The right to die
March 3, 2016 9:06 AM   Subscribe

On the evening of April 20, 2000, Al Purdy drank a glass of Chilean wine laced with Rohypnol. Murphy’s Law offered one last demonstration of its quirky power: the wine was corked. He sipped it anyway, in the company of his love of almost 60 years. There was no rush, no timetable. The last piece of music he heard was Paul Robeson’s best rendition of “Ol’ Man River”—his favourite singer performing one his favourite songs.

In February 2015, the Supreme Court of Canada ruled unanimously that a general prohibition of physician-assisted suicide was unconstitutional. It violated the rights of “competent adults who are suffering intolerably as a result of a grievous and irremediable medical condition.” Within a few months, there will be systems in place to help people achieve a good death in Canada.
posted by sevenyearlurk (106 comments total) 44 users marked this as a favorite
 
The last line of this beautiful piece of writing is about as untrue as it gets. John Hofsess was a remarkable person who took remarkably brave and loving action at great personal risk. That he couldn't be celebrated and thanked for this in life is deeply unfair.

.
posted by sallybrown at 9:19 AM on March 3, 2016 [7 favorites]


Thank you. Even if it was a difficult way to start my day, it was a very powerful read. I doubt I'll get the same luxury in my death, no mattter how many years in the future it will be.
posted by monopas at 9:21 AM on March 3, 2016


Never mind the right to die, what about the right to have uncorked wine for your last drink? It's barbarous, I tell you.
posted by octobersurprise at 9:27 AM on March 3, 2016 [7 favorites]


Said it before, saying it again: the SCC nailed it with this verdict, even if it was 2+ decades too late.
posted by feckless fecal fear mongering at 9:27 AM on March 3, 2016 [1 favorite]


Final Exit Network is one of my charities. If end of life issues are important to you they are great.
posted by cjorgensen at 9:33 AM on March 3, 2016 [4 favorites]


Ol Man River
posted by philip-random at 9:36 AM on March 3, 2016 [5 favorites]


I would be so annoyed the wine was corked! always try before adding your poison, folks.
posted by supermedusa at 9:44 AM on March 3, 2016 [3 favorites]


.

In another hundred years or so people will look back and wonder how we could show such humane compassion to our pets at the end of their lives while we condemned our actual fellow humans to horrible lingering half-lives under penalty of law.
posted by Two unicycles and some duct tape at 9:46 AM on March 3, 2016 [42 favorites]


I'm actually on my way out the door to do an interview on the Disability Community's opposition to assisted suicide, so I don't have the time it might take to respond to this article, but here is some perspective that I think people should consider, and that often gets left out of this discussion.

Council of Canadians with Disabilities: "SCC Decision Disappoints"

Not Dead Yet: "Why Do Disability Rights Organizations Oppose Assisted Suicide Laws?"

Disability Activist Stephanie Woodward: "Why disabled people like me fear medically assisted suicide"

Disability Rights Education and Defense Fund: "Why Assisted Suicide Must Not Be Legalized"
posted by gauche at 9:47 AM on March 3, 2016 [22 favorites]


The author Margaret Laurence was an epistolary friend of his and died the same way.
posted by brujita at 10:06 AM on March 3, 2016


I'm actually on my way out the door to do an interview on the Disability Community's opposition to assisted suicide, so I don't have the time it might take to respond to this article, but here is some perspective that I think people should consider, and that often gets left out of this discussion.

Thanks for this. While I'm generally in favour of the principle that people should be able to seek assistance in ending their lives to alleviate their suffering, there's a whole toxic discourse based around the notion "Well, if I ever became [insert disability here], I'd kill myself."

So it's a problematic issue, and not cut and dried as the libertarian arguments about it would have you believe.

Another good example: Liz Carr addressing UK parliament.
posted by mandolin conspiracy at 10:11 AM on March 3, 2016 [6 favorites]


I don't know how to reconcile the perceived devaluation of disabled persons with my firm belief that each individual should be allowed to decide what quality of life means to them and whether their quality of life merits continued living.

Someone (here, I think) wrote that when a physically disabled person talks about suicide they are met with sympathy, but when depressed people talk about suicide it's an emergency. That was the first time I ever really thought about the issue as it relates to the population of disabled people, and I haven't yet even come close to an understanding that leaves me satisfied.
posted by Sternmeyer at 10:19 AM on March 3, 2016 [14 favorites]


As good as this decision is, I wonder whether it's because we're in an historical era of surplus labor that it passed.
posted by subdee at 10:24 AM on March 3, 2016 [2 favorites]


For the unsophisticated who, like me, thought corked wine was in contrast to boxed wine or wine with a screw cap:

How To Tell If A Wine Is Corked

"...a smell that is similar to a dank moldy basement, a wet newspaper or a wet dog."
posted by BurntHombre at 10:38 AM on March 3, 2016 [5 favorites]


Rohypnol? Wow. Who knew.
posted by GallonOfAlan at 10:43 AM on March 3, 2016


I think it's easy to reconcile. Every person gets to decide what do with their body. For an organization devoted to disabled people to say, "No, trust us, you need to keep living in misery because we are keeping the alternative illegal" strikes me as a terrible betrayal. Toxic as it may be, there are disabilities where a peaceful death is the best option. If this opens the door to other disabilities you think are worth living with, guess what? You're not the one that gets to make that decision.
posted by Mr.Encyclopedia at 10:46 AM on March 3, 2016 [26 favorites]


For an organization devoted to disabled people to say, "No, trust us, you need to keep living in misery because we are keeping the alternative illegal" strikes me as a terrible betrayal.

Actually, it's people with disabilities themselves raising these concerns.

Toxic as it may be, there are disabilities where a peaceful death is the best option.

That's called eugenics.
posted by mandolin conspiracy at 10:55 AM on March 3, 2016 [6 favorites]


It's really... not.
posted by Mr.Encyclopedia at 11:00 AM on March 3, 2016 [42 favorites]


The slippery slope is already there. Sadly, I've been through a lot of deaths the last decade, including two where the patient had claimed before-hand that they wanted assisted suicide. They didn't when it became relevant. They wanted every last minute of life.
I've also known someone who didn't want to live for several good and bad reasons. He figured out how to end his life without involving medicine or other people.

If you really want to end your life, you can, and no one will stop you.

The legislation about end of life is a whole other thing, and in my opinion, it can only go wrong. First of all, in countries where economy is an issue, killing off the old and the disabled will be much too profitable.
Second, even in countries where economy is not an issue, the emotional strain of dealing with a very ill family member will be challenging, as is already now seen in Belgium. It will be much easier to kill people than to deal with the task of providing for a respectable life for them.

Excuse me for bad English. It is always difficult for me to write when I am angry
posted by mumimor at 11:14 AM on March 3, 2016 [11 favorites]


Toxic as it may be, there are disabilities where a peaceful death is the best option. If this opens the door to other disabilities you think are worth living with, guess what? You're not the one that gets to make that decision.

I've been told by hearing people basically every week of my life that if they were deaf, they'd just kill themselves. Like, ever since I could remember, starting in kindergarten. By the time I was in grade 6, I was already actively suicidal and talking to a therapist on a weekly basis about my constant intrusive suicidal fantasies.

Sure, it would have been "my decision" to have offed myself at 11 years old. I mean, if you discount the fact that a ton of adults, peers, role models and all of society was socially coercing me into doing so at every moment of my existence. It would be convenient for our ableist mainstream society to scream "KILL YOURSELVES" over and over again at disabled people, and when they do so, turn around and go "well, it was their own choice", wouldn't it?
posted by Conspire at 11:20 AM on March 3, 2016 [40 favorites]


I forgot: during this terrible decade of losing loved ones, there have been two attempts of speeding up the process, against the dying person's wish. One of those attempts was investigated by the police.
posted by mumimor at 11:24 AM on March 3, 2016 [1 favorite]


If you really want to end your life, you can, and no one will stop you.

With respect for the losses you've endured, this is not true. People with Alzheimer's, people who are physically impaired, people in hospitals, people who are too sick to care for themselves -- most of these people don't have the option to end their lives on their own terms. This is about giving them that right.
posted by crookedneighbor at 11:31 AM on March 3, 2016 [39 favorites]


For an organization devoted to disabled people to say, "No, trust us, you need to keep living in misery because we are keeping the alternative illegal" strikes me as a terrible betrayal.

As I always do in these discussions: Robert Latimer. Canadian farmer who euthanized his daughter with Cerebral Palsy because he decided, as her caregiver, that her life was intolerable. She was unable to walk or talk; he was intimately familiar with her care and quality of life, as much as is possible for a caregiver.
posted by fatbird at 11:35 AM on March 3, 2016 [3 favorites]


The full Joint Committee report and recommendations.

I work for the local Alzheimer Society, so we've been paying a lot of attention to this as it has been taking shape; it has become a question we get as we discuss issues around advance care planning. Until there is actual legislation and a process, we have no answers to give, but it has been interesting to hear the conversations.

My Dad is very much opposed to the idea of physician assisted dying; I am more open to it. In talking with him about it after the ruling last year, I said that the two major things (from my view) that need to be addressed is around consent, particularly for conditions where capacity is a concern, and also around ensuring whatever decision is made, a person has access to appropriate care for their needs; that is, this can't be a reason to cut back on the ongoing care any condition needs because it will still be needed - and I worry about the system/economic pressures that may work to encourage cutbacks on services because PAD is an option, which mumimor notes above.

On the issue of consent, I am concerned how that will be handled; given the nature of the conditions our clients have, I understand the wish for "advance consent" in the face of declining capacity, but on a personal and professional level I also believe that people have to be able to withdraw consent to whatever course of treatment/service they are receiving. The idea of "advance consent" that is being recommended here leaves me a little uneasy, not just because the person may no longer have the ability to withdraw that consent, but because I can also anticipate the absolutely horrible situations family caregivers who hold the authority of managing the personal directives for that person's care will be placed in. Beyond the specific conditions I encounter, though, the issue of capacity is a challenging one and those of us working with people who might be considering this are going to need to do some very rigorous work in terms of having the tools and knowledge to help in that assessment.

