posted
Is it just me, or is the disability rights side of things getting a heck of a lot more airtime than usual for this sort of issue? While it's encouraging, it must be a horrible amount of work for you, Stephen. Oi.
And thanks, CT, for saying more clearly what I tried to express in my first post here, about "mental age."
It's driving me nuts that people are still thinking of life in a community home or care home as being a fate worse than mutilation. I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!
(Edit: And I'm wondering where my own voice fits into this, much like CT.)
quote:Think about what life is like for Ashley's family, and stop making arbitrary judgements of them based on fantasy driven pipe dreams possibility and moral high roads.
I'd appreciate it if you could point out the "fantasy" element in any of the posts that have presented fleshed out arguments as to why this treatment is wrong.
None of those that I read (or wrote) depend on the chance of a cure for their conclusion, although the possibility was brought up by some people.
quote:Before you curse her parents for defiling her life, walk a mile in their shoes, and feel the love they have for their daughter.
I find your rejection of the possibility that people opposing this have walked a mile in their shoes or felt the love these parents have for their daughter to be puzzling. Perhaps you could cite some evidence that, for example, the two people with actual experience caring for disabled adults can't appreciate what's at stake here.
quote:I'm assuming that they've talked about the risks with the doctors, and feel they are acceptable considering her condition.
This is the problem: the people making the decision, in general, systematically fail at objectively considering her condition. In fact, they generally reject the input of those with first-hand experience in living with a disabling condition when forming the standards that give are used in making these decisions.*
In your own post, you've emphasized the difficulty of caring for large disabled people and the perception society has of them as part of your justification for such treatment. The doctors are weighing incredibly serious risks as well as actual organ removal against, in part, ease of care.
*And yes, I'm aware Ashley couldn't actually give input here. The systematic misunderstanding of how the disabled view their own life is presented as evidence of the larger failing to fully consider the "condition."
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quote:Originally posted by Eaquae Legit: It's driving me nuts that people are still thinking of life in a community home or care home as being a fate worse than mutilation. I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!
(Edit: And I'm wondering where my own voice fits into this, much like CT.)
EL, you have been often on my mind since your post with a (brief, modest) plea to have you and your life's work taken into account. I was wanting to get a sense of how I fit with what sndrake wants out of Hatrack, but when I read your post, it occurred to me that this might be a larger question to address.
We probably could use a separate thread on this, too, but I wouldn't want that to supplant your concerns raised here. I also don't want to be speaking for you, but I do think I understand where you are coming from.
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EL, I want to thank you for your posts, expecially the first one. (I think it was the first anyway, haven't gone back to check.) They've really helped me clarify some things that were just nagging at the back of my mind about this.
Particulary that if the parents had not gone this route, Ashley would not have to have been left to lie in her room staring at the TV all day and be left out of family activities. They would have had to trade her modified baby stroller for a specialized wheelchair, and made their house handicap accessible, which would have required a lot of work and money, but it would have been possible. It aslo made me wonder if insurance covers the medical solution but not the rennovations that would have been needed to the house.
I'm sure the parents did what they truly believe was best for their daughter, but I'm also sure that at least part of that was because they were overwhelmed with the idea of caring for her as a full-sized adult. The hospital should have put them in touch with people who are doing a good job of caring for adults in similar situations so they could see that it can be done.
I also think part of the unconscious motivation was what was just identified -- society is more accepting of cute disabled children than disabled adults. When they get big they're not so "cute." To which I agree with EL that it's society that needs to grow up.
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I just went back to your first post, EL. It was probably still percolating in the back of my mind when the topic of adaptive skills came up again in another area of my life, which was probably why I associated it with this topic. Thanks.
I'll quote you again here, because it does bear repeating. I was thinking of adaptive skills, which may not be as relevant to Ashley's circumstances, but you elaborate much further.
quote:3. She's not a three-month-old. Her mental capacity should not be used as a marker for her physical and experiential age. ... Whether she lacks the capacity to understand indignity is irrelevant. She is a human being and must enjoy the exact same rights and dignity that "normal" people do. As I've said before, she is not three months old. She's 9. Someday, she will be 15. 30. She will still not be three months old. She will have the mind of a 30 year old who has the capacity of a three month old. That may seem like a ridiculous thing to say, but it's true. There is nothing grotesque about a 30 year old having a 30 year old's body. It is an indignity to her to insist that she must remain a child.
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Edited to add:
quote:Originally posted by dkw: I also think part of the unconscious motivation was what was just identified -- society is more accepting of cute disabled children than disabled adults. When they get big they're not so "cute." To which I agree with EL that it's society that needs to grow up.
