Last Friday, I traveled to Seattle to attend the University of Washington symposium on growth attenuation treatment for children with “profound” developmental disability. This symposium was an update to the 2007 symposium that I have reported about earlier, and I came home more disturbed than I had anticipated.
The symposium was divided into two parts: first, organisers of Seattle Growth Attenuation & Ethics Working Group presented the outcomes of the Working Group’s discussions, then it was followed by a “group discussion” between panelists and the audience.
The Working Group was created three years ago when the controversy over six-year old Ashley’s hormonal growth attenuation (combined with illegally performed involuntary hysterectomy and mastectomy) surfaced. It included many scholars, lawyers, and at least one non-professional parent of a child with developmental disability, but no representative from the disability rights movement. Consequently, none of the panelists for the symposium were disability rights activists.
First speaker was Dr. Benjamin Wilfond (UW Professor of Pediatrics and Director of Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Hospital), who gave an overview of the entire panel. He began by remarking that the Working Group had “good fortune” to have “interesting and stimulating conversation” about the topic, and that despite some internal disagreements all Working Group members shared a commitment to improve the lives of persons with disabilities and their families. Further, Wilfond explained, everyone developed a sense of appreciation for compromises the Working Group was able to reach.
While Ashley went through a combination of treatments that her parents call “Ashley Treatment”–i.e. hormonal growth attenuation, hysterectomy, and mastectomy–the Working Group focused on the ethics of growth attenuation, as it was genuinely new approach to treating children with severe developmental disabilities (unlike hysterectomy, which has been performed on these children for many years), and potentially most in demand.
What are the criteria that must be met for a child to become a candidate for growth attenuation? According to Wilfond, most Working Group members agreed that the child would have to have very limited ability to communicate or to move her or his body, and require total care including feeding, bathing, and toileting. Further, while the child’s condition need not be limited to any particular etiology, but must be presumed to be permanent.
Conspicuously missing from Wilfond’s discussion is the degree to which the child’s intelligence needs to be hindered. Ashley was said to have the intellectual capacity of a three to six month old baby, so I had assumed that any future protocol on growth attenuation would make similar level of intellectual capacity a requirement. Maybe I’m missing something here, but all I heard was that the child is permanently non-communicative and non-ambulatory.
Under these criteria, Wilfond estimates that about 4,000 children would become candidate for growth attenuation treatment in the United States, or about one in 1,000. This is double the estimated number of children being recognised as intersex and considered for genital “reconstruction” surgery each year. Not all parents who are offered this option would go for it, so the actual number of children treated would be less than this, but it is still a surprisingly large number.
Most Working Group members felt “somewhat uncomfortable” about growth attenuation, Wilfond continued, but they were mostly willing to accept parents’ right to choose such an option under certain circumstances.
Next, Sara Goering (UW Assistant Professor of Philosophy and Program on Values in Society) spoke about four main areas of concern raised by the disability community. These were: 1) devaluing of people with disabilities; 2) inadequacy of social resources for people with disabilities and their families; 3) risk of broader use; and 4) risk of stigmatisation. In other words, Goering was addressing possible negative social impact of growth attenuation treatment.
First, Goering stressed that we must view disability community’s concerns in the historical context in which people with disabilities have been and continue to be deprived of autonomy and physical integrity, emphatically by state-sanctioned involuntary sterilisation programmes. The concern here is that regardless of parents’ intention, growth attenuation could be viewed as reflecting the low status of people with disabilities, and can perpetuate adverse social attitudes.
Some have argued that disability studies perspective is irrelevant to the population being affected by growth attenuation, Goering said, but most Working Group members acknowledged that there are links between the treatment of people with milder forms of disabilities and those with “profound” developmental disabilities. Therefore, any protocol for performing growth attenuation therapy must involve disability studies perspective in some way.
The next question is the degree to which the demand for growth attenuation is the result of the inadequacy of social resources and services for people with disabilities and their families, and how wide-scale adaptation of growth attenuation treatment might exacerbate the problem. If growth attenuation could reduce the cost of providing care to people with profound developmental disabilities, then public funds could be redirected to promote the treatment, which in turn would take away funds from services to those who did not receive growth attenuation.
I feel that this threat is real and important, but Goering suggested dismissively that she was not certain that growth attenuation would reduce cost, and if even if it did that would not be a problem unless one finds growth attenuation unacceptable on principle to begin with. Her argument sort of reminds me of Slavoj Zizek’s re-telling of the broken kettle logic: I never borrowed the kettle, I returned the kettle in good shape, and the kettle was already broken when I borrowed it.
