As Individual as Death Itself: A Focus Group Study of Terminal Care in Nursing Homes

Abstract

One in four Americans who reach the age of 65 will die in a nursing home, yet little research exists to define the end of life care needs of this population. We used focus groups with experienced nursing home staff and physicians to: (1) define a good death in a nursing home and (2) describe factors that promote or prevent good care for the dying in this setting. We audiotaped 11 focus groups with 77 participants. Discussions were structured around 3 questions: "How does someone die in the nursing home?" "What makes the difference between a good death and a bad death?," and "What can aides, nurses, or physicians do to help ensure that when someone dies it is a good death?" Participants described lack of training, regulatory emphasis on rehabilitation, and a resource-poor setting as important barriers to high quality care of the dying in nursing homes. They affirmed the value of their experience and personal relationships with residents as the basis for good care. Three major themes emerged to define a good death in a nursing home: highly individualized care based on continuity relationships with caregivers, effective teamwork by staff, physicians and family, and comprehensive advance care planning that addresses prognosis, emotional preparation, and appropriate use of medical treatments. The significance of these themes may be tested in the design of interventions to improve care of the dying in long-term care.