For the Record - May 30, 2018

This month's For the Record comes from Fellow-in-Residence Ari Schick, this year’s Tel Aviv University Exchange Fellow. Ari’s work focuses on speculative bioethics and the governance of emerging technologies.

Brain Death at Fifty and the Next Fifty Years of Public Bioethics Discourse
by Ari Schick

One aspect of my research examines how bioethics discourse has developed in relation to particular technologies and technological imaginaries, and more broadly, the past and continuing role of bioethics in addressing issues of broad public concern. One such issue, brain death, was recently the subject of the annual conference organized by Harvard Medical School’s Center for Bioethics, which I had the opportunity to attend.

The occasion for the conference’s theme was the 50th anniversary of the influential report, “A Definition of Irreversible Coma,” published in 1968 by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death. Under the leadership of Henry Beecher, the Committee was organized in response to the new phenomenon of patients being kept on mechanical ventilators without signs of neurological functioning. The report paved the way for the establishment of laws that expanded the legal definition of death to  include the irreversible cessation of all brain function,which was pivotal in warranting the unilateral discontinuation of treatment in such cases and providing a moral and legal basis for harvesting vital organs from those declared brain dead.

The conference sought to examine the legacy of the report and the topic of brain death more generally, as well as related questions concerning organ donation. After introductory sessions on the history of the 1968 report, other reports that followed, and the Uniform Determination of Death Act (UDDA) formulated in their wake, the sessions highlighted the degree to which brain death has persisted as a topic notable for the extent to which its ethical and conceptual aspects remain highly contested, even as its legal import has largely been a settled matter.  It was therefore appropriate that current issues were foremost on the agenda, and the opening event was a public symposium on the tragic case of Jahi McMath, who is currently on a ventilator in New Jersey despite being declared dead by neurological criteria in California in 2013 (the declaration is currently being contested in court).

Among the critical issues addressed during the conference were whether the generally accepted criteria for diagnosing brain death meet the statutory requirements, whether states should allow exceptions to determinations of brain death based on the beliefs of the family (as the law does in New Jersey), and whether organs may be harvested from consenting donors with severe neurological injuries who do not fully meet brain death criteria. Throughout, it was evident that the most basic question remains a matter of deep disagreement: is the concept of brain death sound, or should it be abandoned? Alternately, is brain death questionable as a definition of the biological death of the human organism, but nonetheless a valid moral and legal boundary line that provides a reasonable basis for public policy and clinical decisions? The conference was notable for bringing together many influential figures in this debate over the past decades to offer their current thinking and respond to colleagues with dissenting views.

Even as these questions were at the forefront, implicitly a second fundamental issue was at play: the role of the broader public in formulating the laws and policies that define death and the conditions under which vital organs can be harvested. Fifty years ago, it was essentially taken for granted that the way to tackle such difficult questions was through the work of expert committees comprised of clinicians, lawyers, and, as bioethics emerged as a distinct field in the 1970s, professional ethicists, whose recommendations could be translated into public policy. Over the ensuing decades, during which bioethics matured as a field of study and practice, this remained the dominant model by which various official or authoritative bodies addressed what are regarded as bioethical issues. However, many at the conference appeared to endorse a rather different sensibility: that as practical questions touching on fundamental beliefs about the nature and value of human life arise, they should be addressed with significant public input. Such a notion stands in deep tension not only with the history of bioethics discourse, but with how it was constituted at that moment, mostly among clinicians and academics, in an auditorium at the Harvard Medical School.

The 50th anniversary of the Committee’s report therefore offers an opportunity to reflect not only on the legacy of its new definition of death, but on the legacy of bioethics itself and how it contributes to addressing both “legacy” issues and those that will emerge over the coming decades as extraordinary technological possibilities come closer to being realized. The discourse on brain death—in which the apparent robustness of an initial expert consensus has come to appear problematically thin in places—gives us some indication of the need for a mode of policy-oriented bioethics that proceeds with a different understanding of its role in advancing public conversations at the intersection of biomedicine, ethics, and public policy.

I don’t claim to know exactly what that role ought to be. I believe that expert contributions to rigorous conceptual, legal, and ethical analysis are important, as is substantive, sustained public participation. I do know that as difficult as it may be to integrate the two in theory, it will be far harder in practice. We’d better start trying.