I AIDS Update Understanding physicians'response to ... - Europe PMC

I AIDS Update

Understanding physicians' response to AIDS Kathryn M. Taylor, PhD Marla Shapiro, MD Harvey A. Skinner, PhD Joan Eakin, PhD Merrijoy Kelner, PhD

Attempts to comprehend physicians' extreme reaction to AIDS (acquired immune deficiency syndrome) have met with great difficulty since the disease brings into question traditional norms and assumptions. As the medical profession struggles to develop guidelines and policies to help it deal with this disease, it can draw on very little systematic research on the effect of AIDS on physicians' attitudes and practices. We suggest a framework developed from the literature on physicians' and society's response to other disorders that would provide a basis for organizing the ever-increasing amount of information on physicians and AIDS and would guide systematic research aimed at understanding and predicting physicians' participation in the prevention and management of AIDS. Within this framework we consider how characteristics of the disease, elements of the health care system and physicians' attitudes interact to influence clinical and personal practices. AIDS had led to new delineations -of physicians' responsibility, modification of prevailing beliefs about physician autonomy and thus a redefinition of the role of the physician in North America.

II est fort difficile de comprendre les attitudes extremes des medecins devant le SIDA (syndro-

d'immunodeficience acquise), a propos duquel on est amend d mettre en doute des normes et des suppositions traditionnelles. Dans l'etablissement de lignes de conduite et de politiques a legard du SIDA, notre profession dispose me

From the Physician Behaviour Research Unit, Department of Behavioural Science, Faculty of Medicine, University of Toronto

Reprint requests to: Dr. Kathryn M. Taylor, Physician Behaviour Research Unit, Department of Behavioural Science, University of Toronto, McMurrich Building, Queen's Park Crescent, Toronto, Ont. M5S 1A8

de peu de travaux de recherche systdmatique quant d l'incidence de cette maladie sur les positions et les actes du mEdecin. I1 existe, il est vrai, un nombre toujours croissant de donnees sur cette question; cest le propos de ce travail de les placer dans un cadre construit a partir de la documentation sur les reactions de la profession et de la societe devant d'autres maladies, et propre a orienter des recherches systematiques afin de comprendre et de prddire la participation du medecin a la prEvention et au traitement du SIDA. Nous epiloguons sur ce qui, dans les caracteres de la maladie, l'organisation des services sanitaires et l'attitude des medecins, peut influer sur les conduites personAelles en situation clinique. Le SIDA provoque une rEvision des idees recues en Amerique du Nord sur les devoirs du medecin et son autonomie.

S ince 1981 AIDS (acquired immune deficiency syndrome) has been a source of great individual tragedy and widespread public concern; many view it as the leading public health problem in North America. AIDS incorporates the gravest features of serious illness: it is universally fatal, and the accompanying infection with HIV (human immunodeficiency virus) is contagious. In the face of an AIDS epidemic public reaction has been extreme, ranging from panic and fright' to apathy or total indifference.2 Physicians' response to AIDS has been particularly complex, controversial and emotionally charged.3 As the medical profession struggles to develop guidelines and policies to deal with AIDS, it can draw on very little systematic research on the effect of the disease on physicians' attitudes and practices.4 Thus, important decisions are being made in the absence of reliable information. Yet physicians' response to AIDS will be a major factor in the outcome of public education programs, will directly affect the cost and quality of medical care for patients with AIDS, and will carry significant CMAJ, VOL. 140, MARCH 15, 1989

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policy implications, shaping societal response to the disease.5 Attempts to comprehend physicians' extreme reaction to AIDS have met with great difficulty. Because AIDS embodies the most hazardous characteristics of a number of diseases, physicians' response to the disease has been both similar to and different from their response to other disorders. However, owing to AIDS' unique configuration of disease characteristics, there is no precedent of "appropriate physician response" for doctors to follow. As North American doctors grapple with the problem of dealing with AIDS and the risk of AIDS, traditional norms and assumptions are being questioned. We can better understand the response of North American physicians to AIDS if we examine how factors relating to the disease challenge traditional pattems of medical care. In this article we suggest a framework that would serve as a conceptual basis for organizing the ever-increasing amount of information on physicians and AIDS and would guide empiric research aimed at understanding and predicting physicians' participation in the prevention and management of AIDS. A critical appraisal of the literature on physicians' and society's response to other disorders enabled us to develop a theoretical framework for examining physicians' response to AIDS (Fig. 1). Within this framework we consider how the characteristics of AIDS, elements of the health care system and physicians' attitudes interact to influence clinical and personal practices, which, in tum, leads to a redefinition of the physician's role.

