(no subject)

[fan_eunice]

Morning, and happy Eleventy day! As it appears no rapture will be occuring we can be confident that adventures with a madman in a box will continue.

While I wait, I'm gonna get morbid on y'all for a bit here, because I want to talk about this article in the NY Times about palliative sedation (more bluntly called terminal sedation).

Do not follow behind the cut if you are not up for talk of death and dying.



Year three, the scary year in triple negative, is turning out interesting in the thoughts it is bringing up. A brand new kind of hip pain (making a doctor's appt this week) in conjunction with a study I just saw that says non-braca+ trip neg patients actually have a less than 50 percent survival rate, even lower than the 60-70 that had me freaked out before (and I thought a negative brca was a good thing, dammit) has me thinking about, well, death. No, I haven't given up hope, I know I've still got a shot for the magical 5 years and a cure here and I'm not conceding unless I have to. But I think about it.

And the thing is, I'm not particularly scared of death. I am, however, scared of the dying part. And, so I'm reading that article thinking goddamn that sounds AWESOME and being utterly baffled that this is controversial at all. The idea that if I'm in a lot of pain and distress, that treatment has been exhausted (or I've decided I'm done with it) and there's really no where left to go but the final steps, that I can drift nicely off to sleep and skip the whole 'dying' bit in favor of a nice relaxing coma? Not scary. If I knew I had this option it would take about 90 percent of the terror out of the possibility this shit will go south.

This seems like such a no-brainer to me, even more so than direct euthanasia (which is an option I'd also like to have, but wonder if I'd take). What is even the point of unnecessary suffering for no gain? Like, sure, patient X was terrified and hurting, but he lived a week longer? That the people around him don't have to face feelings of guilt or moral qualms? Fuck the people around him. It ain't about them. And that's what bugs me most about it. Almost all the concerns and questions revolve around the people who aren't dying, and not what would cause the least stress for the one who is. Get over yourselves, ya know?

On the upside, I'm glad I read that article because now I know that if it does come down to it (and knock wood that it doesn't), the first question I'm asking any hospice is 'do you do palliative sedation?' and if the answer is no, I ain't going there.

Comments

[phoenix64]

Though much of the time I enjoy living in the future it makes me sad and angry sometimes that we still haver such a difficult time talking about sex and death. Reading the article makes me frustrated that doctors have such a hard time talking about it that they have greater difficulty discussing how to better care for their patients in this particular way. Because it is patient care.

[fan_eunice]

Seriously, it seems like half the problem is that no one wants to talk honestly about any of this. We're so wrapped up in the idea of offering 'hope' that doesn't exist and giving the appearance that we can cheat death even when it is impossible, that even having a conversation about it is seen as...unseemly.

You can't talk about what to do in the last weeks of life if no one will even admit that the last weeks of life exist.

[laurashapiro]

It's a no-brainer for me, too, and I share your bafflement that it should be controversial or a big deal in any way. I get that it's hard for loved ones, but let's face it: death is gonna be hard either way. Why not help our family and friends to go in the most painless way possible?

[fan_eunice]

I think one of the things we need to do is redefine 'hope'. Something I noticed in that and the other 'end of life' articles in the series was both doctors and family members continually saying things about not wanting to remove hope/give up hope. Like dying is the last few minutes in a hotly contested sports game where a three pointer at the buzzer could stop it, but only if you believe.

What if hope was not 'that x will get better', but 'that we can look at what IS going to happen and deal with *that* in the most comfortable way possible' And do it long before there is no choice to stay in denial. I would much rather have that conversation with my doctors when it *isn't* immediate, so that when the time comes it is one less thing to worry about/stress over.

In just about every situation, good or bad, that I've been in it's the not knowing, not having a plan that causes the most stress.

[laurashapiro]

Oh, I agree 100%. This bizarre idea that if you cling to the miracle, you're somehow making things better, is one I find actively harmful. "Hope" should not mean "miracle", it should mean "a way for things to be better than they are now." Where better = certainty and comfort.

[phoenix64]

Regarding "hope" I wonder if they've even taken the time to figure out what is is they're really hoping for. Some final moment in which the dying person is awake and clear and isn't in any pain and they think everything is beautiful and they want to tell you how OK everything is?

[this_caia]

"more time" is what we wanted, for awhile. At the end, I think a lot of people want their loved one to have Beth from Little Women's death: 'she looked around at each of them, and then, on the lap where she drew her first breath, she quietly drew her last.' Or something like that.

Obviously literarily effective, if I remember it decades later. But at the same time, just not what most of us get.

And on some level, I wonder if people are just hoping their loved one doesn't die, and that's what it's really about. But they're not even aware that's what it is, since realistically, they know better.

I think they should have waited to interview the families. In the first weeks, I can easily see people's grief manifesting as second-guessing the final steps to death.

* Oh, and I meant to say,

[this_caia]

Since I was signing in as I made this comment, my icon is completely inappropriate.

[saraht]

I've seen some very good responses to this "hope" canard over on the PC board, which is fairly distinctive in that nearly everyone posting there either is terminally ill or is the caregiver of someone who is terminally ill. (Lest I scare anyone, I hasten to add that I'm in the small minority.) The idea is not that you are giving up hope, but that what you hope for changes over time. When you're diagnosed, you hope for eligibility for the Whipple (the only procedure which offers an actual chance at a cure); after the Whipple/if you can't have it, you hope that you will respond well to chemo and radiation without many side effects, gaining quality time; when metastasis occurs, you hope it will be slow and in the least painful ways; and, finally, you hope for a death with love and dignity and without pain. The point is, acknowledging the limited options you do have and trying your best to make sure that the best one ensues is just as valid a form of hope as continuing to grab for the brass ring. It's not a betrayal of the sick person at all.

I've made it very, very clear in my health care proxy statement that if I do become terminally ill, pain relief is my highest priority. This led to some uncomfortable conversations with my mom (my health care proxy), but now that I really have experienced honest-to-god 9-on-the-scale pain, I know that I value not feeling that in my last moments far more than I value alleged "lucidity" or "hope" at that point.

[thingswithwings]

My sister was on palliative sedation when she died recently, and I can't imagine it any other way. Anyone who thinks that forcing someone to experience pain that they don't have to experience, against their will, is the MORAL option . . . can fuck off and experience a painful waking death themselves if they're so keen on it.