Family and Transplant Professionals' Views of Organ Recovery Before Circulatory Death for Imminently Dying Patients

A Qualitative Study Using Semistructured Interviews and Focus Groups

Christopher J. Zimmermann; Nathan D. Baggett; Lauren J. Taylor; Anne Buffington; Joseph Scalea; Norman Fost; Kenneth D. Croes; Joshua D. Mezrich; Margaret L. Schwarze


American Journal of Transplantation. 2019;19(8):2232-2240. 

In This Article


In absence of legally codified death by neurologic criteria or circulatory death, professional stakeholders saw all-organ recovery as equivalent to murder. They feared the social costs of organ recovery for imminently dying patients were too high and had mixed opinions about removal of a single kidney. Family members were more tolerant; many thought recovery of all organs before circulatory death was permissible because they believed the donor was dying or already dead. These findings have important implications for clinicians, policymakers, families of potential organ donors, and investigators.

For clinicians, our findings demonstrate that death by neurologic criteria is both a facilitator and barrier to organ donation. Although these criteria define a legal line[11,20,21] between what counts as living and what does not, brain death has been internalized by clinicians to mean the patient is actually dead. Their belief that it is murder to recover organs from a person who is close to, but does not fully, meet criteria indicates that brain death carries moral weight. This line is important for both transplant recipients and families who would otherwise bear long-term care burdens for a brain dead loved one.[22,23] Nonetheless, it has hazards for those who desire donation but do not meet criteria and for people who do not recognize this line.[24–26]

For policymakers, our findings demonstrate there is opportunity for single kidney recovery before circulatory death. Stakeholders see parallels between living-donor kidney donation and single kidney recovery before circulatory death. Donor nephrectomy is routinely done with few complications and would not violate concerns about participating in murder. Implementation would require well-vetted protocols and clear direction about how to navigate the tension between obligations to a living patient and needs of the recipient, for example, how much donor artery and vein to recover during nephrectomy. Additional safeguards include protection for families from pressure to pursue donation and relief from institutional penalties for living donor death after postoperative withdrawal of life-sustaining treatments.

Novel recovery strategies have potential for serious social harm. Family members identified tremendous personal value of organ donation in the face of tragedy[5] but attempts to innovate the current system should be weighed against the needs of those dependent on it. This includes patients with life-limiting organ failure and patients who rely on trusted clinicians for end-of-life decision making. Whether robust public education programs could be designed to mitigate public backlash is an open empirical question.[27–29]

For family members, the dead donor rule has difficult consequences when injuries or illness do not fit the rule well. Although some saw the rule as an important protection for public trust, most believed the inciting brain injury had caused death of their loved one and felt deprived from participating in an endeavor to soothe their grief. Families were left to endure a confusing, inflexible rule stipulating the experience of their loved one's last moments. This juxtaposition between almost dead and not dead enough is an onerous place, which proves difficult for donor families to reconcile with positive public narratives about organ donation.[30–32]

For investigators, this study is an initial exploration of a stepwise empirical process that requires both exploratory and confirmatory study design to generate a comprehensive understanding of this complex issue. Without this in-depth understanding of rich stakeholder experiences, it would be difficult and highly flawed to embark on a larger-scale opinion survey with potentially more generalizable results. Given the scope of this early-stage investigation, there are additional questions to explore with respect to imminent death donation. This includes issues of social justice and fair allocation of resources for historically disenfranchised groups who typically do not receive as many transplants and have distrust of the healthcare system more broadly.[33,34]

Our study was designed to explore the range and variability of stakeholder viewpoints about a novel proposal with limited data. This study was not designed to consider respondents as representative of specific demographics and should not be interpreted as an estimate of the prevalence of these views. We intentionally sampled only donor families who experienced failed DCD donation instead of the general public. Though this likely overstates support for organ recovery before circulatory death (as exhibited by the high number of registered donors in this sample), donor families are better equipped than the general public to understand the distinction between brain death and severe brain injury, and have much more at stake. Although we captured a range of socioeconomic variability with our donor families, we were able to harness the trusted relationship between our OPO and respondents only within one geographic region. Our findings, although consistent with other studies,[28] may be unique to the predominantly white, Christian population of the upper Midwest (United States: Illinois, Indiana, Iowa, Michigan, Minnesota, and Wisconsin).