolling the dice this one time, in exchange for avoiding just this one painful episode? The parallel that immediately comes to mind is "well, just this one cigarette won't kill me..." I'd much, much rather pre-commit than have to face that aversive decision time after time and day after day. Knowing that my life is on the line if I'm caught in a moment of weakness. That calculus is much too important to me to leave to the whims of my reactive brain.
- NoMoreNicksLeft 1y ago>Seems a little strange to not want to try to commit to the requirements for transplant and instead just die. You just have different values than the OP. I have values different from yours as well that would have me turn down a transplant... and it's not that I wouldn't want to live longer. There are just some measures I'm unwilling to take.
- vjvjvjvjghv 1y agoThis is not a matter of values. It’s more like you can only be sure what you would do in a situation when you are actually in it. There are plenty of people who claim “if I was in situation X I for sure would do Y” but will reevaluate this when they are actually in it.
- reverendsteveii 1y agoThey'll do what when they're actually in the situation?
- vjvjvjvjghv 1y agoThey will take another look at the available options and pick what they think is the best option. This may be different from the one they proclaimed they would take.
- reverendsteveii 1y agoHow do they determine which is best?
- vjvjvjvjghv 1y agoThe same way you determine anything in your life. You make tons of decisions every day based on the situation.
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- reverendsteveii 1y agoYeah, my thought on reading this line was that dying also requires a pretty irrevocable commitment. I can't make this decision for this person and its ultimately going to be the kind of decision that defies so-called rational analysis but I was caught by the inconsistency in this particular piece of reasoning.
- pseudosavant 1y agoSlight oversimplification, but dying is a one-time commitment, and the transplant requires continual commitment (or re-commitment) over a very extended period of time (the rest of his life).
- reverendsteveii 1y agoagain, and this may really just be sophistry but it deserves acknowledgment, I wanna zoom in on the phrase "the rest of his life" Let me be clear: I understand the difference and I agree with you. The reality is that a transplant would probably be a lot of work and suffering and I can definitely understand opting out of it. All three of the grandparents I actually got to meet ended up doing this same math and getting the same result: sometimes life-extending care isn't worth what you have to go through to get the extension of life. I guess what I'm interested in playing with here is the language we use to abstract the reality, and how it doesn't really hold up once death is accepted. Treatment is a commitment. So is dying. Treatment will go on for the rest of his life. Without treatment, dying will go on for the rest of his life. A lot of the things we do and ways we look at things assume that dying is 1) very far off 2) to be avoided at all costs If either of these things becomes untrue the calculus we do to determine reasonable courses of action goes flying out the window. Neither of these things is true for this person, but it's true for all (for a given value of all) of us trying to talk about it and I see throughout the thread this interesting disconnect that basically boils down to people saying "You can't kill yourself! You'll die!"
- wat10000 1y agoThe dying happens with either course of action. The transplant is in addition to it, not an alternative.
- leoxiong 1y agoI think this view is needlessly reductive and lacks compassion and understanding for their suffering. Not every problem should be approached with an engineering mindset.
- SoftTalker 1y agoEverybody dies. It's not something to fear, if you have come to terms with it.
- vjvjvjvjghv 1y agoPeople aren’t a science experiment. At some point they have had enough and it’s something we should respect.
- roxolotl 1y agoI agree with the other comments but one thing that’s also missed is that by accepting a heart transplant you’re likely also taking a heart transplant from someone else. It is incredibly altruistic to be honest enough with yourself about what you’re willing to live with.
- TrackerFF 1y agoI just want to chime in here. Getting a heart transplant doesn't necessarily mean buying yourself 40 more years. Could be 5, 10, 15. If I recall correctly, the average is around 10-15 years. You also have to be on immunosuppressants for the rest of your life, with all the added risks that come with that (infections, cancer, organ damage, etc.).
- hypeatei 1y agoI wasn't aware that Oregon had a "death with dignity" program for terminally ill people. It was enacted in 1997! Do other states have similar ones? I'm a huge proponent for assisted suicide in general, even if you're not terminally ill. Regardless, these types of laws are a step in the right direction.
