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Despite the frequency of ethical issues arising in patient care, ethical discourse in the rheumatology literature is negligible. To better understand the scope of ethical problems occurring in our specialty, the American College of Rheumatology (ACR) Committee on Ethics and Conflict of Interest surveyed ACR members. Specific objectives of the survey were 1) to learn the perceived frequency of ethical issues in rheumatology, 2) to identify activities that pose ethical problems in rheumatologic practice, 3) to determine the extent of education on, and self-perceived knowledge about, ethics among ACR members, and 4) to determine member interest in, and suggest content for, future ACR-sponsored educational activities related to bioethics.
The survey included 12 non–open-ended questions addressing 5 core areas: 1) ethical dilemmas in daily practice, 2) ethical concerns in basic and clinical research, 3) influence of industry, 4) ethics of regulatory policies, potential conflicts, and disclosure, and 5) personal education on and interest in ethics. Two open-ended questions were also included, asking respondents to list the ethical issues most relevant to rheumatology and to provide any comments. Data analysis was descriptive.
Seven hundred seventy-one responses were received. Respondents believed that ethical issues arise most frequently in practice and in clinical research. The most common ethical issues cited were the high cost of treatment for patients (51% of respondents) and for society (48%), and the practice of defensive medicine (45%).
The survey results suggest that ethical problems in rheumatology are of concern to the ACR membership. Further, there is a perceived need for educational programs targeted at helping members address such professional challenges.
Despite a general appreciation with respect to the prevalence of ethical problems arising in medical practice and research, very little regarding the ethical challenges in modern-day rheumatology can be found in the literature. Indeed, despite such considerations as the access to and expense of new therapies, privacy regulation, and the renewed interest in medical professionalism, it is the problem of conflict of interest that has come to dominate the professional discourse pertaining to medical ethics.
In order to update the conversation pertaining to the current ethical challenges faced by the rheumatology community, The American College of Rheumatology (ACR) Committee on Ethics and Conflict of Interest conducted a national survey of ACR members in order to identify the most common ethical issues affecting the subspecialty. The goals of the survey were 1) to learn the perceived frequency of ethical issues in rheumatology, 2) to identify activities that pose ethical problems in rheumatologic practice, 3) to determine the extent of education on, and self-perceived knowledge about, ethics among ACR members, and 4) to determine member interest in, and to suggest content for, future ACR-sponsored educational activities related to bioethics. This report summarizes the results of the survey and highlights areas with perceived major ethical challenges.
Committee on Ethics and Conflict of Interest
The Committee on Ethics and Conflict of Interest of the American College of Rheumatology was established in 1996 and reports directly to the ACR Board of Directors. Its purview—the ethics and professionalism of the College, its officers, directors, and members—involves responding to questions of ethics and conflict of interest, periodic review and modification of the Code of Ethics and Disclosure Policy and Statement, review of charges of professional misconduct by College members, and educating the membership concerning matters of an ethical nature.
The composition of the committee varies over time and includes ACR members with broad interests and expertise, including physicians from academia, private practice, and industry as well as members of the Association of Rheumatology Health Professionals. Committee members are not chosen based on their experience or training in bioethics. However 3 of the committee members at the time of the survey's development (CRM, MM, EAK), also the principle authors of this report, have extensive training and/or advanced degrees in bioethics. While not formally trained in bioethics, the fourth author and methodologist (CAM) has taken institutional ethics classes and attended seminars pertaining to bioethics.
The survey was developed in 2010 by members of the ACR Committee on Ethics and Conflict of Interest. At that time the committee was composed of board-certified rheumatologists and a PhD psychologist whose experience spanned the provinces of clinical practice, basic and clinical research, education, pharmaceutical development, and medical ethics. In preparation for the survey, the committee convened to review and discuss the current ethics literature relating to rheumatology and to develop a survey based on literature review, expert opinion, and consultation. A pilot of the survey was conducted with several practicing rheumatologists at the Hospital for Special Surgery and the Thomas Jefferson University Medical Center. Comments and suggestions concerning the content and structure of the questionnaire were considered, and a number of minor adjustments made. The Institutional Review Board of the Hospital for Special Surgery approved this research.
