Pain, dyspnea, and the quality of dying in long-term care

OBJECTIVES: To evaluate the relationship between pain, dyspnea, and family perceptions of the quality of dying in long-term care. DESIGN: After-death interviews. SETTING: Stratified random sample of 111 nursing homes and residential care and assisted living facilities in four states. PARTICIPANTS: Paired interviews from facility staff and family caregivers for 325 deceased residents. MEASUREMENTS: The outcome variable was the Quality of Dying in Long-Term Care (QOD-LTC), a psychometrically sound, retrospective scale representing psychosocial aspects of the quality of dying, obtained from interviews with family caregivers. Facility staff reported the presence, frequency, and severity of pain and dyspnea. RESULTS: During the last month of life, nearly half of residents experienced pain or dyspnea. QOD-LTC scores did not differ for residents with and without pain (4.15 vs 4.02, P=.16). Overall, residents with dyspnea had better QOD-LTC scores than those without dyspnea (4.20 vs 3.99, P=.006). The association between dyspnea and a better QOD-LTC score was strongest in cognitively impaired residents and for those dying in residential care and assisted living facilities. CONCLUSION: For residents dying in long-term care, pain and dyspnea were not associated with a poorer quality of dying as perceived by families of deceased residents. Instead, dyspnea may alert staff to the need for care. Initiatives to improve the quality of dying in long-term care should focus not only on physical symptoms, but also on the alleviation of nonphysical sources of suffering at the end of life.