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 Jason T. Eberl and the other authors of “Dividing the Church on Brain Death” 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.
Debates like these risk further entrenchment in “culture war” rather than an escape from it, unless we all doggedly pursue intellectual charity and real appreciation of our arguments’ implications in our engagements with one another. Without a firm focus on these virtues, intellectual sparring can produce tendentious interpretations, obscure genuine perplexities and provide unreal practical recommendations. Though not in any way a signer or party to either the America article or “Catholics United,” I believe that considering these aspects of the conversation can clear the ground for more fruitful inquiry in the church.
“Dividing the Church on Brain Death” rightly identifies the “centerpiece” claim of “Catholics United” as the contention that the Uniform Determination of Death Act (U.D.D.A.) “is being routinely violated because it requires irreversible loss of ‘all functions of the entire brain’” for a declaration of death by neurological criteria, while emerging evidence suggests that many of those diagnosed “brain dead” have “persistent neuroendocrine function via the hypothalamus.” According to “Catholics United,” there is a gap between the public consensus on the criteria for brain death and actual medical practice, undermining our moral certainty about whether these diagnosed patients have in fact died and raising perplexities about the standards for our treatment of them.
The exchange between these two sets of authors offers an opportunity for a fruitful conversation about an ethically and culturally important topic. Two virtues serve as necessary guides of such conversations. Charity prompts us to be generous in interpreting our interlocutors and to avoid straw men; and and practical realism leads us to avoid “unreal words” and consider honestly the real impact of our own arguments. A careful analysis of these two pieces reveals room to grow in both directions.
For example, Dr. Eberl and his co-authors show an unfortunate tendency to interpret “Catholics United” in ways that render the group’s arguments more extreme and unfounded than a charitable interpretation would suggest. They inform the reader that “Catholics United” “condemned the use of neurological criteria for determining that patients have died.” But, in fact, “Catholics United” repeatedly states that some of the endorsers accept the use of neurological criteria for determination of death. Further, Dr. Eberl et al. imply that “Catholics United” maintains that “every last neuron in the brain must cease firing before we declare someone dead.” But the statement nowhere claims such a thing; it focuses instead on the cessation of all brain functions.
Dr. Eberl et al. also suggest that “Catholics United” considers “the hypothalamus’s location as being more relevant than its function.” The “Catholics United” statement does argue that, because the hypothalamus is part of the brain, its continued function is incompatible with the irreversible cessation of all functions of the entire brain. But they also emphasize an earlier statement made by another group of Catholic physicians and ethicists, who expressed “grave concern” about the possibility of continued hypothalamic function, “since this function could potentially mediate some forms of integration.” Dr. Eberl et al., by contrast, argue that the hypothalamus “does not play a central role in preserving the human organism’s integrative unity.” There is a significant disagreement here; but it turns primarily on the function of the hypothalamus, not its location.
Dr. Eberl et al. further contend that the statement’s argument may make families “feel compelled to cling to the false hope of their loved one’s technologically mediated recovery,” though the statement explicitly addresses that objection and emphatically insists that “a declaration of [brain death] is not necessary for a patient . . . to decline extraordinary means” (emphasis in original).
Finally, the invocation of “culture wars” also 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.]
Opposition to those U.D.D.A. revisions went beyond any narrow circle of Catholic bioethicists. It was likely inspired by the work of medical doctors and secular ethicists such as Alan Shewmon,Ari Joffe, and Michael Nair-Collins, as well as widely debated cases like that of Jahi McMath. It is a stretch to identify these scientists and ethicists as culture warriors, especially given the fact that they often support conclusions that almost no Catholic ethicist would endorse.
Rather than representing culture war, 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, agrees that there is a “mismatch between the whole-brain criterion of death enshrined in the U.D.D.A. and the generally accepted bedside tests to determine brain death” and that “hypothalamic neurosecretion constitute[s] a brain function and thus its presence in cases of correctly determined brain death should not be preemptively dismissed.” He offers two solutions: “tightening brain death clinical tests” (one of the paths suggested by “Catholics United”) or “loosening the whole-brain criterion of death” (one way of reading the path suggested by the America article). Dr. Bernat’s framing of the problem overlaps considerably with the analysis of “Catholics United,” indicating that the latter statement is not merely presenting an idiosyncratic concern driven by scrupulosity. The statement may be mistaken in its assessment of the significance of hypothalamic function, but that assessment is widely shared and not simply based on “culure war” ideology.
However, Dr. Eberl et al. show greater appreciation than “Catholics United” for what they call “the realities of clinical practice.” First, their mention of a “hermeneutic of suspicion” directed at the “medical profession in general,” for example, evokes the erosion of trust between medical practitioners and the general public that has become more evident since Covid-19. In my experience, this concern has real roots. I have heard I.C.U. teams nostalgically regaling new residents with stories of how patients “used to trust us.” Dr. Eberl et al. show real appreciation for these barriers to good patient care, and it makes sense for them 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.
Second, the fear that “families may feel compelled to cling to the false hope of their loved one’s technologically mediated recovery” reflects the difficult circumstances in which faithful and dedicated medical practitioners often find themselves as they try to guide families through their loved ones’ dying processes. It is entirely understandable for those regularly engaged in patient care to recoil at the thought of adding yet another burden of confusion and uncertainty on patients and families in those trying circumstances. “Catholics United” acknowledges this difficulty but does not evidence much real appreciation for the obstacles their recommendations might pose.
The America article’s references to organ donation indicate a final possible concern. The decision to donate one’s organs, provided the process is ethically acceptable, has been praised by the church’s magisterium as an act of charity, and organ donation comforts many families in their grief. Most organ donations occur after brain death, so if many patients refuse organ donation after that declaration, on the ground that they may not be dead, many patients with end-stage disease 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.
As “Catholics United” acknowledges, Catholic hospitals are bound to follow guidelines from the federal Centers for Medicare and Medicaid Services, which require cooperation with organ procurement organizations, including after brain death. At least some state laws also require that all hospitals have agreements with organ procurement organizations. “Catholics United” suggests that Catholic hospitals should simply “[r]enegotiate agreements with organ procurement organizations” and, failing that, “consider shutting down deceased organ donor organ transplantation programs and ending these agreements altogether.” But peremptorily calling on Catholic hospitals to defy federal regulations and state laws evinces no real appreciation for the existential threat doing so would pose to Catholic health care. An honest debate must include a real appreciation of these high stakes.
The “Catholics United” statement doesn’t reveal much appreciation of the potentially devastating effects its recommendations could have on Catholic health care institutions and even individual medical practitioners. These adverse consequences, of course, can’t pre-emptively settle a controversy that’s roiling bioethical waters far beyond Catholic health care; but they must be honestly and clearly acknowledged and confronted. “Catholics United” could have engaged the consequences of its inferences with more real appreciation for their effects and with more concern for how they might threaten the work of those engaged in Catholic health care.
In any case, both these sets of authors agree that, in the words of Dr. Eberl et al., “current neurological criteria should continue to be critically examined and refined” and that “there needs to be legal and moral accountability to ensure the integrity” of the process. In that vein, these two sets of authors clearly have much to say to each other and we can all learn much from them both—but only when the conversation develops with a commitment to charity and to a practical realism that engages the implications of the debate on all sides.
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.
