The Patient as Agent of Health and Health Care by Mark D Sullivan, an excellent book about the nature of patient-centered care, is not light reading, but is both informative and provocative. It is very hard to do justice to this book in a short review (which is why this post is months after I finished the book) but I will try.
Patient-centered care has gone from being heresy challenging the traditions of paternalism and physician-centered medicine to such a mainstream topic that it has become a buzz-word more often used than practiced. It is also been an inadequately examined and poorly understood concept. Sullivan helps define it, and does so with a firm and broad foundation.
Traditionally, patient-centered care has referred to granting patients some (limited) autonomy in making diagnostic or therapeutic decisions, most often by picking choices that align with their personal values and preferences from a menu provided by the clinician. While this represents progress from two generations ago where the standard of care was to withhold the diagnosis of cancer from patients because it would harm them, it still leaves the patient permitted to participate in decision making only at the very end of a complex process. (One of my patients aptly compared this to being allowed to pick a color and other options for a new car, but not being allowed to decide on the model or make.)
Sullivan starts with the premise that true patient autonomy requires that the patient be allowed to define health and identify and define the problem(s) to be solved. As he builds on this, using a combination of patient scenarios, philosophy, law, medical ethics, and medical history, any number of important concepts emerge and are thoroughly addressed. Space only allows me to mention a few. Patient autonomy is not the same as the absence of constraints but requires the ability of the patient to active agents who author their own actions. The tension between the false dichotomy of ‘objective’ physician beneficence and ‘subjective’ patient well-being is discussed. He notes that shared decision-making is rooted in an agreement between the patient and clinician on goals, but that the primary goals are personal and patient-specific, while traditional medical goals like A1c or systolic blood pressure are secondary. He discusses many issues related to chronic disease and chronic pain and notes that it is the patient rather than the clinician who produces health in a process where the clinician and the health care system can either help or represent a barrier.
Ultimately, in his formulation, health is not an objective state. It is not something that can be defined by society, the health care system, or the clinician. Instead, building on things like Bandura’s concept of self-efficacy, he describes health as a state where a person has agency, the capacity for action. In this framework, the ability of an engaged, empowered, and autonomous patient to act are simultaneously a way to achieve health and the goal of healthcare:
“…patient-centered health care must aim for a patient-centered health that is defined neither as (absence of) objective disease nor as subjective well-being. This health is part of persons to do and be what they value. It encompasses the ability to enjoy health and to pursue it.”
This is a thorough and well-written discussion of an important and complex topic. It makes important contributions to our understanding of health and how to determine both individual and societal goals for health care. It is a necessary read for anyone involved in fostering patient autonomy or working in health care administration and policy.