The selection of the final questions was based on consensus. It consisted of 12 non–open-ended questions addressing 5 core areas: 1) perceived ethical dilemmas in daily practice, 2) ethical concerns in basic and clinical research, 3) influence of industry, 4) ethics of regulatory policies, potential conflicts, and disclosure, and 5) personal education on and interest in medical ethics. Two open-ended questions were included, asking respondents to list the 3 ethical issues most relevant to rheumatology, as well as to provide additional comments.
All US physician members of the ACR were sent an electronic invitation on October 1, 2010 explaining the purpose of the survey. International members were not included due to potential cultural and health care system inhomogeneities. Membership was verified via the ACR membership database. The survey was distributed with Checkbox survey software and was designed to be completed and returned electronically. A second solicitation was sent on October 25, 2010 asking potential participants to complete the survey by November 1, 2010. The anonymity of the respondents was ensured.
Data analysis was primarily descriptive. The primary analysis was performed first by one investigator with training and experience in qualitative methods (CAM). This entailed using grounded theory with line-by-line coding of response to generate concepts. Through an iterative process, concepts were then grouped into categories. The other investigators independently reviewed all responses, corroborated the concepts, and through consensus, arrived at the final categories.
Frequencies were tabulated for responses to the non–open-ended questions. Responses to the open-ended questions were transcribed and analyzed with standard qualitative techniques, which involved line-by-line coding to discern categories of responses—a process performed independently by 4 investigators, who then arrived at final categories through consensus.
Responses were pooled to generate frequencies; in order to maintain complete anonymity it was not possible to determine if particular participants or groups of participants had discernible patterns of responses. Non–open-ended questions that addressed the frequency with which ethical issues occur in diverse situations had response options of “always,” “often,” “sometimes,” “rarely,” “never,” or “no opinion.” Responses of “always” and “often” were aggregated, and the resultant frequencies were calculated.
The electronic survey (shown in Supplementary Figure 1, on the Arthritis & Rheumatism web site at http://onlinelibrary.wiley.com/doi/10.1002/art.38077/abstract) was sent to approximately 5,500 American ACR members and 771 were returned by November 1, 2010, for a response rate of 14%. The majority of the respondents were male (69%). Forty-nine percent reported that their primary work setting was clinical practice, 6% were hospital based, 4% worked either in a government setting or in industry, and the remainder did not specify their work setting.
As background information, participants were asked about education in medical ethics in any capacity during their careers. Fifty-eight percent had received training in medical ethics, mostly from multiple sources, particularly workshops (65%) and university courses (34%). The majority (80%) also reported having had a role model for medical ethics, most often a clinical mentor (81%). Peers and department chairs (40%), research faculty (33%), and family members (24%) were also noted to have served in this capacity. Overall, almost half of the respondents (47%) reported they did not have adequate resources available to help them understand and resolve ethical problems.
Survey respondents were asked to rate how often ethical dilemmas (a conflict or tension between important values) arise in different rheumatology settings, with response options ranging from “always” to “never.” Forty-four percent thought ethical dilemmas occurred frequently (always or often) in clinical practice, 61% thought such dilemmas arise always or often in clinical research, and 26% reported that such dilemmas arise always or often in basic research. However, when asked about ethical lapses (failure to uphold an ethical standard that one purports to believe), fewer respondents reported that these occur always or often: 17% in clinical practice, 28% in clinical research, and 7% in basic research.
The most common practice-related ethical issues involved costs to patients and society for expensive treatments, and profits from infusions (Figure 1). Additional ethical (process-related) concerns were practicing defensive medicine, not spending enough time with patients, and caring for the uninsured or those with limited insurance (Figure 2). More than half of the respondents perceived multiple ethical issues regarding relationships with industry, the most prevalent being serving on a board of directors (76%), participating in speakers bureaus (66%), and consulting (61%) (Figure 3). Industry-related activities considered to have the fewest ethical implications were meeting with company sales representatives (39%) and with medical liaisons (30%). Seventy-one percent of the respondents answered yes when asked if they had ever discussed industry-related ethical concerns with a colleague. Sixty-five percent believed that rheumatologists should disclose any industry-related activities to their patients.