It seems odd and scary to me to contemplate a world where the accepted norm for people with severe cognitive dysfunction is that they look childlike. How very, very odd and troubling. What do we do about people who lose cognitive functioning later in life, after they are already typical-sized (through a motor vehicle crash, or degenerative disease, or something else)?
Wow. People with later-acquired cognitive deficit would become even harder for others to accept as just other people, I think. Sometimes it seems like there is always going to be a push to view different as bad. When we try to just make people less different, that drive just (I think) gets stronger. That's bad for everybody, even the temporarily-less-identifiably-different ones, like most of us posting here.
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Edited again to clarify: Not to imply that it's only bad if it's bad for other people. It can (and is, IMO) bad in itself.
I find it more useful in general to think of people in general as temporarily-able-bodied than not-disabled, and not just for PC reasons. It seems to be a more accurate portrayal of the world. On the other hand, saying "this is bad for everybody" may be taken to indicate that if it wasn't bad for everybody, then it wouldn't matter. I don't want to leave that impression, either.
Just ... wow. If the going notion were that "if you're going to be different, then you'd better be childlike," I'd find it additionally horrifying in all sorts of ways. It would make an awesome and scary sci-fi novel, though.
posted
I think it's absolutely vicious to suggest that the parents wanted to keep their daughter looking like a child so she'd be "cute", rather than letting her grow into an adult, when she would no longer be "cute". From everything I have read about these parents, they are trying to maximize the length of time for which they will be able to give Ashley the best possible care.
It is really, really, really hard to care for a family member with disabilities this severe. It's an incredible drain on the family, and the more drained the family becomes, the less good the care gets. I have been watching it happen with my aunt for years. Whether or not we agree with the parents' decision, I find it awfully hard to believe that their motivation is wrong.
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Fyfe, I'm myself working under the assumption that the parents are trying to do what's best for their daughter and have only good intentions. I think EL and dkw are, too, though they can speak for themselves to reclarify if not.
Our culture as a whole does seem to have a problem with this issue, though, and I think it is possible to speak to the culture without marking out the individual family here.
I am sympathetic to the parents' dilemma in ways I haven't yet discussed here. I have a family member with severe autism who is quite tall, quite heavy, and quite strong, and at times, he is quite violent. He has hospitalized a caregiver in the family and cannot be taken care of at home anymore. This is a different case with different issues than Ashley's, but when I read the first link, all those long family discussions came back to mind. For me, it was a matter of remembering how many difficult and painful details lie behind the simple story of dealing with unexpected circumstances like this. I don't think anyone in my family would have suggested making this family member child-sized for life, even knowing what was ahead, but nobody involved could really have anticipated everything that lay ahead. From the outside, you just can't.
Still, I have no doubt that this family member would have been treated differently in public places if he were child-sized than as he is being 6'8, 280 lbs. That part is there, too, and I think it should and can be discussed.
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quote: There would be little problem in them getting married as long as there wouldn't be any chances of children. Unfortunately, since neither of them can be "sterilized" there is no safe way to absolutely ensure they could have sex and not produce a child. You may judge me and my parents and the girls parents for thinking that a child is totally out of the question, but since you don't know these two people, your judgements are flawed. There is almost no chance that a child from their union would be mentally healthy. There is absolutely no chance they could keep the child and care for it. Her parents are old, and mine are tired, they cannot raise another child, espescially not a handicapped one, and it is very very difficult to find adoption placements for retarded children. Thus, because it would be wrong to allow a child into existance, two disabled adults are not allowed to enjoy their lives to the fullest potential because of a law designed to "protect" their dignity.
My heart goes out to you and your family, DDDyash. I hope everyone finds a way to get what they want. I know exactly what you are going through.
quote: The hospital should have put them in touch with people who are doing a good job of caring for adults in similar situations so they could see that it can be done.
The central, underlying issue of the OT for me is that there is a fundamental problem with funding for LTC. While none of the articles that I've read have said that this was an issue for the family, I know it is for many people who would like to get LTC for their loved ones.
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quote: I know it is for many people who would like to get LTC for their loved ones.
Very true.
It can also be very very difficult to get good respite care. There's only so much funding and so many spots and it can take a long time to get in with a facility that offers such or to get an in-home worker who treats the clients well.
I know there are decent care givers out there - various extended family members have been treated very well by some - but there don't seem to be enough.
But more than that, there also - in British Columbia and Alberta, at least, although I have no reason to believe it's not the same everywhere else - a serious lack of information available to those who need care givers, whether for long term, short term, or respite care. Even when they're paid for through the provincial medical plans, often enough, patients & their families aren't aware of the options. They're not always told about possible funding, programs, whatever.
