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The ubiquity of ethical dilemmas in the provision of health care is well documented, with more than 99% of primary care physicians reporting ethical problems arising in the conduct of their practices ([1, 2]). Problems occurring in the inpatient medical setting have also been described (), and similar experiences have been reported by other health professionals ([4, 5]). Problems pertaining to the ethics of clinical trials (), privacy considerations (), and conflict of interest () are just a few examples of the ethical quandaries arising in current-day medicine. Despite the widespread recognition and importance of such challenges, a recent report by Caplan et al () described the remarkable deficiency of discourse pertaining to ethics in the rheumatology literature. Their literature search of more than 400,000 published manuscripts yielded only 104 (0.026%) with ethics-focused content. Although the methodology of that study has been criticized (), indeed only a few commentaries, focused mainly on justice considerations, have appeared in the rheumatology literature ([11, 12]).
Furthermore, expanding these observations beyond the field of rheumatology, our review of the literature suggests that such issues have been explored by only a few other professional societies. These include a survey of American Society for Aesthetic Plastic Surgery members pertaining to physician attitudes concerning, and the ethics of, stem cell–based methodologies (Caplan A: personal communication), another survey exploring the threats to professionalism in the field of sports medicine (), and a third demonstrating discrepancies among obstetrics/gynecology residents and their department chairs concerning the adequacy of their bioethics training (). Finally, a survey addressing a wide range of general ethical issues in the practice of medicine was recently conducted on a popular medical web site (). In that survey 24,000 US physicians across 25 specialties responded—“yes,” “no,” or “it depends”—to questions addressing a broad span of ethical dilemmas including end of life decision-making, truth-telling, malpractice considerations, and physician-assisted suicide, to name a few. While the results are of general interest, the content of the survey was very broad, encompassing many issues that are not frequently seen in rheumatologic practice. Further, the largest proportion of participants came from primary care (24%), with rheumatologists making up only 1% of the respondent pool. No specialty-specific breakdown was reported, limiting the survey's usefulness to our specialty.
This apparent shortage of ethical analysis in the rheumatology literature, and indeed across a wide range of medical specialties, is what provided the stimulus for the survey described herein. Based on the responses to the questionnaire, rheumatologists perceive a wide range of ethical challenges facing the academic and practice communities alike. Among the various domains of professional activity, the area most implicated was that of clinical research: 61% of participants responded in the affirmative (“always” or “often”), with 44% and 26% responding similarly for the domains of clinical practice and basic research. The rationale for this general view cannot be readily evaluated from the data and does not completely align with the specific ethical issues cited. While a lower proportion (36%) of respondents reported that ethical lapses actually do occur, they believe such lapses arise more often in the practice setting (17%) and in clinical research (28%) than in basic research (7%). In the practice setting the most important of these relate to conflicts of interest arising from perceptions concerning the overuse of infusion therapy and imaging, doctor–industry relationships, the provision of care to the underinsured, and the practice of defensive medicine. With respect to research-related lapses, profiting from the enrollment of patients in clinical research and matters pertaining to bias and honesty in research were often cited.
Although the non–open-ended questions made up the majority of the survey, in many ways it was the open-ended component that proved the most revealing. As can be readily seen from the samples provided in Tables 1 and 2, these questions sparked passionate commentary. In addition to the ethical problems discussed above, concerns were noted regarding a number of issues, including medical professionalism, conflicts with one's institution, and patient–physician relationships (for instance, embellishing symptoms in order to obtain approval for drugs). Even the premise for the survey was viewed with some skepticism, with some citing an “overemphasis” on medical ethics and referring to the survey's initiators (presumably the authors) as “a few zealots and clueless bureaucrats.”
From academia to practice, from corporations to the ACR, almost everyone came under fire. Those from academia are viewed by some as powerful, self-serving (through their control of practice guidelines), beholden to industry, and hypocritical with respect to ethics, while the private practitioner is viewed as unethically generating income through the provision of unnecessary services and “clinical trial mills.” In addition, resentment was directed at insurance carriers (federal and private) that are viewed as forcing physicians to make unethical decisions in order to safeguard patients' welfare and to provide the best care possible. Indeed, these considerations seem to underlie the surprising concern relating to the admission that the practice of defensive medicine, now viewed as the norm, is indeed a “necessary evil by practical people who understand reality.”
