The extra morphine thing… that’s actually more complicated than it sounds. In practice, “keeping someone comfortable” typically lasts hours, not days or months or weeks. So people who include it in the euthanasia discussion aren’t as off-the-wall as they seem at first.

My grandmother was quaker, by the way; I went to a quaker school for a year and attended meeting for a few years in my twenties.

Thank thee!

I got mine here:

http://www.internationaltaskforce.org/pmdd.htm

And I have two people on it, one of whom worked for Not Dead Yet, so I think I’m pretty safe there presuming that the hospital or hospice doesn’t try to override our wishes (and they might, it happens all the time). I’m also planning to order the Not Dead Yet dog tags that have just gone back on sale.

I’m not a Catholic, I am a Quaker, and Quakerism has no standardized answer to the issue, although many Quakers (at least of the branch I’m from) lean towards anything that sounds vaguely left-of-center without necessarily thinking about it, so many are pro-euthanasia without examining the ableism behind the majority of that stuff.

I’ve wished for a long time to write about my views on abortion, because they are neither the simplistic pro-choice stance nor the simplistic pro-life stance, and I get really tired of hearing the disability rights critiques of abortion get ignored by both, as well as the feminist critiques of total anti-abortion stances getting ignored by those who are pro-life. Not to mention the idea that a fetus is a non-person would be problematic to me even if I totally accepted all abortion for all reasons unquestioningly. But it’s very hard to get it all together in words.

To me there’s a clear difference between taking extra morphine for pain that might hasten death as a side-effect of taking it, and euthanasia. I’ve never actually understood why people confuse the two. Drinking lots of alcohol can potentially shorten the lifespan too, as can many kinds of necessary medical treatment. Denying pain meds to someone who wants them seems barbaric to me.

But a lot of people seem to insert the “denying pain meds” line into a discussion of a very different issue, which is who decides who lives and dies at any given time. My personal stance is that if a person wants to commit suicide, or refuse treatment, that’s already a feasible and legal thing to do, even if I disagree with it.

But at the same time, there have been people who have changed their minds after writing such documents, or who never realized what the documents were going to be used like. Like a woman who actually was restrained to prevent her from getting out of bed to eat or drink, because those were considered “medical treatment”, and she’d had a stroke, couldn’t speak, and was considered incompetent to decide whether she lived or died. Others could speak but were still not considered competent. A lot of people when they think of medical treatment think of very specific things, and then when they eventually need something like assistance eating, they don’t realize that might be withheld as “medical treatment”. A lot also don’t realize that by the time they reach that point, they might not mind it so much as they thought they would, and again, changing the mind is not allowed.

Which is why I err on the side of that I might suffer a lot towards the end, because I don’t want to be cut short way before the end. (And doctors really can’t predict how long a person will live anywhere as well as they say they do.) And I also in general err on the side, legally, that people should not be in a position where the “choices” of a few people make way for the murders of many, but it’s all done under “choice” (which is, usually, how it actually works). When I think about it, it’s better some people die a little after what they consider their time, than lots of people die before their time. And I’ve seen enough of the latter to know it’s a real threat even without laws to make it easier.

And yes, we have each made known our preference for the expeditious end. However, I have made it clear to my beloved that I am unlikely to be able to make anyone’s end of life tidy. End of life is likely to be distressing and fraught with ambiguity. If called on, I will make the best decisions I know how, taking into account a depressive temperament which makes attachment to life ambivalent and often sullen.

Catholics have a beautiful and well-thought out approach to respect for all human life that is welcome in a world fearful of mess and disorder, but it comes with its own baggage. I’m firmly convinced that nobody who feels unable to raise a disabled child has any business having children at all, and the whole business of prenatal screening sets up disabled children to be medical errors rather than part of the human expression. Catholic philosophy welcomes all life, which is great. But all women need access to free and safe abortion. The Catholic welcome of all life doesn’t allow for that.

The Catholic answer to suffering is compassion and companionship. These are essential to life and death with dignity, yes. They complicate the impulse to turn to euthanasia to relieve distress (whether of the subject or the people responsible for her care), yes and thank goodness. But if morphine will ease the pain of terminal cancer it’s cruel to withhold it from someone who is both suffering and has let go of their attachments to life. The Catholic philosophy doesn’t allow for any intervention – like high doses of morphine – that might hasten death. Even the death of someone who is ready to go.

So while I welcome the Catholic analysis of these issues, I find it simplistic. Just as I find the desire for order and tidiness simplistic.

I have gone through my own phases of having to distinguish fear of a certain medical condition itself from fear of how people with that medical condition are treated, both in society as a whole and by the medical industry itself. I can say with earnestness that I am not afraid of experiencing anything psychologically that is labeled a mental illness and pathologized by society. I’m much worse at handling actual physical illnesses, however– not hospitals or how you’re treated by others but the physical feelings themselves. I don’t handle them very well, and I’m not sure what I would do if placed into one chronically, and I worry about whatever I might do and say in that state being taken as a global proclamation of how all people with the same condition feel or want.