It can take a lot of time - and a lot of paperwork and chasing people down - to find out what's available and to get it implemented, and for families who are already overburdened with caring for a disabled family member, that can become an impossible chore.
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posted
Since I figure there are some people who might still be curious, I wanted to point folks to what is unquestionably the best article on the "Ashley Treatment" that I have seen. Salon occasionally publishes some first-rate investigative reporting and this was one of those times (the piece in AMA Medical News was a "fluff" piece in comparison). The article includes interviews with staff at the Seattle Hospital where this procedure was approved and with other professionals from around the country. Here's the link and a couple of paragraphs: Behind the Pillow Angel
quote:Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."
The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.
This part of the article echoes some of the comments made in our own press release, in which we said that ethics committees could serve as "end runs" around constitutional protections.
posted
Thanks, Stephen. I hadn't realised that l'Arche had released a statement. I'm really glad to see it. If anyone else reads that article, I will say that every word in it is true. I know Beth (the author) and Karin. I lived with Karin for four months, and she is a wonderful, complex woman. It's usually her in my mind when I read about things like the "Ashley Treatment." The "what if" questions Beth raised are exactly what go through my mind.
When I get back from doing my laundry, I'm going to read through the rest of my articles. But that one really made my day.
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quote:I lived in a community where such children spend a full day in a classroom, 5 days a week. It may not come out of "health care" dollars, but there seems to be assistance available.
I have never seen a child with this level of disability in the classroom. I'm not saying that it doesn't happen-- but at some point the State of California (where I live) draws the line and considers a child "unable to learn", and medically exempt from schooling. At that point the school district does not even have to offer "quality of life" training as it does for extremely retarded children who are unable to benefit from a regular or adapted curriculum. As many Special Ed teachers I know will tell you, "We're not a babysitting service." Classrooms are divided by ability to learn and learn on different levels and at different speeds, some with special helpers-- but if they can't teach a child at least the basics of taking care of him/herself, they consider that he doesn't belong in school. Maybe it's different where you grew up, but that's what I've seen here, and what state law says, last I checked.
I am a teacher in the community I assume Bob is talking about, and I can tell you that we have kids in my school who are just babysat all day. FWIW. I don't know anything at all about whether "schooling" is mandatory (I would hope not) for such children or whether it is simply something the state offers to allow parents to hold jobs.
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posted
sndrake, I'm glad to see it was a more contested decision behind the scenes than was initially presented by the hospital. That is, indeed, very good to know.
But I also find this troubling:
quote:In early 2004, at age 6 and a half, she started to grow pubic hair, develop breast buds and enter a growth spurt. Her parents feared that if she continued to grow at this rate she would become too large to care for in the home.
If that is truly what the parents are saying, then they are completely misunderstanding the medical aspect of this. Early puberty means smaller adult size, and this puberty would have been early enough to constitute a medical disorder. Hmmm. (?)
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Edited to add: Ah, this was noticed by others, too.
quote:What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland.[emphasis added]
quote:sndrake, I'm glad to see it was a more contested decision behind the scenes than was initially presented by the hospital. That is, indeed, very good to know.
I'm not heartened by this at all.
I look at this passage, for example:
quote:"There weren't easy answers here," Diekema said. "People didn't agree at the beginning what to do. But we heard arguments and debated and discussed and ultimately pretty much reached agreement to let the parents have these things done. Everybody left the room with some reservations because there are uncertainties. But nobody left the room feeling like we were making a big mistake. We thought the benefits were more likely to occur than the potential for harm. I think that even the most reluctant person in the room felt that this was at least a draw."
Further, Diekema, the committee chair, says that there was no vote. How was "consensus" achieved? On what basis does Diekema feel confident that he knew how people felt?
To me, this has some of the classic signs of "groupthink"
quote:Groupthink is a type of thought exhibited by group members who try to minimize conflict and reach consensus without critically testing, analyzing, and evaluating ideas. Groupthink may cause groups to make hasty, irrational decisions, where individual doubts are set aside, for fear of upsetting the group’s balance. The term is usually used as a derogatory term after the results of a bad decision.
Symptoms of Groupthink:
quote:In order to make groupthink testable, Irving Janis devised eight symptoms that are indicative of groupthink (197).
1. A feeling of invulnerability creates excessive optimism and encourages risk taking.
2. Discounting warnings that might challenge assumptions.
3. An unquestioned belief in the group’s morality, causing members to ignore the consequences of their actions.
4. Stereotyped views of enemy leaders.
5. Pressure to conform against members of the group who disagree.
6. Shutting down of ideas that deviate from the apparent group consensus.
7. An illusion of unanimity with regards to going along with the group.
8. Mindguards- self-appointed members who shield the group from dissenting opinions.
To me, it looks like numbers 1, 2, 3, 5 & 6 could all have been at work in this committee. And, given the lack of training and standards reported for ethics committees, there's every reason to think that this committee is far from the only one vulnerable.
