4:37am March 11, 2014

➸ the problem with euthanasia

ineedthatseat:

rubyvroom:

the problem with euthanasia is that we end up working so much harder to end the lives of the sick and disabled than we do to prolong them.

society makes it so difficult and expensive to relieve pain and go out in public and do the activities of daily life…

Some excellent points. I would definitely also like to see more discussion and actual action around trying to help people’s lives feel more worth living.

Including access to good hospice services for people who would benefit from that. Though, that was the only way my mother could get anything resembling adequate pain relief, while having poor access to other treatment options as an uninsured person. We need to discuss that type of pattern too. I also really can’t blame people for wanting to go with the least bad option available to them, which sometimes may well be suicide. But we really need to work on getting more actually good options available to everybody, before pushing that as an option.

I also think it’s very very important to keep drawing strong distinctions between euthanasia and very much wanted assisted suicide in cases of terminal illness. Especially with the understandable concerns that people in positions of power just *won’t*, and will take their shitty ableist attitudes and poor grasp of consent out on people in dangerous ways. Those are very different situations, and I think it’s important to keep stressing that they are worlds apart.Yeah – all of that. Unfortunately most of the pro-euthanasia organizations have really creepy-ass agendas. Like, the Hemlock Society (or whatever they’re calling themselves right now) pretends to be all about assisted suicide and choices at the end of your life and stuff, but every time someone like Robert Latimer murders their disabled child, they’re right there supporting the murderer. And they were founded by some really horrible people who deliberately tried to pressure disabled and terminally ill people into suicide by severe emotional and psychological abuse. But change their name to End of Life Choices and everyone thinks that’s what they’re about. Same with Kevorkian, he was a really creepy death-obsessed doctor who wanted to be able to study death, first tried it among death row inmates, encountered opposition, and reinvented himself as a champion of the right to die, so that he could kill people more easily. The way he finally got into deep trouble was when he killed someone who said “No, wait, stop” or something like that just before he died. He was never in it as a human rights issue, he was in it because he was a creepy serial killer wanting easy victims. And a large number of the big names in this movement are people much like himself. Which is one reason the issues keep getting confused about the differences between these things… people like him don't want there to be a difference because what they want is people dying, not any human-rights-oriented approach at all. Another big proportion of the movement is people working in industries such as insurance, where they know it would be cheaper to fund death than to fund long-term care or treatment.

I’d also like to see people stop seeing opposition to euthanasia as a conservative or pro-life agenda. Because some of the best arguments against legalizing euthanasia have come from disability rights advocates. But everyone acts like we’re just too stupid or too gullible to understand the issues there. They act like the pro-lifers are just using us to pit us against liberals, and like nondisabled liberals know what’s best for us. Often euthanasia is the only disability-related “human rights issue” that liberals care about, and they wonder why we don’t trust them.

I’d also like to see a lot more understanding that disability in and of itself is not grounds for suicide. And that many times, the reasons people with terminal illness are killing themselves, is not horrible intractable pain that can’t be treated by meds (a situation most people would understand), but rather a fear of becoming disabled. A fear of needing to be taken care of. A fear of being a burden. A fear of being incontinent – that’s what “dignity” is often a code-word for – incontinence. People are so afraid of needing diapers that they would rather die, and that is not a situation where I think it’s a great idea to just hand them death on a silver platter.

We do a lot of suicide prevention work for nondisabled people. Some of it I don’t agree with, some of it I do. But when a disabled or terminally ill person is suicidal, everyone assumes it’s a rational choice that was made to avoid horrible pain that they assume comes along with the condition. They don’t look into whether that’s actually true or not. They don’t look into the life situation of the person involved, or whether they are severely depressed or traumatized. They don’t look into whether anyone is pressuring the person into it. They just champion our right to die.

And that’s true of some of the most famous euthanasia cases involving disabled people without terminal illnesses. One of the really big ones was a woman with a severe congenital disability, I think it was cerebral palsy. She had lived her life and enjoyed her life for over twenty years. Then she went through a bunch of trauma all at once, including losing her husband. Then she started petitioning the state for the right to go into a hospital and starve herself to death.

And nobody looked at the fact that she was dealing with so many major life stresses that many nondisabled people would be suicidal at that point. Nobody looked at that at all. They just saw a severely physically disabled woman, someone they believed was living a life not worth living, and they believed her that it was her disability that had caused the problem.

Mind you, I do think people should have a right to suicide. That means everyone. That doesn’t mean that I think suicide prevention is bad. But I think suicide in general is a right. What I don’t believe, is that there’s any right for suicide to be made easier just because you’re disabled. We already have a right, for instance, to turn off our ventilators and be sedated until we die, if that’s what we want. We have a right to refuse life-sustaining medical treatment. We don’t need it to be any easier than it already is.

