Can patients enjoy a life of disability?

Severe head injuries sometimes require a life-saving procedure called “decompressive craniectomy” in which a piece of the skull is removed to allow swelling in the brain to subside. The problem with this is that patients often survive with severe disabilities. Many of them are young people who had been in good health and the operation leaves them in a condition that they and their families might regard as unacceptable.

This create a problem for informed consent. It is a fundamental principle of bioethics that patients must consent to their treatment. However, patients with traumatic brain injury are in no position to give consent to a decompressive craniectomy. Would they give retrospective consent? In other words, are they happy that doctors save their life, even if it unfolds as a life of disability? What a fit and healthy person regards as “acceptable” might not match what a disabled person feels about life.

To examine this issue, a team of researchers in Perth, Australia, interviewed 20 patients who had survived for at least 3 years with an unfavourable outcome and published their results in the Journal of Medical Ethics. There were difficulties in getting responses from some of the patients. However, surprisingly, a majority of them were happy that the operation had been performed and saved their lives. The researchers concluded that:

“Many patients appeared to have adapted to a level of disability that competent individuals might deem unacceptable. This does not necessarily mean that such outcomes should be regarded as ‘favourable’, nor that decompressive craniectomy must be performed for patients with predicted poor outcome. Nevertheless, those burdened with the initial clinical decisions and thereafter the long-term care of these patients may draw some support from the knowledge that unfavourable may not necessarily be unacceptable.”

This article is published by Michael Cook and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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