You may have seen this story about parents who choose to medically halt the growth of their children with severe disabilities through surgery and hormone treatment. It's in this weekend's issue of the New York Times Magazine.
The argument for the treatment is that a child who remains child-sized can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them to avoid menstrual pain.
What struck me as odd in the article was that the ethicist from the children's hospital that published the first case in 2006, with a child known as "Ashley," notes that treatment is only recommended for children "with the lowest cognitive function."
This is echoed in the article by parents whose children have had the procedures. One says: "She's going to be a baby all her life in her brain."
The ethicist cautions that intellect can be hard to read in a child with severe disabilities who can't communicate: "...I do think you need a fair amount of certainty there," he says.
But what does low IQ mean for a child going through these procedures?
To clarify, halting growth for girls involves a hysterectomy and mastectomy, usually between the age of three and six. This is followed by about three years of estrogen treatment that speeds up bone age and triggers the early closing of the child's growth plates. "A careful monitoring of calories" is also required, the article notes. When begun at a young age, future height can be reduced by one to two feet, and weight by 100 pounds.
The implication seems to be that a child with the lowest intelligence will not experience the surgeries and hormone therapy in the same way a child with typical intelligence would.
And why would that be?
The implication seems to be that a child with low intelligence doesn't experience pain.
It reminds me of that time when the medical profession claimed that babies didn't feel pain (proved oh so wrong, scientifically, since).
What I find troubling in this article is the suggestion that intelligence is the barometer by which medically stunting height and weight through surgery and medication is judged ethical.
Does this mean that if a person has normal intelligence, then suffers a severe brain injury that requires 24-7 care, it's ethical to surgically alter their body to make it lighter for caregivers to lift?
Does low intelligence or brain injury make a person less likely to feel surgical pain?
I didn't know the answer, but I found the assumption troubling.
So I asked two of our staff at Holland Bloorview.
Peter Rumney is physician director of rehabilitation and complex continuing care at Holland Bloorview and an international expert in acquired brain injury in children.
"Not usually, no," was his answer.
"Absolutely not," is how Nick Joachimedes answered the question.
Nick, as a nurse educator at Holland Bloorview, led research to address literature that showed pain was under-recognized and under-treated in children with disabilities. "How these children show their pain may be different," he says. "But they are certainly as susceptible [as] anyone else."
I don't, for a second, question the physical hardship of caring for a child who will grow to adult size while parents age. This is a massive issue. We know from research that parents of kids with physical disabilities are at much greater risk of all kinds of physical injuries and chronic health problems.
But to argue that altering a child's body with surgery and hormones to make care easier is justified because they don't experience pain is plain wrong.
By the way, the New York Times article notes that Ricky, the boy pictured in the magazine's photo above, received estrogen treatment for three years until his toes started to turn purple (thrombosis is a side effect). He also developed breast tissue. His doctor suggested his breast buds could be surgically removed for cosmetic reasons but his parents felt this was unnecessary.
What are your thoughts?
Photo by The New York Times
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11 comments:
I am appalled. As I was when I read about the Ashley Treatment. Why not just amputate their limbs to make it even easier to carry and for care if that is the important thing? It goes against every bit of the "first do no harm" edict that should be paramount when dealing with anyone.
As for low intellectual abilities being something that is needed to have these mutilations, my guess is that it's because anyone with enough ability to protest, decline, decry this being done to them would do so, and the pros simply are not rational enough to explain even to a child who can follow the arguments.
I read the article and I think you mischaracterized it. There is nothing about an individual of low cognitive ability feeling pain differently (nor does height reduction necessarily have to come with a hysterectomy and/or mastectomy--often those two procedures do not occur together, according to the article). The dr. who cautioned that you have to make sure there is low cognitive ability points out simply that sometimes because people can't communicate they are thought to be infant-like, when that might not be the case at all, and that you need to be sure that they truly are low-functioning cognitively before you alter them physically. There is nothing about growth restriction (not talking about mastectomies or hysterectomies) that should be painful per se--the natural process of the growth plates shutting down is just accelerated--hardly like an amputation of limbs mentioned by the previous commenter.
Hi Adrienne - all of the cases of girls to date have involved hysterectomy and what has been described as removal of breast buds or mastectomy - depending on the article you read. These are major surgeries that cause pain. Why is it justifiable to make a child with low I Q endure that pain for non medical reasons when you would not expect a typical child to? Why is surgically altering bodies ok for children with low cognitive function but not for those with higher intelligence? If there is a reason I'm missing - other than that the lower I Q Kids won't experience pain in the same way, please share it. There are side effects to the estrogen treatment. Do you b think we should be removing the breast buds of boys, as was suggested for the one boy in this article when he developed breast tissue? Why is the procedure only recommended for kids with low cognitive function? Kids with higher cognitive function are also challenging to lift.
The NY Times article that you linked to and that I read yesterday said, "The survey did not break down participants by sex or note whether they had hysterectomies or breast-bud removal," which indicates that restricting growth and having a hysterectomy/breast-bud removal do not necessarily have to go hand in hand, although I would guess that they might often do so. I think it's also important, just to be fair to the parents who do choose to do this, that a hysterectomy and/or breast-bud removal is not "major" surgery--especially on a prepubescent child. Even in adults, hysterectomies now are outpatient procedures in almost all cases and pain can be managed. That's not to say that these decisions should be made lightly, simply that we don't need to overstate the case against any of the procedures.