Frankly, I'm surprised at how far the recommendations of the panel go on a lot of fronts (advance requests/age/mental health in particular), and it will be interesting to see what the actual legislation looks like, along with the actual process that gets put in place. For me personally, I know my wishes and feelings around this for myself, but we also need to make sure the system has the safeguards and resources needed to ensure people truly have choices about how they are going to approach their care.

Whatever your feelings, let me just use this as a moment to encourage everyone to do what we encourage the families we work with to do: your advance planning, even if you are healthy. Do your personal directives (in Canada, these reflect your wishes around health care and who might make those decisions), and usually forms for that should be available from your provincial health body and you can do them yourself; do your enduring power of attorney (which gives someone authority over your financial affairs; I would suggest to make it "springing" so that it takes effect if and when you lack capacity) and a will. Use a lawyer for the latter two. And talk to the people you are thinking of making responsible under those documents; make sure they understand what you want beyond just what is on the paper.
posted by nubs at 11:36 AM on March 3, 2016 [11 favorites]


In another hundred years or so people will look back and wonder how we could show such humane compassion to our pets at the end of their lives while we condemned our actual fellow humans to horrible lingering half-lives under penalty of law.

I think it's pretty clear that we rightly trust ourselves more with the lives of our pets than with the lives of people -- our relationships with animals are usually much simpler and more charitable than our relationships with people for a variety of reasons.

And we are not very good at inherently valuing human life. There are any number of forces at work that actively work to devalue people except in terms of some kind of utility, that view accidents and deaths on individual scale as collateral damage or the cost of doing business or keeping our freedoms. If you're a progressive, you see this *everywhere* and you're probably desperately trying to fight against it in one way or another.

I'm enough of an optimist that I still think it's possible to carefully build walls around end-of-life care and right-to-die so that they don't get pressed into the service of forces in human nature itself that care little for human life. I'm enough of a pessimist that I don't think people who are concerned about how this could go badly wrong are incorrect.
posted by wildblueyonder at 11:48 AM on March 3, 2016 [7 favorites]


As I always do in these discussions: Robert Latimer. Canadian farmer who euthanized his daughter with Cerebral Palsy because he decided, as her caregiver, that her life was intolerable. She was unable to walk or talk; he was intimately familiar with her care and quality of life, as much as is possible for a caregiver.

Latimer at best was misguided, although I think what he did was criminal. I can understand the wish for legalizing euthanasia, but I cannot understand how any doctor could ever ethically help assist the procedure.

If we in Canada are going to legalize "assisted dying", there *must* be more resources put into curing chronic diseases and conditions that lead people to take their own lives, such as Parkinson's, ALS and so on.

There also *must* be more funding put into hospice and at-home care, so that the final months and days of someone's life are not filled with pain.

This may have persuaded Latimer to make a different choice than to murder his own child.

At the moment we as a society are saying, "well, it's too expensive to find a cure or therapy for your condition, but it is pretty cheap to help you die."

It is unconscionable.
posted by My Dad at 11:51 AM on March 3, 2016 [3 favorites]


As much as I believe in the right to die, the opportunities for exploitation are so tremendous that in order for it to have a chance of being fairly applied across the board, we would need to first have every possible form of care/treatment/support available to every person unconditionally, so that the choice is never "I don't have access to any relief but this" but "I have every available option but this is the one I am specifically choosing, competently and in no one else's interest but my own."

And I don't think there is any society on the planet that truly offers those conditions at this time. Even the best ones still leave enough of the burden of care on family that you can't remove it from the equation.
posted by Lyn Never at 11:53 AM on March 3, 2016 [10 favorites]


killing off the old and the disabled will be much too profitable.

There's that phrase again: will be. It is, of course, categorically different from is or has been because it's evidence-free and rooted in fear or ideology. Kinda like when libertarians say, "when there's no government, everyone will be free." Like, yeah, show me.
posted by klanawa at 12:08 PM on March 3, 2016 [14 favorites]


Even the best ones still leave enough of the burden of care on family

I probably said this the last time the subject came up but - "the burden on my family" doesn't in itself seem like an bad reason to choose to die at all. Where it gets messy is where you have family members trying to intervene to tip the scale since the sacrosanct principle is that you are supposed to have final say.
posted by atoxyl at 12:15 PM on March 3, 2016 [6 favorites]


People with Alzheimer's, people who are physically impaired, people in hospitals, people who are too sick to care for themselves -- most of these people don't have the option to end their lives on their own terms. This is about giving them that right.

Respectfully, I believe you have no idea. And I'll repeat that this has far too much to do with economy, and far to little to do with personal agency and dignity. While I am not a healthcare professional, my experience extends far beyond my own family.

I strongly believe we can improve end-of-life care in many ways, one of them being informed conversations with patients. A "right to die"-policy works directly against those conversations. Any person with late-stage cancer or a chronic illness is going to feel like "the right to die" is more like the "pressure to die".

A policy which actively prevents the best outcome of a healthcare strategy is just bad.

During the last decade, I've been working with healthcare in many different ways. It also runs in my veins - I grew up in a family where everyone worked with health.
One of the things I've reflected upon is that the politicians planning for healthcare are very often middle-aged men who don't imagine they will ever need the services they are planning for. They "imagine" people with Alzheimer's, people who are physically impaired, people in hospitals, people who are too sick to care for themselves. But they have no personal experience with these citizens.
And in many ways, their imaginations influence the design of the entire system in ways that are really not practical.
I remember a patient who was a transsexual, but also mentally ill, homeless and in desperate need of help. She was doing everything she could to avoid the system, because it defines her transsexuality as a mental illness. This is not a medical but a political issue, and the politicians hesitate when it comes to trans-people. She did want help, but couldn't get it.
Middle-aged men often imagine that they would rather die than "whatever". I honestly don't know why they dig this philosophy. People who are physically impaired do not in my experience want to die prematurely, they want to live, work, and prosper. People in hospitals want to get out of hospitals. People who need care want care.
posted by mumimor at 12:24 PM on March 3, 2016 [9 favorites]


At the moment we as a society are saying, "well, it's too expensive to find a cure or therapy for your condition, but it is pretty cheap to help you die."

(I'm not a Canadian, but I am in favor of similar laws in the US). I think we're saying "we have found neither a cure nor an effective therapy for your condition, we may not find one before you die, and indeed we may never find one. We can, however, present you with an option, albeit a terrible, irreversible one, but one that nonetheless may be preferable to you, an informed, competent, consenting adult."

There can be layers of oversight and layers of regulation. For example, in the few states in which it's legal in the US, it's limited to terminally-ill patients with less than six months to live and requires multiple requests by the patient and the involvement of multiple doctors and multiple witnesses (who can't be doctors and can't be related to the patient). In some states the life-ending medication must be self-administered.

I'm sure these systems are not perfect (and I'm open to the possibility that they're horribly flawed as-administered), but they are designed to counter-balance many of the objections raised here. We don't know what the Canadian implementing laws will look like yet. Hopefully they will address all of these objections and more.
posted by jedicus at 12:33 PM on March 3, 2016 [1 favorite]


Thanks for your thought-provoking response.

>we may not find one before you die, and indeed we may never find one.

I would say the problem is that there will never be a cure or therapy for certain "underserved" diseases or conditions because not enough resources are being put into it. Which I suppose is a judgement call that some people want to make.

On the other hand, as mentioned there are just not enough resources aimed at improving end-of-life care. It's patchwork at best.

An oncoming surge in people living with Alzheimer's and dementia (in countries such as Canada that are ageing rapidly), often for a decade or more at the end of life, is also going to increasingly pressure society to choose "the suicide option."

It's just not an ethical choice.
posted by My Dad at 12:38 PM on March 3, 2016


I tried searching but was unsuccessful. Are there statistics that could shed light on whether the assisted suicide in the states where it is legal is being abused?
posted by eggkeeper at 12:52 PM on March 3, 2016 [1 favorite]


I would say the problem is that there will never be a cure or therapy for certain "underserved" diseases or conditions because not enough resources are being put into it.

That is no doubt true for some diseases or conditions. But some diseases or conditions may not be curable or treatable no matter how many resources are directed toward them (which is not at all to say that we should not try). Or at least not curable or treatable within the lifetime of a particular person with that disease or condition. Since we can't know if a cure or treatment is "right around the corner", I think we must deal with the options we have at any given time. While, of course, continuing to research, develop, and make available cures and treatments for all manner of diseases and conditions.

An oncoming surge in people living with Alzheimer's and dementia (in countries such as Canada that are ageing rapidly), often for a decade or more at the end of life, is also going to increasingly pressure society to choose "the suicide option."

In the US at least (and we don't know what Canada's legal framework will ultimately look like), someone with Alzheimer's or other severe dementia typically wouldn't be eligible for assisted suicide. If they were within 6 months of the end of their life, then the dementia would almost certainly be too severe for them to consent. If they were capable of consent, then they would almost certainly have more than 6 months to live. That may be a Catch-22 for some people, but the laws have erred on the side of caution, for better or worse.

On the other hand, as mentioned there are just not enough resources aimed at improving end-of-life care. It's patchwork at best.

I agree with that fully. Ideally regular end-of-life care would be sufficiently good and universally accessible that assisted suicide would be rare.
posted by jedicus at 12:57 PM on March 3, 2016


I tried searching but was unsuccessful. Are there statistics that could shed light on whether the assisted suicide in the states where it is legal is being abused?

Belgium is the test case, not the US.
posted by My Dad at 12:59 PM on March 3, 2016


If you really want to end your life, you can, and no one will stop you.

If you're not stuck in a hospital bed, maybe.

We're trying to move to a setting where your spouse doesn't have to mop your brains off the ceiling, cabinets, and fridge. It's a bit more compassionate than where we are now.
posted by sebastienbailard at 1:13 PM on March 3, 2016 [17 favorites]


Actually, it seems like a cure for Alzheimer is almost there.
posted by mumimor at 1:14 PM on March 3, 2016


Reading the Toronto Lite piece above, it's pretty weird how Victoria seems to be a center of "right to die" culture — besides Purdy, PK Page seems to have embraced it, and I know prominent (retired) politicians here in Victoria that post about it on Facebook.

