Possible conflicts of interest in donation after death determined by circulatory criteria: attitudes and experiences of families and substitute decision-makers

Concerns about actual or perceived conflicts of interest have long shaped ethical debate and policy in organ donation, particularly the risk that the interests of potential transplant recipients or donation systems could compromise the care of dying patients. Donation after death determined by circulatory criteria requires substitute decision-makers to make closely sequenced decisions about withdrawal of life-sustaining treatments and organ donation. Existing discussions of conflict of interest focus primarily on health care providers and institutions, but little empirical work has examined family experiences and perceptions of conflicts of interest in this context. We conducted a qualitative interview study with substitute decision-makers of patients eligible for donation after death determined by circulatory criteria in eight intensive care units in two Canadian provinces. Participants were recruited prospectively through a clinical study and retrospectively through an organ donation organization. Semi-structured interviews were conducted 6–18 months after the patient’s death. Transcripts were analyzed using an inductive thematic analysis approach with iterative development of a coding framework and team-based coding. Thirty-six families (42 participants) were included in the analysis. Participants generally reported that decisions to withdraw life-sustaining treatments were made on patient-centered grounds and not in order to enable organ donation. However, donation sometimes influenced the timing of withdrawal decisions and shaped how families experienced those decisions. Most participants did not perceive compromised care aimed at securing organs, although a small number expressed concerns about hastened death, burdensome interventions, or diminished care after unsuccessful donation attempts. Donation was often described as meaningful and beneficial for families, but it also exposed some to psychological risks, including guilt, distress due to delays in end-of-life care, disappointment of unsuccessful donation, and decision regret. From the perspective of families, donation after death determined by circulatory criteria generally aligns with patient-centered end-of-life decision-making, but it can create tensions among patient, family, and donation-related interests. Ethical practice should address not only conflicts of interest affecting patient care, but also the psychological risks borne by families asked to make these decisions. Greater attention to communication, preparation for uncertainty, and family support may help mitigate these risks.