A Patient’s Irreconcilable Voices: Considering Another Type of “Refusal” in Burn Care

In general, literature on treatment refusals in burn care has largely centered on decisional capacity in the acute phases of burn treatment and an individual's "right to die" rather than endure treatment or its consequences. However, burn providers frequently encounter in the moment refusals in which patients who very much want to survive attempt to delay or otherwise avoid treatment for various reasons, including trauma response, anticipatory anxiety, pain, desire for control, and ambivalence. In this paper, we consider a case inspired by our shared experience as clinical ethicists in which a burn patient readily expressed a desire to live and agreed to necessary treatment yet would often demonstrate significant distress in anticipation of and during even the most basic of care. We explore the utility and shortcomings of existing frameworks of decisional capacity in this context and detail a multidisciplinary team, patient-centered approach to care.