The Ashley Case and What is Ethical?
You have probably been reading in the past day or so about Ashley. From the Website for Ashley, the following:
“Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop. Over the years, neurologists, geneticists, and other specialists conducted every known traditional and experimental test, but still could not determine a diagnosis or a cause. Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve.
Now nine years old, Ashley cannot keep her head up, roll or change her sleeping position, hold a toy, or sit up by herself, let alone walk or talk. She is tube fed and depends on her caregivers in every way. We call her our 'Pillow Angel' since she is so sweet and stays right where we place her—usually on a pillow.”
The family decided, after research, consulting with specialists and after approval of an institutional ethics committee, to institute a series of procedures to make life more comfortable for Ashley in the future. Continuing on with the website narrative: “The “Ashley Treatment” is the name we have given to a collection of medical procedures for the improvement of Ashley’s quality of life. The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.” You must read the full website at the link above to understand the facts and the rationale for what was done and for what motivation.
Of course, this case has suddenly raised a huge amount of controversy in many areas and in one area in particular, those activists who want to encourage appropriate as well as ethical treatment for the disabled. Here is a statement released today by Not Dead Yet, a national disability rights group. Please read their statement and also Ashley’s website and hopefully comment on my blog what you think about the family’s decision if the facts and information on the website are correct (which I am assured by someone close to the case that it is). ..Maurice.
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For Immediate Release:
January 6, 2007
Contacts: Diane Coleman or Stephen Drake
Not Dead Yet Statement on “Growth Attenuation” Experimentation
Not Dead Yet, a national disability rights group dealing with medical
and bioethics issues involving euthanasia, reacted today to the public
debate about the so-called “growth attenuation” invasive medical
experimentation performed on a young girl in Washington State.
These procedures rendered her sterile, prevented any sort of puberty
and will keep the girl the size she is now for the rest of her life.
“We are saddened but not surprised by the fact that this was publicized
and met with a great deal of public approval,” said Diane Coleman,
founder of Not Dead Yet. “The public is willing to sanction the murders
of disabled children by their parents, so it’s hardly surprising they would
rush to the support of parents and their medical partners in a matter like this.”
Coleman points out that the series of surgeries and drug regimens would
never have been given to a nondisabled female for any reason.
But more of these practices are threatened. When a report of the
Washington case was published in the Archives of Pediatric and
Adolescent Medicine, some so-called critics of the procedures said
the only way we can “evaluate” the outcome is to do more “research,”
which we presume to mean more experimentation on young women.
“That’s unacceptable,” said Coleman. “We simply need to call
a halt to it.”
Stephen Drake, research analyst for Not Dead Yet, is not surprised
to hear there were medical professionals willing to perform such drastic
measures on a young girl.
“As a child, I had many health problems that continued until the age
of 12,” said Drake. “By the time I was 11 or 12 I was feeling good
enough to worry about other things, like my height (Drake is 5’ 1”).
I was tired of always being the shortest guy in my class and feeling
bad around it. My parents took me to a specialist who determined
that my health issues probably had depressed my growth and
mentioned the possibility of growth hormone. My parents vetoed
the idea, since I was finally happy and healthy. They figured I didn’t
need any new unknown health risks introduced into my life.
They were right and it didn’t really take me long to see it their way.”
Not Dead Yet calls for a total ban on this procedure and similar ones,
no matter what ethics committees think of them. Ethics committees
are not a substitute for the constitutionally-guaranteed right of due
process. In fact, they often act as an end-run around those protections.
“Ethics Committees often say they strive for diversity in their membership,
but they have historically excluded representation from the disability
community about whom they are making life and death decisions,”
said Coleman.
###
Not Dead Yet
7521 Madison St.
Forest Park, IL 60130
708-209-1500
http://www.notdeadyet.org
posted by Maurice Bernstein, M.D. @ 3:09:00 PM
6 comments
6 Comments:
Ok, I'll comment first. It took me two days to get through Ashley's parents' website because it so frustrated me. At first, I was outraged that the parents would do these things to their child.
As I reflect and process more, I realize that it really is a sad reflection on society. We live in a society where parents have to fight hard for equipment for their children. They have to fight hard to get care for their children. Parents fight for everything when their child has a disability. These parents chose a medical solution to a social problem.
My concern is that this debate will subside and the trend will continue. The Royal College of OB/GYN in the UK has requested that severely disabled babies be euthanized. Apparently, the Netherlands allows euthinasia for children with severe disabilities such as spina bifidia.
When will we as a society realize that we need to modify our attitudes, not the people with disabilites? OK, tirade done for now (until I post more ramblings on my own blog).
Maurice,
thanks for posting our release. Here are a couple of links that might be of further interest:
This is a link to a statement by the Disability Rights Education & Defense Fund:
http://www.dredf.org/news/ashley.shtml
Modify the System not the Person
"Benevolence" and "good intentions" have often had disastrous consequences for the disability community. Throughout history, "for their own good" has motivated and justified discrimination against us. The recent story about nine-year old Ashley, a child with severe disabilities, exemplifies this problem.
