Raymond Barfield (Duke University) concludes our roundtable on healthcare and religion with his response to the roundtable, “To Reimagine Healthcare, We Must Remember Who We Are.” The September issue of the Forum explores the place of religion and the academic study of religion vis-à-vis the healthcare debate. In light of Congress’s ongoing effort to reform the US healthcare system, we have invited a handful of scholars of religion to discuss the role of religion in the broader national conversation about health and healthcare as well as the potential contribution(s) of scholars of religion to this national dialogue. We invite you to join the conversation by sharing your thoughts and questions in the comments section below.
- Mark Lambert (University of Chicago), The Trump Administration, Immigration, and the Instrumentalization of Leprosy
- Courtney Wilder (Midland University), Disability Theology and the Healthcare Debate
- Philippa Koch (Missouri State University), “The seeds of compassion and duty”: An Early Americanist Take on Healthcare
- Raymond Barfield (Duke University), To Reimagine Healthcare, We Must Remember Who We Are
by Raymond Barfield
Mark Lambert, Philippa Koch, and Courtney Wilder each express a different version of frustration with the current debates about healthcare reform, and they draw from Medieval, Enlightenment, and contemporary perspectives to offer glimpses of other, and better, ways to frame this collective project. At the base of each critique, they identify something I think is best called “fear.” We are afraid of others who are different, either because they are “disabled” or because they are “foreign,” and we are afraid of our own vulnerability to sickness and death. Taken together, their articles provide a rather complex assessment of both the value and the potential harm that religion brings to the discussion. Communities of faith have theological resources to resist damaging confusions such as the identification of disability with sin, and they can appeal to aspects of their own historical traditions, such as those of Early American Calvinism, to remind us of our duty to care for the suffering. At the same time, misguided religious frames can lead to deeply harmful distortions of scripture to create tortured connections between diseases of the body and diseases of the soul, putting these in service to moral evils such as xenophobia. As a physician who primarily works at the bedsides of patients, I am left with many questions about why we are so afraid, and I wonder what faith communities can do to help us—all of us—with our inevitable experience of illness, suffering, and death. Unless we understand what we are afraid of, what we care about, and what kind of healthcare we want, we will not be able to have the conversation we need to have about healthcare reform.
In order for healthcare to recognize and respond to suffering adequately, it must attend to a person’s broader experience of suffering, an experience rooted not only in the patient’s bodily responses to disease, but also deeply impacted by their relationships and communities. The threat that illness or infirmity poses to these relationships contributes substantially to the experience of suffering. Likewise, the threat that bad healthcare policy poses to specific communities within which people experience illness, or to the institutional structures that impact our experiences, can increase suffering.
Many clinicians have worked to build a stronger conceptual framework for practicing medicine that includes a robust engagement with the patient’s experience of illness and suffering, a framework informed by the patient’s own sense of value and the values of the patient’s community, with value understood as a complex concept that goes well beyond the strictures and parlance of “autonomy” abstracted from the concrete venues in which guiding values arise. That said, however obvious it is that medicine should be responsive to the ways in which patients value experience and use that sense to make decisions, there are many obstacles in modern medicine that threaten to override the patient’s sense that decisions are truly related in an important way to the values that guide other parts of his or her life. There are corollary obstacles in medical education and institutional policies that threaten to render some physicians less responsive to the patient’s values as properly determining the goals of medical care. Many important advances in the global efforts to care for the whole person have arisen in social work, hospice care, hospital chaplaincy, and home-health services. While these programs do indeed represent a committed response in the medical arena to relieve suffering, the larger issue of re-evaluating the goals of medicine, goals that have come under increasing scrutiny in the course of the debate on healthcare reform, requires much more work. A preamble to this work is the recognition that any discussion of the appropriate ends of medicine challenges us to offer candidate definitions of concepts such as “value,” “health,” and “human flourishing.” This is one important place where faith communities might have something important to say. It is also a place where faith communities might fall short, either by ignoring these important issues, or by misappropriating their own traditions and theology to further a damaging political agenda.
Functional understanding of these central concepts in the course of debate on healthcare in the United States must extend into the very communities where “value” is regularly defined and values are ordered, including communities of faith. Such communities have long histories of confronting suffering and of helping people to order their lives, and no robust discussion of the ordering of values can be carried out apart from what individuals, living in particular communities, identify as valuable. It is important to recognize that the burden of responsibility will then necessarily be shared among such communities, physicians, and patients. In this form, the partnership of medicine with communities will be attentive to the place and purpose of medical care in the context of the person’s life and better able to serve their specific needs.
One important issue that promises to be significantly impacted by such cooperative attention to value, as it bears upon decision making in an individual’s life, is the common demand of medicine that we pursue biological life at all costs, without acknowledging that while length of life is a great good, its “goodness” depends in some important way on the quality of life. “Quality,” in turn, is profitably viewed as one aspect of our experience grounded in the concrete questions of what we actually value, and why. The culture in which the practice of medicine exists exerts a huge influence on the ways in which decisions are made and the weight that is given to quality of life, understood as the experience of life determined by what is valued by an individual in light of their circumstances. As long as medical science is viewed exclusively, or even primarily, as a means of “defeating” disease, disability, and death, physicians will continue to have unobtainable demands placed upon them and their practice, demands that are tethered to this singular goal without reference to the vast array of things that have constituted value and quality in the remainder of a person’s life. It is here that we can begin to examine the necessity and prudence of soliciting resources outside the field of medicine for help, both at the bedside and in our policy debates.