Even for disease characteristics that appear in distinctive clusters, "appropriate" responses have been developed. Since hepatitis B is highly infectious and contagious, physicians are expected to protect themselves from direct contact with the body fluids of patients with the disease. In contrast, because lung cancer is not believed to be contagious, it would be extraordinary for doctors to don masks and rubber gloves when dealing with patients with the disease. For many clinical situations there are both formal and informal guidelines for appropriate physician behaviour. These guidelines are generally consistent, sanctioned and clearly mandated.7 The rules are set forth in medical school, reinforced during internship and residency training, and confirmed in clinical practice by patients and colleagues.8 However, owing in part to its distinctive disease characteristics, AIDS presents atypical challenges to physicians. In contrast to other, more traditional, clinical situations, there are no clearly defined rules for appropriate physician behaviour.9 Currently doctors have little foundation on which to build and inadequate support to maintain their professional response.10'11 Health care system

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Disease characteristics Diseases have often been classified according to their unique and their shared characteristics. The clinical and social attributes considered for such classification include cause, diagnosis, prognosis, treatment and epidemiologic features. For example, lung cancer is considered to be fatal and is often linked to the patient's lifestyle but is not contagious, hepatitis B is contagious but is not routinely fatal, and alcoholism is not contagious or routinely fatal but is linked to lifestyle. Each characteristic or group of characteristics poses particular challenges to clinicians. AIDS, with its accompanying HIV infection, appears to have a unique status because it incorporates all the disease characteristics listed in Fig. 2. None of these characteristics individually poses insurmountable behavioural problems for physicians. In fact, many solutions have been formalized by the health care system. For example, some diseases are fatal. Some physicians find caring for dying patients an arduous task.6 In response to this difficulty, palliative care units have been established in institutions across North America, in part to help physicians provide active support for the

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Fig. 1- Conceptual framework for understanding physicians' response to AIDS (acquired immune deficiency syndrome) and infection with HIV (human immunodeficiency virus).

Fig. 2 - Clinical and social characteristics of selected diseases.

significantly alters, and in turn is affected by, physicians' response to AIDS."2 This is particularly apparent in three key areas: allocation of resources to AIDS research and patient care, reactions to current and proposed legislation, and the effects of public pressure. Each issue has aroused considerable debate and elicited several different responses within the medical profession. The allocation of AIDS-related resources has been a controversial issue since 1981.13 It has been alleged that resources for AIDS research have been deliberately restricted because the illness appears to originate from within a stigmatized population, and it has been argued that funding should be dramatically increased.14"5 Not all medical practitioners agree with this view; some believe that the relatively few patients involved have been allocated an adequate proportion of resources and that support in this area should not be augmented.16 Decisions about the allocation of resources may affect physicians' belief in the potential for finding a cure for AIDS. For some practitioners increased funding for AIDS research has led to a growth in optimism. These physicians claim that if substantial human and monetary resources are allotted to AIDS research a cure for the disease will be found.'7 However, others point out that since the US declaration of the war against cancer, in 1971, ample resources have been awarded to cancer research, with little change in overall rates of illness and death; they speculate that the prospect of finding a cure for AIDS is not much

better.'8

Also a matter of debate among physicians has been the allocation of resources to patient care. Some argue that AIDS and AIDS-related illnesses should be given special priority (Globe and Mail, Toronto, Apr. 22, 1986: A15). It has been proposed that separate facilities be established that incorporate a multidisciplinary approach to the intensive care of patients with AIDS.'9 However, other physicians believe that AIDS-related medical care should remain part of the existing health care system and need not be given special consideration.4 Of particular importance to physicians is the issue of imposed legislation. According to Zuckerman,20 "at the heart of the . . . AIDS epidemic, there are fundamental tensions between the rights of the individual to civil liberty and the role of the state in assuring public welfare". The suggestion that testing for HIV antibody should be made mandatory has evoked mixed responses from physicians. Some maintain that AIDS is fundamentally a public health issue and that compulsory testing is imperative.2' Others are concerned that in plans to test populations at low risk the potential problem of false-positive outcomes is overlooked.22 Another contentious point associated with legislation is obligatory reporting of seropositivity by physicians. Some doctors believe that the health care system should assume responsibility for enforcing compulsory reporting by all physi-

