A few days ago, I posted an item about the mastectomy of Ashley X, pointing out that her father,doctors and ethicists involved in the case, and some of the media reporting on the case had gone out of their way to inform the public that this was not really a mastectomy. Nevertheless, a bilateral simple (or radical) mastectomy was exactly what was discussed by the ethics committee and what the hospital billed for.
The logic behind the procedure was that Ashley might develop large breasts which could be uncomfortable for her and that removing her breasts at age six would also eliminated the risk of breast cancer later on. Since Ashley was only six and also had a severe developmental disability, she could not consent, and so the decision was left in the hands of her parents. The ethics committee considering the case recognized that this was a very unusual if not unique circumstance, and felt that this meant that there was little existing guidance. However, in many respects it is not so unusual.
All women have a high lifetime risk of breast cancer. For American Women, the risk is about 1 in 8. For women who have a family history of breast cancer the risk is considerably higher and for those known to have the BRCA1 and BRCA2 gene mutations the risk may be greater than 3 in 4. Statistically speaking, the younger a child is, the higher her risk of developing lung cancer sometime in her life.
No six-year-old child, whether or not she has a developmental disability is considered competent to assess this risk and decide to have her breasts removed. (1) Might the parents of of a healthy, typically developing six-year-old girl be allowed to ask for and consent to a bilateral mastectomy as a means of protecting their daughter against these very real risks? (2) Has the ethics community ever addressed this issue? If so, does a child’s disability in some way change these considerations?
The answer to the first question is pretty clear. Parents would not routinely be allowed to ask for and consent to a mastectomy of their child as means of controlling a very real and substantial risk. If anyone out there knows of any exceptions to this rule, please let me know.
Secondly, the issue of prophylactic pediatric mastectomy has been addressed in the scholarly ethics community. it has been discussed in such mainstream journals as the The American Journal of Bioethics [I haven’t linked to his because it is only available to subscribers) and the Journal of Medical Ethics (UK). Surely, the ethicists that were involved in the Ashley X case would have known or could have known about these discussions and opinions. The doctors and ethicists involved in the Ashley case repeatedly pointed out that this was such a novel procedure that there was little to guide them, so presumably they actually looked for this information.
Hodges, Svoboda, and Van Howe (2002) point out that for women in the highest risk categories prophylactic mastectomy has been estimated to increase life expectancy by 2.9 to 5.3 years “For most women, however, a lifetime of disfigurement is too high a price to pay for a chance of having a few extra years of life.” There point is that if most women in the highest risk category do not choose or consent to this procedure for themselves, it is inappropriate for substitute decision maker to make this decision for another individual. The suggest that pediatric mastectomy can only be justified in the “presence of clinically verifiable disease, deformity, or injury” AND when it is “least invasive and most conservative treatment option.” This has particular relevance since one of the reasons given in the Ashley case was that her positioning belt on her wheel chair rubbed across her breasts. Perhaps a better belt would have been a bit less invasive than removing her breasts. Their conclusion is clear:
“Prophylactic mastectomy is problematic and has a number of grey areas. The best one can say is that it may be acceptable for competent adults who have given informed consent, free of any force, coercion, manipulation, or undue influence from any source. Prophylactic mastectomy cannot be sanctioned on infants or children who have not yet attained legal competence or the age of majority.” In their view, Prophylactic mastectomy of a child is a serious human rights violation.
How is it any different for a child with a severe disability? In most respects, it isn’t. One difference is the the Convention on the Rights of the Child. It states (1) children with disabilities have exactly the same rights as all other children, (2) that because these children’s rights are so frequently violated, they need a higher standard of protection. While the US government hasn’t endorsed the convention, the American Academy of Pediatrics has endorsed it, so children with disabilities in the American health care system should be protected by it.
see previous Mastectomy, not mastectomy