Cosmetic Surgery in Children with Cognitive Disabilities: Who Benefits? Who Decides?

Recently, as part of a clinical ethics consult, a clinician told the story of a mother and her teenage son. A couple of years ago, the boy had a skateboarding accident and injured his brain and spine, leaving him quadriplegic, unable to communicate, and in need of mechanical ventilation. At the time of the ethics consult, the boy was back in the hospital because the bone graft—bone taken from another part of his body to fill two large sections of his skull removed after the initial injury—had now failed, leaving only a layer of skin to protect his brain. To safeguard his brain from further injury, surgery was planned to cover this fragile area of his head with plastic prosthetic plates.

The parents had requested the surgery and the surgeon agreed, but some of the other clinicians caring for the boy had a problem with it. Although the prosthetic plates were reconstructive, the surgery involved serious risks with questionable benefits. The boy's risks of falling and hitting his head were nearly zero since he remained in bed unless placed in a wheelchair. When one of the doctors asked the mother why she wanted this cosmetic surgery for her son, she responded angrily, "How dare you call it cosmetic!"

It is not difficult to understand the mother's reaction given the negative connotations often associated with "cosmetic surgery." The prevalence of nose jobs, face lifts, and breast augmentation has not helped, leading to the label "psychiatry with a scalpel."¹ In response to critiques of cosmetic surgery, many people make distinctions that are meant to be morally meaningful. For instance, there is the distinction between enhancements and restorative procedures: breast augmentation is considered an enhancement and, therefore, morally quite different from a similar restorative procedure following a mastectomy for breast cancer. There is also the distinction between enhancements and interventions that are normalizing: surgery to remove the fifth toe to better fit into fashionable pointed shoes can be morally distinguished from surgery to remove an extra toe to fit into standard shoes. Although these distinctions may offer some insight into the mother's irritation with the label "cosmetic," they may fail to fully capture the underlying moral concerns and so may not be useful in addressing what should be done.

The challenge of balancing risks and benefits in this case raises difficult questions about cosmetic surgery in children: Should different ethical standards be used when considering such surgery in children with developmental disabilities than are used when considering it in children without disability? Should cosmetic surgery in children with severe cognitive disability even be allowed? And should parents be permitted to make this decision?

Quality of Life: The Child's or the Parents'?

Cosmetic surgery for children primarily entails quality-of-life considerations. These decisions are not life-or-death matters, and they very rarely have the potential to alleviate physical pain.² The impact of the surgery on the child's quality of life must be balanced with the risks of the proposed procedure.

The standard approach to decision-making about cosmetic surgery in children is interdisciplinary. Pediatricians, surgeons, social workers, nurses, psychiatrists, dentists, physical therapists, and others contribute their specific expertise for the most accurate picture of the risks and benefits. How to weigh each burden and benefit, however, ultimately rests with the parents.

While clinicians generally give parents great latitude in medical decision-making on behalf of their children, cosmetic surgery may introduce some unique constraints. Participants in the recent Hastings Center research project, Surgically Shaping Children, for instance, largely agreed that parents could pursue primary cleft lip surgery where the risk was small and the psychosocial benefit enduring. However, the group unanimously advocated for postponing "risky and painful surgeries that might fail to reliably retain function and produce more normal appearance" until the child was old enough to participate in the decision-making process.³ That is, when the ratio of risks to benefits is less clear, cosmetic surgery decisions should be deferred. However, this approach does not address cases in which the child...