Given that ethics committees make life and death decisions - and in this case made a decision almost as far-reaching as a precedent-setting court case - I think that the role of these committees need to be examined and whose needs they really serve.
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posted
I am just glad that some physicians raised objections at all. I know this is like being thankful that your head was cut off rather than that you were boiled alive in oil, but I was starting to think that the pack of physicians involved were complete idiots. Partial idiocy may not make much difference to Ashley, but I find it less discouraging (amongst many possible scenarios of discouraging).
I am still troubled by the bizzarely backwards interpretation of endocrinology attributed to the parents. Bad reporting or just foggy understanding on the parents' part? Either way, if she really was going into puberty at that time, then why the heck were they arguing to induce puberty? What the heck?
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quote:That's right folks, on Tuesday, February 20 at 2 pm, FRIDA/ADAPT/Not Dead Yet is scheduled to meet with AMA CEO Dr. Michael Maves and AMA Board Chairman Dr. Cecil Wilson, who is in Chicago from Florida for the day. At this meeting, we will open dialogue on our demands.
More on the demands later. This is a big deal - the AMA doesn't generally bother to listen to anyone other than its own members.
Didn't take much...
*A protest outside their national office;
*A phone/fax/email campaign;
*Letters from the former director of the Rehab Institute of Chicago and disability activists' new best (cough) friend, Art Caplan;
*A small but vocal protest at the DC Advocacy conference of the AMA last weekend.
In a recent job search announcement, the AMA described itself as (if memory serves correctly) something along the lines of the "preeminent authority" on medical ethics. With an unknown number of parents clamoring to get this experimental procedure done to their own kids, the AMA can't just sit back and let things sort themselves out through ethics committees. Not if they want their claim to authority to be in any way credible.
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quote:After five weeks of protests, Chicago-area disability rights activists gained a meeting with the chairman of the American Medical Association Tuesday to discuss the much-publicized Ashley X case.
Five representatives from the disability community met with Dr. Michael Maves, CEO and Chairman of the Board of the AMA at the Chicago headquarters, to discuss the so-called "Ashley treatment," in which a 6-year-old girl was purposely made small for life.
quote:CHICAGO - The American Medical Association bowed to pressure from disabled activists and met Tuesday to hear their opposition to growth-stunting treatment performed on a severely brain-damaged girl.
The now 9-year-old girl identified only as "Ashley" had surgery in Seattle to remove her womb and breast buds, and hormones to keep her permanently child-sized - treatment some activists say amounted to mutilation.
posted
Can't honestly say, Storm. I'm not the primary water-carrier on this -- just playing support, mostly.
However, there are plenty of other types of pressure tactics that can be used over time and a lot of people across the country who would like to help with the effort.
I'm guessing there'll be some concession (originally they weren't going to meet at all which is why the AP reporter wrote her lead-in that way).
They're not stupid. They can tell that there's a lot of criticism coming from the disability community and the medical/bioethics community. Activists found ways to keep up the pressure, and the core groups are headquartered here in Chicago, which is also where the AMA is headquartered. The weather is going to get warmer, making rallies and protests easier and less hazardous to the health.
And guess where the AMA national conference is being held in June?
These things are notoriously hard to predict, but I suspect there will be some movement on the AMA side - probably as little as they figure it will take to get the heat off.
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posted
It may interest you to know that the AP news coverage of the meeting showed up on my Wii last night.
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quote:Her parents say the treatment makes Ashley more portable
*flinch* Was that word choice deliberate or unfortunate?
quote:"Most of the supportive ones are thoughtful" and show that the senders have read the family's blog. "Most of the critical ones are clearly knee-jerk one or two sentence reactions" that appear to be reactions to sensational media headlines, the parents said.
How incredibly shocking that the would see it that way.
quote:. . . said Diane Coleman of Not Dead Yet, who also attended the meeting.
posted
I'd be interested to know how many of the people who are voicing such vehement outrage about this family have actually been in the position of caring for an Ashley.
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posted
Fyfe, my problem with your question is that it depends on how a person views morality. Some people see it as greatly nuanced and situational, like in your question. Others see it as absolute. So probably half the board sees your question as irrelevant.
Besides, deciding right and wrong from an objective position is usually safer than when we're in the middle of an emotionally charged situation. Humans can rationalize anything.
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quote:Originally posted by Fyfe: I'd be interested to know how many of the people who are voicing such vehement outrage about this family have actually been in the position of caring for an Ashley.