Participants also were asked about their exposure to information concerning medical ethics. Approximately 42% said they usually or often read a journal article or attended a lecture on medical ethics, professionalism, or conflicts of interest, if available. Thirty-eight percent said they would be interested in additional education on medical ethics if it were easily available, and another 52% said they might possibly be interested. Forty-four percent preferred that such information be provided in sessions at the ACR annual meeting, 53% favored web-based education, and 40% preferred journal articles. Of note, a common recommendation was that continuing medical education credit be provided to those participating in ethics-related education.
In the first open-ended question, participants were asked to list the 3 ethical issues most relevant to their practice environment and to describe how these issues posed dilemmas. Four hundred ninety participants responded to this question. Responses were grouped into themes by consensus. Illustrative comments are summarized in Table 1.
Table 1. Some responses to the open-ended question asking respondents to list the major ethical issues most relevant to their practice environment
Conflicts of interest in profiting from infusions
“Profiting from infusions when a self-injection alternative is available.”
“Not disclosing to patients conflicts of interest in profiting from infusions at their office.”
“Enrolling patients in infusion therapy preferential to alternate treatments for reasons of generating income is common, if not widespread.”
“Physicians prescribing expensive infusion drugs as first line due to profits from running an infusion center. It is fraud, and it is common.”
“Profiting from administration of treatment will always negatively affect ethical and effective treatment decisions.”
Conflicts of interest in profiting from ancillary services
“Profiting from ancillaries is a make or break issue for many practices and will continue until cognitive fees approach procedural fees.”
“Using patients as commodities to feed the most profitable areas of the practice while rationalizing that we have the best interest of the patients at heart.”
Physician–pharmaceutical industry relationships
“I am astounded by the role of money and industry influencing my area … total corruption to the point of embarrassment.”
“Pharmaceuticals ‘cordially’ leading to inappropriate treatment regimens.”
“Rheumatology ‘thought leaders’ who lecture and develop guidelines frequently have extensive well remunerated industry relationships and consciously or not move medical practices in directions favorable to industry. This is more insidious than giving sponsored talks, talking to drug reps or accepting a free lunch or dinner.”
“Drug company involvement under the guise of education.”
Providing care for those with limited or no insurance
“Inability to care for the poor or uninsured in small practices with narrow margins.”
“Downcoding to help less fortunate.”
“Providing care to Medicaid or other federal program patients who are demented and family insists that aggressive treatment for their disease is required.”
“Delay or refuse appointments to patients of low paying government insurance or non-insured due to unequivocal direct pressure from the institution to do whatever is necessary to meet the division's budget and not burden the in-patient hospital service.”
“Physicians not accepting Medicaid patients.”
“Providing care for undocumented patients.”
“Having to fudge data to get patients certain drugs.”
“Need to be black and white when only grey exists encourages you to be dishonest or bend the truth.”
“Inflation/boilerplating of system review and physical examination to allow upcoding.”
“Overbilling to make up for inadequate reimbursement.”
Prescribing costly medications
“The use of ‘thought leaders’ to promote the use of expensive medications over older, less expensive, but still effective treatments. The assassination of older medicine safety to facilitate the continued use of more expensive medicines.”
“Over-prescribing biologics for profit. Including multiple unnecessary piggyback meds (H2 blockers, Benadryl) during these infusions for profit.”
“Exaggerating side effects to generics to obtain branded product with better treatment.”
Practicing defensive medicine
“Defensive medicine is practiced by most everyone—I do not feel this is an ethical issue and will continue until tort reform occurs.”
“Defensive medicine because of runaway malpractice suits, we and all physicians are at the mercy of the legal system and highly questionable lawsuits.”
“Giving in to demands of malingerers and drug seekers who we are afraid to dismiss from our practices for fear of retribution.”
“Doctors don't want to concern themselves with old patient records because of the medicolegal liabilities they entail. This debases the quality of care for the patient.”
“Defensive medicine is so pervasive in every field that we scarcely notice it any more. Defensive practices essentially have been labeled ‘standard of care’.”
“Getting sued is like getting raped to most sincere conscientious physicians…the failure of tort reform is going to derail the quality/value movement in the end.”
