There has been a news story being posted for several days on Yahoo News about a young girl aged 9 years old named "Ashley". Ashley is a severely mentally retarded (read infant of 4 to 5 months in mental level) who is unable to even reposition herself, hold anything or make eye contact with persons around her.

The controversy I was going to discuss was about a procedure labeled the "Ashley Treatment" that was performed by a Children's Hospital in Seattle, WA at the request of her parents. The ethics committee spent a great deal of time debating this procedure and, in the end felt it was worth continuing forward with it.

In Yahoo News, 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.


This is her Parent's Blog discussing their reasons and justification for having this treatment performed.

Being a parent of two disabled children I have mixed feelings about this situation.

I have a VERY DIFFERENT situation in my own life, but being an RN at a facility for the State of Pennsylvania that SPECIALIZES in care for children (who are now grown into adults) such as Ashley, I can tell you I have seen the extremes of nursing and the challenges involved with providing good personal care for both large persons and smaller persons with extreme mental and physical disabilities.

After thinking about this for several days, knowing that I want to take care of my own disabled children in my own home for as long as possible AND having seen the BEST and WORST care situations in many situations (Home Health, Nursing Homes, Hospitals, Group Homes, etc), I am coming to the conclusion, that IN THIS CASE, with THIS SORT OF STABLE HEALTHY CHILD I feel that the parents made the right decision.
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01-09-07, 11:02 AM
babthrower
Well, it's not much different from liposuction, is it? The principle is improving the body for whatever reason with the ultimate goal of good health.

It surely seems to me that anything that would allow these parents to care for their child at home is bound to be in the interest of the child's health.

01-09-07, 01:55 PM
newnickname
When I was nurse I worked with people with similar abilities and challenges. A lot of time was spent on teaching them how to smile - obviously that's not the same level of intervention as in Ashley's case, but it had the same rationale: people who can smile get better care. It shouldn't be so, but it is.

I think that that is the real ethical dilemma behind this case. Ashley has to remain apparently 'cute' or even 'innocent' in order to be assured of higher quality care when her parents are no longer care-givers. People in general are much happier to look after a disabled 'child' than an adult.

I'm reminded also of my nephew, who is seven and has Asperger's syndrome. At the moment he's accepted without question in his (small, village) community. But behaviour that's cute and tolerable in a seven-year-old is not in a seventeen-year-old, or twenty-seven-year-old. A lot of problems could be solved if my nephew could be kept apparently child-like for ever, but that's obviously not the way to go.

While some of Ashley's treatment might make sense on its own terms - such as the hysterectomy in someone who will never have children and couldn't cope with menstrual cycles and so on - I wonder how much the treatment is also driven by society's prejudices.

01-09-07, 02:18 PM
babthrower
I thought physical management was the reason.

If I have to deal with someone who perhaps cannot be socialized, I'd rather the subject weighs eighty pounds than one hundred eighty.

Having known someone who had to put her husband into an Alzheimer's unit because he no longer can be physically managed by her (she weights about 130, he weights about 185 and is a head taller than she), I know the guilt and remorse that the caregiver feels. And there is no question that he would do better at home, so long as he could be kept from hurting himself. But he can't.

01-09-07, 07:34 PM
newnickname
The physical management (pressure care, bathing etc.) of a larger person would certainly present more problems, but there's no shortage of equipment to make it easier. That's just a question of cost.

But maybe you're right.

I was thinking about the comments in this Scientific American article :

'Arthur Caplan, a medical ethicist at the University of Pennsylvania, said the "do no harm" rule governing physicians is very powerful and "stopping growth is not the ethical way to head.

"Puberty, growth (and) aging happen to all of us and there are plenty of people out there who will require help from family or society," Caplan told Reuters. "The solution isn't to take every person who is schizophrenic or autistic or behaviorally disoriented and keep them in a child-like state."'

I'm also concerned about that "pillow angel" nickname. That's not nice; it's dehumanizing, and it seems to stem from that misconception of the handicapped as somehow being 'holy innocents' which is almost as harmful as those stereotypes of their being dangerous or scary.

01-09-07, 07:38 PM
babthrower
No offense, NNN, but that's like saying the situaltion in the middle east is just a question of oil.

01-09-07, 07:40 PM
newnickname
Oops, sorry, I edited while you were replying.

01-09-07, 09:00 PM
babthrower
This is a very interesting topic. I still maintain (though I may have to eat my words) that it is commonplace for parents to authorize medical treatments for their children for the purpose of making them more socially acceptable.
We put braces on their teeth and subject them to oral surgery so they'll have a more attractive smile. Does this suggest that people with irregular teeth are less attractive? Of course it does.

We give them nose jobs and breast implants in their teens (at their insistence, quite often). Girls may be given a female hormone whose side effect is birth control as a treatment for acne. Acne is not at all life-threatening (except in a few cases) and so the main motive in giving these girls this powerful hormone is social.

I know of one boy whose parents approved 'growth implants' inserted into his thigh bones, I have no idea what the technology is. But it does suggest that at least for males, a certain minimum height is considered more desirable. Not functionally, but socially.

So to have a young child (who will have the mind of a baby only a few months old) modified so it is more likely the parents can manage her at home is not qualitatively different, I think.

01-09-07, 09:04 PM
newnickname
However. playing devil's advocate, if it is a question of physical management, does she really need all of each leg? She'd be even easier to move after amputation.

I discussed this story with my students this morning, to get some debate going. They all seemed to support the decisions, but what seemed to give all of them pause was 'They also removed her breast buds to limit the development of breasts'. Is that a step too far? If it isn't, why does the removal of even part of useless limbs seem so grotesque?