Seems to be connected to other flakey movements popular here like the Green Party.

Purdy was a lifelong smoker, so perhaps by consuming coffin nails he was trying to commit slow-motion suicide anyway.

I did like his poetry when I was younger.
posted by My Dad at 1:15 PM on March 3, 2016


If you're not stuck in a hospital bed, maybe.

The family member I knew who wanted to die, did so in a bed in a hospice. I can assure you that if you want to die and you are in an environment that will not call in all the most expensive procedures available, you can die. Even if your family and the health-care providers disagree.

But as you can see from this nuanced and complicated answer, getting there is not easy in a monetized healthcare-system.
posted by mumimor at 1:20 PM on March 3, 2016 [1 favorite]


It would be convenient for our ableist mainstream society to scream "KILL YOURSELVES" over and over again at disabled people, and when they do so, turn around and go "well, it was their own choice", wouldn't it?

A key point being ignored in this discussion is that "free choice" is not made in isolation. We make our decisions in large part based on public norms and community support. Changing laws to allow assisted suicide changes public norms and can pull support of a person's family and community out from under them when they become ill or disabled.

Suddenly you go from assisted suicide being for a few people in what may be an impossible situation to a public norm that is expected of you. And are you really making a "free choice" then in the same way that these other people are?
posted by deanc at 1:26 PM on March 3, 2016 [7 favorites]


They "imagine" people with Alzheimer's

Don't have to, seen it, thanks.

Actually, it seems like a cure for Alzheimer is almost there.

As has been said for years.

(I actually think this is a very complex issue to sort out the implications of in practice. But I don't think you are being very fair to the people on the other side of it.)
posted by atoxyl at 1:29 PM on March 3, 2016 [6 favorites]


Victoria seems to be a center of "right to die" culture

I figure it's because Victoria is basically the retirement capital of Canada.
posted by bonobothegreat at 1:31 PM on March 3, 2016 [3 favorites]


If you really want to end your life, you can, and no one will stop you.

They'll stop you from ending it humanely.
posted by maryr at 1:35 PM on March 3, 2016 [20 favorites]


(I actually think this is a very complex issue to sort out the implications of in practice. But I don't think you are being very fair to the people on the other side of it.)
Well, this is one of the processes I've been through and another one I'm a close relative to right now and I know it is terrible. Terrible. But it doesn't change my mind on assisted suicide. Because I still think we have to address the real issue - which how to deal with demented old people. And that assisted suicide carries a whole lot of terrible problems we cannot handle as humanity
posted by mumimor at 1:40 PM on March 3, 2016 [1 favorite]


The family member I knew who wanted to die, did so in a bed in a hospice. I can assure you that if you want to die and you are in an environment that will not call in all the most expensive procedures available, you can die. Even if your family and the health-care providers disagree.

We had a very elderly family friend - my great-grandmother's neighbor - who grew up caring for her mother so she never married, never had children, etc. Our family was her defacto family, but we lived several hours away. She lived well into her 90s, the last one of her friends still alive, with increasingly poor hearing and vision, but still all mentally there and no major health issues. For several years at the end she couldn't do much more than move from the bed to the easy chair in the morning, then back in the evening, watching crappy TV. Once when my mother was visiting her at her nursing home, she was talking about aging and getting to this point and the feeling of just waiting and waiting for her body to age out, then she carefully looked up at my mother, and said, "If only... someone... could do something."

You tell me what this woman should have done. It's not all about terminal illnesses.
posted by olinerd at 2:06 PM on March 3, 2016 [9 favorites]


And sometimes one person's "intolerable" is another person's normal, but that shouldn't be used as a reason to deny relief to the first person.
posted by corb at 2:13 PM on March 3, 2016 [6 favorites]


Truly unfettered personal autonomy in deciding to end one's life (or in anything) is an unattainable ideal. The notion that if society just tried harder, everything could be cured, suffering could be alleviated, care would never be a burden on caregivers and the medical system - that's also an unattainable ideal. I think a lot of people on both the pro and anti sides of medical suicide have a good reason in principle - you can tell I lean pro but I completely get why there are disability advocates saying "my life is just fine thanks how about you just throw a little bit of money at accessibility and support instead."

So I guess what I'm most interested in seeing is how different systems have played out in practice where they have been instituted.
posted by atoxyl at 2:18 PM on March 3, 2016 [1 favorite]


Maybe people with disabilities wouldn't want to kill themselves if people stopped viewing them and their bodies as some sort of problem to be solved.

And maybe these conversations wouldn't be so frustrating to disabled people if societies that are willing to engage in lengthy good-faith debate about the right to die were also willing to invest the same amount of time, energy, and money towards the right of disabled people to live like any other person. The fact that the former happens and the latter doesn't is a daily reminder to disabled people that society believes they have no value and nothing to offer the world.

Until the day arrives when something like being in a wheelchair or needing an ASL interpreter is genuinely not a barrier to existing in and navigating the world, making it easier for people to kill themselves is not the answer.

My father is a paraplegic who uses a wheelchair for mobility. His need for the chair is not the problem. The problem is there are no fucking ramps. One of those things needs to be fixed, and it sure as shit isn't my dad.
posted by jesourie at 2:19 PM on March 3, 2016 [10 favorites]


mumimor The family member I knew who wanted to die, did so in a bed in a hospice. I can assure you that if you want to die and you are in an environment that will not call in all the most expensive procedures available, you can die.

Yeah, my father died in a hospice bed too. It was fucking miserable, cruel, and the most awful thing I have ever had to witness in my entire life.

By the time the pain got bad enough that a hospital finally took him in, the cancer had metastasized. He died from a stroke the day after he was admitted to the ER, but they wouldn't let him actually die. With a whole collection of machines they kept him "alive" and in constant agony because the doctors wouldn't administer enough painkillers "it would constipate him" they told us, as if somehow that mattered more than the dead husk of my father writhing in ceaseless pain.

Finally, after two fucking weeks, two weeks of unrelenting torture for my father, a nurse took pity on us and risked his job telling us that we could request my father's husk be transferred to a hospice.

And there they starved him to death, a process that took still more weeks, because it would be fucking "morally wrong" to just kill him.

So yes, mumimor, I've seen the alternative you propose up close and personal, and it is the most vile, evil, thing I have ever witnessed in my entire life. That we should be forced to starve our loved ones rather than giving them the mercy of a clean death simply because people like you have paranoid slippery slope fantasies and you've teamed up with the religious assholes who demand the pain of our families as a show of submission to their deity sends me into a frothing rage.

Butt the fuck out and let us make our own decisions. Your demand that people submit to your view of the proper way to die has been heard and I reject it wholeheartedly and without reservation.

The allowing of assisted suicide in Canada is an unalloyed good and the fact that you and others are trying, unsuccessfully I desperately hope, to roll that back and return Canada to its prior state of barbarism is sickening and horrifying. I can only hope that one day America can follow in Canada's steps, and that you and your vile and evil movement are relegated to the dustbin of history.

How fucking DARE you demand my father's pain for your paranoid delusions?
posted by sotonohito at 2:25 PM on March 3, 2016 [73 favorites]


sotonohito, how much responsibility are you willing to take on here? After calling for assisted suicide to be regarded as normal and accepted, how willing are you to be responsible for everyone who tells an ill or disabled person, "well, assisted suicide is legal, and don't you think it would be easier on yourself and everyone else if you talked to a doctor about that?" Because that's what you are going to do: make assisted suicide a norm and an expectation and turn those who wouldn't do that to themselves and their families into the "outliers" who will have to explain and justify themselves to everyone else just because they don't want to kill themselves.

How many people are going to be convinced to kill themselves when they otherwise wouldn't in exchange for you being satisfied in the knowledge that no one has who wants active euthanasia has to live a moment beyond the point that they want to live?
posted by deanc at 3:20 PM on March 3, 2016 [3 favorites]


My father is a paraplegic who uses a wheelchair for mobility. His need for the chair is not the problem. The problem is there are no fucking ramps. One of those things needs to be fixed, and it sure as shit isn't my dad.

As I said I am sympathetic, in theory to the argument that the option of medical suicide could - I have very little idea what happens in practice - push resource allocation in the wrong direction overall.

But the percentage of assisted suicide proponents suggesting that it would be a favorable outcome for healthy wheelchair users to kill themselves rather than society investing in accessibility is approximately zero so this seems like one of those not good-faith arguments.
posted by atoxyl at 3:30 PM on March 3, 2016 [9 favorites]


But there has got to be somewhere in the middle. Somewhere between Sotonohito's misery and the terror of murdering deaf people.

I was fortunate that my father found a doctor and a hospital that were respectful of his wishes, and his body did what he asked. When he died on the table getting a biopsy of the cancer that was killing him, they brought him back. After he recovered consciousness, he told them that he wanted nothing more to be done.

Shortly after he stated that, an internist argued with my dad in front of my mother that she needed to schedule him for a second biopsy since the first one didn't go through. (BECAUSE HE DIED ON THE TABLE) When my dad wouldn't look her in the eye and say the words "I don't want the treatment." the internist asserted that he didn't really mean that. When he said, "I don't want to look you in the eye because you're too close and I haven't brushed my teeth in two days." She said that was a sign he was hesitant. When my mother asserted that she had power of attorney and Dad did not want any further care, the internist left to get the doctor. Who promptly told her that Dad had asserted earlier he didn't want an further care.

If it hadn't been for that doctor, the internist could have harassed my father to no end in his last days. All his not-jokes to the nurses to lean on the morphine bag and push it all in at once, didn't count. His paper work that said palliative care didn't matter to her. Because he was a self-conscious man about having bad breath she determined he didn't want to die.

I get that somewhere in her training they were told people have to look you in the eye and refuse care. I get that she was just doing her job. It doesn't make it any easier in the midst of losing the rock of your life to have to argue with a stranger to let him die. It makes you feel like a monster and makes you question if you are doing the right thing. It makes the person laying there suffering question everything he'd every thought about death. In the end, he went because his body and his doctor listened to his wishes. I know it was hard for his nurses to not suction out his lungs when the death rattle started, I know they wanted to do everything in their power to heal or help him, but they had the decency to let him go.

