Discomfort as a Catalyst: An Ethical Analysis of Donation after Cardiac Death in a Patient with Locked-In Syndrome

Abstract

Donation after cardiac death (DCD) traditionally occurs in two patient populations: (1) those who do not meet neurological death criteria but who have suffered severe neurological damage, and (2) those who are fully alert and awake but are dependent on machines. This case highlights the unique dilemma when a patient falls between these two populations-conscious and cognitively intact, but completely paralyzed except for limited eye movement, afflicted by what the medical community refers to as locked-in syndrome. Prompted by the treatment team's discomfort, an ethics consultant examined whether the team was obligated to discuss a decision to donate with the patient, who was a registered organ donor. This article shows how, in determining whether or not to talk to the patient or family during end-of-life decision making, the weight assigned to the various ethical concerns in the case-the patient's condition, the decision to be made, and the family's agreement or disagreement regarding the patient's wishes-can "swing the pendulum" of ethical analysis in different ways. The comfort of the patient must be accorded the highest priority, as well as the needs of the patient's family. This case study highlights the nuanced contextual factors necessary to guide a treatment team's approach to DCD for a patient with uncertain decision-making capacity.