Here's at least one:
quote:"It was definitely a victory to at least have the dialogue that we had," said Donna Harnett of the Feminist Response group, who attended the meeting.
Harnett started a blog Monday to counter Ashley parents' blog. It includes photographs of Harnett's disabled 11-year-old son, Martin, whose medical problems are similar to Ashley's.
The Harnetts want "to show other families and inform the public that there is an option available other than the 'Ashley Treatment.' That option is to let a child grow into adulthood and exist as the human being they are destined to become," the blog says.
At least one person who has posted on this thread does so professionally.
I'd be interested in how many of the people voicing support for removal of organs and stunting of growth have been disabled.
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Dagonee made a good pitch for NOT deciding that one should remain silent on moral issues simply because of a lack of direct experience. I think it's back on page 1.
I interpreted your question as asking something more along the lines of "how many people who are against this without actually having thought much about it have no direct experience with a similar situation."
Otherwise, your question would seem to leave no room for even an examination of the moral nature of the situation -- sorry, you haven't been in their shoes so your opinion doesn't matter.
In examining my own stance on this issue, I learned that the ethics review at the hospital was not unanimous, but rather a very close call. Does the family's website convey that? I didn't come away from their presentation with the impression that the decision was close at all.
I have lots of questions about why this seems to them to be the BEST solution for their daughter. What alternatives were considered? What assistance is available to them now and, more importantly, in the future (when presumably the size and weight of the girl will become increasingly important as the parents age. What do other people in this situation do? Is this a common decision or are these folks the first ones to have this particular surgery done on a dependant? Where did they get the idea in the first place? Are there medical disbenefits to the girl?
And those are the questions that don't even directly touch on the moral implications, or the rights of people who are completely dependent on caregivers.
Just because MY initial reaction to this was to be squicked out doesn't mean that I (and others) are incapable of forming an informed decision, asking intelligent questions, or engaging in an open discussion of it.
posted
Because of how difficult it is to know in advance what such a situation would be like (both ways: how many challenges it raises and how much support can and should be available), I don't fault the parents for pursuing this. I think they were afraid of the big bugaboo of Disability. But I do fault the professionals if they did not acknowledge these parental fears and then explain how they can be addressed in ways other than major surgery and high hormonal therapy.
And the parents' understanding of early puberty and what that means seems utterly abysmal. It does not give me any confidence in their understanding of other areas of prognosis or therapy outcomes.
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posted
I agree. I also think they probably have a very high cognitive barrier to seeing any downsides at this point. Basically, if they were to become convinced that they'd ultimately made the wrong choice, their lives will take on a certain nightmare aspect.
I think there's plenty here to discuss at the level of the AMA and individual hospitals' medical review boards. And that discussion need not necessarily reflect poorly on Ashley's parents. My heart goes out to them even though I believe this procedure shouldn't be performed if there are other alternatives.
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quote:I think there's plenty here to discuss at the level of the AMA and individual hospitals' medical review boards. And that discussion need not necessarily reflect poorly on Ashley's parents. My heart goes out to them even though I believe this procedure shouldn't be performed if there are other alternatives.
I am waiting for the AJOB article to come out. Once it does, I'll read it and write up an article I am already thinking through about "groupthink" and ethics committees.
I've always liked the Galbraith quote: "Never understimate the power of very stupid people in large groups."
There's a flipside: "Never understimate the capacity of a small group of smart, moral people to collectively make stupid, irrational and immoral decisions." (Drake, 2007)
I have to add that I started out with a halfway charitable attitude toward the parents, but I've pretty much turned into an "attack dog" where they are concerned, especially when people (like on a radio show yesterday) ask me what anyone has doing judging this "private" decision.
Let's get the chronology straight:
The article was published in October 2006 and received little attention in the press. Nevertheless, at least two major advocacy organizations for people with developmental disabilities submitted letters of protest to the journal.
In January, the "Ashley Treatment" became a big news story.
Why?
Because the parents published a blog - and part of the purpose of the blog was to encourage other parents to do the same thing with their own children.
So... To put things bluntly, they didn't put up a blog because people were talking about them and they wanted to get their side of it out. They published the blog because nobody was talking about it and they wanted more attention.
They are the ones who decided this should be a public and political policy debate.
I can and do question their motives in regard to their actions in regard to their advocacy.Posts: 4344 | Registered: Mar 2003
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But outside of Hatrack it seems like any criticism of the parents is out of bounds.
Makes things dicey since criticism of the procedures are also (correctly) interpreted as criticisms of the parents.