***
In our view, Ashley has been denied her basic human rights through draconian interventions to her person.
Today, Time Magazine published The Pillow Angel, part 2, which mostly consists of disability rights concerns about the issue:
http://www.time.com/time/nation/article/0,8599,1575325,00.html
[QUOTE]Those troubled by the Ashley treatment as a medical fix for a larger social problem are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors be allowed to kill the sickest infants — which is already legal in the Netherlands. "A very disabled child can mean a disabled family," the college wrote to the Nuffield Council on Bioethics, and urged that they "think more radically about non-resuscitation, withdrawal of treatment decisions...and active euthanasia, as they are ways of widening the management options available to the sickest of newborns." At least in Ashley's case, however much the doctors debated the proper "management options," they all agreed that her life had a value worth fighting to preserve. But as a standard, that's a pretty low bar to set.
[/QUOTE]
Here is a statement by the Disability Rights Education and Defense Fund and it is followed,with permission, by a rebuttal by an ethicist James J. Hughes as presented on a bioethic listserv today Jan 10 2006. ..Maurice.
Modify the System, Not the Person
"Benevolence" and "good intentions" have often had disastrous consequences
for the disability community. Throughout history, "for their own good" has
motivated and justified discrimination against us. The recent story about
nine-year old Ashley, a child with severe disabilities, exemplifies this
problem. When she was six, Ashley's parents requested that their daughter be
treated with medications (large doses of estrogen) to halt her physical
growth, and with surgeries to remove her breasts and uterus. These
interventions were undertaken at the Children's Hospital of the University
of Washington, School of Medicine in Seattle, after consultations with the
medical center's ethics committee. An article about the case appeared in the
October 2006 issue of Archives of Pediatrics and Adolescent Medicine
(160:1077-1078) and MSNBC first reported the story on November 1, 2006.
Ashley is now nine years old, with an expected final height of 4'5" and a
weight of 75 pounds. The physicians involved with Ashley's care have
expressed the opinion that she will never achieve a cognitive level greater
than that of a three-month old. Ashley's parents, who call her their "Pillow
Angel" (see their blog at http://ashleytreatment.spaces.live.com/blog/),
argue that they can care for her more easily if she remains permanently
small, and that she as well as they will benefit from these medical
interventions. The case was reported by the Los Angeles Times, the
Associated Press, CNN, and many other media outlets on January 4, and it has
since raised a firestorm of debate.
We deeply empathize with parents who face difficult issues raising children
with significant physical and intellectual disabilities. However, we hold as
non-negotiable the principle that personal and physical autonomy of all
people with disabilities be regarded as sacrosanct. For decades, parents,
families, and the disability community have been fighting for this
principle, and for community-based services for children and adults that
make it a reality. Their advocacy led to enactment of state and federal laws
in the 1970s that establish extensive rights to full personhood for children
and adults with disabilities. These laws were passed to remedy our shameful
history of abuse and mistreatment of people just like Ashley.
As parents and adults with disabilities, our experience demonstrates
unequivocally that all people with disabilities can be an integral part of
home and community, if needed help and support is available. It is not
always easy to find home care workers who are competent and empathetic. Too
often, we must fight to persuade social service and healthcare bureaucracies
that help at home and appropriate equipment such as adapted wheelchairs and
mechanical lifts are essential and fundamental to our autonomy. However, if
these problems seem insurmountable, or cannot as a practical matter be
surmounted, as Ashley's parents suggest, then it is all our duty to change
the system so it works rather than find novel ways to modify people so that
they will more easily "fit" a flawed system.
Where, we wonder, was the network of programs and services that exist in
every state when Ashley's family decided the best option was to employ
medical procedures that violated their daughter's autonomy and personhood?
Were other families whose children have disabilities like Ashley's asked to
talk about their experiences and how they solved problems as their children
grew to adulthood? Where were the social workers and advocates who should be
providing alternative perspectives? Why did the system fail this family and
their daughter? That, it seems to us, is a fundamental question.
Beyond these apparent institutional failures, the conduct of Ashley's
physicians and the ethics committee's decision in this tragic story should
be widely questioned - there are future implications for other families and
their children who have significant impairments. We rely on healthcare
professionals to alleviate pain and suffering and maintain functionality,
not decide when someone is worthy of holding human rights. After decades of
struggle to enshrine the human rights of people with disabilities in law and
policy and to challenge the overwhelming prejudice, negative attitudes, and
misperceptions that are widely held about people with intellectual
disabilities, this sad and puzzling episode must not mark a turning point
for those hard-won gains.
It is ironic in light of this story that the United Nations General
Assembly recently adopted the first convention of the twenty-first century -
the Convention on the Protection and Promotion of the Rights and Dignity of
Persons with Disabilities. Recognizing that the rights of people with
disabilities to autonomy and personhood are still violated by many nations
around the world, Article 17 of the Convention, entitled "Protecting the
integrity of the person," reads, "Every person with disabilities has a right
to respect for his or her physical and mental integrity on an equal basis
with others." In our view, Ashley has been denied her basic human rights
through draconian interventions to her person.
