posted
My head is still spinning from reading and rereading this. Howard Brody is a pretty prominent figure in the bioethics community and has a long history of really having contempt for the disability community's perspective on so-called "right to die" issues. The first protest Not Dead Yet did was at a bioethics conference Brody was hosting. He didn't like us one bit - not that we were trying to be liked, just heard. I doubt he likes anyone associated with my group any more than he used to, since no one from NDY was invited to present at the conference he mentions.
Still, though, this is huge.
(Sara, if you're reading this, could you make sure Greg Pence sees it?)
quote:In an earlier column, I made a proposal that grew out of a conference we held at MSU about disability concerns and bioethics. I suggested that the State of Michigan needed to apologize for the many citizens who were involuntarily sterilized for eugenic reasons in state institutions between the 1930s and 1970s.
At the end of that column I hinted that I had my own personal apology to offer, as a result of the discussions at that conference. Here goes.
I wish now to apologize publicly for the teaching and writing I did around some cases that involved persons with disabilities who requested the “right to die” by refusing life-sustaining therapy. There were a number of such cases, most notably that of Elizabeth Bouvia in Riverside, CA, a sufferer from cerebral palsy who wished to starve herself to death. But to bring things home again to Michigan, I will use as an example the case of David Rivlin.
Rivlin was paralyzed in all four limbs and could not breathe on his own without the assistance of a ventilator. In the 1980s he was living in a nursing home near Detroit. He appealed to a county court to be allowed to die by having the ventilator disconnected. A psychiatrist judged him to be mentally competent to make such decisions. In keeping with the relatively new legal doctrine that competent patients had the right to refuse life-prolonging medical therapy, the judge ordered that Rivlin’s wishes could be carried out.
It was somewhat exciting for those of us working on bioethics in Michigan to have our own court decision, to follow in the footsteps of more famous decisions like the Quinlan ruling in New Jersey. Many physicians in that day refused to accept the patient’s right to refuse therapy and continued to insist that they could impose treatment on unwilling, dying patients, because doing anything else was tantamount to killing. I thought myself a champion of patient’s rights by agreeing with the decision of the county court in Rivlin’s case.
At the time of the Rivlin ruling, a few advocates for persons with disabilities complained about the decision, because Rivlin had never really talked with them to learn what other possibilities besides death and staying in a nursing home existed for a quadriplegic person on a ventilator. At the time I wondered who those busybodies thought they were. Rivlin had not asked for their help. Why were they sticking their noses into his very private and personal decision?
I am now embarrassed to realize how limited was the basis on which I made my decisions about David Rivlin. In hindsight, it has been very well documented that there was no medical need for Rivlin to be effectively incarcerated in a nursing home. If Rivlin had been given access to a reasonable amount of community resources, of the sort that other persons with disabilities were making use of at the time, he could have been moved out of the nursing home and probably could have had his own apartment. He could have been much more able to see friends, get outside a bit, and generally have a much more interesting and stimulating life. The reasons he gave for wanting to die were precisely how boring and meaningless life was for him.
This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.
There’s every reason to believe in hindsight that David Rivlin died unnecessarily, and that we who claimed to care about his “rights” should have been demanding that services be made available for him rather than that he be allowed to die. As one who argued the wrong thing back then, I apologize for my shortsightedness.
------------------------------ Howard Brody, M.D., is a University Distinguished Professor in the College of Human Medicine at MSU and a family-practice physician.
Once in awhile, you get proof that your work does make a difference. Today is one of those days.
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If Brody doesn't retreat from this position, it will send some shock waves through the disabilitiy community. Brody has been a staunch defender of cases like David Rivlin's. While he doesn't have Peter Singer's prominence, Brody's not a lightweight, by any means.
Right now, this is making the rounds through various disability and bioethics email lists.
And, no, I am not the only one forwarding it around. The first message I received containing the article was cc'd to about 30 people in the Chicago community - some in the disability community and others in the bioethics community.
Brody has said his defense of Rivlin's "RTD" was simplistic and shortsighted - a critique that we could suppose would extend to his colleagues that share the views he promoted for so many years.
Further, he said that we - in the disability community - had it right all along.
Part of my job, though, is to make sure that as many people as possible know about this. I just forwarded it to a colleague at the University of Vermont - he's spearheading an informational protest against Peter Singer and has a web page up to educate people on the issues. This belongs on that page.
