This doesn’t really belong in the Quarantine Zone, because it isn’t about COVID in particular, although it could apply.
Anyway, I hear and see people saying all the time, “I wouldn’t want extreme measures taken, unless I had a decent chance of recovery. I wouldn’t want to be paralyzed/brain damaged/dependent on machines, etc. Just because we can ‘do everything’ doesn’t necessarily mean we should.”
So, is there anyone here who DOES want everything done, regardless of the chances of recovery? I’m curious.
I don’t know about everything – that’s a lot of things! – but I’m not prepared to say now I’ll be ready to die when time comes. I’d rather have a shot at life than throw it away.
I’ve thought I wouldn’t want to be laying there with a bunch of tubes sticking out of me, etc etc.
But my GP and I sometimes chat, and one time he told me that his patients have a wide variety of attitudes about this, except when death is hours or minutes away (if they’re able to communicate). When that happens, he told me, absolutely everybody begged to please do anything and everything possible no matter how desperate. I don’t think this was his standard discussion, either, it was more about his own experiences. FWIW.
I would only want to be brought back if there was a reasonable possibility of return to an acceptable quality of life. [Note as people get older and sicker, the criteria for an acceptable quality of life goes down.]
Musician Phil Lesh, who has a liver transpant, usually ends each show with a short speech about how important organ transplants are. He says, “just tell your loved ones: ‘if anything ever happens to me, I want to be an organ donor’.” Once, at that point, I turned to my friend and said “if anything ever happens to me, I want to be an organ recipient”.
I’m social friends with a couple of GPs. While not as absolutist as you’ve put it here, they report a lot of people are in the “try everything” camp, and many become moreso as it gets close.
In these Docs’ views, this is a product of ignorance and unpreparedness. They themselves, with the benefit of having watched the end game play out a lot, are far more inclined to advise avoiding heroic measures, going DNR early, etc.
In their view, there are some “trapdoors” in the medical intervention system, where once you enter the next stage of dependency, e.g. a feeding tube, it becomes far harder both to recover to near-normalcy and also far harder and longer and more miserable to die.
Better in their view, to not jump through that trap door. At the cost of whatever additional longevity (low quality-of-life longevity, but longevity nevertheless) that avoidance might forego.
There is a difference between an emotional attachment to “hope”, and a clear-eyed cost benefit analysis of two admittedly very shitty choices. Not made any easier by the unknowable unknowns of how either choice will actually play out for any given person.
Nope. I’m ok with the big dreamless eternal sleep. Of course I enjoy living but if it comes with a cost to where my quality of living takes a deep enough dive or where the options to keep me going is wrought with the chances of making things worse- Just let me die already.
I’ve heard it, and can’t remember which one it is. Keytruda, maybe?
Over the decades, I’ve heard about drugs or treatments that might give someone, say, an extra month, but at what quality of life?
When I got my own cancer diagnosis, a woman I know told me that her husband died from pancreatic cancer, and he had the same surgeon I did. This surgeon admitted that the operation wouldn’t cure him, and probably wouldn’t even prolong his life, but would likely improve its quality. She said that it probably did work for her husband, because his QOL was fairly good until just a few days before he died. In short, it was to prevent X, Y, or Z from happening, and it did.
Some years ago I read Atul Gawande’s “Being Mortal Illness, Medicine and What Matters in the End”. I highly recommend it for…everybody. You’re all going to die someday, and there’s a decent chance that it won’t be a sudden death - you may end up with progressively declining health, or even a terminal illness, that forces you to make difficult decisions about where to make a tradeoff between quantity of life and quality of life. This book can help you start thinking about that.
Gawande says health care professionals historically haven’t done a good job of educating patients in this regard, or about being really honest about the prospects for some treatments and the misery they may incur - but he says they’re getting better at it. You still may or may not get a doctor who is skilled in this regard, so it’s best to prepare yourself to ask them for brutal honesty about prognoses, probabilities, side effects, complications, and quality of life, and it can be a bit easier to sift through all that info if you already have some idea of what kind of quality of life you find acceptable.
Watching my brother in law with terminal cancer was excruciating, because they did want everything possible done in hopes for some miracle cure to come along. And because they weren’t terribly educated about the likely progress of the disease.
(Dying of kidney failure three months earlier is better than dying of suffocation after three additional months in extraordinary pain tied to oxygen tanks).
That most certainly wasn’t what my mother did. When it was absolutely clear that she was dying but was still barely able to communicate, she was still utterly clear that she wanted no feeding tubes, or other interventions other than for comfort.
Yes, I also recommend this book to everyone. Really, it changed my way of thinking about dying. I think it might be time for me to read it again, too, here in the middle of the pandemic, just to remind me of what the real worst cases are. Gawande is very readable and very straightforward.
Another upvote for the book. Your entire post is spot-on and I could not have said it so well.
If the first time you (any yo) have ever thought about this stuff is when you or your loved one is in extremis … well, you’re going to make crappy ill-informed scared literally to death decisions. That’s completely predictable.
Having done the work in advance in the cooler environs outside of a crisis, the odds on doing this process better go way up.
His book was a real path-breaker when it came out. Many other authors have since plowed similar ground. Yet he remains a classic in the field. The details of care and treatments change, yet death and the dilemmas surrounding it are timeless.
I think that most people would adapt to a much lower “quality of life” and remain happy with living than they think they would when relatively healthy and able. There are a lot of situations that seem beyond the pale right now but I think I could still find happiness in.
If I were in some kind of permanent state where I could only communicate by blinking but could still think and see or hear, yeah, I’d probably want to keep living in that state, even if it required constant machines and indignities.
If I were in a long coma and there’s no medical reason to think I’d ever wake up, then sure, turn off the machines, but pretty much anything above that, I want to live!
I’m one of those people whose attachment to life is easygoing at best and I’m very healthcare worker adjacent, with friends in some of the most intense fields of healthcare (respiratory therapist, ICU nurse, etc.) so I have a pretty realistic view of what extraordinary measures actually MEAN to those receiving them. I’ve also had long stretches of chronic pain and although I’ve become very good at coping with it, I know way too much about how debilitating and stressful and depressing it is to be inhabiting a body that no longer works properly. With that in mind, I’m completely okay with not insisting on heroic measures to prolong my life at any cost and have and will decide on a case by case basis what I’m willing to do to stay on the planet. I’ve already nixed most measures (I have a POLST directive active and I’m DNR) because I know how very useless most of them are and don’t feel like putting myself, my family or my healthcare workers through all that mess and bullshit. If something’s gonna kill me, I want all the drugs to make it as pain free as possible and I’ll slip out the side door without fuss, thanks.