Faith communities are an important (but underappreciated) resource in part because their very structure and practices aim toward forming moral communities in which people’s lives are ordered not only in light of our mortality, but also in light of the way in which our mortality relates to other hopes and notions of what is good and valuable in life. It is for this reason that Sondra Wheeler, in her book Stewards of Life, observes that nearly “every serious decision about the treatment of the sick has theological implications.” Such implications are often first expressed in the fundamental question, “Why is this happening to me?” This is a question that genuinely seeks a theological response that will be meaningful in the course of decision-making. In this age of health reform, with its variably-disturbing discussions about the role of targeted rationing in curbing healthcare spending, these issues will grow more acute, and religious resources should not be overlooked or dismissed as potential sources of wisdom and guidance when confronting such complex questions.
Religious and spiritual influences in decisions about the kind of healthcare we desire in this country should not be underestimated. For example, in a study of the factors that influence treatment decisions in advanced cancer patients, the patients ranked faith in God as the second most important factor (behind the oncologist’s recommendation) influencing their healthcare decisions; the oncologists ranked it last. This suggests that even physicians in fields with significant end-of-life care exposure do not fully understand or appreciate the importance of faith systems on patient decision-making. It may be that some of this discordance arises from the understandable ways in which the scientific community has historically ordered the provision of medical care more towards the cure of disease than toward attention to these complex influences on decision-making in the face of medical limitations. By its very nature, attention to the biology of disease and disease-theory proceeds without attention to the patient’s subjective individual experiences, nor to the impact of factors outside the traditional purview of medicine on a patient’s decision-making. But as the costs of our medical system increasingly preclude the applications of expensive technologies in situations where the biological benefit is negligible, decisions will not be made simply in response to biology. A corollary of this observation is that the decisions will be made based on values besides biological benefit. It is in this area that a revaluation of goals in medicine, drawing on resources such as faith communities, is both attractive and necessary. There is room for a lot of good in such a discussion, but there is also room for harm.
Such revaluation of the goals of healthcare requires some understanding of why things are as they are. In the past century, as medical science grew in its effectiveness, illness and the approach of death were increasingly experienced in the hospital setting. This trend brought with it the relinquishment of responsibility on the part of communities and Western families to care for the ill. Recently new emphasis has been placed on a holistic patient-centered care. This has the effect of bringing physicians’ attention back to considerations of the whole person who is ill, with an emphasis on family and community involvement. Indeed, some of the voices in our current debate about healthcare reform reflect this, with the attempt to shift the focus of healthcare towards preventative medicine and better access to primary care for everyone. But there are also many prominent voices arguing for policies that are friendly to such things as increases in profits for pharmaceutical companies, tax cuts for the wealthiest Americans, and cuts to programs like Medicaid that aid the poorest and most vulnerable among us. With 76% of Americans claiming some form of religious affiliation, it is imperative that we recognize that religious communities represent a significant resource, not merely as a means to physical health or reduced healthcare costs, but as powerful allies as we shape practice of medicine in the 21st century to respond to the real needs of people within the limitations of available resources, and without diminishing or neglecting other valuable goods.
Such partnerships may well hold promise as creative solutions to be explored in the future of healthcare reform, but there are challenges that must be met if medical and religious communities are going to reconsider the goals of medicine and impact policy. One challenge is finding agreement on fundamental concepts such as that of “health.” The World Health Organization defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity,” a definition which necessarily draws our attention to the many aspects of a person’s life beyond the physical or mental manifestations of a disease process. To advance any discussion of “health,” we must have some understanding of what “well-being” means, and for many such understanding draws heavily upon the existential and theological resources within our lives. Rich definitions of health demand a judgment about how we align our efforts in the pursuit of some goods in life, which themselves reflect judgments of what is valued. Every ideal, in this sense, from longevity to peace, happiness, love, and religious commitment, imply that the person’s finite resources will be put to use in attempting to realize that goal. These goals (and many others) will be ordered in accordance with their religious, communal, familial and personal values, and these goals are rightly considered in light of that central fact about our lives, namely, that we are likely to grow ill someday, we are certain to die someday, and our decisions at those times are not independent of the ways in which we have lived other parts of our lives. To understand how a person would order the “goods” in their life such that they could claim to be in a state of well-being, one must to understand what is valued in that life, and what is valued in this deep sense is arguably of critical importance to good decision-making when well-being is threatened by disability, illness, suffering, or death. This kind of discussion, far from being marginal, is crucial for any approach to healthcare reform. ♦
Raymond Barfield is Professor of Pediatrics and Christian Philosophy at Duke University. He is a pediatric oncologist with an interest in palliative care and medical humanities. He has published several books of philosophy and poetry, as well as a novel called The Book of Colors. He directs the Medical Humanities program in the Trent Center for Bioethics, Medical Humanities, and the History of Medicine at Duke.
* Feature image: Dr. Glen Komatsu of Providence TrinityCare Hospice (Los Angeles, CA) listens to a young hospice care patient. Photo courtesy of Providence TrinityKids Care. Read more about Dr. Komatsu.
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