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posted
Just want to make a quick clarification - I'm just a point man for the disability community's opposition to simplistic "better dead than disabled" arguments. Not Dead Yet is the one disability rights organization that focusses on these issues alone, but about a dozen other national disability groups have taken formal positions against legalized assisted suicide and euthanasia. Even more organizations have taken positions against the liberalization of laws making it easier to end the lives of people under guardianship through withholding of things like food and water (via tube) or antibiotics.
quote:This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.
This gave me chills to read. How utterly awesome that he can see this!
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On one hand, it's less than awesome that it took Brody 15 years to have his epiphany. (Thanks to the advocacy of his "friends," Rivlin died in 1989)
OTOH, with so much of his professional identity and reputation invested in Rivlin personally and the issue in general, it IS awesome.
It's like a prosecutor coming forward and saying that someone they'd prosecuted just might have been innocent - but saying it after the person had been executed. It's really hard to back off of a position and say that maybe you had a hand in what turned out to be - at the least - a "wrongful death."
posted
What absolutely, unequivocally good news. How clear, how direct, how spot on.
Stephen, I will make sure Pence sees it eventually. I think he's caught up with something right now, but when things settle down I'll send him a link.
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posted
I wish we had more people in popular view leading "normal" lives with disabilities. This is great (don't get me wrong!), but I'd cynically bet it doesn't get much play outside those already involved in the debate. We need both this and more commonplace examples of how life goes on in the entertainment area.
("Life Goes On" was such an awesome show on its own, but I think it also likely changed the reaction of some families who later had children with Down syndrome and other develomental disabilities.)
If Rivlin had had the images and stories of people with partial paralysis who were able to access all the appropriate resources, the alternatives might have been clearer to him from the start of his need. Who knows, maybe he would have become a "problem patient" ( ) and demanded it.
Both, dagummit. More more more!
[ October 06, 2004, 02:01 PM: Message edited by: Sara Sasse ]
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quote:If Rivlin had had the images and stories of people with partial paralysis who were able to access all the appropriate resources, the alternatives might have been clearer to him from the start of his need. Who knows, maybe he would have become a "problem patient" ( smilie ) and demanded it.
Well, that doesn't always help, unfortunately. Another colleague of mine in Iowa was trying to help a woman who refused to be discharged to a nursing home from a hospital (there was no medical reason for the nursing home). Even though she had been in an apartment before, this was apparently a novel idea to the hospital staff. She wouldn't budge. Their solution was to go to court and and get a guardian appointed who then did exactly what the hospital wanted. (Sorry to burst the bubble of those who hold onto the fantasy that social workers and other professionals don't do things like this - it happens.)
There was never really a question of incompetence with this woman - she was a problem, though. And they decided to work ON her rather than WITH her.
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I was taking it for granted that while being a problem patient is no guarantee of good care, it's pretty much a prerequisite for getting things done.
What have you found successful strategies to be? Does it help more to be compliant or a squeaky wheel? (Does it vary from situation to situation? Any rules of thumb?)
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posted
This is amazing - it's worth far more than winning a court battle or convincing people who've not taken a stand one way or the other.
It can't help but spark real discussion in the bioethics community, too.
On a side note, the alternatives available to someone in that situation MUST be considered part of informed consent to discontinue life-sustaining treatment. Someone who wishes to die based on an ill-infomred understanding of what the rest of his life will be like is not making an informed decision.
If any decision should require proof that all the alternatives have been considered, this one should.
And of course, work still needs doing to ensure that the alternatives are available.
posted
Don't throw a life away if it is fixable... That seems like something that should have always been obvious. Why didn't they try changing environments before moving to suicide as a strategy?
Then again, one case doesn't necessarily prove there aren't other cases in which extreme unhappiness and assisted suicide are the only options.
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quote:What have you found successful strategies to be? Does it help more to be compliant or a squeaky wheel? (Does it vary from situation to situation? Any rules of thumb?)
No, there aren't really. A lot of it has to do with the luck of the draw. Obviously, if you're lucky enough to have supportive friends and family, it's much harder for the system to ride roughshod over you - the "path of least resistance" can become actually acquiescing to your demands. And getting rid of you and all your pesky friends.
There are certain personality types that seem to do OK - people with engaging personalities who are well-liked by staff, but these are also highly adaptable people who probably aren't sitting around moaning either about wanting to die or about moving out.
See, that's just one aspect of human nature that seems to get dropped out of these debates. The inherent adaptability of humans to all kinds of living situations. Even though a large percentage of people say they would rather die than go into a nursing home (I forget the percentage, but it was a survey a few years ago.), very few people are actually moved to suicide when they actually end up in one. They adapt somehow.
