Patient-centered care for chronic illness is founded upon the informed and activated patient, but we are not clear what this means. We must understand patients as subjects who know things and as agents who do things. Bioethics has urged us to respect patient autonomy, but it has understood this autonomy narrowly in terms of informed consent for treatment choice. In chronic illness care, the ethical and clinical challenge is to not just respect, but to promote patient autonomy, understood broadly as the patients' overall agency or capacity for action. The primary barrier to patient action in chronic illness is not clinicians dictating treatment choice, but clinicians dictating the nature of the clinical problem. The patient's perspective on clinical problems is now often added to the objective-disease perspective of clinicians as health-related quality of life (HRQL). But HRQL is merely a hybrid transitional concept between disease-focused and health-focused goals for clinical care. Truly patient-centered care requires a sense of patient-centered health that is perceived by the patient and defined in terms of the patient's vital goals. Patient action is an essential means to this patient-centered health, as well as an essential component of this health. This action is not extrinsically motivated adherence, but intrinsically motivated striving for vital goals. Modern pathophysiological medicine has trouble understanding both patient action and health. The self-moving and self-healing capacities of patients can be understood only if we understand their roots in the biological autonomy of organisms. Taking the patient as the primary perceiver and producer of health has the following policy implications: 1] Care will become patient-centered only when the patient is the primary customer of care. 2] Professional health services are not the principal source of population health, and may lead to clinical, social and cultural iatrogenic injury. 3] Social justice demands equity in health capability more than equal access to health services.

About the Author
Professor of Psychiatry and Behavioral Sciences; Adjunct Professor of Medical History and Ethics, University of Washington

Reviews
I [...] found the patient case studies presented throughout the book to be a fabulous way to introduce actual people, with actual, and indeed common concerns, and very human behaviors. These people were excellent at personifying difficult concepts and patient care challenges. [...] The book provides a truly holistic approach and a thorough provision of information on a variety of subjects that truly comprise the possibility of "the patient as agent of health and health care. * Margaret Riley, Metapsychology Online Reviews *
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. * Tanya Macleod, Journal of Evaluation in Clinical Practice *



Book Information
ISBN 9780195386585
Author Mark Sullivan MD, PhD
Format Hardback
Page Count 456
Imprint Oxford University Press Inc
Publisher Oxford University Press Inc
Weight(grams) 703g
Dimensions(mm) 155mm * 236mm * 41mm