I'll be interested to see what kind of flack John Hockenberry gets from what he just posted about this (Hockenberry is a wheelchair user and was a journalist with NPR and NBC for many years). He doesn't mince words:
quote: I am not going to argue that Ashley’s parents are immoral or unjustified in what they did. I will argue that they are no longer Ashley’s parents. Regardless of their love and affection for their daughter their decision to remove her breasts and uterus and maintain her in a state of pre-puberty is not a parental decision. It is more the kind of control one might enforce on a pet to manage the relationship. It is something a farmer managing the productivity of his or her operation would naturally enforce on livestock. This would be done humanely, morally, and no-doubt with considerable tender affection and love for the subjects. There would be no outcry and no controversy, yet no one would confuse these acts of husbandry as parenthood.
***
Caregivers who are parents in the eyes of the law have the option to do anything they want in a case like this. Clearly there is no law standing in the way of doctors performing these sorts of procedures nor is there likely to be. Ashley’s parents are undoubtedly humane, caring, loving, custodians of their “Pillow Angel.” They are just no longer parents. It’s a choice they, themselves made.
I've excerpted just a couple of paragraphs here. I really recommend reading the whole piece - it's one of the best I've seen over this past couple months.
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quote:The idea of parents wanting their children to remain young babies is a longing that is familiar and this longing is not to be begrudged to Ashley’s parents. Yet to medically enforce such a longing on the grounds that these parents will be better caregivers for disabled Ashley for longer can hardly be justified as a right or responsibility of parenthood. I am undoubtedly better able to care for and protect my two five year olds if I keep them from growing up and never let them out of my sight. It is equally certain that I would be taken away to the funny farm if I tried to make it happen.
This release isn't on the web yet, but is making the rounds via email. There will be lots more info on Tuesday, May 8. For one thing, the full report mentioned below will be emailed to me - but it should also be available online sometime Tuesday.
Edit: I had to delete the press release as there has been some confusion about the status of its ability to be distributed (it's got an "embargo" date on it, telling the media not to report until the day of the press conference). I received two copies in email from third party sources, one with the embargo status and one without.
I contacted the national office and they were aware that the info had kind of flown out of control (it's to be expected when you send it via email to hundreds of people). At the time, they seemed to be adjusting to the fact that it's out there and didn't express concern about further distribution.
Now they are freaking so I am taking it off until Monday night when I'll post it again.
But summary of press release is as follows:
**Washington Protection & Advocacy, a private, nonprofit organization that protects the rights of people with disabilities, investigated the "Ashley Treatment."
**Investigation revealed that the hospital violated the state law and the child's constitutional rights by performing the sterilization without a court order.
**The hospital admits this, is very sorry, and has a plan to make sure it doesn't happen again.
There will be a press conference at Seattle Children's Hospital on Tuesday, May 8, with representatives of the hospital administration and the disability community.
I'll repost on Monday and issue the link to the full report when it becomes available.
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Thank you for posting this, Stephen. I am looking forward to seeing the report. It's nice to know that a court order was required by law in this situation, even though it was not obtained. It's good that the hospital is taking responsibility and adding safeguards, too.
You are welcome. I'm wondering if I should do a separate thread just on this breaking development or not. The reappearance of the thread might look like "old news" to most people.
As to the hospital, I don't think they had a choice but to admit they broke the law and then to formulate a corrective plan.
To me, this should spark many questions about ethics committees in general. The only reason we know this hospital and its ethics committee ignored the law is due to an outside investigation. The reason there was an investigation at all is because this all went spectacularly public - with the publication of the journal article and the publication of the parents' blog. If this had never become public, the breaking of the law would never have become known.
How often does this happen with hospitals and ethics committees? Most of these matters don't become public or get reviewed by outsiders.
I'm not suggesting I have an answer. There is a glaring lack of data, which is the way the medical profession likes it.
But people who suggest this is *rare* aren't making data-based statements, either. They don't know and shouldn't pretend that they do.
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I definitely thik this deserves it's own thread, unless Kasie happens by and can change the title. Thanks for posting it.
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OK, I didn't bother to update the press release section. Sorry about that.
But, as promised, here's the site you can go to for the full report in pdf(I'll post some links to news stories later): Washington Protection & Advocacy System
And as an added bonus, here's the executive summary for your reading pleasure. And it confirms my suspicions in terms of "groupthink.":
quote:WASHINGTON PROTECTION & ADVOCACY SYSTEM
The following is an excerpt from the Investigative Report Regarding the “Ashley Treatment”
Executive Summary
• The Washington Protection and Advocacy System (WPAS) is the federally mandated protection and advocacy (P&A) agency for the state of Washington. The P&As, which exist in every state and territory, are “watchdog” agencies with legal authority under federal statutes to investigate allegations of abuse and neglect of persons with disabilities and to advocate for their legal and human rights.
