The great majority of individuals have related to the health care system primarily as patients. For most of the history of medicine, the patient has been the embodiment of a diagnosis, the passive target of treatments, the recipient of injections and infusions, and the (hoped for) compliant consumer of medications and follower of orders. No more. Patients themselves have changed the social meaning of “patient” so dramatically that it only thinly resembles its meaning of even a generation ago.
The patient’s role today is often that of a partner in managing care. The patient can be a co-creator—sometimes more so, sometimes less so, but almost always potentially—of the medical regimen that she undertakes. And with this increasing autonomy comes increasing accountability for prevention, wellness, and maintenance, as well as various forms of liability—socially if not (yet) legally—if those responsibilities are not fulfilled.
We also understand the patient today to be a consumer of medical services, with a consumer’s orientation to questions of price, quality, and value. Yet “consumer” both fails to capture what is unique about the experience of health care and also implicitly cabins individual agency and responsibility to market-related interactions.
In short, the role of the patient has become far more complex than it ever has been before. The identity of patient has been de- and reconstructed into ever thicker formulations. The conceptual root of our contemporary understandings of “patient” is an assumption of autonomous subjectivity, i.e., of an individual aware of and capable of acting on her choices for medical care. The Symposium of which this Essay is a part considers the most recent stage in this evolution of meanings: the concept of patient-centeredness, with its implication of provider deference to the patient’s perspective.
Throughout this process of an evolving patient identity, law has played a central constitutive role. In the 1960s and 1970s, the law of informed consent brought the concept of patient autonomy into the constellation of metanorms shaping the idealized doctor-patient relationship. From that process, the patient as a rights-bearing subject emerged. In the 1970s and 1980s, women’s health advocates and AIDS patients brought a new level of militancy to the patient role, undertaking representation on their own behalf and on behalf of future patients with the same disease. Their efforts produced lasting legal changes in such fundamental medical endeavors as clinical research. In the last two decades, the rise of managed care and the growing shift of financial burdens and risk onto the patient were reflected in the model of patient as consumer, market actor, and self-insurer—a change also inscribed by and into law.
Each of these developments carries a distinct political valence with differing, even contradictory, implications for legal and political frameworks for the health care system. Informed-consent doctrine exemplifies liberal rights discourse, disease activism connotes organized collective action, and the health-consumer identity has facilitated market-oriented health policy. All have become part of the experience of seeking health care, and all share one common theme: they reflect a shift in the cultural meaning of “patient” from a passive figure to that of an agentic actor with multiple dimensions of subjectivity. They provide a starting point for understanding just who the patient at the center is, what her roles will be in the health care system as a whole, and what her reasonable expectations of that system will encompass.
In this Essay, I take patient autonomy as the beginning point, the source of much in modern bioethics and the antecedent of the concept of patient-centeredness. My project is to enrich the values at the core of patient identity, expanding them beyond autonomy and beyond the treatment context and the doctor-patient dyad. I identify three additional dimensions of patient subjectivity that must be accounted for if one is to develop a sound conceptualization of patient-centeredness. In the process, I argue that the basis for a new cultural norm of biocitizenship is emerging.