- AStonesThrow 1y ago[dead]
- altairprime 1y agoBetween the timber wars and assisted death, it was a hell of a decade. They introduced statewide vote by mail I believe around then as well.
- bufordtwain 1y agoYes, other states have it you can Google for a list.
- hypeatei 1y agoHah, yeah, I could. I guess it was more of an invitation for people to discuss specific state programs and their experience with them (e.g. if they had relatives who used it)
- gadders 1y agoI don't know why people are so for it. The process is "cruel and unusual" when it's done to criminals but the same process is fine when you request it.
- pseudosavant 1y agoThe question of choice/agency is probably at the heart of the difference. One, the state is taking someone's life against their will. The other is allowing someone to exercise their own agency to end their own life.
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- fnord77 1y agoit's terrifying to me all the medical cases that cannot be adequately treated with the current state of medicine.
- strongpigeon 1y agoI’m incredibly grateful that medical aid in dying is an option and that one can have agency not only in how they live but also in how they die. I had someone close to me opt for it. They were greatly suffering and had no chance of their condition getting better. Having a planned final date allowed us to say farewell and thank each other for all the great moment we shared without feeling ominous. The last phone call I had with them will stay with me forever.
- pseudosavant 1y agoI've been grateful that a couple of loved ones were able to choose to end their suffering. Both times, it was a sad, but very rational decision. I do wish there was a lot less stigma about it. People said some genuinely awful things to my aunt about her choice before she passed especially.
- gusmally 1y agoIt must be hard to say one last permanent goodbye.
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- vjvjvjvjghv 1y agoIt beats seeing them suffer over years.
- lurking_swe 1y agoon the bright side, at least you don’t need to worry about “i wish i told them __ before they died.” It’s a good way to have closure i suppose.
- antisthenes 1y agoIt's a mercy we allow our pets. No reason we shouldn't allow it to ourselves.
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- scottcha 1y agoMaybe I’m a statistical anomaly or maybe I just don’t know the baseline occurrence rate for this stuff but I have 3 close acquaintances two of which are this persons age or younger with similar symptoms (tachycardia, though to a lesser degree) going on. Is there data on the incidence rates for this stuff and has it been increasing since 2021?
- georgeburdell 1y agoNot tachycardia, but I had frequent heart palpitations for a few months after contracting Covid the first time in late ‘21. Did not notice anything in subsequent times. Maybe it was a placebo effect, as I had knowledge of Covid’s effects on the heart, maybe not.
- throwanem 1y agoI doubt it was placebo. I had the same for about a year after a wild-type covid infection in early 2020.
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- scottcha 1y agoTurns out there is multiple publications associating tachycardia and other heart symptoms with long covid. https://pmc.ncbi.nlm.nih.gov/articles/PMC8356730/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8356730/
- tonyedgecombe 1y agoThe medical profession has got much better at finding these sorts of anomalies. Whether that is good or not is an open question.
- gadders 1y agoI wonder if those implanted defibrillators would be more manageable if they gave you (say) a 15 or 30 second audible warning so you could prepare yourself?
- luka598 1y agoPerhaps they would, but I would guess that you would still get scared when hearing the warning instead of the shock it self. For example if you would get stabbed 15 seconds after hearing a beep I think you would develop pavlovian like response to the beep itself.
- Nextgrid 1y agoCounterpoint: a warning may not avert the fear but still be beneficial in cases where the person needs to prepare themselves to avoid a sudden fall/etc.
- dawnerd 1y agoCould see it very useful if you're driving. Might even save other peoples lives in the case of a crash.
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- BriggyDwiggs42 1y agoWhat if it had the user press a button to trigger the shock? Would it help them prepare for it?
- jollyllama 1y agoI'm completely ignorant on this topic, but if the defibrillator was shocking him so frequently, but he has survived having it turned off, doesn't that imply the patient was being shocked far too frequently? I can't imagine that has a positive effect.
