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January 07, 2007

"Ashley's Treatment": The ethics of growth stunting in profoundly disabled children

A few more thoughts on the case of Ashley, the 9-year-old Seattle girl whose parents opted to stunt her growth with high-dose estrogen so that they could continue to give her the safest and most fulfilling life at home.

Ashley's parents feared that if their daughter got taller and heavier, they would be unable to hold and carry her. Ashley functions at the level of a 3-month-old. She can't sit up, speak, or even shift her position in bed. Even so, she craves stimulation and human contact. Her parents strive to include her in the day-to-day activities of the family.

Ashley's parents have always been committed to caring for her at home regardless of her size. They committed to lifelong home care long before they knew growth attenuation existed. However, they also realized that even with the best help a larger Ashley just wouldn't have the same quality of life as she enjoys today.

As my friend Linda (who taught disabled students for 20 years) pointed out in an earlier thread, there are technologies that can enable a single caregiver to move a 200 lb person safely. I agree that we should use all the technological and environmental "fixes" available before we start treating living problems as medical conditions That said, Ashley's parents had a reasonable concern that their daughter's life would be fundamentally changed if she couldn't be held and carried.

Ursula, a commenter on Pandagon, explains how an adult-sized Ashley's life would be different, even if her parents had enough staff and technological help to continue caring for a full-sized adult at home:

If you’re going to rely on a mechanical lift, each and every move becomes a big production. Which doesn’t seem to be the life that these parents want for their child. If they can carry her easily, she can go, during the day, from her bed, to the sofa, to her wheelchair, to a blanket on the floor, to a bench swing in the yard, to visit friends and neighbors with non-accessible houses, and just about everywhere the family goes. If they have to use a Hoyer, she goes where the Hoyer goes, and not for very long elsewhere. Particularly since she doesn’t seem to be comfortable in the wheelchair for extended times, so that, say, a visit to the neighbors might involve walking over in her wheelchair and then being moved to the sofa for comfort. If a mechanical lift is needed to get her out of her chair, they either stay home, or she goes on the visit and is uncomfortable the whole time. Extended visits are out - if they can lift her to the floor or a bed, they can change her diapers in just about anyone’s home, but if they need the mechanical lift, they have to head home for a change. Family vacations would be sharply curtailed, rather than just needing an ordinary wheelchair-accessible hotel room, they’d need to bring along the lift, and be sure the space is big enough to use it.

Having to rely on a mechanical lift would take away a lot of what “independence” she has - the ability to move with the family in a spontaneous way as they go through their life together. It would be one more step away from being a part of the family in every way, in every activity. Using one as a help at home and at her school may be appropriate, but growing so large that they have to always use one would be a loss, for her, of a lot of her opportunities for pleasure.

A Hoyer or other mechanical lift is an appropriate tool to use when one can’t lift and carry a person safely, but it isn’t an ideal substitute, and it brings with it its own set of restrictions and limitations. [Emphasis added.]

Some commenters have suggested that the height attenuation procedure itself was somehow cruel or traumatic for Ashley. In fact, there's no reason to think that Ashley suffered any fear or pain as a result of the growth stunting. The treatment was just high-dose estrogen and the hormones merely accelerated the natural process of puberty. Ashley had already started to show signs of early puberty before she underwent the height-attenuation treatment. She would have eventually developed breasts and periods even without the treatment.

Before the hormone therapy, Ashley's doctors removed her breast buds and uterus. If they had not done so, 9-year-old Ashley would have been saddled with full breasts and menstrual periods. The decision to remove some of Ashley's reproductive organs is, if anything, more controversial than the decision to stunt her growth. Some have argued that these surgeries were an inappropriate attempt to stifle Ashley's sexuality, or a misguided attempt to prevent rape.

In fact, these procedures were an attempt to prevent estrogen-induced side effects and forestall certain health problems.

It's easy to assume that doing nothing is more benign than intervening in the "natural" course of things. However, Ashley's entire physical condition is "unnatural" in the sense that human bodies aren't designed to thrive when immobilized and tube fed. That's a good thing, too. Ashley would die without these unnatural interventions.

Suppose suppose the doctors had left Ashley's breasts and uterus alone. Those choices would have had consequences, too. Ashley would have been fertile, for one thing. As lots of anti-surgery folks have pointed out on this thread, all women are some risk of being raped all the time, even (perhaps especially) in their own homes. Ashley’s parents would have had to make some decisions about birth control for their daughter. What were they supposed to do? Ignore the risk? Put her on birth control for the rest of her reproductive life, will all its potential risks and side effects? An IUD for a child who can’t say where it hurts? Tubal ligation surgery? Repeated endometrial ablation surgeries if she developed heavy bleeding, which her doctors say they were concerned about from the start?

