Advocating work: An institutional ethnography of patients\u27 and their families\u27 experiences within a managed care health system

This study explores the process of experiencing a serious or terminal diagnosis, beginning in the everyday activities of actual people as they negotiate care within Managed Care Organizations. Data were gathered through in-depth semi-structured interviews with people who have supported someone who received a serious or terminal diagnosis (as a family member or friend), and in-depth interviews with healthcare professionals, selected because the work they do appeared in the accounts of those who told about assisting patients. Texts used in the process of diagnosis and treatment were also collected and analyzed. Using institutional ethnography as a method of inquiry, this study demonstrates the multiple activities of those who work together to provide care for patients within Managed Care Organizations. It draws from the carework literature and a feminist conceptualization of work, which includes the work of both lay people and professionals who advocate for those who are diagnosed. The data reveal that contemporary managed care systems are designed in such a way that the wishes and rights of patients and their loved ones are often not taken into account. Participants in the study reported problems with the ways they and the patients they assisted were given information and the ways that decisions were made about the kind and quality of treatment to be pursued. They also reported a variety of strategies they used to advocate for patients and to intervene in institutional processes. Healthcare workers reported engaging in similar kinds of advocacy, but the analysis also shows how their work is regulated by texts designed to produce a standardized product that can be utilized by interchangeable workers. Examining the coordination of my informants\u27 activites by institutional protocols enacted by managed care organizations reveals new possibilities for organizing the care of those seriously or terminally diagnosed. Managed care and its current emphasis on efficiency and profit, which is seen through its texts and protocols, are challenged. Acknowledging patients as individuals who are entitled to quality healthcare that takes into account their diverse situations could lead to new ways of managing patients that reduce the suffering that patients and their families endure after a serious or terminal diagnosis