An Ethically Unsound "Therapy" - The Center for Bioethics & Culture Network

(from nationalreview.com) Doctorsat Seattle Children’s Hospital admitted that they surgically removed asix-year-old girl’s healthy uterus, breast buds, and appendix, and thensubjected her to two years of high-dose estrogen injections to keep herfrom reaching adult stature. And they did so at her parents’ request.Sounds like a clear case of child abuse, doesn’t it?

Not sofast. Many are justifying these actions because the girl in questionwas profoundly disabled with a neurological disease that left her withthe mental and physical capacities of an infant. Moreover, they pointout, her parents were motivated by the loving desire to keep her”small” so she could always be cared for at home. The question thusbecomes: Do these motivating factors transform a seemingly clear caseof child abuse into acceptable acts of loving care?

These arethe intensely controversial questions that we face in the case of”Ashley X,” an anonymous disabled girl from Seattle whose parents anddoctors are promoting “Ashley’s Treatment” — described above — as amedical method of enabling profoundly disabled children to remain inthe care of their parents when they become adults. Accordingly, Drs.Daniel F. Gunther and Douglas S. Diekema asserted last October in the Archives of Pediatric and Adolescent Medicinethat there was a “compelling case” for acceding to “a parent’s desireto seek growth attenuation” for a profoundly cognitively disabled, nonambulatory child.

Meanwhile, Ashley’s parents, , established a blogto proselytize for the medical transformation of other profoundlydisabled children into what they call “pillow angels.” They write intheir blog: “We call her our ‘Pillow Angel’ since she is so sweet andstays right where we place her — usually on a pillow.”

This verydisturbing case raises two fundamental questions. First, did thesemedical interventions support Ashley’s intrinsic worth as a humanbeing? Second, did her disability and the parents’ loving motivetransform what would normally be deemed terrible abuse into legitimatetherapeutic procedures that were ethical for the doctors to perform?

Theanswer to both questions, I think, is no. To understand why, we need tomove past the emotionalism generated by Ashley’s circumstances andsympathy for the parents’ motives, and deconstruct what was done to herand why.

Let’s start with the least excusable action that wastaken: The parents reported in their blog that Ashley’s breast budswere removed to free her from “the discomfort associated with large andfully-developed breasts.” This surgery seems ethically invalid andutterly superfluous. It did nothing to promote ease of Ashley’s futurecare. Nor could the parents and doctors have known whether breastswould one day cause Ashley any discomfort. And even if they did, therewould be other non- or less invasive methods of dealing with the issue.Perhaps this is why — and I found this omission quite striking — Drs.Gunther and Diekema fail to mention that they subjected Ashley to mastectomy in their journal paper.

Whichbrings us to the hysterectomy/appendectomy issue: Ashley’s healthyuterus was removed to prevent her from ever menstruating and,apparently, as a prophylactic against uterine or cervical cancer. Sothe question is whether avoiding the “mess” of menstruation — thecancer worry seems like so much window dressing — justified removingher healthy uterus (and appendix).

Hysterectomies, whilecertainly common, are not without potentially serious risks. It isabdominal surgery, requiring full anesthesia, intubation, and the needfor pain control. The potential side effects include injury caused bythe anesthesia, infection, and perhaps even death. Add in the fact thatmenses is not an illness and, indeed, that it can be controlled inprofoundly disabled women with periodic injections, the cutting out ofa healthy organ seems wholly unwarranted. (Some have suggested that thepoint was to prevent pregnancy in the event of rape. But if preventingpregnancy was the point, there are many less intrusive methods ofaccomplishing that goal.)

Keeping Ashley small viahyper-injections of estrogen seems, on the surface, the mostjustifiable action taken in Ashley’s case. After all, it is undeniablethat a 75-pound helpless girl — Ashley’s current weight at age 9 — isfar easier to care for than an adult-sized woman of, say, 125 pounds.Indeed, there is no denying that keeping Ashley “small” could be thedifference between her remaining at home and one day having to beadmitted into a care facility.