Note I’m talking there about severely depressed disabled people, not people right at the end of their lives who don’t want to die in agony. Severely depressed disabled people make up the bulk of widely publicized ‘right to die’ cases, including a surprisingly large proportion of Kevorkian’s victims. And I don’t believe that severely depressed disabled people have any right, whatsoever, to have suicide made easier for us.

We should be able to get help with our depression or other emotional issues, whatever form that help might take. We should not be able to blame our emotional issues on our disability and have the entire world decide that we must be making a rational decision to end our ~unbearable suffering~, because they assume that in our place they would be in unbearable suffering. Even though the way disabled people describe our lives completely contradicts the idea that disability means unbearable suffering. Even though an increasing among of research into the foundations of happiness supports what disabled people have been saying all along, which is that regardless of severity of disability we are pretty much as happy or unhappy as anyone else, unless our disability inherently has a component of depression to it.

I’m even nervous about this kind of approach to chronic pain. I have trigeminal neuralgia and other severely painful conditions. Before I got treatment, the only thing stopping me from jumping out a fourth-floor window sometimes, was that the pain itself was too incapacitating for me to do it. I have lived with severe physical pain my entire life, probably as a result of an inherited neuropathy, among other things. Neuropathic pain is some of the worst pain out there.

And I’m really bothered by the fact that because of my disability, and because of the fact that I was in severe pain, there were times when I could have made more of a case for assisted suicide than many of the disabled people who have tried to publicly end their lives. And I’m really bothered by the fact that the country would have gobbled it up and gotten right behind me and tried to change law to make it easier and all these other things. When what I really needed was pain treatment carried out by an experienced team of clinicians who understood the type and severity of pain I was dealing with. Which is what I eventually got. Suicide averted.

Because, I wasn’t at the end of my life. I wasn’t faced with a choice “Should I die in agony, or could I die a little more peacefully?” I was in my twenties and dealing with severe pain. And people in their twenties who don’t have terminal diseases and who do have severe pain, should not be the focus of euthanasia efforts. Even if the pain can cause suicidal thoughts. Emotional pain can cause suicidal thoughts too, and you don’t see a whole lot of advocates of assisted suicide for people with psychiatric disabilities. There are some, but it’s not a big thing, because there’s this understanding that suicide at that point is not 'the rational choice’ even if the person is suffering really horribly with no end in sight. But if a physically disabled person has the same psychiatric problems that can drive people with psychiatric but no physical disabilities to suicide, then suddenly our suicidal thoughts must be ~rational~ and ~well thought out~ and ~understandable~. And that’s all kinds of messed up.

I do, actually, believe that there need to be ways to deal with situations where a person is clearly dying, is in horrible pain, and wants to die a little faster so they’re not in horrible agony in their last days, weeks, or months. Including, sometimes, making death available to the person. But even there, there’s often things going wrong far beyond what most people know about.

In particular, there’s a cycle people can get into with opiates. Where they have pain, so they take opiates, and they have more pain, so they take more opiates. Many doctors do not know about this, but there’s a chemical in opiates that, in large enough doses, can cause severe intractable pain. So when they throw these massive doses of opiates at a dying person, they’re often making the person’s pain worse rather than better. I’m certain that dynamic is behind at least some situations where people want to take their own lives. And it’s horrible and tragic that many doctors are unaware of this potential side-effect or how to deal with it. (How you deal with it, among other things, is to back off on the dose, and sometimes combine a bunch of different meds to get the same effect, rather than massive doses of one particular med. It doesn’t always work, but it can work, and it can alleviate situations that are completely horrible and that everyone assumes are coming from the disease rather than the treatments.)

And if more doctors knew about that, the number of people who want to kill themselves at the end of their lives, would be lower. Same with a number of other factors that go into it.

And I think whenever you’re in a situation where someone is wanting to die, you have to look into every possible factor before you tell them “Yes, I’ll help you die.” Because death is permanent, and life isn’t. So it’s better to err on the side of life and work things out before you ever, ever come to the conclusion that death is the way to go. And I don’t think that most assisted suicide laws actually do that. They do require some amount of evaluation to see what’s really happening, but they don’t require enough of that, and there aren’t enough safeguards. A simple physical and psychiatric evaluation is not enough when dealing with a decision of that magnitude.

