Bioethics Forum Essay

Who “Persists” in Opposing DNR Orders? Demographics Matter

Reading “After DNR: Surrogates who persist in requesting cardiopulmonary resuscitation” in the Hastings Center Report, I was reminded of Senate Majority Leader Mitch McConnell’s chastisement of Senator Elizabeth Warren’s opposition to Jeff Sessions’ nomination as Attorney General. McConnell called for Warren’s censure by the Senate because she quoted a 1986 letter by Coretta Scott King critical of Sessions when he was considered for a federal judgeship. McConnell justified sanctions against Warren: “She was warned. She was given an explanation. Nevertheless, she persisted.” The New York Times notes that the phrase has become “a rallying cry against what they saw as an attempt by a powerful man to silence a woman who was speaking her mind.”

The phrase came to my mind as I read this report by Massachusetts General Hospital (MGH) investigators who reported on the characteristics of a small minority of families who persisted in opposing unilateral DNR orders authorized by MGH’s “Doing No Harm Policy.”

The paper has the word “persistence” in the article’s title and both the noun and its associated verb are used 12 times in text and figures to describe surrogates who resist decisions to withhold resuscitation without their consent. This pejorative language contrasts with those who acquiesced to a DNR order. They are described as families “who apparently accepted the order quietly.”  These characterizations lack the objectivity of what purports to be sociological research and instead seems a justification of institutional policies.

Just as worrisome, the editorial tone of the paper distracts the authors from important findings they report but do not fully interrogate. While they note no significant differences between those who contested versus those who accepted a DNR decision “once the policy was invoked,” they failed to comment upon the striking observation that the 19 patients whose surrogates rejected a DNR were disproportionately nonwhite (42.1%), foreign born (47.4%) and spoke a primary language other than English (15.8%). The more apt comparison would be this subset of patients against morbidity and age-matched controls of all MGH patients. Similarly, they did not report on the demographics of 6 other patients for whom a DNR order was recommended but whose physicians objected. How did these families compare to those to whom the policy was more stringently applied?

Given these demographics, might race, ethnicity and cultural norms be relevant to the invocation of unilateral DNR policies? Might the vulnerability that comes from feeling marginalized lead surrogates to request care that more empowered families might appreciate as useless at best, or harmful at worst? The literature on health disparities and bias would suggest that it is. What appears to be persistent surrogate resistance might feel like persistent advocacy to embattled families struggling to get their due.

Regrettably, we don’t know what these surrogates thought because they weren’t asked in this retrospective chart review. If the goal is the avoidance of disproportionate interventions at the end-of-life, an objective I wholly share, it is important to understand the motivations of families who request futile care, rather than to be judgmental about their choices. An appeal to narrative ethics might have helped inform investigators about why these families made the choices they did. Their stories, told in their voice, deserved to be heard.

Beyond the substantive issues raised by unilateral DNR orders, this piece presents a methodological quandary for those who seek to meld empirical and normative bioethics. In a scientific paper, where data is presented, the implications of results are discussed and analyzed in a distinct discussion section. There is an effort to strictly segregate data from their implications. Even the descriptors of results are labeled in a neutral fashion lest any bias or point contaminate the “purity” of the results. The intent behind these often- formulaic approaches to the presentation of methods, data and analysis is to be clear about what was discovered and what might be inferred from those discoveries. No scientist wants to get ahead of the data.

So, the question follows, is all this true for social science research, and in particular bioethics research which seeks to explore values through the production of numeric data? Do the same editorial rules apply? Is the application of traditional scientific editorial norms protective of scholarship or does it constrain a more creative approach to the exploration of questions that straddles the proverbial two culture divide between the sciences and the humanities made famous by C.P. Snow?

Addressing the question inductively from this essay, it would seem that the entry of value propositions about DNR orders distracted the authors from important aspects of the data that ran counter to their presuppositions and biases. By characterizing surrogates whose behaviors opposed unilateral DNR orders as “persistent,” and those who agreed as “quietly” acquiescing, the authors might have become vulnerable to a conceptual blind spot, viewing race and immigration status as potentially key variables which might have explained, or perhaps predicted, behaviors that they found objectionable. Once the authors locked in on their normative characterization of these behaviors they became less likely to entertain alternate explanations for why they occurred. Their biases became self-fulfilling.

Clinical bioethics, like medical practice, is best practiced when there is a causal explanation for observed behaviors. In this case, it was important to appreciate that one potential explication for “persistent” resistance to unilateral DNR orders might have been the vulnerability of social marginalization.  The likelihood of considering this possibility became less likely once the behavior was labeled in a pejorative way as persistent. Given this, it seems best to withhold moral judgment until sociological data is given proper scrutiny. As the old adage goes, good data makes for good ethics.

But we are left with remaining challenges about how to make the leap from numbers to values when using empirical data to inform normative thinking. If value propositions are intrinsic to hypothesis generation in blended bioethics research, is it possible to dichotomize data collection from analysis? Moreover, by trying to do so are we simply hardening the very silos that make interdisciplinary scholarship necessary?

As bioethics makes its turn towards empiricism, we need to ensure that methods are worthy of the questions that are asked.  A constructive critique of this emergent scholarship can help realize the substantial potential of this effort.

Joseph J. Fins, M.D., M.A.C.P., is The E. William Davis, Jr., M.D. Professor of Medical Ethics, chief of the Division of Medical Ethics, and a professor at Weill Medical College of Cornell University; director of Medical Ethics at New York Presbyterian Weill Cornell Medicine; codirector of the Consortium for the Advanced Study of Brain Injury at Weill Cornell Medical College and The Rockefeller University; and  Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School. He is a Hastings Center board member and fellow, and the author of Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness.