Rights Talk and Patient Subjectivity: The Role of Autonomy, Equality and Participation Norms

Patients themselves have transformed the role of the patient in the health care system, making it far more complex than it ever has been before. As a result, 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 on Patient-Centered Health Law and Ethics of which this Article 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 the 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. From the 1970s to the 1990s, 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 have been reflected in the model of patient as consumer, market actor, and self-insurer – a change also inscribed by and into law. As health law and policy scholars increasingly focus on patient-centeredness, these new patient identities 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