Absence of ethical discourse in the rheumatology literature: comment on the article by Caplan et al.

Abstract

As an internist-rheumatologist with an interest in medical ethics, I read with some attention the article by Caplan et al published in a recent issue of Arthritis Care & Research describing the startling want of ethical discourse in the rheumatic disease literature (1). Given the prominence of bioethics in modern medicine and the often complex and challenging illness experience of those with chronic rheumatic diseases, it is all the more surprising that these conditions have engendered so little ethical inquiry in our literature. On this point alone, the report makes a contribution. Nonetheless, I have concerns arising from the formulation of bioethics employed in the study and, as a consequence, of the perception of the field that this article may foster. The authors’ choice of Beauchamp and Childress’ principle-based approach to bioethics (2) imparts an overly constrained sense of what constitutes modern ethical inquiry, and moreover, may have seriously limited their methodology. As demonstrated, principlism places priority on 4 principles: autonomy, beneficence, nonmaleficence, and distributive justice, concepts believed to demarcate the boundaries of ethical discourse. Although certainly an important and influential paradigm in modern ethics, it is far from the only approach. Indeed, principlism is viewed by many to have serious limitations (3,4), which would have been evident if the authors had used broader search terms and assumed a broader concept of what is considered ethical inquiry. For instance, where is medical professionalism (5) in this construct? What of virtue ethics with its emphasis on character and such traits as compassion, trustworthiness, integrity, and conscientiousness? There are also the feminist approaches focused on caring, nurturance, and kindness, the stories of narrative ethics and the cases of the casuists, or the pragmatists who begin with the problem (rather than the principle) and then seek satisfactory solutions. Each of these perspectives has their own vocabulary upon which a methodology for this study might have been developed. Furthermore, a host of specific subjects of an ethical nature could have also been included. For instance, what of informed consent, confidentiality, bioethics, truth telling, and quality of life? Finally, it is important to distinguish the fields of clinical or medical ethics from research ethics, as the latter is tacitly overrepresented in the article by Caplan et al. Note how in Table 1 in the article, virtually all of the examples cited as challenges to the ethical principles are derived from the arena of clinical research. Whether broadening the search terms would have significantly altered the general message of the study is not clear; perhaps not. Nonetheless, I believe it important that the journal’s readership appreciate that, in the view of many critics, the practical and philosophic underpinnings of bioethics are not fully captured by a principlist paradigm. Therefore, the promotion, even if unintended, of a principlist ethic should not be the message of this article. Rather, it is the absence of a thoughtful ethical inquiry in our literature that requires our attention. In closing, the authors should be applauded for bringing this issue to the attention of the rheumatology community. The low frequency of ethical reflection in our literature as demonstrated should serve as a stimulus to correct this deficiency. Having started with the publication of this article, Arthritis Care & Research should lead the effort. Perhaps a themed issue devoted to ethics and the rheumatic diseases is in order.