And that’s what makes me really nervous. All the assumptions that go into backing people when they make decisions like this. Usually, people just have this picture in their head of what it means to be disabled, what it means to be dying, and what it means to be in pain. And if you’re any of these three things, they assume that your choice to die must be a purely rational choice. Because they imagine themselves in your place, and can’t imagine that you’d have any reason to live. They also put undue weight on situations like “being a burden on your family” (which really means “your society has failed to support you adequately”, which should never be considered an adequate or rational reason to die), or “having to live an undignified life” (which really means “you are incontinent”, most of the time, which should also not be considered an adequate reason to die – people’s feelings of shame around that issue are not a problem to be solved with death).

And they don’t evaluate those things. They don’t think “Is this really a good enough reason?” They don’t think “Aren’t there other solutions for these things?” They don’t examine their own prejudices about what life as a disabled or dying person means. And they become incredibly self-righteous against anyone who says “Hey, wait a minute, is this really the direction our society should be going in response to these issues?” Their fear of “having to live like that” becomes so powerful that they become horribly angry at the idea of anyone being “forced to live like that” (i.e. not being offered assistance in dying). I’ve many times had conversations where I didn’t even come out 100% against assisted suicide, I just said “Shouldn’t we be thinking of these other issues involved in this issue?” and gotten my head bit off by people who felt that I was somehow destroying their way to get out of a life they assume would be impossible to handle.

So people become outraged at this idea that someone would “force them to live like that”. I never see those same people becoming outraged at the barriers disabled people face in everyday life. I never see them becoming outraged at the fact that our lives are made unlivable by a society that would rather offer us ways to die than ways to live. I never see them becoming outraged when we are pressured in big and little ways, every day, to disappear or die. I never see them looking at disability issues as human and civil rights issues. They just see disability as a tragedy, they see institutionalization of disabled people as potentially tragic but always inevitable and the only way we can get 'proper care’, and they see the prospect of being shut out of society, living in an institution, and other truly horrible experiences, as identical to the prospect of being disabled. They can’t separate the two in their minds. They can’t see that being shut out and locked up are crimes against humanity, not inevitable outgrowths of having a certain kind of body.

And all these issues and more come into play when people say they support euthanasia or assisted suicide. They see death as an escape from a fate worse than death. And they see too many fixable problems in disabled people’s lives as a fate worse than death. And that becomes their entire rationale for supporting euthanasia or assisted suicide.

And that’s why Robert Latimer can murder a 12-year-old girl with cerebral palsy who never asked to die, and be championed as a euthanasia proponent instead of a murderer. It’s why Kevorkian could kill a long series of people who were many times not terminally ill, and not be considered a creepy serial killer. It’s why people do, constantly, confuse murder, euthanasia, and assisted suicide. Including most of the biggest proponents of these things.

So… I’m not actually 100% against assistance in dying in all cases. But I do think it’s overused and over promoted. I don’t think it's safe to disabled people to make it legal. I don’t even think it’s safe to terminally ill people to make it legal. I don’t think we have the kind of society or the kind of safeguards that would make it possible to do this, at this point in time, without disastrous consequences.

And I hate this – I absolutely hate it – but this is one of those situations where I really have to weigh two things against each other. One is the prospect of disabled and terminally ill people dying, who ought not to die. The other is the prospect of terminally ill people suffering horribly while they die. And the first one is worse. And that’s what my position on legalization comes down to. Not a desire to see people suffer, but a knowledge that needless deaths are worse than needless suffering. I hate to have to weigh two awful things and say “Which one is worse?” But that’s how I come to my conclusions about this. In a better society, things would be different. But we aren’t in a better society.

But unfortunately, the confusion between euthanasia (including “involuntary euthanasia” a.k.a. murder) and assisted suicide, isn’t just something that random people in society have confused, it’s something that proponents of both are deliberately confusing in an effort to make people sympathetic to all of it at once. They put out the image of a terminally ill person suffering horribly as they die, while pushing for parents to be able to murder their disabled children without any legal consequences, or for disabled people to have a right to medical support to die whenever we become suicidal for any reason. And that’s going all the way up to the highest ranks of the prominent right-to-die organizations. So this confusion isn’t just random, it's encouraged by some of the creepiest people I’ve ever had the misfortune to encounter. And somehow our society turns around and calls those people heroes or human rights advocates, when if they were advocating killing anyone else they’d be considered murderers. And a lot of that confusion is not only down to their misdirection, but down to a lot of fears of disability that they’re exploiting to their own ends.

