The public's attention is drawn nowadays to "growth attenuation" as applied to a 6-year old girl. The intervention consisted of high doses of estrogen and a hysterectomy. The girl cannot sit up, walk, or use language, receives nutrition through a gastrostomy tube inserted into her stomach, and has some degree of intellectual disability.
She vocalizes and responds to other people's care-giving and affection, is alert and aware of her environment, seems to watch TV, loves music and seems to "conduct" when listening to it. It seems that she can communicate her basic needs and feelings. The parents and medical staff intended to reduce the chance that the girl would be placed out of her parents' home by making it easier for her parents to care for her at home.
We do not presume to judge the parents or physicians in this particular case. As a case study, however, the case raises complicated issues for us (the Turnbulls are parents of a man with disabilities, and all of us are researchers).
Why must an unusual medical intervention be even considered for the family who wants to keep their child at home? It shouldn't, at least not until all efforts to provide support to the family, in its home, have been exhausted. Good policy begins with family support.
Further, assistive technology - lifts, specialized bathing units, etc. - are readily available. Good practice begins by using current technologies, not unusual medical interventions.
Beyond support and technology, constitutional issues arise out of growth attenuation, which alters a person's very self. Should this unusual intervention be imposed by parents and physicians on minors or others unable to consent to it? To answer the question, one must address tough legal issues.
Each of us - including minors and those with disabilities - has fundamental rights to personal autonomy (the right to consent), reproduction and intimate relationships (contraception, abortion and gender-choice relationships), and freedom from harm. For people with disabilities, these liberties lead to rights not to be involuntarily sterilized, to marry, to have access to medical treatment, and not to be segregated from nondisabled peers.
None of those rights is absolute, so constitutional law requires parents and professionals to exhaust the least restrictive or least drastic alternative before depriving a person of a right. Was that doctrine applied here? We don't know, but it should be applied in all decisions about people with disabilities.
Further, the child has a right to due process. Normally, that consists of a right to be represented by an independent advocate, preferably a lawyer because of the legal issues involved, whenever interventions might limit a person' rights. Do hospital-based institutional review boards assure that the patient (here, the child, not the family) has a competent lawyer representing him or her? If the board consists only of professionals in four different sub-specialties of pediatrics and in ethics, the answer is no. Fair procedures tend to produce fair results. Unfair ones tend to produce unacceptable results.
We must presume that parents are effective and aggressive advocates for their children (as we assume the parents are in this particular case). But, given that they will benefit from the intervention and have sought it for that reason (and for their child's sake), are they in a position to research the alternatives to the intervention and resist an institutional review board consisting of peers of the professionals who will perform the intervention? It is doubtful. Conflicts of interest and power imbalance require independent advocacy for the child.
Due process also addresses the nature of the evidence: Are social workers who know about family support involved as members of the committee or as consultants? Where are the professionals who know about communication, special education, assistive technology, mobility, personal hygiene and issues other than the "risk-benefit" of medical interventions? Fair procedures entail a broad array of evidence.
Without procedural due process, the risk of error increases. The risks include those associated with the surgery. Two standards guided the physicians in this case.
One was that this case and subsequent ones should be decided on a case-by-case basis. Due process prefers presumptions, not unguided case-by-case decision-making. At law, a presumption (innocent until proven guilty) pushes decision makers toward a pre-established, socially desirable result. Usually, the presumption can be overcome by sufficient proof (guilty beyond a reasonable doubt).
Case-by-case decision making, without any presumption against surgery, much less such an unusual one as growth attenuation, gives free rein to the physicians and institutional review boards. History teaches that unchecked professional freedom leads to over-use of procedures whose long-term efficacy is unknown or is demonstrably injurious.
The second standard was the usual one of medical risk-benefit. Here, questions arise. What are the long-term benefits of growth attenuation surgery? Will the procedure definitely reduce the child's weight? Will it produce no undesirable effects? Clearly, the surgery will not prevent the parents from aging or necessarily lead to better and longer-term in-home care.
The concept of due process relates to more than "merely" fair procedures. It also requires decision-makers to determine whether an individual can give consent or at least assent to an intervention. If the person cannot, due process requires consideration of the standard by which surrogates decide for others (parents for children and wards for guardians) - namely, short- and long-term benefits, as reasonably determined by qualified professionals using only empirical data. Finally, due process requires an inquiry into whether the individual would want the surgery if she were competent to make that decision and take into account the fact that she has a disability.
Standing in another's shoes
One of history's lessons is that evidence-based decision-making by those who purport to act in another's best interest has been elusive. Another is that it is exceptionally difficult to stand in the shoes of a person who is a minor with a disability and predict what that person would want, especially where the person's life has provided no warrant - no evidence - about what the person would want.
Further, disability is a condition that society creates by its failure to accommodate to people with impairments; impairments are the inherent conditions that affect a person's functioning. Stigma - the negative connotation arising out of difference (such as impairments) - still drives decision-making.
Parents' efforts to keep a child as a child may reflect their fear that society will be hostile to the child when the child becomes an adult. The child may evoke different responses than the adult who is demonstrably quite different than other adults, even those with disabilities. Invariably, parents and members of professional teams assisting them reflect the culture in which they have grown up. Predictably, they project that same culture - often an inhospitable one - on people with disabilities.
Only by confronting the unwelcoming culture and celebrating the difference that culture deems unacceptable has progress been made for people with disabilities and their families. Less able is not less worthy, and the more often that message rings loud and clear, the more will less able will not imply less worthy.
Beyond the case of growth attenuation lie two new frontiers. One is neurology and the other involves human-genome alterations. Both can involve fundamental alteration of the inherent or "given" physical or psychological condition. Both are likely to become increasingly common.
What is ethically right? What should public policy condone or condemn when fundamental alterations of the given-self are possible through science? At what point (if any) should our technological capacities wait upon our development of ethical-theological, legal, and cultural responses, or should technology proceed without regard to those responses? The questions then devolve into legal ones, some of which we have discussed briefly above.
Quality of life
Finally, growth attenuation, like neurology and genomics, is justified as a technique for enhancing the quality of life of a person or family or both. Quality of life changes as the family changes and as supports and technologies change.
Many years ago, physicians seeking to establish a guide for their peers in deciding how to proceed with newborns - the "Baby Doe" children -who have significant birth anomalies proposed a quality-of-life approach. They argued that quality of life equals the person's natural endowment plus the sum of the contributions to the person by home and society. When the seemingly objective or mathematical formula produces a low score, withholding or withdrawal of treatment was justified.
That approach makes scientific that which is basically ethical, theological, or policy-related. History tells us to be cautious about disguising issues.
The QOL formula also assumes that neither the person's natural endowment nor the contributions by home and society will change. Here, too, history proves that endowment and contributions do change, largely because technology, practices, and policies change. Predicting quality of life is problematic, especially for a person who is not at the end of life's course and for the person's family.
At the Beach Center, we seek to make a significant difference in the quality of life of individuals and families affected by disability. We look to the future. But we do so with a keen sense of the nation's discriminatory past and of how law can keep us from repeating it.