In “Dividing the Church on Brain Death,” which appeared in our June issue, Dr. Jason T. Eberl and others argued that current neurological criteria for determining brain death is consistent with Catholic teaching. They were responding to the joint statement “Catholics United on Brain Death and Organ Donation: A Call to Action,” in which the authors advised Catholics to “decline organ donor status” and “decline consent for organ donation” because the existing guidelines do not ensure “moral certainty of death.” Several physicians and ethicists responded that even if a blanket refusal of organ donation may not be justified, there are indeed questions about the accuracy of determining brain death under the current criteria.
Testing must include hypothalamic function
We agree that the “Catholics United” statement was imprudent. However, to claim that the criteria for the determination of death is on firm footing seems uninformed. Several religious and secular organizations opposed adopting the American Academy of Neurology’s clinical guidelines as a uniformly acceptable standard for death. They included The Arc (representing the disability community), the American College of Physicians and the U.S. Conference of Catholic Bishops.
This rejection was because the current clinical criteria omit assessment of hypothalamic function, which Dr. Eberl and his co-authors assert “does not play a central role in preserving the human organism’s integrative unity.” This assertion was sufficiently unconvincing that the A.A.N.’s proposed revision to the Uniform Determination of Death Act, which would have excluded hypothalamic testing, has been placed on indefinite hold.
We believe that, at the present time, the best way to assess whole brain death, assuring that the individual has met adequate philosophical criteria for being declared dead, would be to add testing for hypothalamic function to current testing. The hypothalamus not only is important in connecting the brain to the hormonal system, it also controls the body temperature and blood pressure. It is also now recognized as playing a crucial role in emotional and cognitive processes, and studies have demonstrated the interactive roles of distinct hypothalamic nuclei in various cognitive processes and phenomenal awareness. This includes the ability to detect pain sensation, which means that a patient with a functioning hypothalamus could be aware of pain during the process of harvesting organs.
Patients who are “whole brain dead,” or have no brain activity, will not acquire new physiological functions, such as the induction of pubescence. But that brings us to the case of Jahi McMath, who was determined to be brain dead based on the criteria supported by Dr. Eberl et al.—that is, without hypothalamic testing. She went through puberty and continued to live for an additional four years. Hers is not the only case of false positive diagnoses of brain death using the A.A.N.’s clinical criteria. [Editor’s note: Jahi McMath was a 13-year-old girl who was declared brain dead in 2013 after complications from surgery. While still comatose, she underwent puberty before dying in 2018 from abdominal complications.]
When St. John Paul II wrote in support of the concept of whole brain death, he noted the importance of moral or prudential certitude. With so many debates about persistent hypothalamic function and the uncertainty of whether or not such patients are dead, it seems that the standard of prudential certitude is not currently being met. Moreover, the claim that “If St. John Paul II meant to include the hypothalamus…surely he would have done so” seems far-fetched. If he did understand the intricacies of the hypothalamus, he would not have needed to comment upon testing for its function since, logically, testing would be included in his requirement of “complete and irreversible cessation of all brain activity” (emphasis in the transcript of his address to the International Congress of the Transplantation Society in 2000).
Dr. Eberl et al. wrongly suggest that there is no problem with the current neurological criteria for determining that patients have died. But given that such testing standards yield too many false positives, we must either improve testing or abandon the idea of determining whole brain death. As a matter of prudence, we argue for the former.
Christopher A. DeCock practices pediatric neurology/epilepsy and is physician chair of the West Market Ethics Committee at Essentia Health, in Fargo, N.D. James Giordano is a professor in the Department of Neurology, chief of the Neuroethics Studies Program, and co-director of the O’Neill-Pellegrino Program in Brain Science and Global Health Law and Policy at Georgetown University Medical Center. Daniel P. Sulmasy serves as the André Hellegers Professor of Biomedical Ethics in the departments of medicine and philosophy, and as director of the Kennedy Institute of Ethics, at Georgetown University. Carlo S. Tornatore is a professor and chair of the Department of Neurology at Georgetown University Medical Center and Medstar Georgetown University Hospital. G. Kevin Donovan is a physician ethicist and director emeritus of the Pellegrino Center for Clinical Bioethics, at Georgetown University. Allen H. Roberts II practices critical care medicine and serves as chair of the ethics committee at MedStar Georgetown University Hospital. Myles N. Sheehan, S.J., is director of the Pellegrino Center for Clinical Bioethics and the David Lauler Chair of Catholic Health Care Ethics at Georgetown University Medical Center.