One of the little gems buried in that article "Blink and You Live" that I posted a few months ago was a survey of 300 people with "locked-in syndrome" in France. Out of that group, only 3 wanted to die. But it's the THREE that get stories written about them, movies made, and books written - not the other 270. As a result, the public gets no sense of context, and I'm not sure they even want it.
Mainstream bioethics doesn't seem to have much interest in it, either. (yeah, I know, them's fighting words)
I'll try to post later today, but this has turned into my "Singer" week - I have to give some edits to a disability magazine editor who interviewed both Singer and me. I have commentary in the article on him, which point out the places he's sloppy and/or dishonest.
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quote:Then again, one case doesn't necessarily prove there aren't other cases in which extreme unhappiness and assisted suicide are the only options.
True - but it's no more proveable or disproveable for people like David Rivlin than it is for nondisabled people who want to kill themselves. And, unless you're talking about access to specific means, anyone can commit suicide, if only by refusing to eat.
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posted
Actually, if you're not capable of pulling out a G-tube, you can't stop eating and drinking, either.
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quote:Mainstream bioethics doesn't seem to have much interest in it, either. (yeah, I know, them's fighting words)
No, I'd agree with you there. Mainstream bioethics has a pretty shoddy history. But there's a reason why those that disagree with the party line aren't heard from as often. I'd just hate to see them tarred with the same brush, and -- when you refer to the "mainstream" as opposed to all -- you refrain from that nicely! Posts: 2919 | Registered: Aug 2004
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posted
Not that I'm arguing with the starting post of this thread. It is good news. I just don't see a conflict between 'the right to die', the right to have control over what kind of care you recieve, and the right to know everything you need to know about your condition. I completely agree that Rivlin's death was unnecessary.
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And on an only tangentially related note, it is very odd to keep seeing what looks-almost-like-my-name (since it shares the same three first letters, as very few names do) in sentences dealing with death and wanting to die.
posted
Yeah, Storm, but then all you have to do is request to have it removed. That's really all it takes now.
Unless you're talking about people who have had severe cognitive losses. Then "suicide" isn't really an option at all, since it relies on volition.
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quote:Actually, if you're not capable of pulling out a G-tube, you can't stop eating and drinking, either.
Sara, are G-tubes used on a long-term basis for non-comatose patients?
I have to walk a very fine line on this issue. On the one hand, I'm absolutely opposed to suicide, direct or indirect, and believe the state has a valid role in preventing it. On the other hand, I believe that some life-prolonging treatments should morally be refused. And I know there are other people who would reject for moral reasons treatments other than the ones I think should be refused. That being the case, the only safe legal policy I can think of is to allow people to refuse life-sustaining treatment if they wish. But, since it's so drastic, the request must be clear and there must be a showing of competence and full information.
I also don't have a moral problem with "giving in" to a terminal disease. But as Stephen so often points out, the distinction between a chronic condition and a terminal disease is almost never made in popular accounts of the issue. It doesn't seem to be dealt with much by the right to die advocates, either.
quote:No, I'd agree with you there. Mainstream bioethics has a pretty shoddy history. But there's a reason why those that disagree with the party line aren't heard from as often. I'd just hate to see them tarred with the same brush, and -- when you refer to the "mainstream" as opposed to all -- you refrain from that nicely!
Well, I'd be interested in knowing who these people are and why you don't think they're heard from.
The reason I'd really love Pence to see this is that it goes farther than he himself was willing to go when he explored the issue. Even though he grappled with what the disability community had to say, he got detoured talking about "rescue" - whereas Brody comes to the realization that this isn't "rescue" - the community care isn't any more expensive than the nursing home and this should have been something offered all along.
And, keeping in with the "context" element, the metaphor I try to encourage people to use when talking about Singer is "ugly tip of the iceberg" so as to avoid overdemonizing him and also legitimize calling attention to him specifically.
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posted
Stephen, when a newspaper wants a soundbite, or when a university wants to hold a debate, they don't call people who aren't big names. The big names are people like Art Caplan, who make a lot of money doing this sort of thing. Publishing, lectures, etc. And the more you publish and lecture, the more influence you have on what makes it into the journals and what the media says in its soundbites. [Not unexpectedly, work that challenges the stance of the big names is not well-supported.]
But I think people like Tom Koch from the Hospital for Sick Children in Toronto, Canada, do better work. It is both more nuanced and more thorough, but that makes for bad soundbites. He also criticizes the big names in the field.
There are a lot of small people struggling to do good work who don't make fortunes off of bioethics. They are leaving a paper trail, though, and they are making slow but steady contributions. Definitely not the mainstream representatives, though.
