Concordance of family and staff member reports about end of life in assisted living and nursing homes.
OBJECTIVE
To identify differences in perspectives that may complicate the process of joint decision making at the end of life, this study determined the agreement of family and staff perspectives about end-of-life experiences in nursing homes and residential care/assisted living communities and whether family and staff roles, involvement in care, and interaction are associated with such agreement.


METHODS
This cross-sectional study examined agreement in 336 family-staff pairs of postdeath telephone interviews conducted as part of the Collaborative Studies of Long-Term Care. Eligible deaths occurred in or within 3 days of leaving one of a stratified random sample of 113 long-term care facilities in four states and after the resident had lived in the facility (3)15 days of the last month of life. McNemar p values and kappas were determined for each concordance variable, and mixed logistic models were run.


RESULTS
Chance-adjusted family-staff agreement was poor for expectation of death within weeks (66.9% agreement, kappa = .33), course of illness (62.9%, 0.18), symptom burden (59.6%, 0.18), and familiarity with resident's physician (59.2%, 0.05). Staff were more likely than family to expect death (70.2% vs 51.5%, p < .001) and less likely to report low symptom burden (39.6% vs 46.6%, p = .07). Staff involvement in care related to concordance and perspectives of adult children were more similar to those of staff than were other types of family members.


CONCLUSIONS
Family and staff perspectives about end-of-life experiences may differ substantially; efforts can be made to improve family-staff communication and interaction for joint decision making.
Rich
Shayna E
SE
Department of Epidemiology and Preventive Medicine, University of Maryland School of Medicine, 660 West Redwood Street, Suite 200, Baltimore, MD 21201, USA. srich@epi.umaryland.edu
Williams
Christianna S
CS
Zimmerman
Sheryl
S
D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008134:Long-Term Care / Q000592:standards*; D008297:Male; D009735:Nursing Homes / Q000592:standards*; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D014481:United States