Posted on June 9, 2020 at 9:00 AM
by Thomas D. Harter, PhD, Mary E. Homan, DrPH, MA, MSHCE
COVID-19’s emergence in the US has once again thrust the field of bioethics in the public spotlight. While many individual ethicists have been asked to opine on a variety of pandemic related issues, the general focus of bioethics conversations and concerns relate to the direct threat the pandemic poses to overwhelm the capacity of scarce, life-saving resources in acute care settings. Of primary concern is the possibility that shortages, and subsequently rationing, will occur, causing situations in which patients may be denied life-saving resources or having resources that were originally dedicated to a particular patient reallocated to another patient. As many hospitals, health systems and governing bodies have been furiously working to rapidly develop plans to address this possibility, the omnipresent theme is how to develop allocation plans justly and fairly. Bioethicists, as experts in ethical and moral reasoning, are not just being asked for their perspectives on this issue but are being relied upon to provide guidance and direction for health institutions in the development of allocation plans (Iltis and Rasmussen 2016). This essay explores the some of the ways in which the bioethics community at-large has assisted, and sometimes stumbled, in its mission to answer this call and why.
COVID-19 is testing the bounds of how seriously the field of bioethics takes the principle of justice. On one hand, the field has done a remarkable job with raising questions and having nuanced conversations about how best to allocate scarce resources. As members of multiple bioethics listservs, we can attest to the overwhelming flurry of emails discussing COVID-19 related allocation plans and questions about what specific institutions are doing to manage various medical problems or scenarios. Questions about what principles should guide possible triage decisions have become the new norm of conversation. Principles including “first-come, first-served,” “life-cycle,” “lottery,” “physician judgment,” “prognosis for short-term or long-term survival,” “maximization of life years,” and “instrumental value to others,” have dominated recent discourse. References to a small number of studies and state-wide plans have been used to buttress arguments that the morally best ways to think about resource allocation and other similar issues, such as unilateral Do-Not-Resuscitate orders for patients with COVID-19, is through the lens of medical metrics. Many arguments have centered on the idea that physicians simply do not have the luxury of time to seriously consider and reflect on anything but medical metrics when, in the middle of the night, a decision has to be made about which one of two patients gets a ventilator and which one subsequently is provided palliative care in which death is the expected outcome.
We are both clinical ethicists in practice and by training, one a philosopher and the other a theologian. We both operate with one foot in the clinic and one foot in academia and research. As such, we both understand and sympathize with the need for allocation plans that are logistically sound and graceful in design and simple to operationalize in practice. We empathize with anyone in a morally burdensome situation in which a medical decision predictably will result in a person’s death. We neither take that burden lightly, nor do we shy away from it. Morally we would not nor cannot.
It is because we have feet in both clinical medicine and academic bioethics, however, that we believe bioethics has failed the test of COVID-19. As clinicians working in the upper Midwest in systems that primarily serve rural and remote populations including the Amish and members of the Ho-Chunk Nation (TDH) as well as a large, urban, African-American population (MEH), we not only recognize how health disparities exist in these populations, we have seen first-hand the impact of these disparities in our clinical ethics work. Our experiences have taught us that the cultural values of these populations often dis-align with the values that dominate medical practice. I (TDH) have been involved with multiple ethics consults with the Amish in which clinically sound medical recommendations were refused because abiding by the recommendation would require the patient or family to act in ways not supported by their religious beliefs or community culture. For the Amish, saving a life is not as important as ensuring medical decisions remain in communion with God, even when that might be the life of a neonate. In my (MEH) community engagement work, some mothers described traumatic perinatal incidents such as such as threats of child removal at delivery, coercive medical practices, clinician disrespect and discrimination. Both of our examples magnify the distrust certain groups have of the health care system because of a difference in values and meaning.
As academics we have been trained to not to assume that one’s values should dominate or be prevalent over another’s. Bioethicists are trained to consider how values can demonstrate bias and that justice and fairness require minimizing the potential for bias in medical decision-making. Determination of what values or principles should guide the resolution of various ethical or moral dilemmas in medicine not only requires thoughtful deliberation, but open conversation and consideration from all stakeholders to a decision. This is where bioethics has stumbled during COVID-19.
Despite broad recognition and agreement that allocation strategies should include the voices of minority communities, bioethicists have either been involved in developing plans (including the authors) or have endorsed allocation plans in which there is no evidence that minority voices have contributed to those plans. When some bioethicists have publicly raised the question about involving minority populations in the development of various allocation plans or strategies, those voices tend to be silenced by those who insist allocation decisions, such as those expected with COVID-19, are simply clinical in nature. Although there is some admission that allocation strategies driven by medical metrics may result in exacerbating certain health disparities, public replies on bioethics listservs and in bioethics blog comments have tended to diminish the seriousness of the consequences and the potential damage to the already fragile relationship US health care has with minority and other disenfranchised populations.
For example, the widely cited 2018 Chest article by Biddison, et. al., in which the Maryland ventilator guidelines were assessed and vetted by laypersons in a mixed methods study, has been touted as an example of good community engagement in allocation plan development and used to support medical metrics as the superlative driver in allocation decisions. Certainly, the community engagement aspect of this study should be lauded. But the study includes a finding that generally has been overlooked in bioethics conversations. African Americans – both health care workers and laypersons – were less likely to favor the principle of “saving the most life-years,” and far more likely to favor the principle of “first-come, first-served” regarding ventilator allocation decisions (Biddison et. al. 2018). Yet, most public-facing allocation plans – and public bioethics discussion of those plans – has favored “life years” as the fairest metric without further consideration that “first-come, first-served” may be more important to certain patients or communities.
Like Frankenstein’s creation, the field of bioethics was originally stitched together from multiple disciplines (Jonsen 2011). Bioethics has spent the better part of the last fifty years attempting to distinguish itself as a field in its own right, and not merely a specialty or sub-specialty discipline of some other field such as philosophy or medicine. Yet, by virtue of those in academic and clinical bioethics wanting to distinguish themselves as members of an independent, free-standing field, bioethics has now become siloed from the disciplines it was born from, and from the persons it is called to serve. Furthermore, so much time has been spent attempting to clarify what bioethics is not, that it is not clear the field of bioethics has successfully identified what it is. Our intention is not to comment on the rightness or wrongness of this perception, only to articulate this observation and it’s application to the current pandemic. One concern we see from a clinical ethics perspective is that, while those of us in the field are happy to inform other communities and disciplines of our analytical assessments of ethics and morality in medical practice, we now rarely permit ourselves to be informed by other disciplines or fields that might have better insight into minority voices, such as social workers, nurses, public health experts, or even religious voices (Geppert and Schonfeld 2018) .
Being in the spotlight is both good and bad for bioethics. On one hand, bioethics is providing important guidance and clarity, especially for a general public worried about medical decisions during the COVID-19 pandemic. On the other hand, being in the spotlight has illuminated some unsightly cracks in the foundations that need maintenance, particularly around ensuring bioethics remains inclusive, not owned by or open only to a privileged few. Before bioethics takes another step forward too hastily, it would be prudent to consider how we have stepped away from those we have been called to serve and how we might have alienated certain voices. Doing so before the next disaster will prove that we can evolve into higher forms of humanity to remain a trusted partner in health care.