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December 2011 On be(com)ing a good doctorChloë G.K. Atkins My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis, New York, Cornell University Press, 2010 (248 pp). ISBN 9-78080144-887-4 (hard cover) RRP $39.95. Augustus White and David Chanoff Seeing Patients: Unconscious Bias in Health Care, Cambridge, MA, Harvard University Press, 2011 (352 pp). ISBN 9-78067404-905-5 (hard cover) RRP $63.95. How do we train medical students to become morally sensitive doctors? One of the most common answers to this question in the last 30 years has been ethics education. And, as with many other aspects of education in universities, ethics education in medical schools has moved from abstracted awareness of ethical issues and familiarity with moral theory and its role in medicine to include efforts to ‘foster students’ flexibility, sensitivity to variations in circumstance that change meaning in ethically significant ways, appreciation of other feelings and interests, awareness of their own values and interactional style, and the impact of all of these matters on ethical decision-making’ (Hundert 1996, p. 354). These changes have been accompanied by changes in pedagogical style, from large lecture style teaching to small group work and from hypothetical cases to real life cases in the clinic and to students’ own ethical dilemmas.
Such changes in health care ethics education have clearly not taken place in a vacuum. Rote learning of knowledge in the biological sciences based around lectures from expert academic and clinical staff has given way to an emphasis on student-directed learning in small cooperative working groups. Formal courses in communication skills have been introduced. Both developments are compatible with an increasing recognition that doctors need to have an understanding of ‘factors affecting human relationships, the psychological, cultural and spiritual wellbeing of patients and their families, and the interactions between humans and their social and physical environment’ (Australian Medical Council 2010, p. 2). Two recent autobiographies—Chloë Atkins’ My Imaginary Illness: A Journey into Uncertainty and Prejudice in Medical Diagnosis and Augustus White and David Chanoff’s Seeing Patients: Unconscious Bias in Health Care—provide insights into what happens to both patients and doctors when doctors do not have this understanding. Both books are North American, but the mismatches between doctors and patients occur just as frequently in Australia. Each book also raises interesting questions about how one might inculcate this understanding in trainee doctors. How do we help people to become ‘good’ doctors? Can medical education do anything? Or is formal education irrelevant to the development of skills in moral, psychological, spiritual and social understanding, sensitivity and problem solving that our doctors need to do their jobs well? Atkins’ account of her life with a serious and life-threatening illness is sobering reading. At 21, Atkins was ambitious, clever and ready to take on the world when she began experiencing pain, weakness, fatigue and partial paralysis. Her condition rapidly worsened, leading to ten years of intermittent quadriplegia, repeated emergency admissions to hospital for respiratory support and intravenous feeding and a predicable array of tests and interventions. All of this medical attention provided no conclusive diagnosis, with the result that Atkins’ symptoms were increasingly and repeatedly regarded as evidence of a psychosomatic illness. Along the way the involvement of an occasional caring and thoughtful clinician was far outweighed by those who are disbelieving, rude and dismissive. Atkins finally began to improve when her very unusual presentation of an uncommon disease which causes muscle weakness and tiredness (myasthenia gravis) was acknowledged and treated.