cians.23 Others, however, are lobbying against such a regulation; they believe that obligatory reporting would violate confidentiality, which would cause patients to avoid testing, and that reporting of seropositivity is an individual responsibility, not something that falls within the jurisdiction of the legal system (Globe and Mail, Toronto, Nov. 4, 1987: 32). Yet another potential legislative issue that elicits varied reactions from physicians is that of requisite tracing of all the sexual contacts of seropositive patients. Some doctors who accept compulsory testing and reporting consider that contact tracing should be left to the discretion of the individual patient.24 Others, however, maintain that sexual partners have a right to know that they may have been infected by a potentially lethal virus.25 The third important aspect of the health care system is the leverage of public pressure in relation to AIDS. For example, physicians are asked to endorse certain public demands for AIDS-related policies in schools and in' the workplace.26 Some physicians feel sympathy for such public concern and agree to support measures that may be overly careful.27 Others forcefully resist supporting public requests for what they see as excessive and unnecessary precautions. Public pressure for up-to-date information on AIDS affects practitioners and evokes varied responses. Some physicians initiate discussions of issues related to the disease with all patients, but others strongly believe that initiating such discussions is not their responsibility.28 Another form of pressure faced by physicians is to ensure what the public defines as adequate protection against AIDS for patients in hospital. This, too, has been variously interpreted by physicians. Some, for example, agree that patients should have the right to bank their own blood and use it during elective surgery, whereas others oppose modifying the current health care system to accommodate what they view as unreasonable patient anxiety.29 Norms for physicians' behaviour As physicians work within the constraints of the health care system, they generally routinize their decision-making by devising both formal and informal norms.30 Although these norms may not always be consistently applied or adhered to, they stand as models on which to pattern professional action. The norms that have traditionally been embraced by the medical profession include wishing to control one's own work, feeling primary allegiance to one's patients, aiming for affective neutrality toward one's patients, declaring that one's first concern is for "the other" and believing in the availability of effective skills for dealing with illness (Fig. 3). The emergence of AIDS, however, has served to challenge these norms, and physiCMAJ, VOL. 140, MARCH 15, 1989

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cians are adopting a wide variety and range of responses. The first norm, physician autonomy, refers to the medical profession's ability to direct its own activities. Physician responses may be placed along a continuum ranging from the desire to maintain sole control of their work to the belief that physicians should be governed by an outside body. Many. physicians have a strong desire to control their own work.31 They regard self-regulation as an essential element of effective medical practice.32 Thus, one might expect physician resistance to complying with demands by insurance companies for HIV antibody testing that doctors have not ordered.33 However, some doctors accept outside control of their work. There are physicians who believe that medical care is more efficiently delivered when the profession is subject to regulation.34,35 "Primary responsibility" concerns the medical profession's perception of appropriate allegiance.36 This norm ranges from principal loyalty to the individual patient in all cases to primary allegiance to the aggregate. Many physicians declare a primary allegiance to the individual patient and regard the welfare of their patients as their first responsibility. Such physicians may be more likely to agree to a request for complete confidentiality from a patient with AIDS and not inform public health authorities.37 In contrast, other physicians espouse primary allegiance to society, believing that the welfare of the aggregate should be their first concern.38 Insistence on contact tracing for all patients with AIDS, with or without their approval, may reflect this perspective. "Affective investment" relates to the medical profession's perception of appropriate emotional involvement with patients.39 The range of this norm is from affective neutrality to emotional involvement. A considerable portion of medical school training is designed to develop and maintain affective neutrality.40 Many physicians believe that care is optimally delivered to patients under conditions of "detached concern".41 They would thus favour continuing to provide a full range of health services to all patients who become seropositive.3 Other physicians are less concerned about precluding emotional involvement with their patients.42 Some believe that intense interaction is a desirable component of a doctor-patient relationship.43 Active defence of, or vigorous denial of, the rights of patients with AIDS falls into this category of response. Homophobia is another example of emotional involvement. According to Loewy44 "it is naive to assume that all physicians have equally positive attitudes towards all patients. . . . It is equally naive to assume that AIDS patients are viewed non-judgmentally by physicians." "Primary concem" refers to the medical profession's ability to balance concem for self with concem for "the other".45 This norm ranges from paramount concem for self to chief regard for others first. Many physicians believe that the 600