In Koch's 2001 article in the Journal of Medical Ethics entitled "Disability and difference: balancing social and physical constructions," he gave a balanced analysis of the medical model of disability as versus the social construction model, and he stated the case for a non-medical model quite well (I think).
quote:In a broader frame, the physical disability/social difference debate reflects a growing dialogue about definitions of humanness and personhood. The medical model assumes (as do most bioethicists) that autonomy and self sufficiency are defining elements of the "normal" human condition. It is the standard against which the lives of those with limiting conditions are typically measured. People whose physical or cognitive makeups limit autonomy and self sufficiency are assumed to face "a limitation within the individual"[6,11] that prevents them from enjoying pleasures or undertaking tasks available to the average individual. Those lives are assumed to be less happy, their life quality therefore less full, and their continuation, as a consequence, less desirable.
Social difference theorists insist that a physically dependent or interdependent life is no less full and viable than one that is autonomous and independent. Differences that may exist are inherently trivial except to the extent they reflect social prejudice or indifference. More fundamentally, some argue the assumption of independence and self sufficiency as a norm is itself reflective of prejudice rather than reality. ... An either/or paradigm in which one is normal or disabled is inadequate to conceptualise the diversity of ability within the greater population, and across the individual life course. ... The traditional, physical definition of disability used in the clinical model typically refers to a necessarily limited, restricted state in which the subject cannot independently undertake specific tasks or actions. ... Here is the crux of the matter: does physical difference necessarily result in harm; does it necessarily diminish the resulting life?
Clearly there are limitations to the opportunities the average person enjoys. The deaf do not enjoy music; the blind cannot appreciate visual arts. A tetraplegic will never know the pleasure of the long distance runner, pounding along in the endorphin-induced runner's high for miles. The validity of the apparently obvious assumption that the person of difference "has a strong rational preference not to be in such condition" is, as I will show, unclear.[14] Nor is it obvious whether such differences—whatever the preference of the persons involved—are inherently "harmful".
Unlike other activists who wholly reject the medical, clinical model in favour of a purely social construction, I do not dispute the reality of physical difference. As a person with moderate sight impairments I cannot fly an airplane; cannot safely drive an automobile. My visual limits do not permit me to play baseball, hockey, tennis, etc. I am thus literally dis-abled in relation to those activities. ... [But] The choices resulting from accommodations to my visual restrictions are so integral to the pattern of my life—so "embedded," to use Stephen G Post's phrase [16]—that I cannot imagine being without them. Were my partner currently pregnant and given the choice of a fetus with my genetic pattern or one that was "normal" I would likely choose the former. Like those in the deaf community who perceive their difference as so integral to their being as to be "necessary," mine has been not so much challenged as channelled by my physical reality. The life resulting from my modest differences more than compensates for the limits inherent in my physiology. To argue otherwise would be to deny the life I've lived.
While I have argued personally here, there is an evolving literature that suggests my experience is not uncommon. Many with genetically inherited conditions view the potential of genetic culling, for example, with mixed emotions. Raised within families—and sometimes communities—where their condition is common, the potential for its future elimination entails as well the end of a link critical to their associative world. This is true of both those with chronic non-progressive conditions such as colour blindness (achromatopia)17 and those with chronic-progressive diseases such as Huntington's. While some researchers have reported an increase risk of suicide among those testing positive for the Huntington's gene, a comprehensive study of the reaction to genetic testing by persons in Huntington's families revealed a sense of loss among some who tested negative for the mutation associated with Huntington's disease.18 For some, their lives had been built upon an expectation of the disease's onset and its absence required a new perspective outside that of the historical community in which they had matured.
More generally, social advocates critical of the medical model argue that many persons with physical differences describe unexpected areas of accommodation that they insist are more than compensatory.[19] Almost universally, these include an increased richness in interpersonal relations and an acceptance of physical dependence as an acceptable quality of human intercourse. This literature acknowledges the physical limits but finds social and interpersonal values in the resulting life. Thus what disability protagonists perceive as, in Harris's words, "inherently harmful", may not be for the subject him- or her-self inherently anything. It becomes a fact of one's history—an aspect of one's physical embeddedness—and accepted or rejected precisely as one may reject or accept any life change. From this perspective, Harris's definition of a disabling and thus necessarily harmful condition becomes suspect.