When both components of the survey are considered together, several large themes emerge. These include conflict of interest, the cost of modern treatment, and a perceived deficit in ethics training among the ACR membership. Conflict of interest, when cited, most often referred to the preferential use of infusion therapies when, in the case of biologic agents, self-administered therapies of equivalent efficacy are readily available. With regard to imaging, the availability of new therapies has underscored the importance of early diagnosis, thereby advancing the use of more expensive radiographic techniques (ultrasound, magnetic resonance imaging). Indeed, rheumatology fellowship programs now view ultrasound training as vital to their competitiveness, and the ACR is developing a major educational initiative directed at training and accrediting rheumatologists in diagnostic ultrasound. As a potentially significant source of new income to the practitioner (and the ACR), some members question the necessity for and motivations underlying this movement, particularly in a time that emphasizes cost containment.
In terms of costs, the new therapies are also viewed as posing ethical challenges to the rheumatologist. Both costs to patients as well as costs to society at large are recognized, in approximately equal proportion. Indeed, it was with respect to the costs associated with therapy that the majority of survey respondents believed ethical issues most often arose. While likely a reference to the high cost of biologic agents, it is important to note that it is not just this class of drugs concerning which issues of cost have arisen recently. Much the same could be said when considering the new therapies for gout.
A connecting theme that might be derived from this survey is related to how these opinions might be used to inform the ACR Rheumatology Top Five initiative. This effort, as part of the American Board of Internal Medicine Foundation's Choosing Wisely campaign, is a formal attempt by various medical societies to engage the practicing community in addressing costly waste in the system through recommendations concerning the elimination of low-yield diagnostic procedures and therapy in the practice of medicine (). Thus, our survey would appear to reinforce the perceived need to address issues pertaining to costs of therapy as well as expensive diagnostic practices.
Some comments concerning the study methodology are in order. First, the rate of response to the survey was low. However, this is not unusual when compared to similar surveys involving large national samples. Second, in order to maintain anonymity we did not obtain robust information regarding respondents' demographic or practice style characteristics. Therefore, our data analysis is descriptive only, and not stratified by participant characteristics. In addition, it is likely that the respondents represented a subset of ACR members who had strong feelings or were motivated to respond to the survey due to particular experiences with ethical issues.
The discourse concerning ethics in modern-day medicine has become much more complex since the last influential commentary in the rheumatic disease literature. In his provocative piece entitled “Not for Sale, Not Even for Rent: Just Say No” (), Panush expressed views that reflected various ethical tensions of a time in the not-distant past (2002), many of which remain relevant today. An important conclusion to be drawn from our survey is the continued need for open dialogue concerning the role of ethics in the current practice of rheumatology, a view reinforced by the above-mentioned work of Caplan et al (). So while our survey may have “struck a nerve” in some, it also presents an opportunity. Only 58% of the respondents report having obtained formal training in ethics, with almost half (47%) reporting having inadequate resources to help them understand and resolve ethical problems. As such, one of the important messages of this report may be the need for formal education, and possibly the development of mechanisms for ethics consultation, for the ACR membership. Perhaps a lack of education in bioethics has led to a lack of recognition of ethical issues, and consequently the low perceived frequency of ethical problems in rheumatology.
Indeed, as members of the ACR's Committee on Ethics and Conflict of Interest, we have all been struck by the content of the issues that come to the attention of the committee. Most often dealing with matters of conflict of interest, usually those of the organization, practically speaking the committee is not viewed by the membership as an avenue for ethical consultation and education. In response to this concern, several of the authors of this report (CRM, EAK, MM) were instrumental in initiating the Ethics Forum, published quarterly in The Rheumatologist, as a vehicle for ACR members to present cases, confront ethical apprehensions, and seek advice concerning the everyday dilemmas arising in clinical practice. We continue to encourage participation in this effort. In addition, it is our hope that the survey will stimulate the development of formal programs pertaining to ethics at future ACR-sponsored events. Indeed, the present results suggest that contemporary challenges in rheumatology call for proactive endorsement by the ACR of initiatives and programs, the development of policies, and the provision of consultation in order to deal effectively with the evolving ethical challenges that our subspecialty confronts.
It is our hope that this report will motivate broader reflection concerning who we are as professionals both individually and as an organization, stimulate more active discourse in matters pertaining to our ethics, encourage a commitment to education in this domain, and, most significantly, position these considerations in the foreground of our daily professional lives.