Tuesday, May 24, 2016

Survival Needs and Growth Attenuation Therapy: Do They Signal a Need for a “Dependency Ethics”?

By John Banja, PhD

In 2006, the world learned about a child born with profound and life-long cognitive and physical disabilities who had undergone growth attenuation therapy (GAT) four years previously [1]. Called “Ashley” in media reports, she not only received the GAT—which consisted of administering high doses of estrogen over the span of a few years so as to staunch her physical growth—but she additionally had a hysterectomy, removal of her breast buds and an appendectomy. In response to international outrage that the child suffered these “mutilations” because she was disabled, her parents argued that these interventions would enable them to take better care of her, especially as she aged.

Image courtesy of Pixabay
GAT is back in the news with a New York Times magazine article [2] appearing March 22nd and an empirical study on parental perspectives recently published in the Cambridge Quarterly of Healthcare Ethics [3]. Children who receive GAT have an intellectual capacity that will likely never exceed that of a 1 year old, and they require 24 hour a day care throughout their lives. GAT typically consists in their receiving daily doses of estrogen between ages 3 and 6. The estrogen stimulates the premature closing of the growth plates or cartilaginous structures occurring at the ends of the long bones in their legs and arms, resulting in some reduction in height. About 75 percent of parents who choose GAT for their children do so because they are the child’s primary caregivers, and they justify their treatment decision in light of its facilitating both their and their child’s quality of life [2]. One parent was quoted as saying, “My daughter is trapped in a wheelchair all her life, and she’s more comfortable…We brought her out of her chair and into our laps…She needs to be in our laps for our whole life” [2]. Alternatively, disability rights advocates repudiate GAT as a violation of the child’s bodily inviolability. They insist that these children have an inherent right to grow and thrive into adulthood, and they vigorously condemn GAT as a victimizing and infantilizing intervention [4].

Different people view the world in different ways, and the contrast between GAT proponents and opponents is remarkably stark. GAT proponents represent a mix of utilitarian, pragmatic, and quality of life concerned people. They believe that GAT maximizes their children’s pleasurable experiences, which count more than intellectual ones; they argue that their children’s life-long dependency prompts very reasonable concerns about caregivers’ needs and burdens; and they argue that if GAT therapy in fact enhances the child’s enjoyment of the world, it also enhances the child’s enjoyment of his or her civil or human rights [3]. GAT opponents, on the other hand, are much more deontological and disability rights oriented. They champion the child’s natural entitlement to his or her bodily integrity which they believe GAT violates; they point out that GAT is a medical intervention that “abuses” children for the sake of their caregivers’ comfort (recalling the eugenics movement of the early 20th century); and they argue that overall, society and parents should adapt to these children rather than the other way around [3,4].

It seems inarguable that both groups deeply care about these children, which prompts the inevitable question about which side has the stronger argument. As with all authentic ethical dilemmas, this one pits a right against a right. Each side can call on principles and considerations that are morally compelling and about which respectable and responsible points of view can differ. While bioethical argument sometimes gives the impression that there are slam-dunk answers to trenchant bioethical quandaries waiting to be discovered, as a matter of sociological and historical fact, our bedrock bioethical constructs like informed consent, privacy and confidentiality, end of life policies, and women’s reproductive rights were decades in the making. While theoretical constructs were essential in formulating and arguing for these positions, real life experiences were needed to shape their implementations, evaluate their outcomes, and decide how to move forward. And even then, attitudinal and cultural currents alter people’s ethical sensibilities such that for certain of these cases—especially ones for which we lack traditions or precedents—there may be no final narrative or conclusive moral remedy.

And this is a problem for GAT: GAT is only about a decade old and there appear to be less than 100 recorded cases. Because of its controversial features including its being a “last resort” therapy, neither physicians nor their institutions are eager to discuss their experiences with it, so securing research data is challenging. Also, the long term risks of GAT are unknown although side effects such as the development of ovarian cysts, amenorrhea, hyperprolactinemia, breast tissue stimulation and thrombosis have been observed [2]. Moreover, GAT is not FDA approved but constitutes an off-label use of estrogen. But even then, a rigorous FDA trial would require years and might result in federal regulations restricting GAT’s use—an outcome that worries GAT proponents.