• Pursuant to its federal authority, WPAS initiated its investigation of what happened to Ashley in regards to her “Ashley Treatment” after publication of a medical journal article describing the medical interventions provided to a young child with developmental disabilities and suggesting it might be appropriate for others. WPAS also received numerous complaints after widespread media coverage of the situation.
• Ashley is a girl with developmental disabilities who was six years old at the time the interventions began. The intervention included surgical removal of her uterus and breast buds, as well as high-dosage hormone therapy to limit her growth and physical sexual development.
• The Washington Supreme Court has ruled that when a parent or anyone else seeks to sterilize an incompetent individual with a developmental disability, the individual must be afforded due process and a multi-factored test must be proven by clear and convincing evidence before a court can authorize the sterilization.
• The “Ashley Treatment” was conducted by physicians at Children’s Hospital, at the request of Ashley’s parents and after review by the Hospital’s Ethics Committee. There was, however, no court order sought or obtained before the sterilization portion of the “Ashley Treatment” was performed.
• FINDINGS: The sterilization portion of the “Ashley Treatment” was conducted in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights.
o The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual’s best interests.
o Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interest of the child. Thus, the other aspects of the “Ashley Treatment” – surgical breast bud removal and hormone treatments – should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
o The implementation of the “Ashley Treatment” also raises discrimination issues because, if not for the individual’s developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law.
• The violations appear to have occurred as a result of:
o a lack of policies at Children’s Hospital regarding the sterilization of minors with developmental disabilities;
o an opinion of Ashley’s parents’ counsel that no court order was required. This legal opinion was not supported by Washington law;
o reliance upon that opinion by doctors at Children’s Hospital and the mistaken belief that the opinion of Ashley’s parents’ counsel constituted a “court review;” and
o insufficient internal controls at Children’s Hospital to ensure that Ashley’s independent legal interests were protected.
• As a result of the WPAS investigation, Children’s Hospital has agreed to take the following corrective actions:
o Develop and implement a policy to prohibit sterilizations of persons with developmental disabilities without a court order. The policy will assure that all appeal periods and appeals, if any, are exhausted before any procedures are performed;
o Improve internal controls and oversight to insure that no sterilizations can take place without the necessary court order; and
o Give notice to WPAS of requested sterilization of persons with developmental disabilities so that it can continue to act as a watchdog on behalf of individuals with disabilities.
• Additionally, Children’s Hospital has also agreed to take the following additional steps to protect the rights of children with developmental disabilities for whom the “Ashley Treatment” or other growth-limiting interventions are sought:
o Develop and implement a policy to prohibit growth-limiting medical interventions on persons with developmental disabilities without a court order. The policy will ensure that all appeal periods and appeals, if any, are exhausted before any procedures are performed;
o Give notice to WPAS of requested “Ashley Treatment” and other growth-limiting interventions of persons with developmental disabilities so that it can continue to act as a watchdog on behalf of individuals with disabilities; and improve internal controls and oversight to assure that no such procedures can take place without the necessary court order. To the extent that it is medically viable, the policy will include provisions to monitor the prescriptions for high dosages of hormones that the Hospital’s pharmacy has been asked to fill; and
o Include a disability rights advocate on the Hospital’s Ethics Committee. The Committee will also bring in experts in particular relevant areas as it relates to medical care and interventions for individuals with developmental disabilities, as appropriate.
