Manipulating growth and puberty in those with severe disability: when is it justified?
- 1Department of Paediatrics and Growth, Institute of Health Sciences, University of Reading, Reading, UK
- 2Department of Philosophy, University of Reading, Reading, UK
- Correspondence to:
Professor Gary E Butler
Department of Paediatrics and Growth, Institute of Health Sciences, University of Reading, London Road, Reading RG1 5AQ, UK;
Perspective on the paper by Albanese and Hopper (see page 629)
Albanese and Hopper have laid out a clear stepwise approach to the management of menstruation, wanted and unwanted, in girls in whom self-management is either not an option or undesirable, or where prevention of unwanted pregnancies may be in the girl’s “best interests”.1 It is the use or misuse of this phrase “best interests” that can license medical practitioners to extend the nature of interventions into uncharted territory. There is no doubt that it is in the child’s “best interests” to have a loving and stable home, and this is most likely to be best provided by the family. How far though should we extend clinical manipulation to achieve this end? This discussion was brought to the fore in the case of the American girl Ashley X, diagnosed with static encephalopathy,2 about whom discussions with her doctors over matters concerning puberty manipulation went far beyond the standard approach and led to growth limitation with high-dose oestrogens combined with irreversible surgical interventions such as hysterectomy and mastectomy to avoid the side effects of the hormone treatment and improve quality of life. This approach has taken us into a quagmire of diametrically opposed opinions, polarised between those in support of her parents’ genuine desire to achieve the best outcome for their child, and those staunch defenders of the rights of the disabled. Who is right therefore, and should the “Ashley treatment” which her parents have been advocating3 be considered for all children with severe disability? Situations such as this demand an objective examination of medical evidence but also a clarification of our moral duties …