Defining Death — Cultural, Scientific and Legal Complexity
Implications for Hospital Care, Transplantation and Biotechnology
Robert D. Truog
Frances Glessner Lee Distinguished Professor of Bioethics, Anaesthesia, & Pediatrics
Senior Associate in Critical Care Medicine, Boston Children's Hospital &
Center for Bioethics, Department of Global Health and Social Medicine, Harvard Medical School
About the Lecture
All of us have an intuitive understanding of what it means to be dead. As medical technology has advanced, however, the situation has become more complicated. When Christian Barnard performed the first heart transplant in 1967, the central ethical and legal question was whether the donor was “dead” at the time his heart was removed, or whether Barnard had actually killed the donor in an attempt to save the life of another.
For organ transplantation to advance, this question needed a clear answer. So in 1981 the Uniform Law Commission adopted the Uniform Determination of Death Act (UDDA), which allowed doctors to diagnose death by either of two criteria – 1) the irreversible cessation of circulatory and respiratory functions (biological death), or 2) the complete absence of all functions of the entire brain (brain death). The first represented the “traditional” or “biological” understanding of death. The medical consultants to the legislators claimed that the second criterion was equivalent to the first, since without the brain, the body quickly disintegrates, with the patient having cardiopulmonary arrest and biological death within no more than a few days.
The UDDA worked well for decades, and enabled a system of organ procurement and transplantation that has saved the lives of tens of thousands of patients. Yet in the last few years, we have learned that it is based on a flawed premise. It turns out that patients diagnosed as brain-dead do not necessarily have cardiopulmonary arrest within a week – in fact, if kept on a ventilator and provided with nutrition, these patients can live for many years.
In other words, we now know that brain death is not just a way of diagnosing imminent biological death. Instead, it is a fundamentally new understanding of human death, based on the loss of neurological function. To be clear, brain death represents an extremely severe form of neurological injury – since the UDDA was enacted there has never been a case of a person who has recovered consciousness following the diagnosis – but it is fundamentally distinct from a traditional or biological understanding of death.
These issues became widely known following the case of Jahi McMath, a young woman who was diagnosed as brain-dead following complications from a tonsillectomy. Her mother rejected the insistence of the physicians that Jahi was “dead,” with the result that Jahi survived biologically for almost another five years. As knowledge of this case went viral through social media, more families started to reject the diagnosis, and in 2020 the Uniform Law Commission decided to revisit the 1981 law that had established the legality of brain death, and consider whether it is still valid or needs to be revised. The debate is still ongoing, and the outcome is far from certain.
This lecture will discuss legal, cultural, scientific and medical viewpoints in the debate and the implications of the outcome – revised definitions of death – for hospital care, organ transplantation, and innovations in biotechnology.
Selected Reading & Media References
(1) Kozlov M. What does ‘brain dead’ really mean? The battle over how science defines the end of life. Nature. 2023;619(7969):240-242.
(2) Truog RD, Paquette ET, Tasker RC. Understanding Brain Death. JAMA. 2020;323(21):2139-2140.
(3) Truog RD. The Uncertain Future of the Determination of Brain Death. JAMA. 2023;329(12):971-972.
About the Speaker
Robert Truog is the Frances Glessner Lee Distinguished Professor of Anaesthesiology, Pediatrics, and Bioethics at Harvard Medical School, and currently chairs Harvard University’s Embryonic Stem Cell Research Oversight Committee (ESCRO). He also practices pediatric intensive care medicine at Boston Children’s Hospital, where he has served for more than 30 years, including a decade as Chief of the Division of Critical Care Medicine. Previously, he served as Director of the Center for Bioethics at Harvard Medical School from 2014 to 2023, where he had overall responsibility for the Center’s many activities, including the Master of Bioethics graduate program, the Bioethics Fellowship Program, required courses in Medical Ethics and Professionalism for Harvard medical students, and the Center’s many workshops, seminars, and public forums. He also served as chair of the Harvard Human Subjects Research Committee
Much of Bob’s scholarship has focused on the ethical and scientific challenges surrounding the definition of death and practices in organ procurement and transplantation. He has published more than 300 articles in bioethics and related disciplines. His books include Talking with Patients and Families about Medical Error: A Guide for Education and Practice (2010, JHUP) and Death, Dying, and Organ Transplantation (2012, Oxford).
Among many other honors and awards he has received the William G. Bartholome Award from the American Academy of Pediatrics, the Christopher Grenvik Memorial Award, and the Shubin-Weil Master Clinician-Teacher Award, from the Society of Critical Care Medicine and he was honored with the Spinoza Chair of the University of Amsterdam. Bob lectures widely nationally and internationally, and is an active member of numerous committees and advisory boards.
Bob earned a BS in Biochemistry at the University of California, Los Angeles, an MA in Philosophy at Brown University, an MD at the University of California, Los Angeles, and he was a Fellow in the Program in Ethics and the Professions at Harvard University.