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

Barrie Huberman – Clinical Director, Division of Medical Ethics, Weill Cornell Medicine

Abstract: Surviving severe burns requires repeated exposure to painful and traumatic therapeutic interventions. As a result, a patient’s ability and willingness to tolerate treatment can directly impact their prognosis. Dax Cowart’s case has long-dominated ethical discourse on treatment refusals in burn care. Severely burned in 1973 and subsequently treated over his objection, Cowart spent the rest of his life arguing providers ought to have heeded his refusals and let him die. While compelling, Cowart’s paradigmatic case was largely concerned with global treatment refusal, insofar as his refusals were consistent with an overarching wish to die. In this paper, which is inspired by a case from our ethics consultation experience, we consider a less commonly discussed predicament in burn care: how ought burn providers navigate care for patients who have communicated their expressed goal to survive and consented to treatment, yet demonstrate a low tolerance for experiencing treatment due to pain, anxiety, or fear that manifests in refusals of care in the moment? Such acute refusals can have aggregate effects on patient recovery and burn providers often find themselves having to navigate two irreconcilable patient voices: one that is survival-oriented and another that seeks to avoid in-the-moment re-traumatization. Not only does such a conflict complicate the provision of care, but it puts burn providers at heightened risk of experiencing moral distress, secondary traumatic stress, and burnout. Our paper considers the role of clinical ethicists in these cases and the ways in which we can help providers navigate seemingly intractable patient interests.

Keywords: Burn Care, Informed Refusal, Clinical Ethics