Bioethics Forum Essay
Quality of Life? Suffering? Covid-19 Intensifies Challenges in Discussing Life-Sustaining Treatment
The Covid-19 pandemic has stretched health care resources to the breaking point, particularly the mechanical and human resources essential to intensive care. Although Covid-19 continues to inflict utter havoc and compound pre-existing poverty, inequality, and disparities in much of the world, in many areas of the United States we find ourselves slowly recovering from a relatively unprecedented resource nadir, cautiously reapproaching a tentative sense of normalcy with respect to health care operations.
At its peak in the U.S., the pandemic magnified the inherent difficulty and stress of conversations involving life-sustaining treatment by forcing clinicians and patients to engage in life-altering discussions via telephone and video conference, restricting nonverbal communication and eye contact, and eliminating the benefit of simply having another person nearby in time of crisis. Constrained nonverbal communication requires greater diligence and specificity with respect to the words we use and the context in which we employ them, and therefore lays bare some of the underlying communication problems with which medicine continues to struggle. Among these is the use of subjective, value-laden terminology combined with the simultaneous assumption that a given term has the same meaning, quality, and value for all involved.
Medicine is rife with subjective terminology that may serve as a hotbed for clinical conflict and miscommunication. In the late 1980s and early 1990s “futility” underwent a period of significant analysis, eventually culminating in the notion that the term suffered from a degree of specificity that left it open to misinterpretation and confusion, inculcation of provider values, and an increased risk of sanctioning unilateral action. While the term has since fallen out of favor, medicine continues to struggle with subjectivity, particularly with respect to terms such as “suffering,” and “quality of life.”
The idea of “suffering” has garnered significant debate within the ethics literature. As scholars like Eric Cassel and Erica Salter have described, suffering is a subjective, value-laden term that can be difficult to assess and intervene upon. In her article in the journal Nursing Ethics, Salter argues convincingly that the effective use of the word suffering while making medical decisions requires an explicit definition, which in turn reduces the likelihood that clinicians, intentionally or not, instill their own values into these decisions. She goes on to note that increased specificity of the term may allow providers to assess and assuage particular factors contributing to third-party perceptions of suffering, thereby alleviating some of the underlying factors contributing to their concerns.
“Quality of life” endures a similar lack of specificity among individuals and academic disciplines. With a rising focus on systems-based quality improvement, medical literature regarding targeted instruments to measure quality of life has undergone a steady increase. A recent PubMed search for “quality of life” and “measurement” returns 106,131 entries since 1972, of which 68% have been published in the last 10 years. Public health metrics, such as the WHOQOL and CDC-HRQOL-14 Healthy Days Measure, are used to compare regions and countries, and allocate resources at the national and international level. Philosophers including Allen Buchanan, Dan Brock, and Amartya Sen have offered both subjective and objective theories of the “good life,” by which maximizing the good for an individual may, to a similar degree, increase their quality of life. Sen and Martha Nussbaum have written extensively on capability theory, by which an individual’s well-being is measured in terms of the ability to complete valuable acts or reach valuable states of being. Many health systems and insurance entities reference the QALY (quality adjusted life year), a mathematical metric cited in comparative cost-benefit analyses and frequently employed in allocating medical services and resources.
The concept of quality of life arises frequently in medical situations requiring surrogate decision- making. It may be especially prominent in discussions of whether to forgo life-sustaining treatment. In the absence of an advance directive, Brock argued that we should utilize either the substituted judgment or best interest standards, depending on the amount of information available regarding the patient’s preferences and values. Both options entail an inherent degree of speculation and subjectivity regarding the patient’s current and future quality of life, perceptions of which may vary widely among individuals. In the absence of knowledge regarding a patient’s conceptualization of suffering or quality of life, clinicians may, with no malicious intent, fill the void with notions swayed by their own priorities, personal values, or professional experience.
Suffering and quality of life are only two examples of subjective, value-laden terms that are commonly used in medicine and may be understood in widely variable ways by different individuals and academic fields. As such, they can be particularly troublesome in situations with a high degree of finality, such as those regarding life-sustaining treatment decisions. Discussions regarding life-sustaining treatment are an everyday part of practice in the intensive care unit. As the Covid-19 pandemic and the accompanying need to discuss rationing limited ICU resources have made clear, the need for these conversations can become even more profound under dire circumstances and may occur with little advance warning. Seemingly innocuous differences in understanding can become sources of significant conflict and disagreement between providers, patients, families, and staff.
Terms like “suffering” and “quality of life” are inherently neither good nor bad, but the assumption that all parties agree on their meaning can be harmful to the goals of relieving suffering and maximizing quality of life as individual patients themselves defines those states. The potential for misunderstanding is even more apparent when conversations occur through the fog of a respirator, goggles, and face shield, via video or voice chat on a tablet or smartphone, with little of the physical communication to which we have become attuned and accustomed. Covid-19 simultaneously expanded the distance and constricted the time over which these conversations had to occur. Clarifying the intent and underlying context of subjective terminology in medicine may help reduce misunderstanding and conflict, and improve some of our most difficult conversations under even the most trying circumstances.
Michael Certo, MD, MM (@mikecertoMD), is a fellow in pediatric critical care medicine at UPMC Children’s Hospital of Pittsburgh and an MA candidate in Bioethics at the University of Pittsburgh. Special thanks to Lisa Parker, PhD, and Valerie Satkoske, PhD, for their mentorship on this piece.