> 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.
I think this view is needlessly reductive and lacks compassion and understanding for their suffering. Not every problem should be approached with an engineering mindset.
This is at least the second time I've heard someone say that the defibrillator implant shocks are so bad, they would rather be dead.
I 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...
It’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.
If 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.)
I 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.
Maybe that works for you, but in the case of the article, the random shocks were bad enough to make him literally choose death over the shocks…
I for one think we should probably not be hooking up pacemakers to bluetooth and deciding whether or not to administer shocks based on wireless communications.
I 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.
People aren’t a science experiment. At some point they have had enough and it’s something we should respect.
>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.
This 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.
They'll do what when they're actually in the situation?
They 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.
How do they determine which is best?
The same way you determine anything in your life. You make tons of decisions every day based on the situation.
Np, I actually have values. It's difficult to believe, most of the people around you apparently have none. First off, my own organs are spare parts for those in my family who are younger than I am... children, nieces, nephews, etc. They're never to donate to anyone in a generation older than them (lateral's sometimes ok). And I wouldn't accept donor organs from someone not in my family. I've got other people to think about than myself, so staying alive at any cost (financial or moral) isn't a consideration at all. Not saying I wouldn't hesitate if facing the end, but I've thought about this alot over the years and I've already made the choice.
Yeah, 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.
Slight 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).
again, 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!"
The dying happens with either course of action. The transplant is in addition to it, not an alternative.
My 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.
Well 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
I 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.
A 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.
When 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.
Everybody dies. It's not something to fear, if you have come to terms with it.
I 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.).
I always ask not to be snarky but because our culture seems fixated on living forever: what’s so bad about dying?
I 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.
I 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.
Nothing 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.
If you're a big fan of doing nothing forever, I'm sure it's fine.
I 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.
Better than getting shocked all day or feeling shitty after a transplant because of the drugs you have to be on forever.
Same as before you were born. How traumatic was that?
The 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?