Patients like Ashley often have to undergo general anesthetics just for pelvic and breast exams because they find these routine medical procedures terrifying. People who can’t participate in their own care are at greater risk of undetected cancers and other medical problems. Ashley could never report a lump in her breast or a subtle change in her menstrual function. She would be at the mercy of her caregivers to catch any health problems or even any sources of discomfort.

So, the choice is not between leaving her breast buds and uterus alone and living happily ever after vs. cutting them out. The choice is between the two sets of risks and health problems. We shouldn’t assume that the range of health risks associated with breasts or uteruses in a mobile person is in any way representative of the risks for patients who are completely helpless and immobile.

Why are we so enamored of what’s “natural” that we forget to consider what’s best for the patient?

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Comments

Some commenters have suggested that the height-attenuation procedure itself was somehow cruel or traumatic for Ashley. In fact, there's no reason to think that Ashley suffered any fear or pain as a result of the growth-stunting.

I have to wonder if the issue is that people are unaware of the relationship between puberty and height in females? I know that I wouldn't have known that the onset of puberty means the end of growing if my mother hadn't mentioned when I first got my period that I must be done growing. Now that girls are getting their periods younger and younger, this relationship between height and puberty worries me---it would be odd if women's heights started going down again because of the ever-younger ages of puberty.

Oh, anyway I appreciate your insistence on looking at the facts of this case. A lot of the people throwing shit fits literally do not care about the facts, because their ideological stance chose their position for them. Not all, but some definitely. On both sides, though, because I smell ideological agenda on the people who are screaming "euthanasia", even though the evidence points to the fact that Ashley's continuing existence is a plus for her parents as well as herself.

I really don't know how I feel about this, but I don't think the parents are monsters. They may be mistaken, but I'm not buying the argument that they're just freaked out by their severely disabled daughter's sexual development, and that they're hacking off bits of her, willy-nilly, just to keep themselves from having to deal with messy stuff like menstrual blood. And all the comments about how they have other options, like giving her up for adoption or institutionalizing her -- like it's that easy -- just seem heartless in the extreme. And the suggestions of round-the-clock homecare are just a joke. How the hell are they supposed to pay for that? Where is this miraculously fair and compassionate healthcare system that's going to provide that for them and their daughter? God, yes, I want to see the kind of healthcare system that will provide these options, but it doesn't currently exist.

Suppose the doctors had left Ashley's breasts and uterus alone. Those choices would have had consequences, too.

In what world is that the case? Why should Ashley have a knife dangling over her reproductive organs?

Suppose I am not going to ask you to have unnecessary surgery.

You're begging the question, Sara.

Now that girls are getting their periods younger and younger, this relationship between height and puberty worries me---it would be odd if women's heights started going down again because of the ever-younger ages of puberty.

Amanda, are you sure that getting your period means you stop growing? Because I definitely grew a couple inches after I got my period, as did several of my friends (one who was shorter than I when she got her period is now taller than I am--I'm 5'7 and a quarter, if anyone cares).

Puberty is related to (cessation of) skeletal growth, but neither triggers the other. There is, in fact, a growth spurt associated with the onset of puberty, and in girls the fastest growth usually precedes menarche, but not by more than a year or two. Wikipedia is good on puberty, and teengrowth.com is good if you have (or are) an actual teenager looking for less medical, more colloquial advice. The latter says that "The AVERAGE girl grows about 2 inches after starting her menstrual period, but this may range from 1 to 6 inches.".

It's usually the beginning of the end, Isabel. The rush of hormones in puberty stunts women's growth. I'm not sure if that's why women are shorter than men on average, but I would bet dollars to donuts that is part of it. Random side effect of our different hormones=millenia of oppression because of a minor size differential.

Life is weird and random, which is, needless to say, why it's important to look at individual circumstances instead of assuming that sweeping ideologies tell us all we need to know about the world.

It's instructive to remember that menarche is basically the last of a series of changes. I had a huge growth spurt right before I started my period and then grew about an inch afterwards. That seems to be typical. But definitely, getting your period is basically it. Ask around to women you know and you'll find growth stopped about a year after their period. I only know of one woman this isn't true of, and I think she was a late bloomer.

Screaming euthanasia would definitely be inappropriate in this case...who exactly would that be serving when the parents are perfectly willing and able to care for their child themselves?

Why should Ashley have a knife dangling over her reproductive organs?

Because of the family history of reproductive cancers.

I'm not sure why that's not a good enough answer in a patient who is UNABLE to signal specific pain.

A little over a year ago a friend of mine died from ALS. He spent the last year or so of his life in a wheelchair, and had to be moved with a mechanical lift. I even spent one night at his house just to help out his wife (shortly before he entered assisted-care) to help move him in the middle of the night (when he got sore or uncomfortable from laying in one position for a few hours) and give him his pills and water when he was thirsty. Anyway, using that mechanical lift entailed a significant amount of work for the operator just to move the poor guy from his living room to his bedroom. Therefore I know that mechanical lifts, as wonderful as they are for some people, are certainly no guarantor of quality living. If one person had been able to simply carry him from place to place I know that he would have been able to go more places and enjoy his remaining days much more. I'm not trying to make a perfect analogy between my friend's condition and Ashley's because obviously it would fall short. However, the similarities cannot be easily overlooked.