There are people who are able to function with medical problems I can’t function with– I’ve seen it in my family, the difference between myself and some others in that regard, seen others keep working with conditions that cause me to lose all willpower to get out of bed. The only life I would ever consider myself to have the authority to pronounce unlivable is my own, in the sense that I find it unlivable by me. And this disturbs me, somewhat, because it has occurred to me that I may, at some point, in my own life, for whatever reason, come to feel that my own life is unlivable for me, when another person put in the same situation might not be deterred, and be able to keep going under something that I wasn’t strong enough to endure. I’m not sure if this is something I should seek to rectify, and I’m not sure how I could– which is not to say I don’t think I could ever change my beliefs on this; I just honestly have no idea how.

I don’t think there’s actually anything to fear from death. However, I also don’t think there’s anything to fear from living in a body that isn’t totally perfect (by someone’s standards) and comfortable. That’s not an experience I want to cut out from my life, if it’s supposed to be part of my experience.

But further than that, I’ve had more than one person I know get easily treatable infections and have doctors refuse to treat them because “a life like that isn’t worth living”. I’ve experienced attempted murder at the hands of medical professionals. And I frankly don’t want to give them one more reason to declare my life or anyone else’s not worth living.

On a purely pragmatic level, even if I accepted that there was a point past which I wouldn’t really want to be alive, I would far rather live out whatever suffering is necessary at that time far in the future, than give people ammunition that would allow them to kill me right now and deny me any future. Because that’s what I’ve seen happen over and over again. I don’t want to make the jobs of killers any easier by telling them there’s a line I draw somewhere (that they can then easily concoct reasons to say I have passed).

But also, there’s a woman who wrote a book I really need to get my own copy of one of these days. She expressed my sentiments on this whole thing perfectly as well. She grew up in an institution, she could only move her eyes up and down to communicate, and the doctors at her admission had declared her “profoundly mentally retarded” and not passed on the information about the eye movements. She grew up basically in a “mat ward” (a ward full of people on beds or mats). The only person she could communicate with at all was someone who was positioned in a bed next to hers some of the time, who shared the same communication system.

At any rate, she said that there was a kid there who died of unshunted hydrocephalus. She said something like, “Some people would say that a life like hers wasn’t worth living anyway, and that she’s better off dead. But so many people have said that about my life, that I will never pronounce anyone’s life not worth living.”

That’s how I see it. I don’t think that it’s possible to take an entire kind of life and declare it unlivable, and I don’t think it’s possible to know beforehand that you’d find a certain kind of life unlivable.

So, I’d far rather have a society that didn’t focus on sitting there drawing imaginary lines in the sand about livable lives (and putting up impossible-to-enforce ‘safeguards’ about those lines), and instead focused on actually assisting people to live however they are going to live.

This beautifully expressed idea has touched me deeply and enabled me to reconsider the complexities and mess around end of life – because we will ultimately all die – with more openness. I would prefer death to be neat and tidy and expeditious, especially my own; I wish to go gently into that good night; I want to believe that the struggle to stay alive is merely an irrational fear of death that can be overcome by right thinking. (And I say all these things having struggled for years to stay alive when depression and the attendant urge to suicide were ever-present. Struggled with gritty determination and – fascinatingly – no sense of irony.) My friend’s observation has allowed me to contemplate my future clinging to my last scrap of self without pity or fear, and to be more accepting of others doing the same.

I’ve seen what happens to people with various forms of what’s called “dementia”, and I don’t mean the way their minds change. I mean the way people around them start making decisions for them well before they have to, treating them like because their minds are working differently that they have no minds, treating them as totally incompetent, etc. Even one woman I met had a guy trying to be seen as “her best caregiver,” apparently because she was rich and he wanted to inherit her money, meanwhile he treated her and anyone who stuck up for her like utter crap.

She had many more faculties than anyone was willing to look at, and in particular nobody ever let her communicate. You could see her forming words, and people would not wait, they would step in and say something for her, or even contradict her and tell her she was misremembering, and then other people would confirm that she was remembering something perfectly.

But in another setting I remember reading a “disability advocate” bragging about how he’d signed his wife’s decision-making power over to him (by tricking both her and the notary) when he learned she had some kind of “dementia”, and then starved/dehydrated her to death when she stopped being able to talk. So there’s definitely worse than even the above.

All of those sorts of things are what need to change. People will always be disabled, it’s a matter of disabled people, somehow, having enough power and respect that these things happen to us less often.

(And “dementia” is something I’m at higher “risk” for later in life because of the amount of head-banging and other blows to the head I’ve had, so that prospect is something I’ve thought a lot about, as well as trying to figure out how to make the world a place where I’ll be able to get assistance at home and not in a nursing home should that become the case.)

The money is in fields that people who value wealth and power want to be a part of–in playing doctor, in pretending to do science. Not in facilitating access or in being a paid assistant.