Objectives: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life.
Design: Constant comparative analysis of deceased nursing home resident cases.
Setting: A not-for-profit Jewish nursing home.
Participants: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center.
Measurements: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker.
Results: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management.
Conclusion: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.