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The Patient as a Co‐Manager in the Health Care System

Under the best of circumstances, managing end-stage renal disease (ESRD) is a complex task shared by patients, their families, and health care providers (1). Medical treatment is necessary but not sufficient: medical professionals perform critical procedures. but they can only recommend that patients attend and complete dialysis sessions, take prescribed medications, monitor and regulate salt and fluid levels, stop smoking, and lose weight. In addition to adhering to recommended regimens, patients with end-stage renal disease, as with most chronic diseases, generally benefit from lifestyle changes that accommodate illness, coping effectively with pain and emotional distress, and minimizing the impact of illness on work and family life (24 ) . While ESRD requires that patients adapt to some unique challenges, much of what they are expected to do to manage their illness is similar to the demands placed on patients with other chronic diseases, such as diabetes, asthma and epilepsy. For example, the management of each of these diseases requires that a patient follow a detailed daily regimen that may require modifications in eating, working, or exercising. All such patients are supposed to frequently monitor physiological changes, and all are expected to adhere to a strict regimen of medications and procedures that disrupt daily life (2, 5 ) . For many, preventing the progression of disease and complications also involves increasing physical activity, quitting smoking, and adapting work and family life to changing capabilities. While the physician, dietitian, social worker, nurse, and other members of the health care team can provide prescriptions, technical assistance, advice, education, and warnings of the dire consequences of noncompliance, the day-to-day care for most chronic conditions falls on the shoulders of the patient and his or her family ( 1, 6-9). There is a rich scientific literature on how to help people with chronic disease collaborate with their health care providers as co-managers of a range of conditions. This article draws from the evidence for interventions developed for a number of chronic diseases (including end-stage renal disease) that help patients actively participate in their care. And it identifies the common elements among them that suggest how health care can most