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patient's welfare must always take precedence46 and must be the physician's first priority. Thus, being willing to provide emergency care to seropositive patients even when adequate protection for the physician is not available is considered part of the physician's duty."2 However, some physi-

cians have taken a less conventional view and feel that a fatal infectious disease such as AIDS legitimately precludes altruistic precepts. Such an attitude may lead a surgeon to refuse to perform elective surgery in patients with AIDS, a stance that Loewy'0 justifies as follows: "Are doctors really to be disciplined for showing reluctance to expose themselves to the risk of contracting this terrible disease when the ... infection is likely to have been acquired during voluntary sexual perversion or mainline drug abuse?" "Effective skills" refers to the medical profession's faith in its specialized knowledge and personal experience and in the availability of appropriate tools for dealing with disease.47 This belief ranges from absolute faith in the potency of medicine to serious doubt that medicine will ever be able to achieve solutions to all problems. Many physicians ardently believe in the effectiveness of their skills and consider their profession to be well equipped to alter the natural history of most diseases. One response in the face of AIDS is to believe that given adequate funding and sufficient research a cure for AIDS will be found. Another response is to question the effectiveness of present medical skills.48 Some practitioners maintain that, overall, medicine has not had a substantial effect on the natural history of most chronic diseases.49 They believe that an effective treatment for AIDS may never be found. According to Tartaglia50 the feelings behind this response are as follows: "As a group, physicians . .. set high standards for their professional performance. As such, they are particularly vulnerable in dealing with fatal illnesses which bear eloquent testimony to the limits of their mastery over disease, and tend to evoke in them an understandable, if unwarranted, sense of helplessness and inadequacy.

Changes in practices and development of new roles

The way physicians respond to a particular Autonomy Control own work

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Fig. 3 - Five key elements of physicians' response to disease.

illness defines subsequent practices of medical care. These practices include all the routine activities involved in the day-to-day management of patients and interaction with professional colleagues. Every physician adopts a behavioural response in the five areas, or norms, just discussed. Taken together these responses place that physician somewhere along the continuum of medical approach. Up to now physicians generally have been quite consistent in their selection of responses to particular diseases or clinical problems, and the position of any practitioner along the continuum has been readily apparent. When physicians approach terminally ill patients, for example, they exhibit relatively consistent behaviour. Some may not discuss all treatment options with their patients, they would not necessarily involve family members in decision-making, and they may avoid divulging potentially unpleasant or discouraging information.5" Others may prefer to share decisionmaking responsibilities with patients and their families, and they may be more willing to accept the risk of emotional involvement with their patients.52 However, in the face of AIDS and its unique configuration of disease characteristics, these established patterns of physician response are being challenged, and intricate new models of behaviour are being evoked. In dealing with AIDS, physicians are adopting complex combinations of responses, which makes their positions along the continuum of medical approach less polarized and less predictable. For example, some physicians have decided to provide active, ongoing care to all their seropositive patients53 and, at the same time, feel that patients with AIDS should be treated in isolated facilities, thus protecting physicians from exposure to potential contact.9 Since physicians are no longer selecting undeviating patterns of response, difficulties are likely to arise in predicting and interpreting their behaviour. As a result of this new tendency to combine responses at both ends of the continuum, complex changes are beginning to occur in physicians' day-to-day clinical practices. An important feature of these changes is that they are not restricted to the population at risk for AIDS but, rather, affect the delivery of health care to all patients. The changes range from subtle modifications of behaviour, such as double-gloving for routine office procedures,54 to more overt deviations from previous practice, such as refusing to perform elective surgery in patients who are at low risk but are unscreened.55 A pivotal consequence of these changes is the possible evolution of new prototypes for appropriate physician behaviour. With the emergence of AIDS and its attendant challenges there may be dramatic shifts in what have been considered acceptable and suitable responses. New delineations of physicians' responsibility and modification of prevailing beliefs about professional autonomy

are leading to a redefinition of the role of the physician in North America. In the face of exceptionally controversial responses to AIDS, physicians are struggling to develop guidelines and policies to regulate their actions. As AIDS continues to challenge and redefine the physician's role as health care provider the ensuing changes must be examined and charted. The framework that we outline provides a basis for coming to grips with the complexity of physicians' behaviour. Systematic research with this model will further our understanding of physicians' response to AIDS, which, we believe, is crucial for improving the delivery of health care, for maximizing physicians' participation in basic and clinical AIDS research, and for helping to shape forceful and effective public policy. This study was supported by grant 6606-1845-AIDS from the Department of National Health and Welfare and by a National Health and Welfare Research Scholar award to Dr. Taylor.

