A Tale of Two Deaths and Difficult Conversations

I still think back to a difficult week as a trainee, when we cared for two young patients* approaching death. Just days earlier, they had been their normal selves. Now, their brains were rapidly losing function, leaving their families reeling. Noor F. Shaik, MD, PhDOne family was clear that the poor prognosis was inconsistent with the patient’s quality of life and elected to donate their organs after withdrawing life-sustaining measures, a process known as donation after circulatory death (DCD). Meanwhile, as the other patient approached brain death, their family questioned whether brain death was truly death. Both stories were tragic. But what lingered for me was how difficult it was to explain these two deaths. Defining Death, DBD, and DCD Modern medicine has pushed us to define death with precision. The Uniform Determination of Death Act of 1981 codified this, stating that death can occur through the irreversible loss of either circulatory and respiratory function or of all brain function, including the brainstem. At the same time, over the past century, advances in organ transplantation have reshaped how we approach death and its immediate aftermath. For decades, most organs came from patients declared dead by neurologic criteria, or donation after brain death (DBD). Since 2000, DCD has expanded rapidly and now comprises nearly half of all organ donations, driven by both need and technological innovations such as normothermic regional perfusion. While patients are declared dead in both pathways, they are not equivalent in experience. In DBD, death is declared even as the body feels warm, the heart continues to beat, and the ventilator produces visible breaths. Families are asked to accept a death that may feel counterintuitive to what they see. In DCD, death is declared after withdrawal of life-sustaining treatment and the heart stops. Families may witness the moment itself of their loved one dying. Both are death. But they are not the same. The Communication Gap Clinicians are trained to evaluate and establish death in a standardized manner. We are far less trained to explain how death arrives and what comes after. Despite brain death being legally recognized for decades, research suggests large gaps in communicating it to patient families. Families describe brain death as contradictory to how their loved one looks; the patient feels warm and is breathing on the ventilator. On the other hand, public perception was more “certain” of death after circulatory arrest compared to brain death. This certainty may have declined given recent publicity of dubious DCD practices by some organ procurement organizations. With DCD, clinicians must help families prepare for a death that has not yet occurred, navigating prognostic uncertainty alongside discussions of withdrawal of life-sustaining treatment and potential organ donation. Relatives involved in DCD describe high emotional burden but also emphasize the importance of feeling included, informed, and supported throughout the process. DCD can also carry interpersonal challenges within the healthcare team. In a recent study, the majority of nurses expressed limited knowledge about DCD. But nurses who reported greater knowledge about DCD had a more positive attitude toward it. Communication around brain death and DCD can be challenging. Simulation-based educational interventions have shown that clinicians benefit from structured opportunities to practice these conversations, improving comfort with both the ethical and communicative complexities of brain death. But some trainees still expressed frustration at those holding a purely circulatory view of death. Clearly, there is still room to further engage in these difficult conversations. Why This Matters Now This communication gap matters now more than ever. I saw this firsthand with the second family that struggled for days to reconcile the loss of brain function with their loved one dying. This was also emotionally challenging for the healthcare team to navigate. DCD is no longer rare. It is becoming a substantial portion of organ donation. And while brain death has been legally recognized for decades, it is not universally accepted nor well-understood even by other members of the healthcare team. That disconnect carries consequences. Families can leave these already stressful encounters feeling confused or uneasy. Clinicians can experience moral distress when conversations feel inadequate or misaligned with what families need. And public trust can erode when definitions of death feel vague or not applied rigorously and consistently. We have defined death. We are still learning how to talk about it. *Some details were changed to protect the patients’ identities. Noor Shaik, MD, PhD, is a neurology resident physician at the Hospital of the University of Pennsylvania in Philadelphia. She has published academic research and patient-facing articles on the prevention and recovery after neurologic injuries, such as stroke and traumatic brain injury. The opinions expressed in this article do not necessarily represent those of the University of Pennsylvania Health System or the Perelman School of Medicine.