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Fri 5 Jan, 2007 10:51 am
Surgery on girl raises ethical questions
By LINDSEY TANNER, AP Medical Writer
Fri Jan 5, 2006
CHICAGO - In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.
The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."
Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.
"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Dr. Joel Frader, a medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."
The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.
Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.
Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."
She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.
An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.
She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.
"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.
Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.
"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.
Dr. Douglas Diekema, an ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.
Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.
"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, `If she's smaller and lighter, we will be able to do that for a longer period of time.'"
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Hmm, the womb I can understand, its best if she doesnt have kids and goodness knows we could all do without the discomfort of periods.
Less bedsores,joining in easily with days out, all great, but Im a bit traumatised by the breast removal aspect, thats a bit to far.
I hope they are regulating what she eats, what she lacks in height she could gain in weight.
Wow. That's a tough call there.
I worked at that children's hospital for a little while, and seeing the state of the kids there really shocked me.
And the insensitivity of elements of society to their plight. They regularly receive MedEvac helicopters there, and the hospital's in a residential area that's set up primarily for retirees. Every time a helicopter came in, the hospital switchboard would get bombarded with calls complaining about the noise. Unbelievable.
But that's a tangent. Really a curious story you've found there, BBB.
You know it never ceases to shock me that Americans still use the word 'retarded' so freely.
I don't mean to be rude, but it is considered an anachronism in the U.K.
...and 'handicapped'.
x
Disabled, I suppose, like others as well.
(Like in "Disability Discrimination Act" or "list of disabilities" etc etc)
"Disabled" not an especially popular word here.
Personally, I don't really care. Intentions behind words mean a hell of a lot more than the words themselves, and somewhat can say "retarded" with love and "differently abled" (or whatever) with vitriol.
What about the article?
(Sorry, BBB)
Probably what we Canadians say - mentally and physically challenged or developmentally delayed ... I think these PC words are kind of silly - they don't really describe the actual problem -
"Mentally challenged" can include ADHD, neurotic, schizophrenic, parandoid, slow, etc....
"Visually impaired" implies there is some sight, but it is also used to describe a totally blind person, which is the ultimate misnomer, in my mind.
"Physically challenged" - same thing - quadraplegic, paraplegic, slight limp, club foot, one arm, etc...
When you use these broad terms, you then have to describe the specific "handicap"...
I think we need better terminology.
patiodog wrote:"Disabled" not an especially popular word here.
That's how they call themselves - at least here (in Germany and Europe).
BBB
I have great sympathy for the parent's action. I knew family with a severely disabled son who, as he grew older and bigger, became more difficult to give loving care to simply because of his size. Is the surgery better than moving the child into an institution rather than keeping the child at home in a loving environment?
BBB
Mame wrote:
I think we need better terminology.
'Disabled' is the generally and internationally used word - e.g. in the
World Association of Disabled Persons
Disabled is another useless generic term which describes nothing.
Quote: None are "dis" unless they so choose.
That's really common saying among disabled :wink:
Re: BBB
Damn, I feel like I'm back in Santa Cruz. "Is she a Latina or a Chicana?" Well, her name's Crystal, try using that.
BumbleBeeBoogie wrote:I have great sympathy for the parent's action. I knew family with a severely disabled son who, as he grew older and bigger, became more difficult to give loving care to simply because of his size. Is the surgery better than moving the child into an institution rather than keeping the child at home in a loving environment?
BBB
Yeah, my initial reaction was a certain degree of distaste -- but maybe not as distasteful as it might have been, since part of my business is advocating the desexing of dependent animals for their own good.
It does seem grim to mutilate someone without their consent -- who can't give their consent. But at the same time, the decision was made by the people who will be saddled with making all of this girl's decisions for the rest of her life.
I'm not sure I can wholeheartedly agree with their decision, but I'm certainly a long, long way from condemning them for it.
I suppose - although it is denied by the parents - that a certain portion of "getting their live smoother" might have led them as well.
Which isn't to critise at all - as a thought.
Quote:The "Ashley Treatment" is intended to improve our daughter's quality of life and not to convenience her caregivers.
Ashley Treatment
Here's how I replied on au's thread on the same subject:
DrewDad wrote:I find the whole story heartbreaking.
If the hospital ethicist, who has the full story, is OK with it, then why do folks feel the need to intrude?
DrewDad wrote:Here's how I replied on au's thread on the same subject:
DrewDad wrote:I find the whole story heartbreaking.
If the hospital ethicist, who has the full story, is OK with it, then why do folks feel the need to intrude?
The problem is that ethicists disagree: Caplan, in the article, is troubled; Diekema, in the article, is ok w/the procedures. I don't see how a hysterectomy in a prepubescent child is ok unless leaving the uterus in is life threatening. In this case, it was removed to keep her perpetually a child as well as lighter weight. Recall, when the operation was performed, she wasn't yet menstruating... It becomes a slippery slope, and a bad one we probably ought not be sliding down.
I can't see that a "woman" with a mental age of three months old is being deprived of reproductive rights through a hysterectomy.
Surely situations like this are unusual enough that they can be decided on a case by case basis. In this case and adult body would deprive the three-month old mind of stimulation and affection.
While I have an opinion on the subject, I don't have a vote--and I shouldn't have a vote. This should be decided by the parents and by the doctors--not the general public and not by the elected representatives of the general public.
Noddy24 wrote:I can't see that a "woman" with a mental age of three months old is being deprived of reproductive rights through a hysterectomy.
Surely situations like this are unusual enough that they can be decided on a case by case basis. In this case and adult body would deprive the three-month old mind of stimulation and affection.
While I have an opinion on the subject, I don't have a vote--and I shouldn't have a vote. This should be decided by the parents and by the doctors--not the general public and not by the elected representatives of the general public.
I, too, have opinions on this topic. Strong opinions. And while I agree w/you, Noddy, that we should have no vote and that such decision
should be made on a case by case basis, it should not be made to be ok, unless you want to go down that slippery slope that makes it ok for other decisions to be made for other disabled people (there is no definition of who severely disabled people are; where do the decisions stop?) Modifying another person's body for convenience of caregivers is wrong motivation. Claiming it's more comfortable for them, while there may be some validity to that, where does it stop? Does it become commonplace for all abdominal surgeries of children unable to speak to get appendectomies since the appendix might burst and isn't needed in our bodies? What about removing breast bud tissue in all boys of families where there is a history of breast cancer? What about in all post menopausal women who wind up in care homes? Neither need that tissue for lactation do they, so it's unnecessary. I see it as an ethically wrong slippery slope for society to slip down, one that could wind up sterilizing anyone who would be better off not getting pregnant, one that could wind up stunting the growth of anyone needing a caregiver to lift them. Is there more human dignity in being the size you are meant to, or being modified/miniaturized so you are easier to pack along with your family members
Here's a question.
What about circumcision? I understand that it's a procedure of a vastly different scale, but it, too, is the removal of a body part from someone who cannot offer consent by a doctor (or rabbi -- the moyl doesn't have to be an MD, does he?) at the behest of the parents. Does the slippery slope argument apply here, as well?
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