Atkins is a political scientist; given that, it is unsurprising that this autobiography is punctuated by perceptive comments (sometimes quite lengthy) about the causes of her misdiagnosis and maltreatment. Atkins argues strongly that the failure to diagnose and treat her appropriately did not occur because her condition was very unusual, or because her symptoms were different from the norm, or because her clinicians were incompetent. Rather, she suggests that the way that medicine is organised and practised made it difficult for her treating doctors to see other than what they expected to see. Atkins highlights a number of aspects of medical practice: the inability of medicine to cope with uncertainty and failure, which can encourage doctors to label symptoms that fail to respond to treatment as ‘psychosomatic’; the impact of financing models on health care, which means that some tests and treatments can only be authorised by particular specialists; the Cartesian divide between physical and psychogenic illness, which assigns patients’ suffering to either a physical or a psychological cause, but not both; and a reliance on inflexible diagnostic models and disease categories, so that diagnosis of a condition can become totally dependent on a positive test result. And there are other facets of her experience that she does not highlight which are equally intriguing: an understanding and sympathetic GP is almost glossed over but clearly has been central to her ‘recovery’. Seeing Patients: Unconscious Bias in Health Care by Augustus White and David Chanoff is also an autobiography and, again, it is also part critique of medicine. The first half of the book deals with White’s early years in middle-class black Memphis, followed by an account of a remarkable series of ‘firsts’: first African American president of his fraternity at Brown University; first African American to graduate from Stanford Medical School; first African American resident and surgery professor at Yale; and the first African American department head at one of Harvard Medical School’s teaching hospitals. White’s observations on the stigmatisation, discrimination and prejudice that he experienced during his career are measured, thoughtful and balanced. He is both grateful for the opportunities he received and critical of a system that makes it so hard for many other African Americans to receive a good education, go to university and pursue the career of their choice. At the end of his career White took up a senior management and leadership position in Harvard Medical School which provided him with the opportunity to focus actively on decreasing health inequalities and promoting ‘culturally competent care’. The account of this appointment provides the segue into the second part of the book—an extended essay on health care inequalities and the need for physicians to respond with sensitivity to patients with cultural mores that differ form their own. White’s discussion of health disparities across gender, race, age and sexual orientation offers no surprises for anyone familiar with public health. What is more interesting is his take on the causes of the disparities and what might be done about them. White focuses on doctors’ stereotypes of patients: ‘African Americans don’t feel pain’; ‘women don’t get heart disease’; ‘pain is just part of getting old’. These stereotypes shape how doctors ‘see’ the patient who presents to them, they influence the care doctors deliver and, ultimately, they lead to the systematic differences in access to health care services White describes in his book. Part of the solution, therefore, lies in reducing doctors’ reliance on these stereotypes and here medical education has two problems: ‘physician and trainees’ lack of understanding and sensitivity toward groups outside the mainstream, and medical students’ need to become aware of their own biases and how they bear on health care’ (p. 259).
The focus on culturally competent care connects the two parts of Seeing Patients. The limited number of African-American physicians means that few African-American patients will have the opportunity to be treated by someone who may understand what it is like to be African American in white Northern American. Increasing the number of minority doctors is important, but White thinks we also need to improve all doctors’ ‘cultural literacy’. And this is where Seeing Patients meets Atkins’ My Imaginary Illness, as both highlight how a lack of understanding of the patient experience can, at least, limit the health care provided and, sometimes, make that care downright dangerous. Atkins was a victim of a ‘diagnostic’ stereotype: for most of the people who treated her, certain constellations of signs and symptoms could only fit into the myasthenia gravis diagnostic category if accompanied by particular test results. Atkins did not routinely have these test results, and so another category, psychogenic illness, had to be found to explain her condition. This response could simply be a matter of applying a diagnostic schema too rigidly which, of itself, would not have caused the suffering that Atkins experienced. The real failure in Atkins’ situation was the failure to care when no medically acceptable answer could be found. White’s solution (at least as he develops it in Seeing Patients) to the failure of medicine to treat patients such as Atkins with compassion, care and competence is education of both medical students and academic staff. Atkin’s solution is change to the structure and organization of medical practice and health care delivery. I am interested in how one might put these two solutions together in educating medical students. Clearly, the development of cultural competence in medical students is influenced by the structures in which they learn and of which they are a part. Structural and organisational factors are at work in the knowledge offered to students, in how students absorb and process that knowledge, and in how they apply it. So, it makes sense to think about how one might bring these strands together. Developing awareness of the social context of health, illness and medicine among medical students is challenging. Teaching about the social determinants of health and disease does not sit comfortably within the individualist orientation of the clinical encounter. (It is not an accident that White, the clinician, tends to look to education of the individual to address cultural incompetence whereas Aktins, the political scientist, leans toward structural change.) It is not easy to find ways for medical students to ‘encounter’ and learn from groups and populations in the same way that they encounter and learn from individual patients. In addition, the ability to see people and their health issues in a social context relates, in part, to the setting in which students meet these people. Medical students who meet users of health services in clinical settings—the hospital or surgery—see those people through eyes attuned to clinical and individual solutions and there is often resistance to thinking about the problem and its solutions in different ways.