01-09-07, 10:12 PM
Sherasi
I did read the family history. Apparently, not only are all of her females on both sides of the family EXTREMELY well-endowed, there is a seriously high rate of Breast Cancer on both sides of the family. Breasts on a bed-ridden female can be extremely difficult to manage as well as keep from developing sores and wounds.

She requires bands across the chest to keep her in position. Breasts would also inhibit these safety features.

01-10-07, 04:51 AM
DvdGStwrt
To me this "stunting" and "removing" seems radical.

If she is that bad off then why keep her alive?

No seriously I'm not being funny. All of this for future "care".

When we put down or put to sleep a dog or a cat in better condition than this girl, we are told it is the humane thing to so. but we seem to shudder at applying that "humanity" with people. We shudder and dread that option so much we turn to radical surgery to provide a future for an eternal infant?

I fail to see the "humaneness" of carving up a body like this to "preserve" life.

Which begs the question what is life anyways?

Is this girl having a life? Is quantity better than quality?

How about the quality of life for the rest of the family? Mom, Dad, siblings if any? Are their lives going to be better now that the girl will not develop fully?

I'm sorry if what I say offends, but to me the rational solution is to euthanise the child who's condition is very bad and never going to get better, not to carve her up and stunt her growth and make her into a little dolly so folk will be more willing to take care of her or some such nonsense.

(nonsense in that it takes radical surgery like this to make people willing not nonsense that people should/could would take care of her)

01-10-07, 08:31 AM
Xanadu

quote:
Originally posted by DvdGStwrt:
When we put down or put to sleep a dog or a cat in better condition than this girl, we are told it is the humane thing to so. but we seem to shudder at applying that "humanity" with people. We shudder and dread that option so much we turn to radical surgery to provide a future for an eternal infant?

I fail to see the "humaneness" of carving up a body like this to "preserve" life.

I'm sorry if what I say offends, but to me the rational solution is to euthanise the child who's condition is very bad and never going to get better, not to carve her up and stunt her growth and make her into a little dolly so folk will be more willing to take care of her or some such nonsense.

(nonsense in that it takes radical surgery like this to make people willing not nonsense that people should/could would take care of her)


I agree with what you say DvdGStwrt, especially the parts quoted above.

There isn't even a very slight chance that this girl will improve. Her mental age will never go beyond a few months of age. What are they putting her through all this for?

quote:
Originally posted by newnickname:
I'm also concerned about that "pillow angel" nickname. That's not nice; it's dehumanizing, and it seems to stem from that misconception of the handicapped as somehow being 'holy innocents' which is almost as harmful as those stereotypes of their being dangerous or scary.


Very scary indeed! I have to admit that I had the urge to grab the sick bag when I read that nickname!

01-10-07, 08:41 AM
Sherasi
I didn't care for that nickname either. It also made me a bit queasy.

BUT you have to realize that to them, this is a sign of affection. Labels sometimes make it easier for people to manage a situation. This (nickname) would NEVER do in a commercial/formal care-giving environment because we (nursing professionals) are TRAINED to recognize dignity-reducing behaviors and labels, BUT this is her families HOME. THEY needed a way to handle the situation emotionally. This label helped and still helps them do this.

WE may not approve, but it helps THEM. And since, in this situation, they are the caregivers, it helps them to feel that they have a little angel they are caring for resting on a fluffy soft cloud of a pillow, then let them. There are WORSE labels, I assure you. And I have heard most of them.

01-10-07, 10:49 AM
babthrower
Why not euthanasia ('good' or easy) death? That deserves a different thread, because although all sorts of surgery is permitted, euthanasia is not, and will not be for a very long time, it seems.

Surgical 'improvements', all the way from circumcision on up, are quite acceptable. A man having a damaged hand removed opts to have part of the healthy arm removed, too, to facilitate a prosthesis.

So the question should be, not would this surgery on any child be 'a good thing', but will it improve Ashley's circumstances.

Is it wrong to unsex her? Sex serves two functions in humans: reproduction and pleasure. Since she can never marry (being unable to enter into marriage or any other contract due to mental inpairment) then any sex act she may engage in (with a person or persons of either sex) is technically rape (sex without consent).

That leaves pleasure. She will probably learn to masturbate just by trial-and-error exploration of her own body. She does not need breasts or a uterus in order to do this.

If one is so desperately pro-life ("every sperm is sacred") that one would wish her to reproduce, even without her being able to understand the consequences of her actions and thus give informed consent, then one could say in that case the surgery has damaged her.

NNN wants to know, why not cut off her legs too? Because (1) they're functional and (2) it's not necessary to reduce her weight beyond what her caregiver can handle.

01-10-07, 12:17 PM
newnickname
Actually, her legs are not functional, are they? By removing the lower half of each, say, you would eliminate a likely pressure point (the heel) and the need for foot and nail care. She'd be easier to move around, too.

I'm not advocating this, of course, but wondering about the instinctive repulsion we have for it, and not for breast removal, although we can make similar rationalisations for each. That suggests that the breast removal is not just about physical care, but maybe (at least a little) about keeping her childlike.

01-10-07, 12:56 PM
babthrower
Don't knock keeping her childlike. Most people - most normal people - feel protective about children. So if she ever needs to be institutionalized, due to parental death, ill health, poverty -- any factor that would make them unable to care for her at home -- she might be more kindly treated than if she were physically a normal woman.

I understand your rationale for legs-off, NNN, but don't accept it, because she will be small enough to be manageable with just the measures already taken.

It's like when someone has a very aggressive infection. The necessary bits are cut off to stop the spread, but not more than the necessary bits.

Often marriages break up under the strain of having a seriously disabled child to care for. So if she's manageable for Mom (in these cases it's usually the mother who takes custody) it will be a big plus for both of them.

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