Areas of Control Desired by Patients and Families Referred to Hospice Care: Perspectives of Hospice Admissions Staff

Sense of control in end-of-life (EOL) care plays a critical role in the patient’s well-being. However, little is known about the areas of control essential to patients and families at a specific time point in the illness trajectory: when patients stop curative treatments and are referred to hospice. This study qualitatively explored such areas. Sixteen admissions staff members from four hospice agencies were interviewed about their perceptions of areas in which patients and families worried about losing control by accepting hospice. The thematic analysis revealed four areas of control: changes to medical care, health care provider changes, use of life-sustaining treatments, and daily life. Participants of this study put a great emphasis on consistently communicating their willingness to honor patients’ and families’ control over their care decisions and lives. Future research should examine control in EOL care among diverse populations and effectiveness of hospice staff’s strategies to address desire for control