One strategy to address the clinical and individualistic bias in medical education that can work involves giving the users of medical services the opportunity to be teachers outside the conventional doctor-patient encounter. Some medical schools have ‘family attachment’ schemes that attach medical students to families with experience of chronic illness. The students follow the family throughout the year, and they are encouraged to discuss with the family their usage of services and contact with the health system. Such schemes introduce students to patients’ interpretations of encounters with doctors, other health professionals and health services. A second way to introduce students to patients’ experiences involves encouraging students to read literature written by lay people about the experience of being ill. Atkins’ book would make a good starting point here, and there is a wide array of other possibilities. Arthur Frank’s work (1995) on the experiences of ill people when they are not being patient, Paul Monette’s account (1998) of the death of his lover from AIDS, Madeleine L’Engle’s (1998) description of the death of her husband from cancer after a long and happy marriage, and Jean-Dominique Bauby’s description of his life with locked-in syndrome (1997) all make compelling reading. Approaches such as these that focus on the experience at the micro-analytical level of being a patient help students to take an outsider’s view of medical work. Another way to emphasise the outsider’s perspective involves offering students a critical account of the process of medical education and medical work to help them understand how medical schools, hospitals and clinical role models both enable and constrain their learning and moral development. Such an account might assist them to make better sense of where they find themselves in the medical system, so that, for example, they have ways to explain their failure to ‘speak out’ against unethical or inhumane treatment of patients. It is into this genre that White’s book fits and, again, the medical humanities literature is replete with physicians’ stories of their own work. Such stories also make good movies: The Doctor (1991), Patch Adams (1998), Awakenings (1990). Raising issues of power and control with students can be costly for teachers and students. Some students become uneasy and anxious about their role in ‘the system’. For teachers in medical schools, educating in this vein can be challenging. How does a member of academic staff respond to complaints about a faculty colleague who consistently belittles students and demeans patients? Ultimately, concerns and challenges such as these cannot be dealt with merely by tinkering with the goals, methods and content of specific courses in communication skills or ethics. They require the will to change those aspects of the structure and organisation of medical education that do not enhance the development of physicians who will be ethically sensitive and compassionate. My Imaginary Illness and Seeing Patients provide pointers to how this might be done and both medical students and the rest of us should read them. REFERENCESAustralian Medical Council 2010, Assessment and Accreditation of Medical Schools: Standards and Procedures, Australian Medical Council, Canberra [Online]: Available: http://www.amc.org.au/images/Medschool/standards.pdf [2011, Nov 30]. Bauby, J,-D. 1997, The Diving Bell and the Butterfly, Alfred A. Knopf, New York. Frank, A.W. 1995, The Wounded Storyteller: Body, Illness and Ethics, University of Chicago Press, Chicago. Hundert, E.M., Douglas-Steele, D & Bickel, J. 1996, ‘Context in medical education: the informal ethics curriculum’, Medical Education, vol. 30, no. 5, pp. 353–364. L’Engle, M. 1988, Two-Part Invention: The Story of a Marriage, Farrar, Straus and Giroux, New York. Monette, P. 1988, Borrowed Time: An AIDS Memoir, Harcourt Brace Jovanovich, New York. Annette Braunack-Mayer is Head of the School of Population Health and Clinical Practice at the University of Adelaide where she has taught ethics to medical students for many years. These days her research interests lie in the intersection of bioethics and public policy, particularly focused around problems of public health importance such as infectious disease policy, vaccination and use of health data. |
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