Unjustifiable Non-therapy: A response to Gunther & Diekma (2006), and to the issue of growth attenuation for young people on the basis of disability from The Board of Directors of the American Association on Intellectual and Developmental Disabilities.
As leaders of the American Association on Intellectual and Developmental Disabilities, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities, we have great sensitivity to the concerns facing parents of children with intellectual and developmental disabilities (IDD). They indeed face many extraordinary challenges as they strive to raise their children, and they should be provided with the supports and services they need to ensure that their children, as any other, have opportunities to achieve all that life has to offer. Naturally, these services and supports include medical and habilitation therapies. We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks.
Gunther and Diekema  have described a controversial intervention they initially provided to one patient, Ashley, a 6-year-old girl with profound and multiple impairments. They claimed that their approach was innovative and gave it the name “growth-attenuation therapy.” In our view, it is better named “ethics-attenuation intervention,” and we will refrain from referring to it even as a “therapy” in this letter. The AAIDD board issued a statement in 2007 that strongly disagreed with their position. In addition, the actions that they described were found to be in direct violation of the laws of the State of Washington (they are doctors practicing in Seattle, WA). However, they continue to promote their intervention and suggest that, although their actions were found to be illegal in the past and although they have been roundly denounced by many parties and although they offer no solid evidence that they provide an intervention that offers greater benefits than costs to the individual patient, others should adopt this as routine policy and procedure for children with IDD.
We offer this updated policy statement with a brief review of their proposals, followed by three main arguments against adopting them as policy. The first argument deals with the lack of solid evidence to support their position (even 6 years after their original claims). The second argument deals with the way in which they have inappropriately framed their ethical arguments within the current bioethical standards (this is a continuation of our original position and is supported by many, including Brosco and Feudtner ). The third argument addresses the larger issue of idea ethics and respect for autonomy related to individuals with IDD.
The intervention consists in giving a young girl high doses of estrogen and progesterone to chemically alter her growth patterns to force her bones to fuse (and therefore stop growing) abnormally early. This would lead, theoretically, to a smaller adult size, which would also theoretically lead to increased ease of care for individuals who are subjected to this intervention, which would theoretically lead to their staying in a family’s home for a longer period of their adult lives. Interestingly, in an era of “evidence-based-medicine” (EBM), Gunther and Diekema offered no evidence that their initial subject to this intervention, or any other child, would actually benefit. To our knowledge, there have been no studies of this process that have found that their interventions have lead to an increase in the amount of time a young person remains in a family home. There have been no studies that have tracked any other outcomes, including medical complications, perceived self-efficacy (of the person or family), impacts to the medical providers (famously, one of the authors of the first paper later committed suicide), or any other downstream effects. They ask us to accept their very invasive intervention with the simple assertion that it will be effective in the manner that they suggest and will not lead to unintended secondary negative consequences to the person and the family. We are shocked that they would have the temerity to suggest such a therapy without a single study to support their claims. We would expect that they, like all proponents of innovative interventions, would study their proposals in Institutional Review Board–approved research methods prior to announcing them as good policy.
Medical history has had too many prior examples of misguided scientific “advances” that turned out not to actually be beneficial, especially related to individuals with IDD. The proponents suggest that there is a reasonable expectation of improved quality of life without any evidence to support their claims. However, the history of the medical establishment’s involvement in exactly these types of quality of life issues has, as noted by Brosco and Feudtner, led to the support of some very regrettable past policies (e.g., involuntary sterilization, lifelong involuntary institutionalization). Brosco and Feudtner also noted that risks of harm from this “heavy-handed” manipulation were unknown for this population, and this is an issue that begs for further amplification. Estrogen has hugely important actions. Even a cursory search of the literature shows that it influences things as wide ranging as immune system function and bone growth (e.g., Weitzmann & Pacifici), neuroprotection (e.g., Bryant, Sheldahl, Marriott, Shapiro, & and Dorsa), and hair follicle physiology (Ohnemus, Uenalan, Inzunza, Gustafsson, & Paus). Further, estrogen is metabolized within the central nervous system throughout life, and the negative effects of its depressed bioavailability on aging are well documented. Thus, this artificial manipulation may have many unforeseen consequences, and although optimism has its place, there is ample reason to suspect that some of these consequences will be deleterious.