[ October 06, 2004, 04:54 PM: Message edited by: Sara Sasse ]
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Two attributes that are directly related to the usefulness and correctness of any model in practice, and inversely related to the usefulness of any model in the press.
posted
Yep. I haven't found any bioethicist with whom I would not quibble about certain things, but I have found some who were doing good, careful work. They tend to be fringe people, though, as the support is not there.
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posted
Koch works in the field of gerentology and has been fundamental in pushing the exploration of narratives. "Find out what this person's life is like by asking them."
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posted
I left out the actual point of my post above, which was that nuance and thoroughness are not well reported in any field, not just bioethics.
I have little firsthand knowledge of the works of bioethicists. I do remember reading an article that a friend getting a masters with a heavy emphasis on bioethics had and being appalled by the casual ranking of human life, but I assumed it was an extreme view being studied in the course.
The only other exposure I've had is in the media and here on Hatrack from you and Stephen.
quote:A few? I'd be surprised if that wasn't a marked understatement.
No, it's probably pretty accurate. I certainly wasn't involved in anything back then. There were a relative handful of disability advocates and activists criticizing these cases - Diane was one of them. They were playing by the rules then. Submitting proposals to conferences that were turned down. Publishing papers that were promptly marginalized. Generally ignored and dismissed.
There's a reason Not Dead Yet with our "in your face" tactics was formed - "playing nice" had gotten us little more (as a community) than pats on the head.
The career of Kevorkian in the 1990s also made a difference. As his killing spree enjoyed support in the general public, it increased the number of people in the disability community who saw aspects of this movement as a threat to much we had worked for.
quote:Sara, are G-tubes used on a long-term basis for non-comatose patients?
I'm not Sara, but I can answer this one (I didn't see an answer above)...
Yep. Several of the people I lived with used g-tubes. One man had cerebral palsy and wasn't getting enough nutrition the normal way, one lady had leukodystrophy and was aspirating her food, and there were a couple other folks who I knew less well. None of them were comatose, all were awake and aware of their surroundings, and healthy. And while being trained to use a g-tube, all the instruction booklets showed otherwise able-bodied people using the tube independantly.
I honestly can't say how common it is, but it certainly does happen.
posted
A G-tube sounds like an improvement over (or enhancement to) the normal way of eating. Less time out of the day, and I am guessing you get exactly the nutrients you need. As long as I could still eat Thanksgiving dinner the normal way.
Stephen, how would you recommend this issue be raised on a college campus, or a geographically homogenous community in general?
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quote:Stephen, how would you recommend this issue be raised on a college campus, or a geographically homogenous community in general?
One way might be to send this to the student newspaper, saying you think it's an important article, and suggesting they request permission to reprint.
Another thing would be to make sure any bioethics professors on campus somehow read this - send via email. Print and slip under the door.
Tomorrow, maybe I'll dig out an article Brody wrote after our protest in 1996 at his bioethics conference. Some excerpts would give you a real sense of the change, which seems profound.
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posted
Thanks, but I was really asking a more general question about disability advocacy in the realm of ending the lives of disabled citizens. Stuff like quality of life, the need for information regarding the alternatives, etc. Larger than Brody's apology, although not every disability issue. (Life support cut-off but not ramps instead of stairs, if you get me.)
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posted
I showed the article to a friend of mine, who also lived at l'Arche. I just thought I'd pass on her response: "One heart at a time."
EDIT: And she may have convinced me to try and get an article or a column in the campus paper to talk about stuff like this. I'm seriously considering it, and I'm terrified.
quote: EDIT: And she may have convinced me to try and get an article or a column in the campus paper to talk about stuff like this. I'm seriously considering it, and I'm terrified.
Eaquae,
I agree with your friend - on her advice to you, that is. (Unfortunately, the pace of "changing hearts" for people like Singer is a lot faster than one at a time.)
You've obviously thought a lot about these issues and care about them deeply. And you express yourself well.
Can't speak for everyone, but I don't get terrified anymore - knotted up stomach, twitchy, surly, and anxious - but not terrified anymore.
More later... I really can't write about this stuff at night or I'll never get to sleep. And sleeping in to make up for it isn't an option.
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quote:An either/or paradigm in which one is normal or disabled is inadequate to conceptualise the diversity of ability within the greater population, and across the individual life course.
This is great, and I think it represents the lived reality of most of the people I know. There are staunch social construction theorists out there, but I'm never absolutely sure if they hold the line out of sincerity or to define the outer edge of opposition to the medical model, which still dominates the view of disability in most arenas.
I've read a couple of Koch's op-eds -- they've been a breath of fresh air in the Canadian press on bioethics topics. I am sorry I am not familiar with more of his work.
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