End of life care

[Frelga]

The topic came up in the election thread, and today, by one of those strange coincidences, I saw an article written by the beloved author of Discworld novels, Terry Pratchett.

As many know, Pratchett has been diagnosed with Alzheimer's in 2007, and while the article addresses the political realities of the UK, it does so from the most intimate of experiences, and with an intellectual honesty and courage that I have rarely seen.

A few quotes. The full article: Point me to heaven when the final chapter comes... Terry Pratchett's deeply personal plea

I hate the term 'assisted suicide'. I have witnessed the aftermath of two suicides, and as a journalist I attended far too many coroners' inquests, where I was amazed and appalled at the many ways that desperate people find to end their lives.

Suicide is fear, shame, despair and grief. It is madness.

Those brave souls lately seeking death abroad seem to me, on the other hand, to be gifted with a furious sanity. They have seen their future, and they don't want to be part of it.

...

We would not walk away from a man being attacked by a monster, and if we couldn't get the ravening beast off him we might well conclude that some instant means of less painful death would be preferable before the monster ate him alive.

And certainly we wouldn't tuck it up in bed with him and try to carry on the fight from there, which is a pretty good metaphor for what we do now, particularly with 'old-timers' disease.

...

I know that last September Baroness Warnock was quoted, or possibly misquoted, as saying the very elderly sick had a 'duty to die', and I have seen people profess to fear that the existence of a formalised approach to assisted dying could lead to it somehow becoming part of national health policy.

I very much doubt this could be the case. We are a democracy and no democratic government is going to get anywhere with a policy of compulsory or even recommended euthanasia. If we were ever to end up with such a government, we would be in so much trouble that the problem would become the least of our worries.

But neither do I believe in a duty to suffer the worst ravages of terminal illness.
...

I have met Alzheimer's sufferers who are hoping that another illness takes them away first. Little old ladies confide in me, saying: 'I've been saving up my pills for the end, dear.'

What they are doing, in fact, is buying themselves a feeling of control. I have met retired nurses who have made their own provisions for the future with rather more knowledgeable deliberation.

...

Life is easy and cheap to make. But the things we add to it, such as pride, self-respect and human dignity, are worthy of preservation, too, and these can be lost in a fetish for life at any cost.

[Primula Baggins]

I would invite people with doubts to look at how things have gone in Oregon since we voted in the right to assisted suicide (twice).

There have been no huge controversies, and many of the people who have gotten lethal prescriptions under the law have ended up never using them—they've died naturally, because the feeling of control from having the prescription on hand gave them the courage to face what they had to face.

The feeling of helplessness is absolutely the worst. You control nothing, and you know that you may never control anything about your life again. Federal rules and insurance-company restrictions about pain meds may guarantee that you suffer needlessly.

The restrictions on the law prevent abuse, and the law is helping people. As someone with a somewhat more than zero chance of facing a protracted and painful death (though, looked at honestly, that includes all of us), I am glad to be an Oregonian and hope that similar advantages can be extended to everyone.

[Voronwë the Faithful]

I do want to point out that end of life care and assisted suicide are two separate things. I happen to suppport both, but one can support increased emphasis on helping the elderly and people with terminal illnesses and their families address the issues that arise even if you don't support assisted suicide.

[Primula Baggins]

Of course. If people are confident they're going to get compassionate and effective palliative care at the end of life, they may not feel any need for "a way out" to be available. "Effective palliative care" is something that definitely needs some work in this country, though.

[axordil]

There's also the tangled ethical question (especially with things like Alzheimers) of capacity for decision. I may, given my present state of compos mentis, want to shoot myself rather than end up with severely reduce faculties--but if I had those severely reduced faculties, I might be perfectly happy, having lost the memory of being any other way. Do I have the right to make a determination that my putative later self's life is not worth living, when that self will possibly disagree?