Gunther and Diekema claim to be working toward a worthy goal: to ensure a higher quality of life for individuals with IDD through the avoidance of an eventual placement outside of their family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of the many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those needs throughout their adult lives. We also recognize the many challenges faced by physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. As the current leadership of the American Association on Intellectual and Developmental Disabilities, we view Gunther and Diekema’s intervention as a totally unacceptable option.
All physicians must recognize that the decisions they make will be colored by their subjective views of the status of their patients. In stating that there will be no significant future improvement from her baseline, Gunther and Diekema reveal that they and their colleagues recognize little potential for growth and development of this 6-year-old child. It is not, then, surprising that they find it “hard to imagine how being smaller would be disadvantageous to a person whose mental capacity will always remain that of a young child” (p. 1016). The abundant evidence that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated were not mentioned, and although we do not pretend to be as familiar with this situation as the treating physicians, we think that extant case histories of people with cerebral palsy incorrectly diagnosed as having profound intellectual disability should be recognized and discussed.
Brosco and Feudtner discussed the precedent setting potential for growth attenuation that can lead to misuse and that the intervention does not really address the core problems faced by families and our society regarding services and supports to affected individuals. These are additional excellent points with which we concur. However, they seemed to accept two critical assumptions that we do not. First, in discussing the potentially detrimental effects of growth attenuation, they argued that imposition of small stature might not be a concern if we truly accept the position of disability rights advocates that there is value in every human life and that the worth of a person goes beyond physical appearance. We certainly view people with disabilities as valued members of our society, but we fail to see anything in the disabilities rights movement to justify imposing constraints on anyone’s development. To argue this point grossly misrepresents the views of the disability community and turns logic on its head.
Second, Brosco and Feudtner seemed to implicitly accept the idea that growth attenuation is, in fact, a type of therapy. We question this critical premise. Given that therapy is intended to address a condition of a patient, the target in this case would have to be the growth and maturation expected as a consequence of Ashley’s normal development. Although there are many other treatments that target aspects of physical appearance, these seem qualitatively different from the present case. Although the closest parallel would be the past exposure of tall young women to high doses of estrogen to limit their height, we see this as a considerable stretch. It seems a bit desperate to refer to a practice that fell out of favor years ago (and would be viewed with extreme skepticism today) in defending these procedures, but even in those past cases, the intervention was provided with the assent of the patients and to address specific desires.
Clearly, assent was not obtained from this child, and there was no way to assess her willingness to have her body altered irreversibly. Brosco and Feudtner argued persuasively that growth attenuation has to be considered a procedure that has unknown risks and permanent consequences.
Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever-expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for caregiving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their “most admirable of undertakings.” However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved.
With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but the practice has even more troubling implications. By extension, if weight ever becomes a difficulty due to age-associated loss of strength for the parents (rather than obesity of the child), then the rationale would suggest that bariatric surgery or severe restriction in caloric intake would be a form of therapy. If that proves insufficient, the goal of reducing the size of the child could be addressed by “amputation-therapy,” justified by the fact that the patient would never be ambulatory in any event.
Should the child develop behaviors that increased the stresses of caregiving, then it should be perfectly acceptable to prescribe whatever dosage of psychoactive medication would be necessary to bring relief to the caregivers.
It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding an as-yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect, and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could still be, in 2012, a topic for serious discussion in any reasonable forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood.
AAIDD Board of Directors
July 11, 2012
1. Gunther, D., & Diekema, D. (2006). Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatrics and Adolescent Medicine, 160, 1013–1017.
2. Brosco, J., & Feudtner, C. (2006). Growth attenuation: A diminutive solution to a daunting problem. Archives of Pediatrics and Adolescent Medicine, 160, 1077–1078.
3. Weitzmann, M., & Pacifici, R. (2006). Estrogen regulation of immune cell bone interactions. Annals of the New York Academy of Sciences, 1068, 256–274.
4. Bryant, D., Sheldahl, L., Marriott, L., Shapiro, R., & Dorsa, D. (2006). Multiple pathways transmit neuroprotective effects of gonadal steroids. Endocrine, 29, 199–207.
5. Ohnemus, U., Uenalan, M., Inzunza, J., Gustafsson, J., & Paus, R. (2006). The hair follicle as an estrogen target and source. Endocrine Reviews, 27, 677–706.