Trust me, I get that this is something we can't do lightly or half-assed. A lot of checks have to be put in place to make sure the people who want to die can, but have all the possible resources to not die if they so wish. And to live well.

The focus needs to be on treating everyone as valuable. Old, sick, disabled, or perfectly healthy. You are all valuable and your life has meaning. If something makes you question that or want to not be here, we have a duty as a society to ask you if you're sure. But we also have a duty to listen to you when you tell us why. If there's something we can do, the by god, we should do it even if it's hard. And if there's nothing we can do to make your situation better, then at some point, we need to listen and respect your request.

If my dad had wanted to try every possible treatment, we would have stood by him and helped him fight. If he'd wanted to go home and die in his house, we would have done that for him as well. Honestly, if he'd wanted me to sneak in a puppy dog, a firepit, and a stack of Little Debbie Oatmeal Creme Pies I would have done it in a heartbeat. Because, like most of us, my father spent too much of his life not being allowed to do as he wished and doing what other people thought was best for him. At least here at the end, we should be able give people that one last dignity and let them have their way at least once.
posted by teleri025 at 3:51 PM on March 3, 2016 [11 favorites]


As far as I've seen significant percentage of assisted suicide advocacy is focused on securing the right for people who already have a terminal or very-probably-terminal diagnosis. I get why the slope is slippery it just seems like most right-to-die proponents I'm aware of are working pretty carefully near the very top.
posted by atoxyl at 3:58 PM on March 3, 2016 [1 favorite]


After driving home I think writing while literally crying from rage and grief is not an effective way to communicate.

So let me try this with as much icy cold detachment as I can muster.

If there are groups of disabled people who have concerns that they may mistreated in a society where assisted suicide is legal, and they are addressing those concerns from the standpoint of a system of controls, inspections, and so forth within a system of legal assisted suicide I will join them, work with them, learn about their concerns and do absolutely everything I can to help address those concerns and get whatever fixes are necessary implemented.

But a group of disabled people who are simply opposed to legal assisted suicide? I won't even try to learn what their concerns are. I don't care. I won't learn. I am flat out incapable of considering such a group to be anything but villains seeking to force others to repeat the agony my father suffered.

From my viewpoint that's an uncrossable line. Assisted suicide must be legal, or what happened to my father will keep on repeating, it is happening right this second in America and every time I think about it I am overwhelmed with a sense of helpless grief and rage so great I can barely function.
posted by sotonohito at 4:14 PM on March 3, 2016 [18 favorites]


How fucking DARE you demand my father's pain for your paranoid delusions?


I'm sorry about your father's pain and yours by extension. That pain may inform your decision, or ours, if you share it. And experience you're describing is absolutely a problem.

But it isn't something you can bear as a totem in this discussion that gives you a right to say "how fucking dare you" to anyone or a club you can use to make the other issues go away.
posted by wildblueyonder at 4:26 PM on March 3, 2016 [6 favorites]


One should reflect on the reality that assisted suicide is already happening: one survey claims that 40% of hospice nurses were asked about it, and 16% actually participated in this process 2004 article.

I think it's safe to assume that few of these assists were "legal".

A strong parallel to drug legalization / harm reduction: It's already happening. Do we keep it underground or let it see the light of day and proper acknowledgment and regulation?
posted by soylent00FF00 at 4:44 PM on March 3, 2016 [1 favorite]


The allowing of assisted suicide in Canada is an unalloyed good and the fact that you and others are trying, unsuccessfully I desperately hope, to roll that back and return Canada to its prior state of barbarism is sickening and horrifying.

I'm sorry about your experience. My father-in-law, whom I loved, died of colon cancer. I think it's unfair to call people "barbarians" in this case. Many of us have also lost a family member due to cancer; we are not uninformed.
posted by My Dad at 5:35 PM on March 3, 2016 [1 favorite]


atoxyl, given the implication that I'm not participating in this discussion in good faith, you might find it strange to hear that I'm philosophically in favor of the idea of right-to-die legislation. When I talk about these issues with my dad, which I do often, I'm usually expressing support for the eventual implementation of these kinds of laws. Please believe me when I say that I have nothing but good faith in my heart when I talk about this issue, and that it's something I've thought about deeply and carefully for most of my adult life. Thank you.

The problem is not that people talk about the right to die as an alternative to accessibility. Of course very few people are callous enough to believe that it's better to kill someone than install a ramp.

The problem is that there is nowhere near as much societal outrage about the injustice disabled people face as there is about being denied the right to assisted suicide, despite disabled people saying time and time again that addressing the former could potentially prevent some of the need for the latter. There's a lot of passion about assisted suicide, and a lot of half-assed kicking the can when it comes to accessibility.

The actual lived experience of disabled people, many of whom stand in opposition to assisted suicide out of fear and frustration borne of years of abuse at the hands of the medical establishment, who say over and over again in the face of a great deal of able-bodied skepticism that their disabled lives have value and worth and deserve the committed effort of society to make the world available to them, is more often than not ignored or discredited.

We are nowhere close to a time when we've first given every person the ability to live well, as fully enfranchised and respected members of society, before they decide that they want to die. And I can't prioritize making it easier for a disabled person to die over making it easier for them to take the bus to work.

I desperately hope that some day all people have the opportunity to do both as they choose.

I urge you to read the DREDF article that gauche linked to above: Why Assisted Suicide Must Not Be Legalized. It's meticulously well-researched and does the best job I've yet seen of explaining why many disabled people feel deeply suspicious of assisted suicide.
posted by jesourie at 5:43 PM on March 3, 2016 [10 favorites]


they are addressing those concerns from the standpoint of a system of controls, inspections, and so forth within a system of legal assisted suicide

Once you're able to get past your rage and your icy detachment, I suspect that you can understand that the disabled who fear the consequences of such a system, would rather we work that out before we legalize it. How such a system impacts the disabled needs to be part and parcel of the change, not "phase two".
posted by fatbird at 5:45 PM on March 3, 2016 [3 favorites]


The argument that it can't be allowed under any circumstance because it might lay a path to a system of eugenics for the critically disabled ...the same arguement could be made against abortion, and if that's where anybody is coming from, ...well fuck, too bad.
posted by bonobothegreat at 5:48 PM on March 3, 2016 [10 favorites]


And to be clear, I'm entirely in favour of legalizing assisted suicide in principle. It's just that there are a lot of practical considerations for already-disadvantaged groups that need not be considered as an afterthought.
posted by fatbird at 5:49 PM on March 3, 2016 [1 favorite]


I had read the article earlier and was surprised to read the comments here. The fear of possible eugenics seems so remote compared to the very real suffering that could be alleviated in the here and now. The idea that we could just decide to come up with cures for diseases as an alternative to is just laughable. This thread makes me feel like I am in a foreign land.
posted by snofoam at 6:05 PM on March 3, 2016 [12 favorites]


atoxyl, given the implication that I'm not participating in this discussion in good faith, you might find it strange to hear that I'm philosophically in favor of the idea of right-to-die legislation. When I talk about these issues with my dad, which I do often, I'm usually expressing support for the eventual implementation of these kinds of laws. Please believe me when I say that I have nothing but good faith in my heart when I talk about this issue, and that it's something I've thought about deeply and carefully for most of my adult life. Thank you.

Well I apologize for being snarky like that - my knee jerked on that specific insinuation just because you initially brought up "lengthy good-faith debate about the right to die" and then built the rest of your argument around an example that struck me as quite distant from the situations in which I generally see medical suicide proposed as a good option, certainly from the contingencies in which I would like to have it available to myself.
posted by atoxyl at 6:15 PM on March 3, 2016


The idea that you have to fix all the problems of the disabled before you can allow them the right to end their lives is some bullshit. Would it be nice if you could? Yeah. But that's basically holding people in pain hostage for the changes you want to see, and that is not okay.
posted by corb at 6:21 PM on March 3, 2016 [5 favorites]


I read the DREDF article, and all I saw was anecdotes. I understand that medical killing of patients will always go under-reported since it is illegal, but it clearly happens (see: Harold Shipman). A legal framework for allowing physician-assisted suicide must build in checks such that the assumption is that people wish to remain alive.

I come from a culture where suicide is stigmatized. Some churchyards can refuse to bury suicides. Life insurance may not pay out to the family if suicide is suspected. And yet, as a culture we uphold individual choice above everything else, but still stop short of even considering suicide as understandable. My wish is for a kinder society than that.
posted by scruss at 6:22 PM on March 3, 2016 [3 favorites]


> Are there statistics that could shed light on whether the assisted suicide in the states where it is legal is being abused?

Oregon maintains reports here. The latest summary report (Feb 4, 2016, Year 18) is here.

There's a section on pg 6 with statistics for "end of life concerns" (nonexclusive - can select multiple categories - and only affirmative answers; eg, "don't know" doesn't count). In 2015, most patients agreed with "Less able to engage in activities making life enjoyable" (96.2%), "Losing autonomy" (92.4%), and "Loss of dignity" (75.4%). Some patients agreed with "Losing control of bodily functions" (35.7%) and "Inadequate pain control or concern about it" (28.7%).

But a heartbreaking 48.1% also agreed with "Burden on family, friends/caregiver" and three patients agreed with "Financial implications of treatment" (2.3%). I don't know how this data is gathered, whether it is reliable (who is submitting data - patient? caregiver?), or what it really means - maybe that the system is generally working as intended, given the most popular options. But the "burden on family" stuck out for me, because I do think it's legitimate to consider how this affects cultural norms and expectations, though of course the numbers indicate this isn't most or even any patients' only reason. (I am thinking of the elder care context, not disability more broadly.)

Closer to the abuse question, I found anecdotes (from DREDF). (On preview, jinx.) But I don't know if a death with dignity regime actually creates a higher risk of, for instance, elder abuse, or if abuse would still occur elsewhere (just in different, perhaps more blatantly illegal, ways).

This is such a difficult topic.
posted by cdefgfeadgagfe at 6:23 PM on March 3, 2016 [4 favorites]


There should be a legal general registry to sign on for humane (painless) end of life treatment.
If there is, then just sign me up. My will says minimal intervention, which is the best we have legally so far.