[Primula Baggins]

I'd say no. That kind of decision needs to be made by the patient himself, not by any other person including a past version of the patient. And, on principle, people who are non compos mentis should not be (and in Oregon are not) allowed to choose assisted suicide. The choice can't be put in place in advance like a living will or DNR order; it has to be requested when death is provably inevitable anyway, by a dying patient who is mentally competent. And that's how it should be.

[axordil]

The problem then becomes a pragmatic one: you can't ask for it in advance, since you're not really the person affected yet, but you won't want to ask when the time comes, because you're debilitated to the point where you can't ask.

I'm not sure the law recognizes the rights of a putative future self as being separate, btw.

[Maria]

What does "degradpulsorying" mean?

[axordil]

What does "degradpulsorying" mean?

I have no idea. Where do you see it?

[Voronwë the Faithful]

It apparently is a word that Terry Pratchett used in talking about hoping to have the opportunity to end his life.

He said some ways of looking after those with chronic illnesses, including forcible or 'peg' feeding of Alzheimer's sufferers, were degradpulsorying and painful. 'I am certain no one sets out to be cruel, but our treatment of the elderly ill seems to have no philosophy to it. As a society, we should establish whether we have a policy of life at any cost.'

I'll die before the endgame, says Terry Pratchett in call for law to allow assisted suicides in UK

It appears to be a combination of the words "degrading" and "compulsory".

[Maria]

Being forcefed would be appalling. When my cat was dying of old age last year and refused to eat, I kept offering her food, but eventually stopped when it became clear she would only take a little water. I left the food there for her, of course, but stopped shoving fresh tuna under her nose several times a day. You could see it was time for her to go. I was prepared to put her down if she seemed in pain, but she kept purring each time I petted her up until about half an hour before she died. It took almost a week from the time she stopped eating for her to die. The last couple of days she couldn't get up anymore, so I'd turn her over periodically on the pet heating pad we'd provided her with, and changed the towel under her.

But still she purred. She was the sweetest cat I've ever known- always quick to comfort anyone in the family who was distressed about something. So, she purred for me whenever I'd pet her, right up until the end. There was no way I could take her life when she was still enjoying it, even though she'd decided to end it.

Her's was the most gentle passing I can imagine. It would have been terribly wrong for me to hurry the process and send her on her way before she was ready to go.

That said, I did put two pets down last summer who were suffering a lot. It was a bad year for pets last summer, at our place.

[River]

I think, Maria, you just out-lined the difference between hospice/palliative care and euthanasia.

[Maria]

We can learn a lot from pets.

[axordil]

No longer eating is a more common method of unassisted suicide among humans than some might suspect too.

[Sunsilver]

The last of my aunts in my birth mom's family just turned 93. Several months ago, she was diagnosed with terminal cancer. She still has all her mental faculties, and has opted for MAID (medically assisted dying.)

At the moment, she is in a nursing home, as she can no longer walk, and needs help with toileting, bathing, etc. Monday she is going back home, and will have a doctor end her life.

This is the first time someone close to me has made this choice. Intellectually, it makes perfect sense to me, given her age and diagnosis. But still...I dunno. Imagining having it done to myself, or to a loved one, as I watch...it's hard.

I've had many of my pets euthanized, and that was certainly a hard thing too. But it certainly feels different when you know it's happening to a human being. :'(

I was not close with her, and only met her a handful of times, so the sorrow I'm feeling is not on that personal a level. She and my mom did not get along, to the point where my mom left her name out of her obituary.

Having cared for a lot of patients at the end of their lives, and seen the terrible suffering some of them went through, I was happy when Canada voted to allow MAID for the terminally ill. I wasn't really expecting to feel any...well, hard to describe my feelings...reservations, maybe?...when someone I knew personally made that choice.

One thing I do believe strongly, is that it's a very personal choice, and families need to respect the choice of the dying person, regardless of how they feel about it personally.

[Maria]

... MAID (medically assisted dying.)

For some reason it bothered me a lot, wondering where the "I" in MAID came from so I looked it up: "Medical assistance in dying" is what it's called in Canada.

I'm sorry it bothers you, Sunny. I don't know if it would bother me or not.