- EA-3167 1y agoSo the issue here is that overly rapid beating (Tachycardia) in the lower two chambers of the heart (Ventricles) can be harmless, but left alone it can lead to dangerous heart rhythms (Such as Ventricular Fibrillation aka VFib) and arrest. The cardioversion is there to prevent it, but it's true that the fast beating of the Ventricles (VTach) is most likely to resolve without killing you. Still in a patient like him it will eventually lead to VFib and then death, so you implant a device that prevents that cascade. There are settings for these devices about the threshold of when and how to shock, but ultimately it's still going to err on the side of caution because any sustained VTach is dangerous.
- BXLE_1-1-BitIs1 1y agoPerhaps the question is how much misery are you willing to tolerate to prolong your life for how long? Certain treatments take weeks to recover from while giving you months, years, even decades of life expectancy with good quality. Other treatments of late stage terminal cancer only give you a few more weeks in the hospital.
- smeeger 1y agomy life is miserable even though im not sick. i would not qualify for assisted suicide. what does that mean? but if i got a terminal illness i would. so my life is motivated by the idea that i will someday achieve something that will make it worth it… and if i became terminally ill then i would no longer be able to achieve that goal… so i should end it. maybe i should reorganize my life so that i am not miserable. im not sure thats possible. i had a little early retirement before and i was still miserable. i am miserable dealing with people in this country. everyone is petty, mean and ready to stab you in the back
- sandworm101 1y agoI ran into a stat recently that gave me pause. Medical air in dying, what canadians call "MAID", is now a significant cause of death. It's roughly 1 in 20 of all canadian deaths. That is far higher than I would ever have expected. https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2022.html https://www.canada.ca/en/health-canada/services/publications... >>> In 2022, there were 13,241 MAID provisions reported in Canada, accounting for 4.1% of all deaths in Canada.
- raydev 1y agoWhat gives you pause about the number?
- ian-g 1y agoi don't think it's honestly that startling. extrapolating that number gets you to a total of 323k deaths, probably under a percent of canada's complete population based on their 2021 census population of about 37 million. in 2021 there were 305k deaths in 2023 there were 326k deaths, and we learned that one sixth of MAID requestors died before they were deemed eligible or ineligible and 70% were in pallative care a lot of people die slowly and painfully, and a lot of people think long and hard before making that request.
- mrguyorama 1y agoIt's almost certainly better for the vast majority of humans to die on their preferred schedule from something that wont cause them to suffer. The old joke goes: "I want to die like my grandfather, peacefully in his sleep with no pain, unlike his passengers who all died screaming and in agony" Most "natural" deaths are just various forms of suffering. You decay while still technically alive, your body stops working, your brain turns to pudding despite your physical fitness and healthy life. Why WOULDN'T more people choose to die peacefully, if they don't have religious or moral problems with suicide? I would expect, in an imaginary utopia, that the vast majority of non-accidental deaths would be by choice. The alternative is laying in an expensive bed for an indeterminate time while a doctor pumps you so full of opioids that you are barely you anymore anyway. Or like my Memere, you die by choking on your own vomit, alone in your home, with everybody coming to see you for your birthday in a few days but miss you, because you die first. She probably would have preferred to schedule it.
- selfmodruntime 1y ago> I’ve explained my reasons more fully to people who are close to me, but they basically boil down to the fact that an organ transplant requires a full commitment to the process, and I’m not willing to make that commitment. I can't imagine being that indifferent to life. I would give all I could to live just one more day if I were in that position.
- scotty79 1y agoNobody knows what would they do in extreme circumstances until they end up in those circumstances.
- qualeed 1y agoFrom the post: "I want to live [...]" I am saying this completely honestly, with no sarcasm: I truly hope that you never have to experience (or witness a loved one experience) the kinds of illnesses/injuries/diseases that would make someone consider assisted death. It is a blessing that you can't imagine the situation. Because the situations that make you consider assisted death are awful.
