The experience of living-dying in a nursing home: Self-reports of black and white older adults

PURPOSE: The purpose of this study was to describe and compare the experiences, needs, priorities, and concerns reported by black and white nursing home residents during the living-dying interval. The living-dying interval is defined as the time between the knowledge of one's impending death and death itself. DESIGN: This qualitative study was part of a larger ethnographic project. Residents participated in from one to four individual, in-depth, semi-structured, audiotaped interviews. SETTING: Residents lived in two large county-financed nursing homes that have historically provided care to indigent black and white older adults. PARTICIPANTS: Purposive sampling was used to identify eight black and five white residents with terminal cancer diagnoses who could serve as rich resources about the experience of living-dying in a nursing home. MEASURES: Residents were asked open-ended questions about how things have been and what would make things better; what comforts them and would make them more comfortable; what dying means to them; and what things are important for nursing staff to know. RESULTS: Verbatim transcripts of the interviews were coded using QRS NUD-IST software. Codes were placed in categories, categories were reviewed for common and different concepts, themes, and patterns, and a conceptual model was developed. The model identified six care needs: (1) day-today living; (2) inadequate pain relief for black residents; (3) difficulty chewing and swallowing; (4) importance of religious activities; (5) giving care to others; and (6) appreciation of respectful and prompt care. Residents validated all components of the conceptual model. CONCLUSION: Black and white terminally ill residents focused on the quality of living rather than on dying, and black residents may be undertreated for pain. Important care needs for pain and religion are not routinely addressed by the Minimum Data Set (MDS) and Resident Assessment Protocol (RAP) triggers.