Next, Goering also dismissed the concern that, once accepted, growth attenuation would be applied to a broader range of children with various disabilities, such as those with Down syndrome or profound physical (but not developmental or cognitive) disabilities. The Working Group opposes broader use of growth attenuation for these cases, as it views one’s communicative ability to be the key criteria. With the development of clear eligibility criteria, Goering argued, the slippery slope could be prevented.
Finally, Goering considered the risk of stigmatisation to children whose growth is attenuated. She pointed out that people with unusually short stature are stigmatised in our society, but that may not be an issue among the population in question. She also pondered on the possibility that families could be stigmatised by their decision to choose growth attenuation for the child, but once again families with a child with profound developmental disabilities are already stigmatised.
In conclusion, Goering acknowledged that the larger disability community has legitimate concerns, but they are not significant enough to override the benefit growth attenuation presents to families with a child with profound developmental disabilities.
Dr. Doug Diekema (UW Professor of Pediatrics and Director of Education at Treuman Katz Center for Pediatric Bioethics) spoke next about the interests of the child whose growth is being attenuated. First, he considered the argument that having growth medically limited might disadvantage the child. Diekema explains: normal to above-average height is associated with healthy self-esteem and high social standing in our society, so being unusually short is a major disadvantage in life. That said, these issues are not likely to be relevant for the population being considered for growth attenuation, as these children lack social capacity to enjoy benefits of normal stature.
Then Diekema lists potential advantages of remaining small: a smaller person is easier to take care of, increasing the likelihood the child receives good daily care. A smaller body is easier to transport, which makes it easier to involve him or her in family activities outside home, such as walks and vacation trips. As the parents age, these advantages would translate to longer period of time they can live with the family instead of being shipped to a facility. There may also be some medical benefits too, such as less likely to be dropped by accident and injured. In short, Diekema stated, growth attenuation may not be necessary to meet goals of happy, integrated lives, but it makes it easier to do so.
In response to the argument that growth attenuation violates the child’s bodily integrity, Diekema raised a thought experiment: short stature could result from an act of omission, such as certain medical problems that are not treated, or from an act of commission, i.e. growth attenuation. If the endpoint is the same–the child remains unusually short–are there meaningful ethical differences? Diekema does not think so.
Diekema also discussed if the amount of attenuation might affect our ethical judgment. For example, is the final height of 2 ft. as opposed to 4 or 5 ft. acceptable? Also, is it just the final height that matter, or how much shorter the child is than she or he would have been otherwise? Many Working Group members felt that a large change in the final height would be a violation of the child’s dignity, as it is disrespectful to who the child is.
On the topic of dignity: there are two competing basic philosophies concerning human dignity: first view holds that dignity is inherent in all human beings for simply being human; the second, as expressed by philosopher Peter Singer, argues that dignity is accorded for the possession of some essential characteristics, such as being sentient or self-aware. Most members of Working Group accept the first theory; Diekema pointed out that Christian tradition also supports the first view.
The question then becomes: how do we respect a profoundly disabled child’s dignity? Some people feel that growth is a fundamental part of being human, and therefore is necessary to preserve one’s dignity; others suggested that being part of the community was more important, and growth attenuation could help facilitate it.
Finally, Diekema recognised that accuracy of medical prognosis was a major concern for any growth attenuation procedure. In addition to diagnosis, we need to be certain about the permanence of the condition, as well as the child’s capacity, especially her or his ability to communicate. The child would have to be at least 3-4 year old for the doctors to be sure about the prognosis, Diekema explained, and the treatment should be done before age 6, according to “the endocrinologist who was with us” (Ashley’s endocrinologist Daniel Gunther has committed suicide since last symposium).
Next, Denise Dudzinski (UW Associate Professor of Bioethics and Humanities) spoke about parental decision-making and oversight. In general, we allow parents to make many decisions on their children’s behalf, except when there is a risk of serious harm that is not justified by the corresponding benefit. In the medical setting, providers can refuse to provide requested interventions, but otherwise give deference to the parents.
Parents’ motivations for requesting growth attenuation vary, but parents’ interests are often intertwined with children’s interests. FOr example, both may enjoy family and social activities together outside the home, and growth attenuation might help make it happen more readily. Parents also must balance the interests of the child’s siblings and other family members, as well as their own because parents’ interests also count, Dudzinski said.
