Physician Communication with Family Caregivers of Long-term Care Residents at the End of Life

Objectives: To assess family perceptions of communication between physicians and family caregivers of individuals who spent their last month of life in long-term care (LTC) and to identify associations between characteristics of the family caregiver, LTC resident, facility, and physician care with these perceptions.

Design: Retrospective study of family caregivers of persons who died in LTC.

Setting: Thirty-one nursing homes (NHs) and 94 residential care/assisted living (RC/AL) facilities.

Participants: One family caregiver for each of 440 LTC residents who died (response rate 66.0%) was interviewed 6 weeks to 6 months after the death.

Measurements: Demographic and facility characteristics and seven items rating the perception of family caregivers regarding physician-family caregiver communication at the end of life, aggregated into a summary scale, Family Perception of Physician-Family caregiver Communication (FPPFC) (Cronbach alpha=0.96).

Results: Almost half of respondents disagreed that they were kept informed (39.9%), received information about what to expect (49.8%), or understood the doctor (43.1%); the mean FPPFC score (1.73 on a scale from 0 to 3) was slightly above neutral. Linear mixed models showed that family caregivers reporting better FPPFC scores were more likely to have met the physician face to face and to have understood that death was imminent. Daughters and daughters-in-law tended to report poorer communication than other relatives, as did family caregivers of persons who died in NHs than of those who died in RC/AL facilities.

Conclusion: Efforts to improve physician communication with families of LTC residents may be promoted using face-to-face meetings between the physician and family caregivers, explanation of the patient's prognosis, and timely conveyance of information about health status changes, especially when a patient is actively dying.