Recently, the mother of Katie - a 15-year-old girl suffering from a severe form of cerebral palsy - asked doctors to remove the girl's uterus to prevent her from menstruating.  Is this ethical? 

The ancient Greeks believed the uterus could roam around a young woman’s body, sometimes all the way up to the throat (think globus hystericus), causing hysteria and other unpleasant conditions. Over two thousand years later, the uterus is once again in the spotlight.

A key question is whether the distress will be sufficiently profound to warrant a hysterectomy, with its associated risks and side-effects. That this question cannot be answered with any degree of confidence introduces a high level of uncertainty in the decision to operate. We simply do not know whether or not surgery will be in her best interests.

My immediate response, when first reading the case, was to advocate a ‘watch and wait’ approach to see how Katie copes with this additional challenge. Perhaps, with time, she will not be as distressed as anticipated. Perhaps less invasive alternatives will work.  Alternatively, menstruation could prove unbearable and a hysterectomy may be the best option.

One source of controversy is that the surgery is not medically indicated. The short-term injury of a hysterectomy will be incurred without clinical benefits. This should rightly raise a red flag.  “If it ain’t broke, don’t fix it” is generally wise advice.  But what is the ‘it’ in Katie’s case? The uterus ain’t broke, but her mother would argue that it is her overall well being that is threatened. Clinical benefit is but one element of overall benefit.

As psychological and emotional factors play key roles in our happiness, we should not reduce well being to the mere functioning of bodily organs. If we believe that one of medicine's aims is to reduce human suffering, then removing Katie’s uterus may be medically indicated. Others will disagree with this interpretation of medicine, perhaps calling the hysterectomy, unhelpfully in my view, a form of mutilation.

It is notoriously difficult to imagine what others are feeling. Studies show that chronically ill and disabled persons tend to rate their quality of life higher than healthy persons asked to imagine themselves in their situation. Our imaginations are prone to overestimate the dreadfulness of future or hypothetical states. Are we falling foul of this tendency when anticipating that menstruation will be awful for Katie, and will continue to be so no matter how accustomed she becomes to it? 

In such thorny cases, decision-makers should make sure that all the relevant moral factors and plausible alternatives have been considered and that, whatever the decision, they can defend it with strong justifications. When this is done, it is often more helpful to support, rather than criticise, the decision-makers, for their own welfare is not infrequently bound with the decision and its outcome, and Katie’s happiness too cannot be entirely separated from the happiness of her mother.

Daniel K. Sokol, Lecturer in Ethics, University of Keele, and Honorary Research Fellow, Imperial College, London.

www.medicalethicist.net

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