Ethics of Pediatric Mastectomy

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

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7 thoughts on “Ethics of Pediatric Mastectomy

  1. This is extremely troubling, and as the comments to your previous post (the conversation between Jess and yourself) point out, what is being negotiated here — albeit rather clumbsily and dishonestly — is the question of ‘what sorts of people should be allowed to mature into adults’ — adults’ rights to self-determination being apparently less ambiguous than those of children.

    But as the Convention you cite addresses, the decisions adults make on children’s behalf are not always in their interests. It would seem that this decision is based, rather, upon a squeamishness about having to deal with a fully grown person with a developmental disability rather than a childish one. This action, however, enacts a variation upon the category error: Ashley will eventually be an adult — although perhaps a complicated or inconvenient adult — with or without breasts, just as women who have undergone mastectomy are still women — only perhaps with a more complicated self-image.

  2. The issue of substitute consent by parents and guardians is always difficult. The rationale for the procedures in this case was an indirect benefit argument… that what would be of benefit to the parents, her caregivers, would be of benefit to the child because they would be better, happier caregivers. Clearly, such arguments need to have limits.

  3. “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 eliminate the risk of breast cancer later on.”

    Lots of mights and coulds and risks in there. Insert other examples of things that we’re all at risk from. Testicular cancer might be a good one for the males. This combined with the more general issue of whether it’s okay to dose people up on hormones to “attenuate” growth and make them more easily manageable seems not far away from the practice of removing the prefrontal cortex of people suffering from psychosis. Why not remove the limbs of criminals to make them more easily manageable?

    Ah, I see the first author of the original paper killed himself. Good grief, this is a complete disaster.

  4. From the paper, this is useful:

    “A word here about hysterectomy is probably appropriate. Hysterectomy in children, particularly in the disabled, is controversial and invariably associated with the negative connotations and history of forced “sterilization.” But in these profoundly impaired children, with no realistic reproductive aspirations, prophylactic hysterectomy has several advantages as an adjunct to high-dose estrogen treatment. This onetime procedure eliminates the complications of menses, and in many cases, will spare the individual and her caregivers the expense, pain, and inconvenience of a lifetime of hormone injections. Hysterectomy also eliminates the need to give concurrent progesterone during the treatment phase, potentially reducing the risks of thrombosis.23-24 It also eliminates the possibility of future uterine and cervical cancer. With the ovaries left in situ, hormones continue to be produced, providing some protection from osteoporosis. The risks of this surgical procedure in prepubertal girls, and the risks of long-term complications, are minimal—certainly they do not exceed the risk of similar procedures many of these children will experience as part of their medical care. The decision to perform hysterectomy should be made carefully, and the ethical (and legal) considerations important in making this decision have been discussed elsewhere.”

  5. Perhaps the most worrisome aspect of the paper is the incredible one sidedness of the information provided. They repeatedly justify things as eliminating the risk of possible future pain, but they never mention that post-surgical pain is substantial with the procedures that were performed and and that chronic pain is frequent after both these procedures… about 30% of women who have hysterectomies and 40 to 50% of women who have mastectomies will have chronic pain at least a year after surgery. Fore example, MacDonald and colleagues found that about 43% of women who underwent mastectomies developed “Post-mastectomy pain syndrome (PMPS) ….a recognised complication of breast surgery.” Of these, they found that half continued to have chronic pain at least nine years after surgery. The younger the patient at the time of surgery, the greater the risk of PMPS. This risk should have at least been weighed against the risk of possible discomfort from a positioning belt on her wheelchair. Personally, I would consider getting a better belt.

    e.g., Macdonald, L., Bruce, J., Scott, N. W., Smith, W. C., & Chambers, W. A. (2005). Long-term follow-up of breast cancer survivors with post-mastectomy pain syndrome. Br J Cancer, 92(2), 225-230.
    Vadivelu, N., Schreck, M., Lopez, J., Kodumudi, G., & Narayan, D. (2008). Pain after mastectomy and breast reconstruction. Am Surg, 74(4), 285-296.

  6. Pingback: Ashley X: 10 unanswered questions « icad

  7. Pingback: Peter Singer on Parental Choice, Disability, and Ashley X « What Sorts of People

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