I maintain that there is nothing at all to suggest this is ok simply because children with lower cognitive abilities don't experience pain--I don't see any mention of that in the article and I don't know that you would find a dr. in this country that would support this claim. Although I have to make this inference from what I read, my guess is that there is concern that children of higher cognitive abilities have a sense of individual identity, and therefore you should not alter their physical size. Referenced directly in the article is that "the minds and abilities of many people with cognitive disabilities evolve over their life spans" and you might preclude some of this by altering their size. I think that's why they want to limit this procedure to only the children of the lowest cognitive ability.
I feel a lot of sympathy for parents who can envision a time wherein their small child grows up to a 125 or 150 or 200 lb person. I can see that they would agonize over what they see as a diminished quality of life. And to the parents who choose this--their ability to move their child IS of paramount importance, as indicated by the article.
I think in the ideal world there would be supports in place that parents can care for full-grown adult children at home--and in public--if they so choose. But that isn't what happens. And as such, I really can't judge these parents who decide that this is best for their child. These are just parents who are trying to do the best they can.
I know I didn't answer each of your questions directly, which I hope you don't take as my trying to dodge the issues, but I think I've addressed the questions more globally.
This issue raises many concerns; relying on several contestable premises. First, the use of the child`s intellectual capacity as a criterion for justifying these interventions is quite perplexing. As long as a child has consciousness, he/she should be able to experience pain. Moreover, impaired cognitive function could in fact pose greater concerns rather than less, as it may compromise the child’s ability to understand the discomforts that he/she is experiencing; that the “treatment” is supposedly beneficial for him/her. Second, using these medical interventions to facilitate basic physical care of the child seems like a stretch of the child’s best interests standard. This seems to impose a disproportionate burden on the child – to render the child physically easier to care for – when household adaptations and assistive devices could be used instead. Finally, there seems to be an under-recognized breach of basic respect for the child’s dignity, by treating his/her body in simple mechanistic terms, using convenience as a rationale for bodily alternation.
Franco A. Carnevale, RN, PhD (Psych), PhD (Phil)
Pediatric Ethicist, Nurse, Psychologist
McGill University
Hi Adrienne -- thanks for your response!
The two cases of girls featured in the article had the hysterectomies/mastectomies (breast bud removal sounds like a euphemism to me). I don't believe hysterectomies are outpatient surgery here -- the 2 women I've known who had them described them as painful with a long recovery (in one case 6 weeks).
If we think that a child's identity is tied to their body as it is, does it really make sense to say that this doesn't apply to a child with the lowest cognitive function? How exactly do we know?
You may be very right that I am making a connection between low IQ and pain that isn't one made by the doctors who do the procedure. For the life of me, I couldn't understand why the doctor who did the "Ashley" procedure would say it is recommended ONLY for those with the "lowest cognitive function." Perhaps I was being generous in thinking that there was a misperception about reduced pain in this population.
I do not judge the parents who I am sure undertake this with the best of intentions. I do judge the lack of leadership among doctors and ethicists who agree to these procedures rather than advocating for other ways of better supporting the families. And, of course, for the lack of accessibility/supports in the culture at large.
I know how desperate parents can feel, being one. In fact, my son had the opposite problem when he was young. He didn't grow and was "failure to thrive." I was DESPERATE that he be given a trial of growth hormone therapy, and it took me some months, but I finally convinced an endocrinologist to do it -- even though he wasn't growth hormone deficient. The trial -- giving my son injections 6 nights a week at home -- for months was not successful. In this instance, in hindsight, I wish the endocrinologist had PUSHED back and stood firm that there was no medical basis for the trial, and that really I needed to do more work on accepting my son.
I know the issues aren't the same. Why don't all of these doctors go to the media/politicians and make a really big noise about the physical hardship parents face? What if the cost of these surgeries and estrogen treatment was spent in other ways?
I, too, don't think this is about different pain perception - nowhere in the article does it say that and I don't think any doctor would argue that low cognitive function equals diminished pain perception. I think you read that into the article but it is not what is said.
My understanding of the "Ashley procedure" only being for those "with the lowest cognitive function" is that it is only ethical to hormonally intervene with growth in those who lack awareness of how tall an adult is expected to be, and lack the capacity to understand that they are unusually short. In other words, it is only to be used on those for whom small size can't impose mental anguish.
I'm more torn over the breast bud removal/hysterectomy, although I could be devil's advocate and argue that precisely because women with very low cognitive function cannot articulate well when they experience pain that untreated menstrual pain throughout their lives may add up to be worse than one-time well managed pain after a hysterectomy.
As you know I dedicated a whole blog to this issue. I gave up because now that the cat is out of the bag, there is very little to be done to stop it. Like others have commented here, I did not read anything about pain being the issue. The issue is cognitive ability or disability and that it cannot be assessed in individuals who do not have the physiological ability to express their mental state (think Annie Macdonald and Christie Brown). In any case, if a woman in a coma is sexually abused by, say, a hospital worker, is it still rape? Is it still a crime? Is it okay to provide minimal care to our elder population with dementia because they don't know what's going on anyway? That's the crux of the problem; supposedly these children don't know what is being done to them, so it's okay to do it. G.A. is the most appalling violation of human rights that I have ever heard of.
Horrific. Just horrific.
First do no harm!
I agree with everything you said but I think the point touches in this paper were not helpful to me I maybe making a decision on growth stunting hormones very soon for my son an I have looked every where an can find any info on the other aspects of have this done like for instance does there rest of / him keep ageing I mean will he look like a 4ft 40 year old one day beside stunting the height speeding up bone growth what at else happens my son life would be very lifeless if I want able to hold him and help him to be involved in life this means once he get to big for me he will be chair bond or, laying down all time I want know more about the long term effects on his body this treatment may effect
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