Some children with disabilities require an enormous
amount of care; image courtesy of Wikipedia.
Still, a long-term, data driven approach may be one way towards settling the ethical problem. If the morally correct argument or position is the one that wins out in the long run—as I believe Richard Rorty opined—then we can track and ask GAT parents over the next decade or two whether they have found it the right thing to do and whether they would recommend it to others. If they overwhelmingly answer in the affirmative and can convince us that GAT has immeasurably improved their and their children’s quality of life, then GAT opposition would seem to lose much of its force, not to mention seem unreasonably demanding given the caregiving burdens these children’s survival needs present.

And it is on that note of survival needs that I’ll end. While disability advocates represent GAT as an appalling civil rights violation, I rather think they ignore the idea that not only do caretakers have a right to relieve themselves of as many burdens as they reasonably can, but that the frankly enormous extent of these children’s neediness may recommend a consideration of something we might roughly term “dependency ethics”—that is, not an ethics of welfare involving remedies for income or opportunity inequality, but rather admitting a moral platform that justifies and accepts reasonable limits on caregiver duties and obligations, especially towards persons whose sheer survival requirements make enormous demands on a group’s resources and energy. The tone of such a proposal may sound cold or the beginnings of a slide down a slippery moral slope. But when an individual’s survival needs require a tremendous degree of external support—especially in instances where that individual has very little if any ability to contemplate his or her experience of the world but only an ability to feel that world as pleasurable or painful—I cannot help but think that our sensibilities about the welfare of those individuals’ caregivers should be proportionately heightened. (As for the children themselves, there is no convincing quality of life data as yet to recommend or reject GAT [3].)

A colleague reading a draft of this blog wondered “what would be lost” if the empirical, utilitarian oriented approach I’m advancing would take hold or at least seem worth a try. Most importantly, I think what would be lost (or overwhelmed) is the moral sensibility that seeks to protect the physical inviolability or integrity of persons like Ashley. Yet, in the most practical sense, does it make sense to lament GAT as a loss to Ashley and persons like her if they can never represent or contemplate that loss? The fact that they have a robust sensorial life but not an intellectual one suggests that the quality of their lives be located within the sensorial experience they can have and appreciate, rather than an ideological one they can’t.

Clearly, situations that present the possibility of a GAT intervention are anguishing and remind us of life’s fragility, which is why we don’t like to think about them. To the extent, though, that contemporary technology can enable these children’s survival presumably into old age but has not developed easy and inexpensive ways to prevent the occurrence of their disabilities, we are left with having to create clinical and social responses that are morally acceptable. With respect to GAT, we seem to have entered a middle phase, having at least articulated the basic battle lines around which GAT proponents and opponents will huddle. If I’m right, this second phase will witness an evolving observational/empirical experience with GAT, unless genetic technologies progress to the point where these cases become even rarer and ultimately drop off the national radar screen. That seems unlikely to happen anytime soon, though. In the meantime, perhaps the idea of “dependency ethics” deserves some further discussion and analysis.

References

[1]  Gunther DF, Diekema D. 2006. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatric & Adolescent Medicine 160(10):1013-17.

[2]  Field G. March 22, 2016. Should parents of children with severe disability be allowed to stop their growth? New York Times magazine. Available  here.

[3]  Kerruish N. 2016. Growth attenuation therapy: Views of parents of children with profound cognitive impairment. Cambridge Quarterly of Healthcare Ethics 25:70-83.

[4]  Kittay EF. 2011. Forever small: The strange case of Ashley X. Hypatia 26(3):610-631.

Want to cite this post?

Banja, J. (2016). Survival Needs and Growth Attenuation Therapy: Do They Signal a Need for a “Dependency Ethics”? The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/05/survival-needs-and-growth-attenuation.html

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