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Sage, London, 1976:15-37 7. Becker HW: Boys in White: Student Culture in Medical School, U of Chicago Pr, Chicago, 1961: 419-433 8. Bucher R, Stelling J: Becoming Professional, Sage, London, 1977: 257-285 9. Steinbrook R, Lo B, Tirpack J et al: Ethical dilemmas in caring for patients with acquired immunodeficiency syndrome. Ann Intern Med 1985; 103: 787-790 10. Loewy EH: Duties, fears and physicians. Soc Sci Med 1986; 22: 1363-1366 11. Zuger A, Miles SH: Physicians, AIDS, and occupational risk. Historic traditions and ethical obligations. JAMA 1987; 258: 1924-1928 12. Board of Trustees: Prevention and control of acquired immunodeficiency syndrome. An interim report. Ibid:

2097-2103 13. Lee PR: AIDS: allocating resources for research and patient care. Issues Sci Technol 1986; 2 (2): 66-73 14. Shilts R: And the Band Played On: Politics, People and the AIDS Epidemic, Methuen Inc, New York, 1987: 18-33 15. Institute of Medicine, National Academy of Sciences: Summary and Recommendations: Confronting AIDS - Directions for Public Health, Health Care and Research, Natl Acad Pr, Washington, 1986: 4 16. Arno PS: AIDS: a balancing act of resources. Bus Health 1986; 3 (12): 20-24 17. Gallo RC, Montagnier L: AIDS in 1988. Sci Am 1988; 259: 48 18. Hodgson TA Jr: The economic costs of cancer. In Shottenfeld D (ed): Cancer Epidemiology and Prevention CMAJ, VOL. 140, MARCH 15, 1989

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37. Kerr CP: AIDS and the issue of confidentiality. Postgrad Med 1987; 81 (8): 95-101 38. Gostin L: AIDS screening, confidentiality, and the duty to warn. Ami Public Health 1987; 77: 361-365 39. Pellegrino ED: The virtuous physician and the ethics of medicine. In Shelp EE (ed): Virtue and Medicine, Kluwer Academic, Boston, 1985: 237-255 40. Parsons T: On the concept of value commitments. Sociol Inq 1968; 38: 135-139 41. Fox R, Lief H: Training for detached concern. In Lief H (ed): Psychological Basis of Medical Practice, Har-Row, New York, 1963: 12-35 42. Daniels M: Affect and its control on the medical intern. Am J Sociol 1960; 66: 259-267 43. Gordon HH: The doctor-patient relationship. J Med Philos 1983; 8: 243-245 44. Loewy EH: AIDS and the physician's fear of contagion. Chest 1986; 89: 325-326 45. Charon R: Poised in equilibrium: doctors and their patients. RI MedJ 1982; 65: 29-35 46. Gillon R: "The patient's interests always come first"? Doctors and society. Br Med J 1986; 292: 398-400 47. Kissick W: Community health and medical care: a perspective. In Kover A (ed): Community Health and Medical Care, Grune & Stratton, New York, 1978: 1-28 48. Lewis CE, Freeman HE, Corey CR et al: AIDS-related competence of California's primary care physicians. Am J Public Health 1987; 77: 795-799 49. Fox RC, Swazey J: The Courage to Fail, U of Chicago Pr, Chicago, 1974: 376-384 50. Tartaglia CR: AIDS and the primary care physician [EJ. Ann Allergy 1986; 57: 77 51. Goldie L: The ethics of telling the patient. J Med Ethics 1982; 8:128-133 52. Wanzer SH, Adelstein SJ, Cranford RE et al: The physician's responsibility toward hopelessly ill patients. N Engl J Med 1984; 315: 955-959 53. Zuger A: Professional responsibilities in the AIDS generation. Hastings Cent Rep 1987; 17: 16-20 54. Watcher RM: The impact of the acquired immunodeficiency syndrome on medical residency training. N Engl J Med 1986; 314: 177-180 55. Brennan TA: The acquired immunodeficiency syndrome (AIDS) as an occupational disease. Ann Intern Med 1987; 107: 581-583

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