Many people are terrified of the death panels comin' to git them when they're old. In a free society they should have the freedom to suffer terrible agony for years before they die, if that's what they freely choose.
posted by ovvl at 6:29 PM on March 3, 2016 [1 favorite]


The fear of possible eugenics seems so remote compared to the very real suffering that could be alleviated in the here and now.

I posted an example that most Canadians here will recognize by name. And calling it "eugenics" does the issue a disservice by pigeon-holing it with death camps and breeding schemes. Latimer was, without dispute, a conscientious father and caregiver who appeared to make a sincere determination that his daughter's life was no longer worth living, and since she could not do what he thought needed to be done, he did it for her. If you can't imagine why that doesn't frighten people who are varying degrees of dependent upon caregivers, then you're severely lacking empathy for this side of the issue.

The idea that you have to fix all the problems of the disabled before you can allow them the right to end their lives is some bullshit.

That's not the idea at all. Seriously? How is it that so many mefites are having trouble comprehending that people who are dependent upon others might be fearful of expanding the range of outcomes their caregivers might choose, sincerely or for more venal motives? We have examples of caregivers hording the disabled for benefits cheques. We have examples of caregivers piously murdering their charges. We have caregivers who aren't well themselves taking out their mental health issues on their charges. And we have caregivers who simply crumble under the burden and lack of support they already receive.

And you wonder why activists for these groups might be sceptical about suicide being legitimized?
posted by fatbird at 6:57 PM on March 3, 2016 [5 favorites]


Assisted suicide can be legalized without legalizing euthanasia. Yes, they're similar, but people are dying screaming in pain waiting for the laws to be changed. We can, and should, legalize the less grey areas without needing to resolve all the more grey areas first.
posted by randomnity at 7:02 PM on March 3, 2016 [7 favorites]


Purdy's friend and fellow poet Susan Musgrave is mentioned in the article. I heard her interviewed on CBC's As It Happens this evening. One of the things she said is that while she is in favour of access to assisted suicide in theory, she is finding it difficult to deal with the new reality of her friend's death.

It is a complicated issue and brings up strong feelings for many of us, as this thread makes abundantly clear. So often we operate from our closest experiences. I've seen two loved ones die slowly with dementia and am glad there will be other options available to me should the time come. I'm also very glad to read the thoughts from those of you who worry about access to assisted dying. Legalized or not, we need your voices, so thank you.
posted by Cuke at 7:17 PM on March 3, 2016


That's a good point, randomnity. Terminal illness - as in near-terminal, not unknown shortened lifespan - should not be lumped in the same category as anything else.

My grandmother, who opted for no treatment when her breast cancer came back after my grandfather died (horribly, for years, which was in fact what he wanted, and I hate him for it but I would have defended his right to do it), got thrown out of hospice for not dying fast enough and so declined over the next 6 weeks, losing pretty much all mobility the second week, the ability to speak the third, stewing in dirty diapers, gasping because her oxygen machine needed resetting. Once the staff saw that my mother was going to be there 18 hours a day, they simply stopped coming to the room unless my mother went and made a scene to get help. My grandmother, I think, had really hoped for a blood clot or heart attack long before we ever got there, though she wouldn't have done it herself unless it was legal and there were Channels.

I do very much understand the concerns of disability activists, but that is not the same situation as clear-cut impending miserable death.
posted by Lyn Never at 7:21 PM on March 3, 2016 [6 favorites]


This

The argument that it can't be allowed under any circumstance because it might lay a path to a system of eugenics for the critically disabled ...the same arguement could be made against abortion, and if that's where anybody is coming from, ...well fuck, too bad.

This

And to be clear, I'm entirely in favour of legalizing assisted suicide in principle. It's just that there are a lot of practical considerations for already-disadvantaged groups that need not be considered as an afterthought.

And this

By the time the pain got bad enough that a hospital finally took him in, the cancer had metastasized. He died from a stroke the day after he was admitted to the ER, but they wouldn't let him actually die. With a whole collection of machines they kept him "alive" and in constant agony because the doctors wouldn't administer enough painkillers "it would constipate him" they told us, as if somehow that mattered more than the dead husk of my father writhing in ceaseless pain.

...are things that I try to keep in my head at the same time. I want to see a legal system of assisted suicide in Canada.

I want people in situations of extreme suffering to have the option of a humane death open to them. I could be in that situation some day. I know I'd want it as an option.

One problem for me is that some of the more reasonable caveats for it are disturbingly awfully close to the pro-life rhetoric around the issue.

But it's also a fact that accessibility and quality of life (and not "cures" or "treatments" that may or may not exist any time soon) are important things to consider.

Suffering in a terminal illness state is a clear bright line.

But when the discussion goes to "in the case of disability..." skepticism is called for. The history of disability demands it. People with disabilities who voice objections need to be listened to.

Where I'm at is that legal, humane, medically-assisted options for suicide (not euthanasia) should exist in this country.

It is difficult. The reason I brought up eugenics early in the thread was not out of some "pro life" impulse. The history of eugenics deals with what is an acceptable or valuable human life in the context of how we understand disability.

It was, though, bad faith arguing on my part. For that, I'm sorry.

But the whole point of Not Dead Yet (heavily referenced in the DREDF article) is people actually saying - yeah, no. I'm good to go on living, despite what you may think about the quality of life I have.
posted by mandolin conspiracy at 7:29 PM on March 3, 2016 [2 favorites]


Trust me, I get that this is something we can't do lightly or half-assed. A lot of checks have to be put in place to make sure the people who want to die can, but have all the possible resources to not die if they so wish. And to live well.

Any effective, real system of checks and barriers that people have to go through to get an assisted suicide approved will inevitably have to reject some applicants. And we have to accept that: some people will have to keep on living without someone to assist them dying even though they want to die.

I really don't think there's a middle ground here where "everyone can make their own individual decision on their own, completely of their own volition." Either we have a culture and a system where people who want assisted suicide have to explain, justify, and argue their case, or we end up with a system and culture where the people who want to keep living have to justify and explain themselves. The latter situation is absolutely dystopian.
posted by deanc at 8:40 PM on March 3, 2016 [4 favorites]


But when the discussion goes to "in the case of disability..." skepticism is called for. The history of disability demands it. People with disabilities who voice objections need to be listened to.

Yeah, absolutely.

I am 100% all-in completely for assisted suicide as an option for people with terminal illness, having watched my dad die badly and having known a woman who was fortunate enough to live in Oregon during her lengthy illness with metastatic breast cancer. She was able to choose her moment. It was much too soon, but that's because she had fucking metastatic breast cancer before she was even 40, not because she could have had another month here or there, and not because she should have forced herself to live with the many ways terminal cancer hurts, or with the dismal choices that palliation can give you: chronic constipation and hemorrhoids that look like a chrysanthemum, or poor control for the agony of bone mets? mechanical ventilation or nonstop air hunger? transfusion for anemia, or bone-deep fatigue? Palliation is a wonderful thing, but it's not perfect, and dying can be a miserable experience for more reasons than just excruciating pain.

If my cancer changes its nature and turns into one like my dad's, where it chews and gnaws its way through the structures of the neck until it finally hits something crucial, stripping me of eating and swallowing and speech, and gradually strangling me, with not a waking moment without the sensation of choking, then HELL yeah, I want the option.

But none of this should have anything to do with non-life-threatening disability.
posted by gingerest at 8:48 PM on March 3, 2016 [5 favorites]


Some of the ends of life described here are really terrible - horrifying.
When my grandfather died, many years ago, I had no experience or knowledge, and it was similar, painful and frightening for him and for us to watch. Since then I have learnt about end of life care, and particularly I have learnt that very few healthcare workers (doctors or nurses) know anything about it. As family, you don't only need to find a hospice, you need to find the hospice who actually knows what they are doing, and if possible talk with them together with the patient in good time before they are needed. It's a similar situation to that of disability: if proper end-of-life care was widely available, suicide would be less attractive for terminal patients.
My grandmother wanted to die at home, and we found a home-hospice service for her. There are possibilities but you really need to plan ahead and talk about it.
posted by mumimor at 12:15 AM on March 4, 2016


Even with really good end of life care, which I have seen, dying of cancer can be really really terrible. Not just painful but draining and nauseating and impaired in quality in many dimensions. In dimensions that may not be treatable in a dying body. Pain is a critical piece, but it isn't all there is. Dying people need the option of controlling when they die. All the things you've said about how people can be exploited and abused are also true of vulnerable people who are not dying.
posted by gingerest at 12:31 AM on March 4, 2016 [3 favorites]


I am distinctly on the side of allowing people the right to a pain-free and self-determined end of life. I can't help but think how f-ing dare you! to anyone who would tell me (or anyone else) that they must continue to live in abject pain --mental or physical-- because of something that might happen (so wholly theoretical) to someone else given the same choice.

Some people here on the "anti-assisted suicide" side of the argument repeatedly express their fear of the "normalisation" of assisted suicide. Right, as if it would ever be akin to popping out to a McDonald's for a fricking Big Mac. Come on.

This set of arguments reminds me of the abortion debate. Abortion is legal (federally at least) and it remains morally fraught even so: the vast majority of people don't LIKE abortions and don't want to have to get one themselves, but IF the circumstances are such that it could be beneficial to the person's well-being, then damn right, they should be able to get one. [So to belabour the analogy: if you don't like abortion or don't want to have one, then don't f-ing get one. But don't tell anyone else they can't have one.]

Same thing here: it isn't something most people are going to abuse - and restrictions can be put in place to lower the (small) potential for abuse - but the RIGHT should be made available to people. And people will take great care with that choice.

Again, how DARE you to tell me that I should have no autonomy over my OWN BODY.
posted by Halo in reverse at 2:01 AM on March 4, 2016 [13 favorites]


Latimer was, without dispute, a conscientious father and caregiver who appeared to make a sincere determination that his daughter's life was no longer worth living, and since she could not do what he thought needed to be done, he did it for her. If you can't imagine why that doesn't frighten people who are varying degrees of dependent upon caregivers, then you're severely lacking empathy for this side of the issue.

But there is no assisted suicide law that comes anywhere near allowing something like that, because that obviously wasn't assisted suicide. If you want to pursue an extremely tangential concern like that, presumably living wills and advanced directives are equally problematic.