- eptcyka 1y agoThe heart transplant will have them live in a state of uncertainty, most likely having to use a defibrillator until a suitable heart is found, if it is found. It is risky, with many points of failure. As such, a certain death of their own terms might be more valuable than a chance of a life with the certainty that they will have to go through the suffering that has already driven them to disable the defibrillator mixed in with some more risk and pain. It would be a rollercoaster ride for the hungover, except they don’t know id they will get to step off. And the loved ones get to watch on from the side lines. Even with all that, it is tough to imagine not opting for the transplant, but this should just serve to help you empathise with pain they are going through.
- nancyminusone 1y agoI think the same as you, but I recognize that those in such circumstances now are literally experiencing horrors beyond my comprehension. However bad you think it might be, it would have to be unspeakably worse, which for some, it evidently is.
- BrandoElFollito 1y agoI seriously wonder why a state (France in my case) preggers to have people jumping from buildings on into a train than to have them terminate their life peacefully. I know that when I have Alzheimer or ALS out similar stuff I will commit suicide, quickly. I will have to prepare early to have some poison or jump into a train (something I would like to avoid to not traumatize the driver). Why not simply helping me when this is what I want, in the name of who knows what.
- martinpw 1y ago> I know that when I have Alzheimer or ALS out similar stuff I will commit suicide, quickly. One of the common features of dementia is that you don't know you have it. It is just that everyone else around you seems to start behaving weirdly while your own reality is unchanged. It is both a blessing and a curse, but it does mean you may not ever have that moment where you can make the choice. My mother has been bedridden for a year, completely helpless, on a daily drug regimen, recognizes nobody, would absolutely not want to continue living in this state, but is no longer capable of making that choice and so will stay in this condition for potentially several more years until she finally dies. It's a horrific final chapter.
- BrandoElFollito 1y agoI thought about that too, and was hoping for a diagnosis before I am incapacitated. I actually wondered about a dead man switch, where poison would be released into the bloodstream if I do not acknowledge that I am fine. This would also manzge comas and lock-in. Technically it is quite complicated though. I pity you, and this is exactly the reason I want to quickly end it so that my family does not suffer for a long time.
- jonasdegendt 1y agoThe Netherlands has a legal death man switch. You're able to consent to, and set up euthanasia early on in your diagnosis with the intention to die at a later date when it gets worse. I don't know the exact numbers but in practice it's basically worthless because the doctors at hand end up in an ethical catch 22. This person that was sound of mind might have consented to euthanasia, but now they're not sound of mind anymore.
- blindgeek 1y agoI am the OP. Surprised to see this at the top of HN.
- croisillon 1y agoGood luck!
- delichon 1y ago“All lives are the same length, Lazarus. They're all just one moment long. It’s the moment we’re in. The rest is memory or imagination.” — Dora, in Time Enough for Love by Robert A. Heinlein
- soulofmischief 1y agohttps://news.ycombinator.com/item?id=44251900 https://news.ycombinator.com/item?id=44251900 just thought I would leave this comment here in case it makes you reconsider. Don't let sunk cost fallacy make you commit to something so permanent just yet if it turns out this therapy is within reach after all. Either way... Good luck. Hug your loved ones tight.
- couchdb_ouchdb 1y agoBest to you OP. I always think of the Five Remembrances: I am of the nature to grow old. There is no way to escape growing old. I am of the nature to have ill health. There is no way to escape having ill health. I am of the nature to die. There is no way to escape death. All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them. My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.
- sn 1y agoI am surprised to see it here too. I find it unkind. Not that you need to hear it from me, but you will be remembered and missed.
- squigz 1y agoWhat's unkind?
- A_D_E_P_T 1y ago> "A few months ago, a friend sent me a link to a university doing clinical trials using stem cells to repair the heart. It seemed really promising. Unfortunately, they are in Germany, and they only accept German residents. So that wasn’t an option." It's not that tough to gain German residency. There's even a "Freelancer Visa" that gives you a residence permit. If you pay an immigration consultant a few thousand bucks, and don't have a criminal history, it can be done rather quickly.
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- AStonesThrow 1y ago[dead]