by Joseph J. Fins, M.D.
It now seems a lifetime ago. The first case of Ebola had come to the Western hemisphere and taken the life of Thomas Eric Duncan at a Dallas, Texas hospital. His death, and other cases in the “developed” world, led to a predictable media deluge, a good bit of hysteria, and predictable political posturing. As the November election approached, fear and ideology took hold, with calls for quarantine and allegations of discrimination coming from predictable precincts.
I waded into this political tempest on October 10, when I published an essay on the Hastings Center’s Bioethics Forum raising questions about the ethical propriety of unilateral do not resuscitate (DNR) orders for patients in extremis with Ebola (Fins 2015). The details of that argument are recounted in the Bioethics Forum and elsewhere (Altman 2014; Fins in press; Rosenblatt 2014a;2014b), but suffice it to say my analysis was predicated upon questions of safety, feasibility, and utility of the resuscitative act, the lack of available treatment, and the broader risk of contagion. These factors coalesced into a question of proportionality, and the balancing of clear burdens and questionable benefits of resuscitation. Realizing that this was an interdisciplinary question, I hoped to catalyze a discussion among experts in medicine, law, and ethics. My goal was to prevent idiosyncratic responses among institutions and across jurisdictions. Such variance in practice would violate due process, treating similarly situated individuals differently.
Although the argument has become truncated over time like an aging telomere, my essay was as much about what care should be provided as withheld. I called for proportionate and compassionate practice grounded in realistic goals of care, and for clinicians to discuss the efficacy of cardiopulmonary resuscitation (CPR) as they should for any other fatal condition. Most importantly, I called for measures that could prevent the cardiovascular collapse secondary to the massive fluid loss that is the hallmark of the disease. To that end, I asserted that patients should receive all standard medical measures and experimental interventions including intensive care unit (ICU) care, massive fluid replacement, and dialysis, to prevent the dehydration and electrolytes disturbances that can cause fatal arrhythmias and shock.
It seemed to me then, and now, that the prevention of cardiac arrest would make a difference in patient survival and that resuscitation was essentially a futile gesture that placed staff at risk. Mine was a contingent argument based on the lack of available therapy for Ebola patients in extremis, and one that would thus be subject to change if an effective therapy were to emerge.
Furthering the importance of a contextually situated argument, I pointed to the disanalogy of resuscitation in a patient with Ebola as compared to one with HIV/AIDS or sepsis. Patients with these latter conditions, though critically ill, can receive supportive measures until antibiotics can take hold. Even when I was a medical resident in the pre-HAART (highly active antiretroviral therapy) era, this was the case. We were able to treat Pneumocystis carinii pneumonia, often the precipitant of respiratory failure, with sulfa-based antibiotics. Because of this there was a utility to resuscitative efforts and I willingly participated in these efforts as a house officer.
I have never advocated unilateral DNR orders in HIV/AIDS, as might be indicated in Ebola, because the clinical context in the former was distinct. It was a difference that made a difference. If we could resuscitate our patients infected with HIV/AIDS and support them, there was a therapeutic possibility to reverse their decline, a prospect that was more fully realized with the advent of antiretrovirals that allowed the reconstitution of the patient’s immune response. The same could not be said in the fall of 2014 for Ebola, and we can only hope that ongoing clinical trials bring effective therapy to patients stricken with this condition.
Although I later learned that my analysis of the risk and benefits of CPR in patients in extremis from Ebola was precisely the reasoned policy of the University of Nebraska Medical Center, a nationally designated center for the care of Ebola patients (personal communication by e-mail with Angela Hewlett, MD, MS, Assistant Professor, Division of Infectious Diseases, Associate Medical Director, Department of Infection Control and Epidemiology and Associate Medical Director, Nebraska Biocontainment Unit at the University of Nebraska Medical Center, January 21, 2015), what I want to address here is not whether my analysis was right or wrong but whether or not I had the right to make that argument at all.
It seems that some took offense to what I had written. Because I had made a rational argument for limiting care because of the futility of resuscitation, and questions about its feasibility and safety, I was now at risk of prompting discriminatory practices because Ebola originated from the developing world. No matter that resuscitation was never an option for patients in West Africa. Nor that the vast majority of patients who might be the object of any such resuscitation policy in the West would be returning health care workers who became symptomatic, like Dr. Spencer in New York, or the privileged few who would be medically evacuated to the West on the one plane in the world capable of transporting a patient who was actively infected with Ebola. These patients wouldn’t be vulnerable to bias but rather subjects of very special entitlements.
I sought to avoid ideology or a fixed stance in my argument and sought to pose my analysis as a question that needed to be considered and debated. It was an inductive argument based on what we knew at the time about the disease and the risks and benefits of resuscitation, and I hope an objective presentation of applicable facts. It was not because patients had Ebola that I thought that there might be a role for unilateral DNR orders. It was more a prognostic assessment than a diagnostic one, focusing on the particulars of resuscitation in a specific context. And, as I carefully noted, that context could change if therapies were to evolved.
I believed then, and believe now, that I had a professional obligation to initiate a discussion about this critical issue, even though our knowledge base was evolving, and thus contingent. Academic freedom is most important and most stressed in times of uncertainty and crisis, but these are precisely the moments when we must have the ability to inform, persuade, and debate responsibly without restriction or sanction. Given the pandemic, we collectively had a duty to question and plan, notwithstanding the discomfort it might engender, as we questioned established norms of practice. It would have been an abdication to do otherwise.
And most importantly, to foster and sustain deliberative democracy we must engage in this dialogue civilly and honestly. It is bad form to view the analysis through the prism of ideology, seeing it as a way to justify one’s political commitments. But that seems to be precisely how we as a nation have seen our national response to threats of pandemics with Republicans and Democrats having partisan views about the pandemic.
An October 2014 ABC News/Washington Post survey revealed that only 54% of Republicans had confidence in the federal government’s response to the Ebola threat to the public health. This contrasted with 76% of Democrats who had a favorable view. What is of concern is that this is pretty much the opposite of how respondents assessed the government’s response to avian flu in 2006. With the party opposite in power, 72% of Republicans expressed confidence in the federal government’s response as compared to 52% of Democrats (Dennis and Craighill 2014).
These data are reminiscent of the politicization of the debate surrounding Terri Schiavo and efforts to morph her diagnosis and clinical findings in a way that would satisfy a “right-to-die” or “pro-life” agenda. Then as now, the scientific facts or a medical diagnosis has to be “more than a state of mind.” While each of us is entitled to make our own value judgments about contentious issues, we need to be careful not confuse facts and values (Fins and Plum 2004).
I am not naive. I know that science is not value neutral and is itself prone to rhetorical distortions, as the philosopher of science Karen Barad (2007) has eloquently observed. But we have no hope for meaningfully and effectively responding to pressing societal challenges if we distort the facts to engineer outcomes that satisfy our preexisting biases or political allegiances. Indeed, as the pandemic threat of Ebola seems to be abating, the politicization of science has grown to epidemic proportions.
If we hope to sustain our ability to work together and govern, to debate difficult issues, we need to resuscitate civil discourse and model it as members of the bioethics community. As the late Senator Daniel Patrick Moynihan famously said, “Everyone is entitled to his own opinion, but not his own facts” (Will 2014).
The views expressed here are my own and do not reflect those of any institution or government entity with which I may be employed or affiliated. I thank Cathy Acres, Angela Hewlett, and Amy Ehrlich for their helpful comments, as well the members and staff of the New York State Task Force on Life and the Law for their insights and collegiality.