Sometimes, parents may appear to be pursuing their own interests, such as when they request growth attenuation to reduce their own burden, but it may still result in positive effect on the child. Dudzinski urged doctors to respect parents’ special knowledge and insight and to view them as partners in providing care to the children with disabilities.
Dudzinski then spoke about the “robust” informed consent procedure which parents should go through before growth attenuation is performed. Informed consent generally requires the patient’s willing acceptance of the treatment after a full disclosure and understanding of potential risks and benefits, but in this case we must be particularly mindful of the history of involuntary sterilisation that parents obediently “consented to” on behalf of their disabled children.
A “robust” informed consent must provide a balanced information, such as that benefits and risks of growth attenuation is still debatable, and a referral to other parents who made various choices. Dudzinski also stated that medical professionals need to make parents aware of social and historical context surrounding the treatment, including a sheet explaining disability activists’ opposition to the procedure. Dudzinski compared this to the guidelines being promoted by intersex activists and allies for parents of children with intersex conditions, or disorders of sex development.
As for oversight, there are two main routes: judicial review involving guardian ad litem, or internal ethics committee or consultation services. The court is often uncomfortable about and ill-equiped to rule on such private medical matter, and many physicians are uncomfortable about getting directions from the court, Dudzinski said. Instead, she argued, an ethics committee involving a variety of perspectives, including that of disability studies, could be employed to make recommendations on case-by-case basis.
Dudzinski also promoted the idea that research could provide an additional layer of oversight. The very process of research itself would require institutional review board and scientific review of protocols; in addition, it would allow us to make better decisions in the future. The research could employ prospective approach, or a creation of registry for growth attenuation cases.
The last speaker was Paul Steven Miller (UW Professor of Law, Director of Disability Studies Program), who reiterated Wilfond’s declaration that everyone in the Working Group worked together to improve lives of people with disabilities, respecting contrasting perspectives and appreciating the need for moral compromises. Growth attenuation is ethically appropriate and defensible, Miller said, but there needs to be safeguards. Providers should not go forward with growth attenuation simply because it is available and requested, and consider each case individually.
These safeguards come in three parts: clear eligibility criteria, robust informed consent procedure, and oversight. Further, research on outcome as well as scholarship on social impact of growth attenuation must continue, as does advocacy for persons living with disabilities. With this, an open discussion period began.
First, a mother of a grown child with autism took the mic. Her question: how can you rule out the possibility that advances in medicine might change the child’s disabilities? Diekema answered that realistic future progress must be taken into consideration, but it must be balanced with the benefit the family would be missing while waiting for the medical advances.
A pediatrician came up next, asking if there have been any other case reports, and if so what the impetus was for this treatment. Diekema disclosed that he had heard from several other doctors who performed growth attenuation therapy, and reported that all cases have gone well, and all parents are happy so far. As for the impetus, doctors used to routinely used hormone treatment to limit the growth of daughters of tall parents back in 1950s and 60s (when tall women were considered unmarriable), so there was plenty of data available. It was not so far-fetched to attenuate growth of profoundly disabled children using the same technique.
Next questioner, a psychologist, brought up two main questions: 1) what have other ethics committee decided in other growth attenuation cases, and 2) when the criteria restricts the treatment for “profoundly” disabled children only, it appears that these children are devalued in comparison to those with milder forms of disabilities.
Diekema replied once again, saying that ethics committee at other institutions also evaluated the proposed treatment carefully, and reached the conclusion similar to the Seattle Children’s. He further stated that at least two of them took place at major research university hospitals, each taking a year deciding on it.
As for the reason growth attenuation is offered as an option for children with certain forms of disabilities and not others, Diekema stated “regrettability” was a factor. By that, he meant that children who can develop enough intellectual capacity to regret the treatment he or she received should be spared from it. But since degree of intellectual capacity was not officially part of the eligibility criteria, I find Diekema’s comment confusing.
It appears to me that doctors are trying to have it both ways: when arguing why growth attenuation benefits the child, they talk as if the child is intelligent enough to understand the surrounding and enjoy being in the community; and yet, when people express concern about the negative social impact of the treatment, doctors dismiss the concern by suggesting that these children lack the capacity to feel harmed by it.
Diekema however seems to think that people with milder forms of disability are missing out: he stated that the strict eligibility requirement may be depriving beneficial treatment option from some people with disabilities, but he would rather “err on the side of caution.” Unfortunately the eligibility requirement does not appear to be that strict, or Dr. Diekema is that cautious.