Profiting from infusions and profiting from ancillary services were the most commonly cited ethical concerns. These included providing care that was overly aggressive and using finances generated by these services to cover existing infrastructure expenses. Physicians' relationships with pharmaceutical companies were considered to pose diverse ethical problems ranging from preferential prescribing of drugs, financial gain from enrolling patients in clinical trials, and influencing the content of expert rheumatology discourse. Providing care for patients with limited or no insurance posed ethical dilemmas in terms of access to care and in influencing coding to increase reimbursement. Indeed, embellishing coding for all patients regardless of insurance was also viewed as a way to compensate for general underpayment and as a way to obtain medications for patients who would otherwise not be covered by their insurance. Prescribing new costly medications in lieu of effective older and less-expensive drugs was considered unethical from the perspective of excessive cost as well as from the point of view of consultants using their expert status for personal and financial gain. Reference to the practicing of defensive medicine came up frequently, had many dimensions, and was often considered to be forced upon rheumatologists in order for them to maintain viable practices (i.e., avoidance of lawsuits saves money).
In the second open-ended question, participants were asked to volunteer additional comments. Most of the 179 individuals who provided more comments expanded on the major issues already identified; however, several new topics were identified. Some of the more controversial issues raised (though not necessarily the most prevalent items) are summarized in Table 2.
Table 2. Some responses to the open-ended question asking respondents to list comments or suggestions concerning ethical issues for rheumatology that were not addressed in the survey*
PT = physical therapy; CME = continuing medical education; IRB = institutional review board; RVUs = relative value units; PCPs = primary care physicians; ACR = American College of Rheumatology.
Overemphasis on medical ethics
“We beat ourselves up too much over these issues … We also have a huge problem with constant backbiting and criticism from our academic contingent directed at the practicing rheumatologist. Yes, office-based imaging, lab, PT etc. does result in extra income for the rheumatologist … I do not spite the extra income that my academic colleagues earn speaking, creating CME programs … Why do they consistently react negatively when a I provide a necessary service, and oh yes, happen to get paid for it?”
“People less ethical than we are trying to educate us on what is ethical.”
“I don't believe interacting with industry presents conflicts of interest … most rheumatologists do their best for patients regardless of whether they meet with sales reps … the whole issue here has been way overblown by a few zealots and clueless bureaucrats.”
“Pharmaceutical industry policy forbidding distribution of small incentives… Physicians are treated as though guilty until proven innocent.”
“Having been in this field a long time and seen revolutionary changes in drug treatment of previously crippling diseases, I feel way too much energy is spent bashing the drug companies that created these breakthrough drugs with silly conflict of interest issues.”
Conflicts with institution
“Intrusion of IRB into areas of clinical research that should not be under their purview.”
“Being told by an institution not to attend a pharma lecture when the institution itself is accepting pharma funding.”
“Due to recent cuts in hospital budgets, rheumatologists are under pressure to show RVUs and clinical study enrollment … I find this unethical and endangering patients.”
“Delay or refuse appointments to patients of low-paying government insurance or the non-insured due to unequivocal direct pressure from the institution to do whatever is necessary to meet the division's budget and not burden the in-patient hospital service.”
“Balancing your own ethics vs your ability to deal with unethical institutional reimbursement policies.”
Relationships with patients
“Patient noncompliance … lack of understanding of the seriousness of the disease … despite our doing our best to educate them. We still must respect their autonomy.”
“Limited time to explain complex diagnoses and risks/benefits of medications.”
“People who live long distances away can lead to ethical issues of responsibility.”
“Legal obligations for documentation are excessive. I shouldn't have to get them to sign a 10-page disclaimer each time I prescribe a medicine. This compromises the doctor–patient relationship.”
“In pediatrics, when parents do not comply with recommendations for treatment—is this medical neglect and a legal issue?”
“Patients get upset if I am not willing to embellish the disability form.”
“Online/social networking/e-mail interactions with patients and families.”
“Conflicts arise when patients expect you to be their lawyer rather than their physician.”
“Minimizing treatment risks of serious adverse effects.”
“The expense of some therapies focusing on the ‘worried well’.”
“Physicians criticizing other physicians' care with the patient.”
“Third parties forcing me to use medications in a tiered approach that constitutes a substitution of my clinical judgment. My ethical concern is that decisions … are being made by an algorithm, not a clinician. This is practicing medicine without a license.”
“Academic physicians pushing their agenda for personal and professional career gain.”
“‘Opinion leaders’ are frequently for hire.”
“Research groups taking poor care of patients who do not qualify for their clinical trials.”
“Profit issues involved in recertification testing … these costs are growing outrageous and seem to undermine the true goal of such recertification.”