Note: Dr. DeCock and Dr. Sulmasy served as observers for the Uniform Law Commission’s Drafting Committee on the Revision of the Uniform Determination of Death Act. They were also co-authors of a letter to the Linacre Quarterly that was cited in “Catholics United on Brain Death and Organ Donation: A Call to Action.”
Debate has room to grow on both sides
As a practicing clinical ethicist in Catholic health care, I join the authors of the recent America article in their concern that some recent discussions in bioethics risk entangling health care in struggles for power among cultural factions. They focus on a statement ambitiously titled “Catholics United on Brain Death and Organ Donation.” I worry, however, that the authors of the America article and “Catholics United” ultimately talk past one another.
Dr. Eberl and his co-authors show an unfortunate tendency to interpret “Catholics United” in ways that render its arguments more extreme than a charitable interpretation would suggest. For example, they write that the “Catholics United” statement “condemned the use of neurological criteria for determining that patients have died.” In fact, “Catholics United” repeatedly states that some of its authors accept those criteria if they are sufficiently “rigorous.”
The invocation of “culture wars” depends on a contentious reading of the statement’s motivations. Dr. Eberl et al. suggest that the authors of “Catholic United” were motivated by culturally divisive attitudes and a fearful suspicion of the medical profession. But those authors were writing in response to the recent tussle over the A.A.N.’s proposed revisions to the legal definitions of death, as well as to a joint letter, authored by the prominent and widely respected Catholic bioethicist Daniel P. Sulmasy and others, calling for Catholics to unite around opposition to those revisions. [Editor’s note: Dr. Sulmasy is also one of the co-authors of the letter printed above.]
The central claim of “Catholics United” is accepted by much of mainstream bioethics. For example,AJOB Neuroscience, one of the most influential bioethics journals in the world, devoted a recent issue to the topic and exhibited a near-complete consensus on the misalignment between the currently accepted criteria for diagnosing brain death and the legal requirement that all brain functions must have irreversibly ceased before the declaration of brain death. Even the neurologist James Bernat, whom Dr. Eberl et al. cite as a leading authority on the issue, acknowledges that mismatch and the significance of continuing hypothalamic function.
At the same time, Dr. Eberl et al. show greater appreciation than “Catholics United” for the difficulties of medical practice in a time when Covid and other experiences have significantly eroded trust in the medical profession. It makes sense for Dr. Eberl et al. to interrogate the new bioethical conclusions found in “Catholics United” to ensure that they do not merely express an unreasonably suspicious attitude or fail to attend to the real particulars in which medical professionals work with patients and their families.
Further, if more patients and families refuse to allow organ donation after a declaration of death, on the grounds that they may not be dead according to widely accepted criteria, then many patients with end-stage diseases may never get their chance for a longer life, and many families may never experience the solace of knowing their loved one’s death meant life for another.
“Catholics United” suggests that Catholic hospitals should “[r]enegotiate agreements with organ procurement organizations” and, failing that, “consider shutting down deceased organ donor transplantation programs and ending these agreements altogether.” Peremptorily recommending that Catholic hospitals defyfederal regulations evinces no real appreciation for the existential threat doing so would pose to Catholic health care.
These potentially adverse consequences of the statement’s recommendations, of course, cannot pre-emptively settle a controversy that is roiling bioethical waters far beyond Catholic health care, but they must be honestly and clearly acknowledged and confronted. Better ways to understand and address these challenges may be found—but only when all sides engage the conversation with a commitment to charity and to real engagement with the implications of the debate.
Randy Colton is a certified health care ethics consultant in Catholic health care. Dr. Colton is the author of Repetition and the Fullness of Time: Gift, Task, and Narrative in Kierkegaard’s Upbuilding Ethics, as well as articles in a variety of general-interest and academic publications.
