Bioethics Blogs

Ignoring Advance Directives because of Adaptation to Disability

Researchers recently carried out a study with severely disabled survivors who had survived three years with severe neurological disability.  

The waiting period was supposed to allow patients ample time to address issues of anxiety, depression, and loss of dependence and adapt to their disability.  

Interestingly, almost all the patients who could respond indicated that they would have provided consent for decompressive craniectomy even if they had know of their eventual outcome.  This is probably not the consent rate that would be indicated by their advance directives or surrogate decision makers.  Do we ignore those instructions as probably or possibly not truly indicative of the patient’s preferences?

I have long supported waiting periods as a legitimate exercise of soft/weak paternalism.  Even John Stuart Mill allows detaining someone about to cross a damaged bridge – at least until their is time to inform them that it is damaged.  But limiting liberty until autonomous choice can be assured is supposed to be just temporary.  Once it stretches into months and years, it starts to look like hard/strong paternalism.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.