Next, we had a pediatric neurologist or something, who raised the philosophical point that omission and commission are not morally equivalent. Being a philosopher, Goering replied that they were not equivalent when there is an element of uncertainty, but the difference becomes miniscule when the consequence of omission and commission are certain. Diekema also adds that doctors could harm the patient by not doing something, so the Hippocratic oath of “first, do not harm” can apply to both omission and commission when the harm is imminent. I’m not sure how I think about this, but such abstraction does not seem to be very helpful in our current discussion.
There were nobody at the mic, so I went up next, with two questions. First, I expressed how disturbed I felt about the media’s use of the term “pillow angel” to describe Ashley and other children who have been treated with growth attenuation therapy, and asked how the panelists felt. I mentioned that from parents’ perspective it was meant to be a term of endearment, but when it is adapted by the media as a general term to refer to someone whose growth is attenuated, it seemed to perpetuate the unwelcome infantilisation of people with disabilities.
Goering initially stated that it was parents’ prerogative to call their child whatever they like, but acknowledged that it might become a problem when the media popularises the phrase as a general term. She also shared concern about the infantilisation of people with disabilities, including those who receive growth attenuation treatment, and stated that parents’ motivations may vary but a robust informed consent procedure would ensure that parents understand that their children age and grow even if their stature remain small.
My second question was about the difference between judicial review and internal ethics committee. One of the key differences between the two is that in the judicial review, for example for obtaining permission to perform hysterectomy on a minor, an adversarial proceeding is required. That is, the court appointed guardian ad litem for the child is obligated to oppose the procedure, rather than vaguely standing up for what she or he happens to think is in the best interest of the child. The judge, hearing arguments both for and against the procedure, makes the decision. I asked if it might benefit the ethics committee proceeding if it were to incorporate adversarial structure in it similar to the judicial review–for example, by hiring a disability rights lawyer to make the best possible argument against the procedure.
Wilfond and Miller explained that the ethics committee can balance different perspectives without adversarial proceeding by ensuring diversity among its composition. Wilfond in particular said that it took him a while, but he had come to appreciate the role of disability studies perspective in his experience within the Working Group. But the problem is that no disability rights activists were invited to be part of the Working Group or the ethics committee for that matter, and the presence of some Ph.D.s and J.D.s with “disability studies perspective” were used as a smokescreen to mask the exclusion of disability rights activists.
Disability theorists such as Miller and Adrienne Asch, both of whom were part of the Working Group, might be able to provide alternative, critical perspectives on disability, but they are not substitute for dialoguing with disability rights activists. Even as Wilfond, Dudzinski and others continued to stress the validity of disability rights activists’ concerns, they had failed to invite a single activist to be on the Working Group or panel. I did not see any activists among the audience either, as they had so thoroughly excluded them, while paying lip service to activists’ concerns and to the importance of “disability studies perspective.”
After that, several mothers of children with developmental disabilities spoke out, many of whom had valid points. One woman said that when her disabled daughter grew larger than 4 ft. her dad could no longer lift her on his shoulder and take her out to a walk. A couple of women expressed understandable frustration at disability studies scholars who kept saying that more funding for services would solve the problem, while they wait many years with little help.
And even if resources were to magically appear tomorrow, it still won’t be enough: care providers and assistive technology can be helpful, but even in ideal circumstances they are not the same as being able to be alone with just family members, lifting the child with one’s own hands. Disability studies assumes that disadvantages faced by people with disabilities can and should be remedied by social change, but parents are suspicious of disability theory because they see a real weakness of this proposition. And they view growth attenuation is the solution.
Which is why I feel conflicted about the whole issue, and I am willing to accept that growth attenuation is not an absolute evil per se. But I fear the social and political impact of the wide-scale adaptation of growth attenuation as an ordinary part of contemporary society, with more children undergoing hormonal restructuring of the body for having developmental disabilities. I fear that what may be utility-maximizing on an individual level may, in aggregate, lead to a society where bodies are shaped for the sake of convenience. I fear that people with disabilities would be further pressured to reduce the burden they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the criteria for eligibility. And disability rights activists are virtually excluded from the whole process!
But this all seems inevitable now, and I’m not sure what we can do to limit the use of growth attenuation… Any ideas?
(Hey people by the way… My one-day trip to Seattle cost me about $80 and that’s a lot of money for me since I have very limited income… If you like what you see here, I’d appreciate it if you could chip in a little (paypal to emi at eminism dot org). Also, if you are in college, please try to get some student organisation or department to bring me out to speak there.)