Treatment Search Fatigue and Informed Consent.

Mergenthaler and colleagues have provided important empirical data on recruitment and consent in human intracranial electrophysiology research. One phenomenon that is particularly important in this context is what we call treatment search fatigue. Patients who are eligible for experimental trials examining the effectiveness of novel electrophysiological interventions such as deep brain stimulation (DBS) for managing treatment-resistant conditions (e.g., movement and psychiatric disorders) generally have severe presentations of these conditions and have undergone numerous unsuccessful treatments. This experience could potentially lead patients to be more willing to undertake the risks and burdens associated with trials of this or other novel interventions. After suggesting some potential ways in which treatment search fatigue could in principle threaten informed consent, we nonetheless caution against assuming that it always or even often does so. The internal, experiential nature of many of these symptoms and their effect on quality of life implies that it is patients who are best-positioned to judge their harmfulness and weigh such harmfulness accordingly in decision-making. What strikes others as desperation might in fact be an accurate assessment of the intolerability of these symptoms, as experienced from the inside. This may increase patients’ willingness and even eagerness to undertake certain risks and burdens that strike others as unjustified, but based on their persistent symptom severity are to them worth taking on in light of the possibility that these symptoms could be relieved for themselves and/or others whom the research may someday benefit.