The SUPPORT Study Who's Talking?

In recent years, the public has become increasingly concerned about the use of medical technologies and pain management for seriously or terminally ill patients. The process of death and dying, particularly in a hospital setting, is often characterized by feelings of abandonment and loss of control on the part of patients and their families. Efforts to legalize physician-assisted suicide in California and Washington, and the success of the referendum in Oregon, reflect the public's overwhelming dissatisfaction with what is perceived as physicians' unwillingness to recognize the suffering experienced by terminally ill individuals. Moreover, health professionals, legislators, and patients alike have expressed discontent with the high cost of end-of-life medical care. Taken together, these considerations suggest that innovative attempts to reform health care for the seriously and terminally ill are long overdue. The SUPPORT study represents a major effort in this direction. The size and scope of this multisite study make it historically unique. A primary goal of SUPPORT was the development of a model intervention that would enhance the frequency and effectiveness of patient-physician communication about medical decisions. Yet patient care remained unchanged. The SUPPORT intervention's inability to produce any modification in patient care illustrates profoundly the force and tenacity of Western biomedical culture. In matters of end-of-life decisionmaking, the production and application of medical knowledge reveal deep-seated values and beliefs about patient-physician relationships, control in the practice of biomedicine, and the nature of human mortality. At its core, end-of-life decisionmaking in a hospital setting rests on a set of tacit assumptions about biomedical reality that strongly influence the process and experience of death and dying. Power and Control in Medical Practice Legitimation of authority in biomedicine is expressed and reinforced through a hierarchy of social dominance. Central to this issue of authority are questions surrounding the creation and production of medical knowledge. When end-of-life decisions must be made, who determines what medical data have significance, what information is relevant and whose voices may be heard? Traditionally it is physicians who have held the reins in deciding the substance and parameters of medical decisionmaking. Although current developments in the reorganization of health care practice toward managed care and managed competition may result in fundamental changes in the balance of medical power, the conventional authority of physicians as the creators of biomedical knowledge is likely to remain strong. Patients, their surrogates, physicians, and nurses all participated actively in Phase II, the experimental stage of the SUPPORT project. However, responsibility for implementing the interventions designed for SUPPORT rested heavily on the nurses. It was the nurse who spoke initially with a patient about his or her concerns and desires for medical treatment; it was the nurse who became the conduit of information about a patient's treatment preferences and prognostic status. To a certain extent, this means business as usual in a medical environment where typically nurses are relied upon to "talk" to patients and their families and relay messages to physicians "in charge." In the context of biomedical and social power, perhaps the supplemental knowledge generated by the nurses concerning advance care planning for end-of-life decisionmaking was contained in an all too familiar package. The SUPPORT intervention yielded important information about patients and provided opportunities for that knowledge to be used and acted upon. Unfortunately, this production of knowledge replicated the historical pathways of patient care. Do physicians read the nursing notes in patient charts or listen to nurses' requests on behalf of patients? If the physician reads the chart or discusses the issues with nurses, is the material taken seriouly? …