End-of-life thinking

[carbonel]

A nice cheerful topic, I know. I was going to post part of this as a comment in someone else's LJ, but it wasn't really appropriate there, so it's going as a post on mine.

The question I've been thinking about is, when is it enough? When is it time to go? Or at least let go?

I'm the second choice (after my father, who isn't in great health) to make end-of-life decisions for my mother -- who is close to 80, but otherwise mostly healthy. She told me that her criterion for continuing medical care is whether she can still eat ice cream and enjoy it. If not, it's time to pull the plug. I decided, based on thinking about that, that my criterion, if there has to be one, is whether I can still read books (or have them read to me) and understand and enjoy them. If I'm past that, it's time to go.

Of course, the issue of what to do once one has decided it's time is a tricky implementation detail, especially if one is deciding for someone else, but it's useful to know that there's a point at which a DNR order is appropriate.

Have you thought about this? Your comments?

Comments

[carose59.livejournal.com]

My aunt once asked my mother if she worried about me being the one who'd make medical decisions for her if it came to that.

My mother's response? "If she treats me half as well as she treats her cats, I'll be just fine."

With cats, the criterion has always been, is there still purring? If the cat is too sick to purr, and cannot be helped, then it's time to help her let go. Which actually sounds a lot like your mother's ice cream and your books. *g*

[autopope.livejournal.com]

I'd amend your mother's criterion to "can still eat ice cream or equivalent activity and enjoy it". (After all, a temporary nasogastric feeding tube might blow that one ...)

"Absorb media [books, audiobooks, TV, web] and understand and enjoy them" is a good one for me.

However, I'd add an extra get-out: "if not, there's a reasonable prospect of recovering enough to do so". And then, thinking about my dad's endocarditis (which announced itself via what looked at first like a massive stroke, and left him in a coma for three weeks) I'd also add, "and don't make immediate decisions to pull the plug: wait at least four weeks if possible."

(My father appeared certain to die overnight right after the ischaemic event, aged 80. Then he looked certain to be a cabbage for life for another two weeks. Then it was paralysed on one side for life for a week. Then it was "yes, but he won't walk unaided" for a couple of weeks. In the end? Very mild cognitive impairment and a weak right thumb. And that was seven years ago. So: I strongly recommend against making decisions in haste, however bad the situation looks.)

[carbonel]

Very good point. And unfortunately, too often you have to make that decision based on insufficient data. My brother was in a disabling accident several years ago (bicycle vs. automobile; bicycle lost). He had a traumatic brain injury, and my parents had to decide whether to treat things as aggressively as possible or let him die -- at a point where they had no good idea of the outcome, just possibilities. They chose the aggressive approach. After surgery, he was in an induced coma for a week or so, then they brought him out of it and there were months of rehab.

In the end, my brother is paralyzed on his left (dominant, unfortunately) side and has some mental impairment, more emotional than cognitive; but his mind and personality are essentially intact. There was at least once during the rehab process when he wished he hadn't survived (he told me, that's how I know), but overall, it appears clear my parents made the right choice.

[kalmn.livejournal.com]

*nods*

my dad was in a coma for six weeks about ten years ago. it was... a rollercoaster, shall we say, so we were only beginning to discuss what if he doesn't get any better, when he did.

this means that i am able to discuss this subject briefly, as i am doing here, or at great length preferably with a few strong drinks in me and a box of kleenex.

[ritaxis.livejournal.com]

It's not simple at all. My mother had always been adamant that she didn't want any kind of life support at all, but when it came down to it, the emergency room doctor thought she was going to have a decent remission for a while, and so we didn't go for the no-code right away. And then she wasn't certain that she was ready to let go. We had intense discussions about what to do and when. After a couple of weeks it became apparent that she wasn't going to have that time after all. At that point, my mother, who had always been so clear about what she wanted at the end of life, could only say "I don't know what to do."

But then, there came a day when it became clear again, and we "weaned" her from the oxygen and we watched her fade.

I'm not giving specific instructions to my kids, because it doesn't seem to make things easier after all. We've talked about the general issue only.

[barondave.livejournal.com]

My brother (the doctor) had the family all look at Five Wishes (http://www.agingwithdignity.org/five-wishes.php) and discuss it amongst ourselves.

I don't recall where mine is, but it's around here someplace.

[daedala.livejournal.com]

I was going to suggest that as well, since among other things it's a framework doctors probably will have seen before and understand.

[dd-b.livejournal.com]

I've thought about this. I'm the backup to my mother for her medical decisions.

No clear easy answers here, either. It's quite obvious that doctors have often been wrong in even fairly confident predictions.

For my own case, the idea of still being able to enjoy something or things is key; reading, listening to music, talking to friends, organizing pictures, reading and writing email; something that I enjoy. The idea of investing some time to regain that state, even if the recovery time itself has little to recommend it, also seems right for me.

(The example of cats purring probably isn't quite right; there is considerable evidence that it either means they're happy, or else that they're unhappy enough to invoke that to comfort themselves. I mention this in case anybody who takes care of cats might not know about it.)

[minnehaha.livejournal.com]

B and my daughter have copies of my wishes. Mine include my desire to have my life prolonged by any reasonable means so that my death can be attended by [short list of people], should they wish to hold my hand and say a few last things.

K.

[redbird]

I've thought about it, but not come to any firm decisions, unless "prioritize pain relief over extending life if that means getting an extra few weeks" is a firm decision. So, if I'm dying of cancer, give me the heroin even if it means I'll die in one week instead of three. Beyond that, it's hard to be sure what I'll think in thirty or forty years, or even ten.

[mrissa.livejournal.com]

I'm glad you're getting this stuff sorted out now. My great-grandmother was extremely clear about her wishes, but one of her daughters was in strong disagreement with those wishes, and did not resign herself to them by the time it became an issue, and at the time there hadn't been a good test case in Minnesota for when the family members disagreed with the directives.

[cakmpls.livejournal.com]

I've thought A LOT about it, but don't have any firm conclusions except this. The two main factors for me are (1) Can I communicate in any way, and can I understand others' communication to me? (2) Am I doing anyone any good? (Because sometimes someone, and I think especially a child regarding a parent, gets something from the person still being alive, even if that's all they are.) If the answer to those two questions is no, it's pull-the-plug time for sure. But I'm still working on anything short of that situation.