Caring for a patient or violating a corpse? The new brain death guidelines and unsettled questions about personhood and power

Abstract: The recent multi-organization consensus guidelines for Brain Death/Death by Neurologic Criteria (BD/DNC) should help reduce inaccuracy and improve consistency of clinical testing for BD/DNC, but may inadvertently worsen conflict between healthcare teams and families. At the heart of many such conflicts is a disagreement over personhood – is this person still “here” and what is owed them? The guidelines assert clinician authority over this existential question by declaring determination of brain death a “medical responsibility” and advising that “clinicians do not need to obtain consent” for testing, seeming to make irrelevant the many questions raised by incongruent ancillary tests, persistent neuroendocrine function, and variable physiologic stability and bodily integrity among patients who meet clinical criteria for BD/DNC.

For the small but growing minority of families who refuse BD/DNC testing or diagnosis, when healthcare teams respond from a place of authority and unilateral decision-making it engenders or worsens distrust and can exacerbate conflict. Inability to consider or accommodate different conceptions of death puts clinicians at risk of significant moral distress when caring for patients they believe no longer are protected by person-status despite the family’s perception that their loved one still deserves treatment consistent with personhood.

In this panel, we will explore ethical and legal concerns raised by the new guidelines, examining what is gained and what is lost by asserting authority, ignoring ambiguity, and excluding plurality. We will offer guidance for healthcare teams and clinical ethicists and propose future directions for policy makers and legal scholars.