“Rheumatologists testifying against rheumatologists in malpractice cases and inquiries.”
“Release of patients by private practice rheumatologists upon change/loss of insurance many times without appropriate care during transition.”
“PCPs are poor about taking responsibilities … I am to the point where I will cease to see these patients … this harms patients and I feel ethically wrong to make them suffer.”
“Reporting on other physicians' errors.”
“Seeing patients more often than is necessary.”
“Using trainees to increase productivity … and overuse of physician extenders.”
“Expenses should be controlled for in the same manner … foreign members/attendees get full funding for meetings … while we are restricting ourselves … anytime there is a dual standard everyone sees it … our trainees see this as what they can aspire to.”
“Accepting financial support from the pharmaceutical industry has turned the national meeting into an infomercial of dubious credibility.”
“ACR-developed treatment guidelines written by experts with obvious conflicts.”
“ACR should play a greater part in advocating for patients and preventing unnecessary and unethical patents and patent extensions.”
“ACR pays its ‘performers’ at meetings large sums and charges members increasingly higher fees for attending.”
“ACR should have ethics codes for rheumatologists (who make careers of being) expert witnesses.”
Some respondents stated that concerns about medical ethics are overemphasized and not in touch with the realities of rheumatology practice (“I think we are worrying too much about ethical issues and not enough about the practical issues that lead to ethical issues.” “We are in a different world now … if doctors were able to communicate without being threatened … we could accomplish much more … trying to do the right thing has to be balanced.”). Some commented that rheumatologists might have the fewest ethical issues because they are in a low-cost specialty and “the problem is far larger in the total world of medicine.” However, conflicts with institutions to generate revenue from rheumatology practices were perceived as sometimes adversarial. Respondents also identified many potential ethical dilemmas in their relationships with patients, including lack of adequate time to spend with patients, addressing noncompliance, embellishing records at patients' requests, and using online communication. Respondents were also concerned about threats to their professionalism and autonomy and cited ethical problems arising in their relationships with other physicians. Some respondents had strong opinions about the role of the ACR, particularly with respect to relationships with pharmaceutical companies and being more active in patient advocacy.
Some respondents were pleased that this survey was conducted (“This is a huge issue for rheumatology.” “This is a topic that has long been ignored. I feel strongly that conversations about ethics should be part of all ACR sponsored conferences.” “Although my comments may seem critical, I applaud the ACR for at least starting to address this.”). Other respondents said this survey was not a necessary or worthwhile undertaking (“I would not like to see much of my dues money going to these sorts of programs … we have many more pressing issues to deal with in rheumatology.”). Further, some thought it was not sensible to spend time discussing ethics because it is an intrinsic personal characteristic (“A physician usually has ethics or not before going to medical school. You cannot school someone in ethics.” “All the courses and articles in the world are not going to make a person ethical.”).
Comments were also made about the survey. Some respondents thought that asking for “yes” and “no” responses was cursory and inadequate to address complex issues; others believed it too simplistic, as “everything can potentially pose an ethical problem.” Others thought the survey was biased toward focusing on relationships with industry and money-making activities with little attention to other conflicts such as academic pressures and research interests (“If you are unethical you can lie to the NIH just as easily as you can engage in deceptive practices with industry.”). Some respondents commented that the survey did not sufficiently encompass different degrees of ethical challenge (“This survey will skew answers because it lacks recognition of the variability of abuse”); it was also viewed by some as insufficiently nuanced, not acknowledging that what is ethical “may depend” on the circumstance. Finally some thought the survey was useful because it highlighted that “there are a number of areas in which ethics plays a role” and that “ethical dilemmas are grey and therefore debatable.”
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.
All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. MacKenzie had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study conception and design. MacKenzie, Meltzer, Kitsis.
Acquisition of data. MacKenzie, Meltzer.
Analysis and interpretation of data. MacKenzie, Meltzer, Kitsis, Mancuso.
The authors acknowledge members of the ACR Committee on Ethics and Conflict of Interest who participated in the development of the survey used in this study: Drs. Robert Yood, Gloria Higgins, Bernard Rubin, John Jenkins, and Carol Greco. We are grateful to the ACR for its support of the project and specifically to Ms Julie Anderson, the staff liaison to the committee.