Also a lot of people aren’t aware of the rights they already have. Like disabled people who are on respirators already have the right to have their respirators turned off. I went through the process of setting up my living will, and was surprised at all the treatments I already had the legal right to refuse – feeding tubes, respirators, treatment for infection, resuscitation, etc. There’s a lot of people who’ve been frightened into believing that we already don’t have any of those rights, and that somehow they’ll be forced into accepting treatment for diseases they’d rather die from. For people in that situation, I’d strongly suggest getting a living will drawn up. Because it’s mostly when you don’t have a living will, that you’ll have anything forced on you. But I’d also strongly suggest you do your research before you fill one out. Because if you fill out a living will, and later become legally incompetent, you may not be able to change your mind, even if you later decide you want to live. So if you have a stroke and need a feeding tube and have enough cognitive dysfunction or communication impairment that people aren’t sure what you know and what you don’t know, you could end up starving to death even if you make it very clear you want to eat. That’s the flip side and you need to be prepared for it. Do your research, find out how happy and unhappy people actually are with a variety of medical conditions, talk to people who are on respirators and feeding tubes and all the other treatments you assume you wouldn’t want. And do all that before you make any long-term decisions about whether you’d want to live in a certain situation. Because it’s a very common thing, for disabled people to think they’d draw the “I don’t want to live anymore” line at a certain loss of physical or mental function, only to discover, when they reach that line, that their desire to live is unchanged. But if you’re absolutely certain, then in many countries you already have the right to refuse treatment in advance, you just have to have the right legal paperwork drawn up.

I’ve personally found it much harder to decide to live, than to decide to die, in terms of resistance I’ve gotten from the medical establishment, and I’m not alone among disabled people encountering that resistance. When I needed a feeding tube, a lot of doctors tried their hardest to talk me out of it. Some of them even acknowledged I would die without one, but told me that life with one was so hard that “the alternative” (their euphemism for death by repeated lung infection and possibly starvation as well) was something I should seriously consider. They told me I wouldn’t be able to take care of myself. They knew that they couldn’t legally just refuse to give me one when it was clearly medically necessary, so they pretty much launched into the task of trying to talk me into getting one.

I also have encountered subtle and not-so-subtle resistance to my living will. My living will says that I want everything done for me in the event of a heath crisis, no matter how severely impaired I end up becoming. Doctors and nurses tend to assume, when someone comes to them and says they want “everything done”, that this person is not aware of what “everything” means. They assume that I’m not aware that resuscitation rarely works, that attempts at resuscitation can be horribly painful. They assume I’m not aware of what goes on with the treatment of the most severely impaired ICU patients. They assume that I’m afraid to die, when I’m actually one of the people I know who is the least afraid of death. They basically assume that if I’d seen what they’d seen, and known what they’d known, then I’d do the “rational” thing and decide to die. They assume I’m either ignorant, irrationally terrified of death, or just plain stupid. I see it when they roll their eyes when I tell them what’s in my living will. When they make it plain with every word and gesture, “Alright, but you have no idea what you’re in for if things go bad.”

And I’m far from alone. Lots and lots of disabled people encounter this kind of resistance when we indicate our desire to live. People with ALS get told they’re selfish for wanting to get a trach and go on a respirator. People who need feeding tubes get talked out of them. Many nurses and doctors have admitted to having all kinds of ways that they attempt to persuade and manipulate patients and families to sign DNRs and DNIs and advance directives that would allow them to die in various circumstances. In many ways, it’s much harder to persuade the medical establishment to let you live than to let you die. The point where it becomes hardest to persuade people to let you die, is when you don’t have any advance directives drawn up.

That isn’t to say that there aren’t situations where people are suffering horribly and can’t get the medical establishment to do anything to let them die faster, even with an advance directive. It’s just to say, that the situation isn’t nearly as bad, in countries that already have DNRs and DNIs and other advance directive options, as people imagine. People imagine that doctors are always obligated to do “everything” for you, but in reality that obligation mostly exists when you don’t have any living will drawn up. If you do have a living will drawn up, many medical professionals are all too willing to follow it even if you change your mind. And many will heap scorn and derision on you if your living will says you want to live, even though supposedly the living will is supposed to reflect your choices, not theirs. They assume that anyone knowledgeable about the real statistics, and the real situation for people with the most severe health problems, would choose as they themselves would choose.

And this is one reason that, as things stand right now, I can’t support laws to make assisted suicide or euthanasia (whether the laws confuse the two or not) legal. It’s not that I don’t understand the cost in human suffering to having it illegal. It’s that I know it’s already very hard for disabled, sick, and dying people to get the support we need to live as long as we want to live. And that the medical establishment already does its all to talk many patients and families out of accepting treatment in life-threatening situations. Talk to any parent of a disabled child with severe health issues and you’ll get at least one story of doctors who refused to treat them, assuming that their life is nothing but unmitigated suffering, and the fights that they’ve had to go through to get things as basic as antibiotics for pneumonia. I can’t sign on to any law that makes it harder for people who want to live, to continue living.