On the other hand, according toDrs. Gunther and Diekema, using high-dose estrogen injections as amethod of keeping a child from becoming normal-sized is utterlyuntested and unproven. (Estrogen injections have only been previouslyapplied to keep girls from growing abnormally tall — itself anethically dubious “treatment.”) Thus, the physicians write that they”can only speculate” about how much Ashley’s growth will be attenuated.(They estimate that starting estrogen in a 5-year-old boy would resultin his being two feet shorter and 100 pounds lighter as an adult thanotherwise would have been the case.) They also admit that the potentialbeneficial and deleterious health effects are “difficult” to assess”because we have no direct experience with high-dose estrogen treatmentin young children.” This raises the worry that Ashley was used as thesubject of unethical human experimentation, a concern heightened by thedoctors’ acknowledgment that Ashley’s Treatment “is a novel, untested,medical intervention.”

Does Motive Make a Difference?
Even if what the parents and doctors did was wrong, some assert that their beneficent motives somehowmake it right. Let us concede that the parents — to their great credit— love Ashley deeply and want only to be able to keep her snuggled inthe bosom of her family. And let us also stipulate that the doctors hadthe best interests of Ashley foremost in mind when deciding on theprocedure — a decision which was made in consultation with the SeattleChildren’s Hospital Ethics Committee and others — firmly believing thattheir interventions would improve the quality of her life.

But what we do matters more than whywe do it. To
illustrate the point, consider this somewhat crude andinexact analogy (which I don’t intend as a cruelty): Parents in somecultures subject their daughters to female circumcision motivatedsolely by love in the firm belief that the procedure is the only way toguarantee their daughter a future husband and the security of marriage.Despite their virtuous motivation, most of us still justifiablyconsider the practice to be inexcusable genital mutilation.

Orconsider this: If Ashley had been older and the only way to keep hersufficiently diminutive to be a “pillow angel” was to amputate herlegs, would that justify such surgery? And what if parents and doctorsdecided that keeping a profoundly disabled boy sexually immature wouldadd to the quality of his life and ease of care: Would these gooddesires justify his castration? And what about the other end of life?People with Alzheimer’s tend to wander, making it extremely difficultto care for such patients at home. Would cutting their nerves so theycouldn’t walk thus become acceptable?

Taken in whole and inpart, Ashley’s treatment seems unethical, unwarranted, and excessive.The high-dose estrogen treatment is untested in children Ashley’s age,with potential adverse effects consequently unknown. Removing hermammary glands seems utterly unjustified. The hysterectomy risked herlife without providing a therapeutic benefit otherwise not generallyobtainable. Thus, it is hard to argue with the California-basedDisability Rights Education and Defense Fund press releasethat decried Ashley’s Treatment as violating the “non-negotiable”principle “that personal and physical autonomy of all people withdisabilities be regarded as sacrosanct.”

What to do? Thismatter is too important to be left to parents and local ethicscommittees. As the disability rights group Not Dead Yet pointed outin calling for a halt to any further applications of Ashley’sTreatment, “Ethics committees are not a substitute for theconstitutionally-guaranteed right of due process. In fact, they oftenact as an end-run around those protections.” At the very least, theentire matter should be independently investigated by a professionaltask force, a government agency, or both. The purpose would not be topunish Ashley’s parents or doctors, but rather, to ensure that no otherdisabled child is subjected to non-therapeutic surgical and hormonalinterventions to “improve the quality of their life” until the matterhas been fully evaluated as to ethical propriety, safety, and efficacy.

BeyondAshley’s case itself, we should also act positively to better helploving and big hearted families care for their disabled children intoadulthood. For at the heart of this controversy is the abiding problemthat people like Ashley’s parents often struggle alone. As thebioethicist Art Caplan aptly put it:”The problems Ashley and her parents face are terribly real. Butpermanently freezing a person into childhood is not the solution.Families like Ashley’s need more help, more resources, more breaks fromthe relentless pressure of providing care and some hope that theirdaughter can be somewhere safe and caring after they are gone.”

— Wesley J. Smith, a frequent contributor to NRO, is a senior fellow at the Discovery Institute and a special consultant to the Center for Bioethics and Culture. His website is www.wesleyjsmith.com.