But a heartbreaking 48.1% also agreed with "Burden on family, friends/caregiver"

It is sad, but caring for a dying person is burdensome in many ways. It would be stranger if people didn't recognize it, and it seems pretty intuitive that it would be listed amongst the concerns. I don't think it means that family/friend caregivers were guilt tripping the dying people (i.e., burden distinct from how graciously caregivers accept that burden). In fact, I would guess that many of the people who didn't select this didn't have family or friends caring for them.
posted by snofoam at 6:40 AM on March 4, 2016 [3 favorites]


It's interesting to see the juxtaposition of folks on the pro side saying "look, this is very clearly about people with no quality of life, not your paraplegic relative, not deaf people" with the concerns of those of us on the negative side.

I live with a lot of independence and a high quality of life. I see people with bodies very much like mine who lack that, not because of their bodies, but because they have gotten socialized in very broken ways by our society. Or because we don't prioritize their access to healthcare, employment, housing, equipment, supports. I see children with disabilities not radically different from my own who are killed by their parents and guardians, and it is labeled as a mercy killing. To the extent that it shows up in the media at all as a tragedy, it is a tragedy for the parents, who must have been in such pain. When we prosecute it in the courts, it's very often manslaughter and a sentence of a few years, and not treated as a planned and premeditated murder.

I want to respect people's right to self-determination. But I am horrified at what making it *easier* to euthanize people will do to people like me. Not because of some hypothetical musings about what might happen, but because I see the choices people already make for others, and the 'free choices' that people are subtly or not-so-subtly coerced into, in a world where we haven't yet institutionalized socially-acceptable suicide on the basis of disability.

I don't have a great resolution here. I don't have the solution that addresses everyone's needs. But this is equally as personal and real and first-hand for those of us on this side of the conversation as it is for those of you who've seen a friend or relative suffer through a prolonged end-of-life.
posted by spaceman_spiff at 6:45 AM on March 4, 2016 [3 favorites]


spaceman_spiff, if you seek to address your concerns from a framework of keeping/making assisted suicide legal I will be the staunchest ally I can and I will go very far out of my way to help you achieve whatever safeguards you think are necessary.

If, on the other hand, you think your best path forward is simply to criminalize or re-criminalized assisted suicide then I not only will oppose you but I will not bother even learning why you favor torturing other people until they die.

You can have me as an ally or as an enemy. And if you want to even explain yourself you must have me as an ally. In this matter, for my own mental health, I cannot afford to listen to my enemies. It is too painful.

I doubt very much that I'm alone in that. Most people who have had direct experience with the need, the desperate merciful **NEED**, for legal assisted suicide just don't have the mental strength to listen to the reasons given by people would repeat the torture our loved ones experienced.

And, to be blunt, you need us a lot more than we need you because we outnumber you. If you've got legitimate concerns then you'd be vastly better off getting us on the pro-assisted suicide helping you address them than you are engaging in an evil quest to torture the terminally ill.
posted by sotonohito at 7:44 AM on March 4, 2016 [2 favorites]


One last comment and then I'm out.
But a heartbreaking 48.1% also agreed with "Burden on family, friends/caregiver"
This struck me as maybe a little, not short-sighted, but not fully understanding a person's possible reasoning.

Imagine you were moderately wealthy, you went to finishing school, had servants, the whole nine yards. You marry a farmer and think you'll have a nice time of it, with a little hard work here and there, but in your mind you're think more gentleman farmer than barely scratching out a life. Then the Great Depression hits and your father is the only man in town who didn't close his business. Corners are cut everywhere and your family struggles. You and your new husband struggle like everyone else, but the farm is paid for so you're better off than most. Your husband gives jobs and food to people all over town, not because you can afford it but because they need it. Eventually, things improve. You can send your four kids to college and they can all find jobs not on the farm, but everyone knows that the farm is the prize. That land and the security it promises is one of the most important things you can give your children. Your husband dies at a frighteningly young age and since you were only a farmer's wife and he was just a farmer, that fancy new social security doesn't kick in for you. You're barely keeping your head above water as a widow with adult children and then you discover that you can rent out the farm. Once again, that land provides a lifeline you would not have had otherwise. You still scrimp and save, because that's what you do. You made it through the Depression feeding everyone around while you and your husband ate peanut butter and jelly sandwiches. You keep every present your children give you because they might need them back if things get bad again. You stay on that farm and in that house, conserving every bit of wealth you might have so in the end, your children and grand-children will be able to retain that precious land.

Slowly, your mind deteriorates, you hear voices where there aren't any, you imagine men living in the basement waiting to kill you and take the land. Your body is strong though, the doctors say you could live forever with your strong heart and farmwife strength. Eventually, you just can't care for yourself, walking the fence row, looking for cows that haven't lived on the farm in decades, you fall and break your arm. Your children have little choice but to put you in an assisted care facility. You beg them not to take you to the doctors, because you know that nursing homes are expensive and every day you spend it one is a day of money out of the land.

After ten years in a home, slowly bleeding your savings dry, you've not been cognizant but once or twice in that time. Those times you've begged to die. To save you the humiliation of being cared for like a child, to save the money that could preserve the farm. But of course, you're just an old lady out of her mind. Never mind that you watched this death happen to your mother and told your oldest son how you don't want that for yourself. Your body just keeps on trucking and while your mind is beyond gone, it doesn't seem like it will ever end. Finally, with the savings all gone, your children decide to sell off a portion of the farm. It's just the woodland buffer that your husband bought to keep developers at bay in the 1950s. But it's where your children and grandchildren have roamed for decades like "little hoodlums."

Shortly after the sale goes through, you pass away after an accident at the nursing home. Unattended you fell yet again and some bone made it into your bloodstream. Finally you found peace. The farm was mostly safe.

Multiple times when she was lucid, my grandmother begged to die. Beyond the sheer humiliation of this very private woman being tended to by strangers and her children, the fear of being a financial burden and undoing all the work she had done her whole life to provide for her children was a major reason why. I know because I asked her. For someone whose entire life revolved around making sure her children and grandchildren never had to do without and so that we would one day get back to that place of wealth she had as a child, the idea of slowly bleeding out your money to maintain a life of misery was a nightmare.

She wasn't right. She wasn't a burden and we didn't lose the farm. Hell, no one lives there anymore, we just hang on to the land and rent it out like always. But even if we'd lost it, if we'd had her longer in good health and sound mind, no one would have grumbled. Even so, it was something she thought was extremely important. Being a burden on your family, even if it's really just in your head is a very compelling reason to do a lot of things.

I'm not saying that it isn't sad that someone feels like a burden on their family and wants to die, I'm just saying I can see how it would be a rational way to feel.
posted by teleri025 at 7:51 AM on March 4, 2016 [4 favorites]


A burden is really just a load, and caring for a dying person is often a huge burden, in terms of time, effort, money and emotion (or at least some of these). Even if someone shoulders that burden with grace and equanimity, it doesn't mean the burden doesn't exist. To pretend that it shouldn't feel like a burden would just seem to set up caregivers for feelings of self-doubt. It's sad, but not because it shouldn't be a burden.
posted by snofoam at 8:23 AM on March 4, 2016 [2 favorites]


And, to be blunt, you need us a lot more than we need you because we outnumber you. If you've got legitimate concerns then you'd be vastly better off getting us on the pro-assisted suicide helping you address them than you are engaging in an evil quest to torture the terminally ill.

I think when you're simultaneously castigating disabled people not to get too uppity as a minority while criticizing them as evil torturers, you should consider whether you're crossing some rhetoric lines or not.
posted by Conspire at 8:33 AM on March 4, 2016 [11 favorites]


Uppity is great. Uppity is what got us the much needed ADA, which despite its flaws and not going far enough is so good that the UN holds it up as model legislation. I'm 100% on side when it comes to fair treatment and equality for disabled people. It bothers me greatly that our society still features significant stigmatization of disability and I'll do whatever I can as an ally to help fix that.

Polls of disabled people tend to produce such radically different results that the polls conducted must be deeply flawed. Lifesitenews (ick) claims 70% of disabled people are fearful of being pressured if suicide is legal, Dignity in Dying UK claims 86% of disabled people support assisted suicide. Clearly one or the other is lying.

My opposition is not to disabled people, but only to disabled people who would seek to prolong the suffering of people who want to die. That latter group is not the totality of disabled people, despite polling being inconsistent I think its self evident that disabled people are not a monolith.

So yes, I'll criticize the subset (minority or plurality or majority whichever it is) of disabled people who, for whatever reason, seek to torture the terminally ill. I'm sure they think they have good reasons. I don't care what those reasons are, they want to torture my father so they're my bitter enemy. Period. No further discussion necessary or possible.

And I'm far from alone. Support for assisted suicide is growing by the day, and that growth is mostly fueled by people like me who have seen up close and personal the results of assisted suicide being illegal. People who have watched friends and family suffer endless pain for no reason are not going to accept that the agony of their loved ones is a necessary sacrifice for the wellbeing of disabled people.

Anyone who opposes legal assisted suicide is advocating for the terminally ill to be tortured. I'm sure such people have reasons that they believe are sufficient and good. No one is motivated by a cackling cartoon supervillain urge to do evil. But the end result is still evil no matter how good the motive. And, again, I refuse to accept that the pain of our loved ones is a necessary shield to prevent harm to disabled people.

We can have both protections for disabled people and legal assisted suicide so that people don't have to die slow agonizing deaths.

And, again, factually, it will happen whether or not a subset of disabled people opposes it. If they actually have legitimate concerns their only path forward to get those concerns addressed is to support legal assisted suicide on the condition of their concerns being addressed.

Because as long as they're simply declaring that they're opposed because reasons, they'll get steamrolled and they'll deserve it.

Perhaps that isn't the nicest way to put things. I used up all my nice on this subject a long time ago.
posted by sotonohito at 9:14 AM on March 4, 2016 [1 favorite]


I can't favorite teleri025's comment hard enough.

75% of everything I do is based around making a better life for children, amassing resources and land for children. It is more important to me that my children have a better life than that I do.

