To our knowledge, this is the first study to examine the agreement between family and staff members’ perspectives about a long-term care resident’s death. Given the important role of family caregivers in long-term care settings (Kellett, 2007
; Ryan & Scullion, 2000
), decisions for care at the end of life are often a joint effort between family and staff members (Hanson et al., 2002
; Murray et al., 2004
; Wowchuk et al., 2007
). Joint decision making is easier if perspectives are similar regarding the resident’s status, particularly on such central issues as whether death is expected and the extent to which the individual is suffering.
Although the majority of family and staff respondents agreed on each of the variables examined, we found that discordant perspectives were common. Between 30% and 40% of family–staff pairs disagreed about whether the death was expected, whether the symptom burden was low or high, and what type of trajectory the decedent experienced. Agreement according to kappa was fair or poor in all cases. It is of some concern that discordance was common for these basic beliefs about the resident’s death because while there may be no “right” answer for these beliefs, a shared perspective may be an important prerequisite for successful joint decision making. For example, if a family member does not expect death but a staff member does (as in 26% of the pairs, data not shown), the family member may push for more aggressive interventions than the staff member considers appropriate. The alternate situation is less likely, as in only 7% of pairs did the family member expect the death when the staff member did not (data not shown). In fact, as shown in , staff members expected the death in 70% of the cases compared with 52% for families, indicating that when family members expected the death, the staff member was likely to expect it as well. In a similar way, discordance in perspectives about the resident’s degree of symptom burden or trajectory is likely to lead to disagreement about what is considered appropriate care.
As a possible indicator of involvement in care coordination, the poor concordance of familiarity with the decedent’s physician introduces a different concern. About 70% of family respondents and staff respondents were each familiar with the physician’s name, but only 49% of pairs were both familiar with the physician. This lack of agreement may be due in part to a difference in schedules since families may visit at times when the staff members most involved in providing care are not working (e.g., nights or weekends). Thus, there seems to be an opportunity to increase staff involvement in family–physician communication and family involvement in staff–physician communication. Doing so may also increase the expectation of death, as has been found in other analyses (Biola et al., 2007
Although many potential correlates of concordance were not significantly associated with concordance in this study, there is indication that the greater staff involvement with residents, the more likely that they and the family will know the resident’s physician. This finding is only preliminary, but it is further evidence supporting the importance of stable staffing in long-term care. Among family characteristics, the perspectives of adult children tended to be more similar to staff related to symptom burden than were those of other family relations. Considering that adult children are more often involved in care than other relatives (i.e., they constituted 67% of respondents), the opportunity for concordance is already maximized in this context.
As an initial study in a new area of exploration, this project has some limitations. We relied on postdeath interviews, although this limitation was common to both respondents. We also relied on a relatively limited number of questions to examine family and staff perspectives and possible correlates; we had no staff measure of interaction with family and no specific measure of interaction between the family and staff respondents. We also were limited to examining only a few aspects of family and staff perspectives; future research should examine the concordance on additional factors, particularly expectations and preferences for care. Furthermore, the study sample was predominantly White, reflecting the national distribution of race in these settings; however, these results may not be generalizable to other racial or ethnic groups or to settings with a different racial distribution.
This study found substantial disagreement between family and staff caregivers in their perspectives about the end-of-life circumstances for a resident of a NH or RC/AL community. Further studies are needed to characterize the agreement of family and staff perspectives about end of life. In particular, more study is needed to understand how the differences between family and staff perspectives affect decision making about resident care and whether and how agreement contributes to joint decision making and the resulting quality of care.