I feel for the parents of Ashley. It's wonderful that they are trying to incorporate her into their everyday lives as much as possible to make their mentally infantile child happy. I feel that people who criticize them are often the same type of people who criticize parents who choose to let their children be medicated for ADHD. My 8-yr. old son suffers from this, and I can assure you that he is happier with the medication than without it. People who arbitrarily define what is "natural" and what is "unnatural" are no mental giants themselves. These are the LAST people who should be listened to in any debate.

Lindsay writes;
Why are we so enamored of what’s “natural” that we forget to consider what’s best for the patient?

Doyle;
One reason this statement about Ashley bears so much burden is the specificity of the person, and a jumble of solutions people have constructed in their minds about 'realistic fixes'.

In order to address what Lindsay brings up here, the issue can't be debated person by person. The wealth of details defeats the process of 'universalizing' the content of mental rights for disabled people.

What does unite such a diverse group of people? People who might be autistic, deaf blind, can't talk, stroked, alzheimers, etc.?

What determines rights for people with a mental disability, (sometimes referred to in the deuce as Intellectual & Developmental disabilities of cognition) is most often; language. In other words without language the barriers to social connection determine how the disabled persons rights are recognized.

So in Ashley's case as far as Disabled Rights are concerned it is the issue of communication through language that is the uniting characteristic between all mental disabilities.

So rights in this case are about what language does to unite people, and 'uniting' Ashley to people in the same way irrespective of 'language' connection. In this sense Disability Rights is the most profound of all Rights movements. For Disabled Rights assumes that language is not the determinant of Rights, but social connection is what determines rights because language connection is no the most universal human connection.
thanks,
Doyle

This is an absolutely excellent description of the trade-offs involved in these sorts of decisions.

Regarding language and rights -

Ashley may not have language, but she does have some ability to communicate.

It is tempting to ignore her communication, in favor of figuring out what we, whether "we" is Joe and Jane Average or a disablity rights advocate, would want in her situation. But doing so eleminates any opportunity she may have for self-determination through people paying attention to what she's communicating.

By crying and fussing, Ashley communicated that her budding breasts hurt when she was held with medically necessary support across her chest.

By crying when left in one position for very long, she communicated that she feels better when people help her move and change position frequently.

By being calm and perhaps smiling or babbling, she communicated that being held by her parents was something she liked.

At the most basic level, she reacts, either positivly or negatively, to stimuli and changes in her enviornment. Even at three months, babies don't communicate just by crying or not crying, they have different cries that their parents can recognize - "I'm hungry" "I'm sleepy" or "That HURTS!" No one caring for a three month old would disregard those cries, or not address what is causing the crying, because they think that doing so would not be what an adult of full intellegence would want for themself.

Ursula writes;
It is tempting to ignore her communication, in favor of figuring out what we, whether "we" is Joe and Jane Average or a disablity rights advocate, would want in her situation. But doing so eleminates any opportunity she may have for self-determination through people paying attention to what she's communicating.

Doyle;
I think we agree. I want people to see that we generally judge people by lack of language to connect them to us. But effective Disabled Rights cannot be based upon language connection. It must be in tune with Disabled person embodied self authenticity.

The problem with this discussion and this discussion is now mirrored on the Scientific American site by three MD Ethicists opining on Ashley is there is no common principles of rights by which we can raise the issue beyond the person. Without establishing a clarity of principle the discussion descends into cacophony.

If Ashley has rights, for example to get fed, or perhaps sexual pleasure then it would be defined by the means of her producing the connection, and that is how to think about this issue.
Thanks,
Doyle

I can understand why Ashley's parents did this for her. For the rest of her life they want her to be how she is now, content. Even if she has some discomfort it is not nearly as it would be if she were to mature. I have to say that if I had a daughter who was in the same predicament as Ashley I would do what was best for her, even if it was to keep her as a child for ever.

i can undeerstand why they desided to remove ashley's uterus and breasts, besides health factors that might on an of chance develop because of family history, just from a caregivers view haveing to take care of someone and change their menstral pads would be gross,no matter how much you loved someone, especially since this girl will not ever have the need or opportunites to have children or mature enough to care for herself. As far as the haveing her parts removed as a means not to get raped or be sexual, that is a dumb argument, for one who will this girl be exposed to that would do such a thing? I can not see a truely loveing family putting her in that situation and it's not like their "pillow angel" is going to have boyfriends or date or go on wild party nights. if they are worried that someone in their household would do something like that not haveing breasts or a uterus will not stop the problem.
it is a very sad situation but i wonder who will care for this girl when her parents can no longer carry her around, or after they die? are they expecting her to die first?

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