Disability Rights Education and Defense Fund
Berkeley, California
January 7, 2007
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Rebuttal by ethicist James J. Hughes:
> Modify the System, Not the Person
Yes, we could also save a lot of money in our health care system if we
would just adopt the "social model" for cancer, heart disease and
stroke. How presumptuous of our phallo-centric, pill-pushing,
allopathic, Western medical system to presume to "treat" people with
cancer when they are simply part of the cancer community. Also
vaccination for polio apparently violates the social model for polio
sufferers, and anti-smoking advice violates the social model for the
emphysema community. We could simply build lifts and berths for
motorized iron lungs and oxygen tanks on buses and in restaurants and
workplaces, instead of trying to keep people from getting these
diseases.
Is it clear that I'm not a fan of the "social model" discourse? I don't
dispute the obvious fact that disabilities are always defined in
relation to societal norms and adaptations, which is why our
"developmentally delayed," short, wormy, diseased and smelly ancestors
would be considered disabled today, as we will be considered disabled to
our enhanced descendents. It's the militant assertion that people should
be attacked as eugenicist for wanting, for themselves or their children,
sight, hearing, mobility or mental ability that I find crazy-making. The
position that being able to hear or see is no better than deafness and
blindness is absurd, and I wish more ethicists had the courage to say
so. Otherwise let's make it legal for parents to blind and deafen their
children.
Does it ever cross the disability extremists' minds that Ashley can't be
presumed to be part of any community since she can't ever conceive of
herself as a member of any community? Their position is as insulting as
racialists who insist that a Chinese child adopted into a Caucasian
family must be part of the Chinese community, and subject to Chinese
community oversight, regardless of what the child or parents desire.
Ashley doesn't conceive herself as "disabled" because she doesn't
conceive herself at all. It is her parents' responsibility to treat her
according to the love and respect they have for her as a person, not as
a symbol for other people's projected political anxieties.
Ashley has no autonomy.
All of the equipment and support in the world will not give her autonomy.
I admire much of the work of Not Dead Yet and similar groups, but there remains a disconnect in the "disabilities community" between the physicals and the cognitives.
A quadraplegic Rhodes Scholar shares little in common with an athletic adult who has severe autism. Someone who can direct aides on the hows and whens to wash up, eat and brush his teeth is in a whole different universe from someone who doesn't know what a wash cloth is, doesn't recognize hunger, and can't understand a request to open his mouth.
Pam -- mom of a kid who has it all (physicial, cognitive and medical) And is very cute, too.
To read more on the Ashley case and a personal view by an ethicist and mother on why she can understand some of the basis of the decisions by Ashley's parents but also suspects why they didn't fully admit it, read "Ashley and the Dangerous Myth of the Selfless Parent" by Alice Dreger on the Hastings Center Bioethics Forum website. Ms Dreger writes:
"It sounds more like Ashley’s parents find they have their hands full enough – literally – and they can’t handle any more. They don’t want to handle any more. I get that. Why not just be honest about that?
Because we’re not allowed to be selfish parents and selfish caregivers of people with disabilities, that’s why. And yet I can’t help but feel that if we were honest about this, then we could have a much more honest discussion about why we might choose for others genital normalizing surgeries, conjoined twin separations, growth hormones for “idiopathic short stature,” and “the Ashley treatment.” And maybe if we had that more honest discussion, we wouldn’t choose them so often. Maybe then we’d do a better job figuring out how we are really weighing best interests, and see that sometimes it isn’t the patient whose suffering we’re supposedly preventing – that it isn’t always the putative patient who need an intervention." ..Maurice.
From MSNBC: Ashley's family thanked Gunther profusely on their daughter's blog, last updated on March 25, 2007, saying, "Special thanks to Doctor Daniel F. Gunther, without whose courage, confidence, knowledge, open mindedness and unwavering support the treatment would not have been realized and the idea would have remained just an idea. We know that many endocrinologists would not have ventured into such new territory.
It is our, and Ashley’s luck, that we knocked on the right door."
In 2004, Gunther and his colleague Dr. Douglas S. Diekema performed a hysterectomy, removed the breast tissue and started hormone treatment to permanently halt the growth of a 6-year-old disabled girl so her parents could continue to care for her at home. The doctors wrote about the procedure, which was performed at Children's Hospital, in the October 2006 issue of the Archives of Pediatrics & Adolescent Medicine.
We learn today The doctor at the center of a controversial procedure which stunted the growth of a severely disabled girl has committed suicide.
Dr. Daniel F. Gunther died from toxic asphyxia from inhaling car exhaust, said Greg Hewett of the King County Medical Examiner's Office. His time of death was listed as 9:30 p.m. on Sept. 30. The 49-year-old was a pediatric endocrinologist at Children's Hospital and Regional Medical Center in Seattle and an associate professor of pediatrics at the University of Washington.
Sad. ..Maurice.
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