Alexander E. Merkler, MD
Honeybul S, Ho KM, and Gillett G. Outcome Following Decompressive Hemicraniectomy for Malignant Cerebral Infarction: Ethical Considerations. Stroke. 2015
There have now been six randomized controlled trials comparing decompressive hemicraniectomy for large hemispheric infarction (LHI) with standard medical therapy. Hemicraniectomy confers a 50% absolute risk reduction in mortality, but at what cost? Most patients are left with moderate to severe disability – approximately 40% of patients who undergo decompressive craniectomy become disabled, with a modified Rankin scale (mRS) of 4 (unable to walk without assistance and unable to attend to own bodily needs without assistance). But is mRS an adequate outcome measure in these patients? What constitutes a good functional outcome? And most importantly, who decides what is a good functional outcome?
In the article by Honeybul et al, the authors ask us to consider the ethical ramifications of decompressive hemicraniectomy and to acknowledge that a “one size fits all” approach for treating patients with LHI is neither adequate nor appropriate.
In the 2007 meta-analysis of the three European trials, surgery as compared to medical treatment alone was significantly associated with an improvement in favorable outcome (75 vs 24%), but a “favorable” outcome was defined as a mRS of four or less. Thus, as the authors point out, a favorable outcome included patients who were unable to attend to their own bodily needs without assistance.
Of course, we need to keep in mind that the mRS is not a perfect measurement of outcome. It is a scale largely based on ambulation and does not consider other extremely important measures of functionality such as language, cognition, and depression, all of which may equally impact quality of life as compared to motor function.
Despite the large percentage of patients left with disability, several studies showed that the majority of patients who underwent hemicraniectomy would have “retrospectively” provided consent for the procedure (if it would have been possible to answer it themselves at the time). As Honeybul et al explain, it is inherently difficult to give sufficient merit to these claims. First, patients answering these questions may not be at their cognitive baseline. Second, as a testament to human nature and the will to survive, patients may have adapted to the new level of neurological disability, one which they may previously have deemed unacceptable.
So what should neurologists consider when evaluating a patient with a LHI? It is our responsibility to individualize treatment of LHI by thoroughly evaluating what would constitute an acceptable outcome, much the same way we do for patients regarding code status. Each person is entitled to his or her belief of what a life worth living would mean—for some it may mean the ability to read and write, for others it may mean walking independently, and for others it may mean just simply being able to breathe. We as clinicians must make a diligent effort to determine what a patient would have wanted before we assign them a life they never would have desired.
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