Growth Attenuation Therapy

Abstract

The "Ashley treatment" has provoked much debate and remains ethically controversial. Given that more children are being referred for such treatment, there remains a need to provide advice to clinicians and ethics committees regarding how to respond to such requests. This article contends that there is one particularly important gap in the existing literature about growth attenuation therapy (GAT) (one aspect of the Ashley treatment): the views of parents of children with profound cognitive impairment (PCI) remain significantly underrepresented. The article attempts to redress this balance by analyzing published accounts both from parents of children who have received GAT and from parents who oppose treatment. Using these accounts, important points are illuminated regarding how parents characterize benefits and harms, and their responsibilities as surrogate decisionmakers. This analysis could contribute to decisionmaking about future requests for GAT and might also have wider relevance to healthcare decisionmaking for children with PCI.

Growth attenuation therapy for children with severe physical and cognitive disability: Practice and perspectives of New Zealand paediatricians

“…It is likely that requests for GAT will continue as families gain awareness of GAT through the media, internet and support groups. There are currently no legal or clinical guidelines for GAT in NZ, and controversy surrounding GAT remains, involving issues of disability rights, parental autonomy and the best interests of the child . Different countries and even different clinicians take different approaches to managing the tension between the differing viewpoints on GAT .…”

“…Guidelines would then help ensure that decision making is consistent with current medical knowledge as well as relevant legislation and policy, for example, the section on bodily integrity under development in the NZ Disability Strategy, which could potentially require a court order for therapies like GAT in the future . Clearly, this remains an area of ethical controversy, with multiple articles addressing this issue . One possible ethical framework that may assist in the development of guidelines is the ‘zone of parental discretion’, which permits parents to make the final decision on treatment for their child unless the decision would cause a significant setback to the child's well‐being .…”

“…Nevertheless, several respondents in this study expressed concern about the child's best interests, particularly with regard to bodily integrity. Some counterarguments to this concern are that GAT would facilitate rather than restrict development of a severely disabled child to his or her potential and that GAT can improve quality of life, which could arguably be more important to a child's well‐being than bodily integrity . Related to this, however, is the subjective nature of ascertaining whether cognitive and physical disability are severe enough to justify GAT; this issue merits further discussion as the number of children undergoing GAT increases.…”

“…3 Subsequently a small number of parents in New Zealand (NZ; precise numbers unknown) and worldwide (>100) have pursued similar treatment to allow them to continue to provide long-term care for their children at home rather than institutional care. [4][5][6] Despite these perceived advantages, there is considerable ethical controversy regarding GAT, with opposition from advocates for the rights of people with disability and some health professionals. 3,7 Contentious issues involved with GAT include: determining what is best for individual disabled children; the extent to which parents, doctors or even courts are entitled to make these decisions; and the threshold of cognitive and physical disability that might qualify a child for GAT; some sources have recommended that GAT should only be considered for children with severe cognitive and physical disability.…”

“…The intention behind the parents’ controversial decision to pursue GAT for their daughter was to improve her quality of life by causing her to remain a size at which family activities remained possible . Subsequently a small number of parents in New Zealand (NZ; precise numbers unknown) and worldwide (>100) have pursued similar treatment to allow them to continue to provide long‐term care for their children at home rather than institutional care …”