If my choices are death or expensive assisted living towards the end of my life, I only hope I have enough physical strength to kill myself. And that would have nothing to do with wishes of my family, who I'm sure would be like "no we want you here." Well, fuck that. They'll be sad, but they'll get over it. I'm not draining my kids legacy for another gasp of air.
posted by corb at 9:15 AM on March 4, 2016 [1 favorite]


Can we please stop with the non-consensual euthanasia slippery slope derail?

This article, and the SCC ruling, are about physician-assisted suicide by the explicit request of consenting, mentally aware, terminally ill people with unavoidable pain and/or mental distress, as determined by a panel of doctors. They are not about killing disabled, depressed, or otherwise vulnerable people (even consenting ones!) who do not fall into all of those categories. The way these vulnerable people are treated by society now is a disgrace and an outrage. It's still a derail in this particular discussion.

If you want to argue against legalizing the first scenario (PAS) by inferring the second (murdering disabled people), you need to provide evidence, not speculation, that one leads to the other. For example, here are two studies showing that in real life, one has not led to the other:

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in "vulnerable" groups.

Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

From the articles:

Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations.

[In Oregon] no one received physician‐assistance in dying who was not determined by two physicians to be terminally ill...[In the Netherlands] about 0.2% of patients receiving euthanasia or assistance in suicide were estimated to have forgone more than 6 months of life, or less than 10 of the approximately 2400 cases in 2005.

Briefly, the argument states that: if we allow A (the use euthanasia at the request of terminally ill patients), B (abuse of euthanasia, that is, ending the life of vulnerable patient groups without their consent) will necessarily or very likely follow. B is morally not acceptable; therefore, we must not allow A (Griffiths et al. 1998; van der Burg 1992). Our studies show no evidence of a slippery slope. The frequency of ending of life without explicit patient request did not increase over the studied years.


Note: I did read the DREDF article linked above, and while I understand their concerns overall and the article is indeed well-cited, if you actually follow the citations, every single one relating to non-consensual euthanasia leads to somebody's opinion, not a scientific study. Including the percentages presented, so who knows what those are based on. And they're also almost all from the same guy, Herbert Hendin, who is very knowledgeable I'm sure but also a very well-known suicide-prevention activist, so not exactly an unbiased source.
posted by randomnity at 10:36 AM on March 4, 2016 [12 favorites]


We have examples of caregivers hording the disabled for benefits cheques. We have examples of caregivers piously murdering their charges. We have caregivers who aren't well themselves taking out their mental health issues on their charges.

None of these illegal things is going to be legal just because physician-assisted suicide becomes legal. All of this will still be abuse and will still be illegal under the law. It will not allow caregivers to just go around killing their charges because they believe their life is worthless any more than they were allowed to before the ruling.
posted by LizBoBiz at 11:07 AM on March 4, 2016 [3 favorites]


If I have my way I am going out after a prolonged overdose from opiates that will take me months to complete. I'll start with some opium tea, work up to some morphine syrup, codeine before bed, handfuls of Oxycodone (just to take the edge off), finally heroin and a smorgasbord of whatever else is at hand. I intend to slur and drool my way into oblivion over the course of months.

Seriously, my life, my body. I'd love to have a death in store worth looking forward to.

Of course, given my druthers I'd like to do this some time in my late 80s.

I don't want palliative care. I want recreational pleasure care. I want to liquidate my assets and swallow them, put them up my nose, and inject them (you can't take it with you). Hell, I'll even consider a suppository if it means I get to spend my last days pain free.

Instead, because puritans decide what's best for others, what I am most likely to have is cognitive decline and worsening pain until I am little more than a mindless wave of agony. I've watched a few people die in my time and that's how nearly all of them went out. Which, again, is why Final Exit is one of my charities.

If you suffer from chronic pain like I do, the idea of spending your last days on Earth as an opiate addict isn't unappealing. It's appealing now truth be told. If TV were reality, I would be the IT version of House.

The older I get, the less inclined I am to leave these choices up to someone else.
posted by cjorgensen at 11:23 AM on March 4, 2016 [9 favorites]


This article, and the SCC ruling, are about physician-assisted suicide by the explicit request of consenting, mentally aware, terminally ill people with unavoidable pain and/or mental distress, as determined by a panel of doctors.

I'm going to respectfully disagree on one point; the SCC ruling is for MAID to be available for a person with“a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” There is no list of including and excluded conditions, and the Committee's second recommendation is "That medical assistance in dying be available to individuals with terminal and non-terminal grievous and irremediable medical conditions that cause enduring suffering that is intolerable to the individual in the circumstances of their condition."

There's a lot there to unpack, but my first point is that the Carter decision terminology is being interpreted to explicitly include non-terminal conditions, which is why I understand the concerns expressed by the disability community around this.

Beyond that, there is a lot to unpack in terms of language here; terms like "grievous" and "irremediable" and how to interpret those (the medical colleges/associations seem to have a lot to say there, as it appears they already have definitions), but I'm mostly intrigued by "circumstances of their condition", because it certainly seems to imply (to me) that work to address circumstances of any given condition might just change the nature of what is "intolerable to the individual". To the credit of the committee, they also make recommendations for improving palliative and end-of-life care, as well as care for people with dementia (I'm not sure why they don't discuss better care for other disabilities/conditions as well; that just might be an artifact of who testified and what they testified about, as I know the Alzheimer Society of Canada specifically outlined challenges experienced in getting care across the board).

Blah. That's a lot of typing to just make the point that the ruling and the recommendations so far don't speak only to terminal conditions, and at the end of it all, I'm just going to make the same points I've made before; namely, that we need to ensure good care is available for everyone, whatever their condition and wishes on this topic; and that the process for determining capacity and consent is strong and catches people who might be getting pressure from family/friends/systems to make this decision or the converse - that we feel confident that people are making this decision by themselves for themselves, which is what I feel is the intent behind the decision.
posted by nubs at 11:30 AM on March 4, 2016 [2 favorites]


Ah thanks for the correction - I'd misinterpreted "grievous and irremediable" to mean terminal for some reason. That does make the dividing line slightly less bright, but the most important factor is still informed consent, which is included in the SCC recommendations. This can get a little grey in some cases (e.g. advance consent, particularly relevant with Alzheimers), but it's still miles away from legalizing non-consensual "mercy" killing.

I also think "enduring, irremediable, intolerable suffering" is clearly distinguishable from someone who can't e.g. hear or walk, unless we're using a truly exceptionally broad interpretation of "suffering", but I can understand why people who fall into the more grey areas would be concerned....and I certainly agree that prioritizing good care is also important to reduce suffering.
posted by randomnity at 12:51 PM on March 4, 2016


Finally, I remembered to look up what Atul Gawande has to say. In his critical writings, I recognize so many of my own experience with the health-care system. The short clips I've linked to are very moving, you can see his doubt and worries in his body-language.
But basically he is saying, yes, people should have the right to decide for themselves but the problem is when it replaces sufficient and correct care. Which it does.
posted by mumimor at 1:02 PM on March 4, 2016


I really want to underscore the point that euthanasia is not the same thing as assisted suicide. It's about the locus of control (and, yeah, I have no solution for the situation of decisional proxies, which affects everyone who isn't consistently capable of informed decisions, including children).
To extend the abortion analogy - reproductive coercion is a common form of partner abuse. That doesn't justify removing contraception, abortion, and prenatal care as options. Forcing someone to die is worse than forcing them to remain alive, we agree on that as a society. But it's the forcing that's the problem. (People with major depressive disorder and suicidality are in the group with diminished decisional capacity that I don't know what to do about - but in that case I think we need to treat the fuck out of their depression and check back in. Although it gets very tricky when one of the symptoms of the diminished capacity is also the outcome you want them to be able to rationally consider.)
posted by gingerest at 1:55 PM on March 4, 2016


the dismal choices that palliation can give you: chronic constipation and hemorrhoids that look like a chrysanthemum, or poor control for the agony of bone mets? mechanical ventilation or nonstop air hunger? transfusion for anemia, or bone-deep fatigue?

This is why I wrote earlier about the necessity of awareness and research - it shouldn't be that way but patients and family need to seek out the hospice care with the relevant knowledge. Each and every of the issues you list should be met at good palliative care centres, but I am very aware that they are not. I understand why death, and specifically cancer-death is frightening, because treatment is just not good enough in many places across the globe. If you are in the wrong place or if your family doesn't know what to look for, you will have a horrible death.
A few months after my grandmother died in her home, with state of the art palliative care, my colleague's mother-in-law died painfully in a dirty ward in a hospital, where they hadn't even bothered to secure her privacy.

For me to get where I am, I have been through terrible experiences. I am not saying the current situation is OK. I am saying that I have learnt that honest advice and proper care can change the focus of many patients and their kin. And that proper care is far too scarce and oddly under-prioritized. And that securing that every single citizen gets the best possible end of life treatment should be the top priority of every government, rather than PAS.

One of the important experiences for me was when a young doctor talked with my grandmother about her expectations for her life and her values, right before an important surgery, a couple of years before she died. The way he did this was amazing and life-changing for my gran and for me. She survived and recovered after the surgery, but realized that she was mortal, which made it possible (if not easy) to help her die the way she wanted to die.
posted by mumimor at 2:40 PM on March 4, 2016


I believe California legalized PAS just this January, six months too late to save my mom from dying in severe pain from breast cancer. I think I'm still dealing with some type of PTSD from the experience myself, although it wasn't as bad as some of the other anecdotes in this thread.

I'm personally against all attempts at legislating morality. Standing in the way others choosing relief from the unrelenting torture they're going through because you have fears that the process might, just might be abused strikes me as particularly evil.
posted by Thoughtcrime at 4:54 PM on March 4, 2016


I also think "enduring, irremediable, intolerable suffering" is clearly distinguishable from someone who can't e.g. hear or walk

It might very well be clearly distinguishable for you personally, and what follows should absolutely not be read as me telling you, specifically, otherwise.

The voices of many, many disabled people have been saying for years that it is NOT clearly distinguishable to the world in general. Disabled lives are absolutely and with great frequency viewed as intolerable and irremediable by the able-bodied, and decisions are made routinely about public policy and medical care based on that view. Ableism is entrenched in our society. It is as real as racism and sexism.