And I know, I know well, that people say that there are safeguards, that it’s always the person’s choice, that it’s only for people truly at the end of their lives, and that rigorous screening must be conducted. But right now, there are no safeguards good enough. Right now, few people question the role of financial issues in people’s decisions to end their own lives. Few people question whether a person has been talked into it by family members who have persuaded them that they are a burden. By family members who simply don’t want the trouble of caring for a sick relative, by family members who may even just want an inheritance. There is no safeguard good enough to guard against things like elder abuse. A person may say “I want to end my suffering” when a lot of their suffering is due not as much to the pain of their illness, as to emotional abuse by family members who are sick of having them around. Psychiatrists don’t have magic powers to discern such things, no matter how much counseling a person has. And medical professionals in general have a habit of assuming that such decisions are made for good reasons, no matter what the reasons actually are, because of their own biases about living with disability and disease. For that matter, we aren’t even that good at deciding how long a person really has to live – there are people given years to live who drop dead the next day, and there are people given months to live who live for years.

And I hate having to make this choice. I hate pitting these two situations against each other, because both of them are terrible situations. But when I look at the cost to humanity of people dying who don’t want to die, versus people living who don’t want to live, there’s no question which one is worse. Right now we live in a society that is biased towards death in these instances, and that cannot, no matter how much some people want it to, safeguard against people dying who shouldn’t be dying. And until we have that society, I can’t support these laws.

Which actually makes me angry. Because there are circumstances where I would rather die than live. But I’m not able to make that choice. Because I know that if I had the slightest loophole in my advance directives, anything where I’d say I would rather die than live in any circumstance, that would be warped and used against me. So the society we live in right now prevents me from making such choices as freely as I might want. Because I’ve already faced situations where people were wearing me down and trying to get me to give up fighting for my life. The more legal and possible it is for people to die in these circumstances, the more people will die who didn’t really want to.

Most people have a fairly uncomplicated way of viewing these things. They either see assisted suicide (and often, euthanasia and outright murder) as alleviating suffering, and see anyone who is opposed to it as promoting suffering. Or they have some kind of abstracted moral idea that all killing is wrong and ignore the situations where people are suffering and won’t be harmed by death at that point. It’s this society that sees everything as having two sides and only two sides, pick a team and stick with it, as if these decisions were just a football game or something, that promotes such uncomplicated views of these things.

But there are also a lot of us who, whatever side we ultimately come down on as far as the legal situation goes, acknowledge that there’s a lot of complexity about these situations. That it’s not as simple as people who “want people dead” or people who “want people to suffer needlessly for an abstract principle” (although there’s plenty of both of those going around). And our views tend to never be acknowledged or discussed. And also, the points of view of disability rights activists who oppose euthanasia and assisted suicide are pretty much unheard anywhere in these debates. Even though our viewpoints are some of the most compelling I’ve heard in terms of real-world understanding of the dangers and pitfalls of such laws. Most people assume that we have religious motivation, and some of us do, but for most of us that isn’t the deciding factor. Disabled people who oppose making these things legal are pretty diverse in our reasons why, but I’ve rarely heard one of us whose opinions aren’t worth seriously taking on board whether you agree with us in the end or not.

Because, basically… even if you want assisted suicide or euthanasia to be legal. If you care about disabled people at all, you have to find answers to our concerns. And those answers cannot be as simple as a doctor or psychiatrist (who have their own biases), signing off that someone is making a rational choice, or restricting assisted suicide to people with a certain amount of time given to their lives by doctors. Those things may sometimes do some good, but they don’t do enough good. Many disabled people suspect that no safeguard will ever be good enough. But if you do seriously want to create safeguards, then you have to take on board every single concern that disabled people bring up and find multiple levels of answers to each concern to make things safer for us. And I don’t mean “answers” that are only answers in the same way that “security theater” is an answer to the threat of terrorism. I mean real, concrete answers that make a change in the world. And people have to stop dismissing our concerns as 'paranoia’, because all of our concerns are based on real things that have happened to us or our loved ones. Very few of them are based on abstract possibilities that have never actually happened. And many of us have a better grasp of some of the pitfalls of the right-to-die movement, than do people who go into that movement idealistically assuming that everyone is there to prevent suffering, that there are no would-be murderers and serial killers lurking in the ranks, even in very high positions in the movement.