• NEXT STEPS: In order to continue advocating for the rights of people with developmental disabilities for whom sterilization or growth-limiting interventions may be contemplated, WPAS will:
o work with Children’s Hospital in ways identified in Section V of this Report and monitor the implementation of the Agreement between Children’s and WPAS;
o conduct outreach to courts and guardians ad litem to advise them of WPAS’s availability to provide technical assistance to guardians ad litem and/or representation for children with disabilities for whom a court order is being sought to perform a sterilization, the “Ashley Treatment,” or other growth-limiting medical interventions;
o provide technical assistance to other P&As and disability rights related organizations throughout the country who wish to address issues related to sterilization, the “Ashley Treatment,” or other growth-limiting interventions for children with disabilities, and conduct activities similar to those WPAS is doing in Washington State; o participate in opportunities to educate the public on legal and other issues related to sterilization, the “Ashley Treatment,” or other growth-limiting interventions for children with disabilities, from the perspective of the disability community;
o promote the availability of WPAS’s advocacy services to obtain assistive technology to facilitate mobility and ease of providing personal care where funding is required by law; and
o widely disseminate this report to various organizations and agencies in an attempt to draw attention to the need to take proactive measures to protect individuals with developmental disabilities. WPAS will also collaborate with our partners in the disability community to:
o identify and promote the best candidates who have a “disability perspective” for participation in hospital ethics committees around the state;
o conduct outreach to hospitals throughout the state to encourage them to adopt policies similar to the ones being developed for Children’s;
o develop a strategy for reaching and educating doctors who may be considering providing high doses of hormones for the purpose of growth attenuation of individuals with developmental disabilities on an outpatient basis in their offices and without the involvement of any hospital;
o create and disseminate educational materials and make presentations to train doctors, medical students, members of hospital ethics committees, judges, guardians ad litem, lawyers, law students, people with disabilities and parents of people with disabilities on legal and other issues related to sterilization, the “Ashley Treatment,” and other growth-limiting medical interventions for children with developmental disabilities from the perspective of members of the disability community;
o work with agencies involved in certification, accreditation, and licensing of hospitals and health care providers to assure that standards, criteria and requirements related to the provision of sterilization, the “Ashley Treatment,” and other growth-limiting medical interventions for children with disabilities are clear, consistent with the law, and communicated to those who need to know;
o work with health insurance companies operating in Washington State and around the country to assure that their policies for reimbursing costs of the “Ashley Treatment” and other growth-limiting medical interventions for individuals with developmental disabilities are clear, consistent with the law, and communicated to those who need to know;
o work with the disability community in Washington State and around the country to identify and advocate other ways to restrict the performance of the “Ashley Treatment” and related growth-limiting medical interventions for children with disabilities to the furthest extent possible;
o to the extent necessary, seek the means necessary to accomplish the above in a timely manner; and
o work with people on every side of the debate to join together to improve the services and supports for children with disabilities and their families.
To view the complete Investigative Report Regarding the “Ashley Treatment”, please see www.DisabilityRightsWA.org. To receive this document in an alternative format, please contact DRW Administrator Jessica McDaneld at 206-324-1521 or TTY 206-957-0728.
quote:The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual’s best interests.
I'm not fluent in legalese, so could someone please explain how one could be 'zealous' and "disinterested" at the same time? And why would either be appropriate for the defendent of a mentally/physically disabled person? Why wouldn't it be preferable to have a well educated, interested and calm person making the defence? I don't see how zeal or interest really come into play.
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what's this adversarial proceeding going to consist of? What if the third party also thinks sterilization would be better? Who plays adversary?
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My guess would be a Guardian ad Litem, not related to the family but familiar with disability rights issues. (not a legal expert)
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Vonk - that means someone - not connected to the parents or the hospital - advocate for the child. This is done more often than you think in cases where families might have mixed motives in terms of what they want done (in Ashley's case, part of the parents' rationale that keeping her small would make their own lives better, for example.)
The specific term for this person is a guardian ad litem - their job is to advocate for the best interests of the individual (incapacitated adult or a minor).
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Ok. The disinterested part means having no personal interst, not having no interest in the case at all. Requiring someone to be zealous still sounds weird to me.
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"Zealous" is taken from the Rules of Professional Conduct governing the practice of law. Here is the relevant section of the ABA Model Rules: "As advocate, a lawyer zealously asserts the client's position under the rules of the adversary system."
It should be noted that "illegal" in this sense means that the proper procedures were not followed - literally, a denial of due process. Based on the posted information, there's no ruling that the decision made was erroneous. Just that it was made improperly.
That's not to denigrate the finding nor to defend the actual decision. Due process violations are very serious - so serious that we will exclude absolutely reliable evidence and allow a murderer to walk free in order to protect it.
The key here is the irreversibility of the "treatment." It is in such cases where process is the most important, because a mistake can't be fixed.
Elements of due process include notice and hearing. The type of hearing is largely determined by the importance of the right at stake. The right invoked here is considered amongst the most important, so the process must be extensive: the right to present evidence, to hear evidence, to cross-examine witnesses, impartial arbitrator, and legal representation are all critical.
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In possibly related (and somewhat late) news, Dr. Daniel Gunther, the man who led the surgery on Ashley, killed himself in September.Posts: 4313 | Registered: Sep 2004
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quote:"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it," they wrote, adding that while they support laws protecting against involuntary sterilization, they believe the law is "too broadly based" to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."
This attitude really annoys me. The investigative report called for a court hearing. It didn't say the procedure shouldn't have been done at all. It simply said that, before such a permanent and life-changing decision should be made, a neutral decider (a judge) should have heard evidence of the benefits and costs of this procedure before deciding if it was in her best interest.
In order to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley," someone has to analyze the evidence. A court exercising the review described by the investigators can easily make such a distinction.
It's like saying that the criminal justice system should distinguish between the innocent and the guilty.
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I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!
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Thanks, Stephen.