Disabled people must be believed when they speak about their lived experience. It is not OK to able-splain to them about all the ways their fears seem rare or disconnected from reality from the perspective of the able-bodied, nor told that they're overreacting. They should be considered the experts on disabled life and their recommendations should be solicited early and often in these discussions. And given the lengthy history of abuse of the disabled at the hands of able-bodied people, often in the guise of protection or "doing what's best," disabled people should not be blamed nor insulted for demanding their secured rights instead of defaulting to the assumption that of course the able-bodied world will do right by them.

Whether we want to believe it or not, whether it conflicts with the able-bodied community's personal opinions or not, the fact is that the able-bodied world rarely does right by the disabled. It is unreasonable to expect a disabled person to believe that even though their lives are devalued and disrespected in ways big and small every day[1], somehow their lives will be valued and respected regarding assisted suicide without explicit legislation guaranteeing it.

I'm really struggling with the tone of this discussion because it seems so anathema to the way Metafilter usually is. In other threads in which the rights of minority groups (like women or people of color) are discussed, the importance of hearing and believing the voices of those community members themselves has been expected as a ground rule for inclusive discussion.

Why has it been so difficult for some people to give disabled voices the same respect over the course of this thread?

[1] In just the last six months: a waitress turned to my mom and asked, "And what will he be having?" (assuming my dad could not make decisions or speak for himself), and someone walked up to him while he was waiting outside a store for me and handed him a dollar (assuming that because he was disabled he must be in need of a handout). If this surprises you even a little, your assumptions about the able-bodied world and its treatment of the disabled need adjusting.
posted by jesourie at 5:11 PM on March 4, 2016 [9 favorites]


Any person with late-stage cancer or a chronic illness is going to feel like "the right to die" is more like the "pressure to die".

I don't know where you get this idea. In fact I often see the opposite, where a family encourages someone to hang on and try every effort available to prolong life without regard to the quality of that life. I've seen people tell a terminal cancer patient who will never leave their bed again to "keep fighting."

Look, I have stage 4 appendiceal cancer that had metastasized to the peritoneum and lymph nodes before they discovered it. My chance of still being alive five years from now is 20%. And believe me, I'm doing everything I can to be in that 20%. I want to live to see 45. BUT I also don't want to go out like some of the people I've met online, increasing their doses of pain meds while the cancer eats fistulas in their bowel and bladder. IF I get to the point where I am out of treatment options AND I no longer have quality of life (as decided by ME and not my organs failing), I want to be able to have the calm, peaceful death that my pets have had, not a pained and fearful waiting for my body to fail me for the final time. And yes, I understand hospice and I understand the various pain control solutions that will be available to me, but I think there is great value in being able to choose one's own limit to pain. Assisted suicide is not euthanasia. I want my doctor to be able to prescribe me a peaceful end when it's time and I ask for it.

(And I'd appreciate it if any responses to this don't accuse me of being wrong. You can continue to debate whether you are for or against the law in general, but I'd appreciate it if you don't use my sharing this very personal piece of information to debate my own personal feelings on the matter.)
posted by MsMolly at 6:47 PM on March 4, 2016 [15 favorites]


Thank you for sharing that, MsMolly, and I wish you as much good health as possible and the most peaceful death possible when you decide it ought to come.

In the spirit of sharing personal information, I will say that I'm both a person in favor of assisted suicide for terminal illness AND a person living with multiple sclerosis who might experience significant physical disability and loss of independence before I die of something else entirely.

I want the opportunity to choose the time and manner of my peaceful death if I am terminally ill, maybe before I'm suffering at all, AND I want to be sure that the disability I might face because of MS is never the reason I want to die nor the reason why anyone else thinks I ought to.
posted by jesourie at 6:58 PM on March 4, 2016 [1 favorite]


My point was that for many people those choices can't be made better by medicine, because the constipation is only addressable up to a point (and I have seen and treated those hemorrhoids for cancer patients, I am not kidding or exaggerating even a little about how they look, and I can only imagine they feel even worse), the air hunger can only be addressed up to a point, transfusion carries risks all its own - the choices, for many dying people, are all bad. You are mistaken about what hospice can and cannot fix - I chose those examples specifically because in practice I saw people having to make those choices, with no good options. Dying is hard, hospice can make it easier, but it can't work miracles.
posted by gingerest at 7:50 PM on March 4, 2016 [3 favorites]


It's worth noting that just because someone is not tagging their posts "I am disabled" does not mean they this have no disability and are ablesplaining.
posted by corb at 9:16 AM on March 5, 2016


Why has it been so difficult for some people to give disabled voices the same respect over the course of this thread?

In my case its simple: I flat out refuse to grant any respect to any person, able bodied or disabled, who claims that it is necessary for any reason to force people to live through what my father did.

I am completely willing to listen and grant respect to the views of disabled people who are not demanding torture for those suffering from terminal illness. Those who are, well they wouldn't get my respect if they were able bodied [1], why should I grant a person respect for an inherently vile and harmful viewpoint just because they also happen to be disabled?

Disabled people who say they either support, or at least won't stand in the way of, assisted suicide but that (from their own personal experience) they have reservations and would like to see safeguards in place to help avoid any harm or abuse to disabled people I will respect and support to the maximum extent I can.

But when someone says "I have disability X and on that basis I want your father to suffer weeks of agony because reasons", my respect for such a person goes instantly to zero and they become an enemy and not a person I can possibly sympathize with for any reason. Just because a torturer is disabled doesn't mean they get my respect.

[1] This is non-hypothetical, I have no respect for able bodied people who demand torture for the terminally ill for religious reasons and I have encountered many more such people online than I have encountered disabled people speaking against assisted suicide.
posted by sotonohito at 10:51 AM on March 5, 2016


With respect, sympathy, and compassion, sotonohito, I think you are oversimplifying the perspective of people with disabilities who are concerned about euthanasia as a possible outgrowth of death with dignity - legitimate fear for one's life and autonomy isn't at all seeking to torment the terminally ill. It is very different from having a religious belief that ethically compels busybodying into other people's end-of-life decisions.

As jesourie points out and exemplifies, people with disabilities have to make their own and their loved ones' end-of-life choices, same as able-bodied people. It's not selfish to say that it's very important to get the language right so that everyone is protected. It's not even unreasonable, much less selfish, to say that it's best to stay with the status quo if the law as written has a potential genocide-shaped hole in it.
posted by gingerest at 9:22 PM on March 5, 2016 [5 favorites]


Regarding the ways that medical professionals are taught to think about disability, and how that perspective may affect their views on assisted suicide, I found this piece, by a friend of mine who is a doctor with disabilities, very powerful.

For what it's worth, I'm a nursing student with a background in academic disability studies and I see several of the problems she mentions all the time. The ways that disability community members describe their own experiences are often completely at odds with medical descriptions in terms of metrics like "quality of life."
posted by ActionPopulated at 7:46 AM on March 6, 2016 [1 favorite]


Mod note: Comment deleted. sotonhito, you've stated your point of view several times and positions seem pretty hardened. You're obviously not going to move and I don't think your rhetoric is convincing anybody else, partly because, despite demanding they answer you, you then refuse to engage with their points of view (and say you will "steamroll" them in any case, which does not suggest you're discussing in good faith). When you get to the point where you are accusing other mefites engaging in good faith of being "evil" or your "bitter enemies," you've gone too far. I understand this is a highly emotional topic for you, and one of great moral import, but it's time for you to bow out of this thread; I don't think anything productive can come from further engagement.
posted by Eyebrows McGee (staff) at 8:01 AM on March 6, 2016


I've recently been through a terrible scenario during which I lost my brother. He suffered a cardiac arrest and was resuscitated, unfortunately into what would be called a persistent vegetative state, although the terminology of that clearly needs to change

The consultant told me "I know what I would prefer to do in this situation, but we don't live in a civilised country." So instead we had to watch as feeding was withdrawn and he wasted away over a horrible 6 weeks. It's only now that we can get on with the grim but necessary task of burying him.

What I've learnt from this is:
- I definitely considered ending his life several times but couldn't face it. Ironically I'd made my brother promise he'd do that for me if I ended up in that state and was so glad he hadn't made me do the same. Having sat with a pillow for a long time I will definitely never make anyone else make that promise. There has to be a more civilised option.
- Secondly, in the right to die debate, PVS needs to be treated as a very distinct set of circumstances. When there is no hope whatsoever of a person regaining consciousness we need to recognise that their life has already ended.

So many people have told me similar stories lately. It needs to stop. But he was wrong about this not being a civilised country- we have the NHS.
posted by welovelife at 1:16 PM on March 6, 2016 [4 favorites]


Sorry, didn't mean to be an ass.
posted by sotonohito at 2:24 PM on March 6, 2016


Above, I mentioned a conversation with my gran and doctors, and it was exactly about the situation your brother was in: the doctors explained that she might end up as a vegetable if things went wrong, and asked her what she wanted in that situation. She chose to go for life, and she was lucky, or the doctors were good.
But at work I witnessed a similar situation, and a man clearly said no, he would rather die and he was wise to do so.

This dilemma is a really good example of what I am failing at saying: a lot of the agony dying people experience is caused by the treatments we choose to give them even though they are obviously dying. This is what Atul Gawande's book is about.

We keep dying people alive, and then we starve them to death. We give cancer-patients treatments that we know won't work, and the side effects are horrible pains, constipation, burning sores, depression and much more. I remember taking my dad to chemo, and him being so ill he couldn't even be in the clinic. He couldn't sit in a chair. Still, the doctors insisted it would save him. Which it didn't.

We let people die in hospitals, where staff are trained to keep people alive, and therefore our loved ones spend their last hours in respirators, on therapies and even during surgery which is meaningless. I've seen nurses refuse to administer opiates, because it might shorten the life of people who were obviously in the proces of dying. I've seen doctors convincing vulnerable patients to try therapies which where both painful and useless.

This is such a complex problem. There is no simple solution. But part of the solution is all of us knowing more about death, and the healthcare system being a lot more aware about death.
posted by mumimor at 2:29 PM on March 6, 2016 [1 favorite]


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