Book review: Patient as Agent of Health and Health Care by Dr Mark D.Sullivan. Oxford University Press, New York, December 2016, $65.00 cost 384 pp.

Sullivan's timely book is an exploration of the meaning of health and a call for health care reform that draws on his impressive educational background in psychology, family medicine, psychiatry, philosophy, and over 30 years of clinical experience.1 In an interview about the book, Sullivan has described it as an extension of his philosophy dissertation on the “patient as agent” of change that incorporates his subsequent clinical experience.2 The book is organized into six complementary parts: (1) introduction, (2) beyond bioethics, (3) health perceived by the patient, (4) health produced by the patient, (5) health despite disease, and (6) patient-centred health policy. Sullivan's argument for patient-centred care (PCC) comes in the era of a “tidal shift” in our population demographics that will continue to see increasing numbers of patients who are living longer, but with chronic, disabling disease. He states that the average woman over 65 years of age will live four or more of her remaining years with significant functional impairment. When health continues to decline and treatment options become limited or are exhausted, we are faced with the question of what medicine can do to make life worth living. It is from this line of thinking that Sullivan advocates an alternative model of health care that questions the meaning of “health” and positions the patient as the primary agent of health. Sullivan argues that the role of the health care provider in PCC consists of not only considering the patient perspective in managing care but also “activating” the patient toward self-care to transition from “patient” to “person” who has the freedom to pursue health and a good life. The point that health care does not provide health, but instead can help to clear a path toward health, has been expressed by philosophers Aristotle, Plato, Hippocrates, among others. Sullivan provides a historical account of PCC from an ethical perspective beginning with the 20th century “illness” model of the patient as a passive recipient of acute and infectious disease care, to the emphasis on informed consent arising from the tragic human experiments of WW2, to the present day shift toward patient empowerment and shared decision making between clinician and patient. Throughout the book, Sullivan consciously provides a balanced discussion of PCC and asks who is informing the goals of care in patient engagement and how might these goals for “patient agency” conflict with patient values and their own life goals. One compelling statistic that he provides in support of self-care is that the average patient spends 3 hours per year with health professionals and 8757 hours on their own. Patient-centred care has been advocated for more than 50 years with increasing intensity; however, Sullivan criticizes previous efforts as too superficial and feels that it has lost its “edge” along the way. He points to the initial lack of clinicians in the bioethics community, the driving force for the movement, as an underlying cause for the slow uptake. Another concern has been a lack of a clear definition and agreement on approaches to fostering patient agency and goals of health. Sullivan's model of PCC offers a more spiritual approach to medicine and describes the health professionals' role as “patient activator” that goes beyond the treatment of suffering and disease, toward helping patients to seek meaning and fulfilment in their lives. The book is clearly written, and Sullivan's arguments are well supported with scientific literature and relevant case examples. The book also explores many of the philosophical debates in healthcare including definitions of health and vital goals, disability, disease versus illness, agency and autonomy, and reference groups. He also explores psychological theory, including social cognitive theory, motivational interviewing, the health action process approach, self-determination theory, shared decision-making, patient empowerment, and the use of incentives for motivating change. I appreciated his use of tables throughout the book to summarize models, theories, and complex idea that were discussed in-text. This book has an important message for health professionals, policymakers, bioethicists, medical academics, and patients. It is unlikely to be read thoroughly by the average clinician or patient, for instance, but Sullivan acknowledges this and even warns his readers when a chapter may be abstract or difficult. Sullivan describes how our definition of health can change across the life course in a what-works for-whom and under-what-circumstances approach. He sounds the alarm on over-testing, over-diagnosis and over-treatment, and the poor “value” of a health care system that is dominated by the avoidance of death and disease as primary goals. He discusses health care insurance and approaches to care that conflict with patient goals for quality of life using exercise as an example of an underutilized (and uninsured) treatment for chronic disease prevention and management. He also provides a thorough review of theoretical and evidence-based approaches to behaviour change, patient motivation and action, and a consideration of their limitations. For long-term success of behaviour change (e.g., weight loss and smoking), he states that motivation for change must be internalized by the patient rather than driven by external reward which may only promote change, not sustain it. Sullivan also reviews motivational interviewing, a therapeutic approach to support positive lifestyle change and patient beliefs about the importance of these changes and beliefs about their capacity for change. He states that successful motivational interviewing requires an empathetic relationship between clinician and patient that guides patient values and goals to encourage patient autonomy for self-management. Critiques of motivational interviewing have questioned whether it is truly focused on the patient's agenda or merely an attempt to drive the clinicians' agenda and goals for their patient. Sullivan emphasizes the importance of expertise in motivational interviewing methods to avoid making the patient feel more controlled than autonomous. He also explores the ethics of patient engagement, and the tensions between shared decision making and informed consent. For example, many patients will not want to be fully autonomous in their decision making, and generally, older, sicker, and less educated patients are more likely to desire a lower level of decision-making autonomy; however, patients should not be characterized as necessarily “active” or “passive” actors in their health care, because the decision to take a more active approach will vary by situation. Throughout the book, Sullivan revisits his central thesis of the need for greater patient engagement in a time of spiralling health care costs with limited improvements in patient morbidity or mortality, and clinician stress and burnout. This is a book that you can pick up and revisit when time allows, and as long as you have an interest in medicine and philosophy, Sullivan will deliver with an interesting discussion on the relationship between the two. Sullivan's writing is a call to action to “rediscover agency” and move away from a health care model that is “lain in the shadows of scientific medicine” guided by the goals of avoiding death and disease. By working with patients to redefine health and “keep on going,” he believes that we can begin to reform the current approach to health and, subsequently, our health care system. I strongly recommend this book to health professionals, policymakers, bioethicists, academics, and patients who have an interest in patient education and engagement, shared decision making, alternative models of health care, chronic disease management, and/or end of life care.

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