Concordance of family and staff member reports about end of life in assisted living and nursing homes.

In the past few years, there has been an increasing recognition of the ongoing role of family caregivers in nursing homes (NHs) and residential care/assisted living (RC/AL) settings (Gaugler, Zarit, & Pearlin, 2003; Kellett, 2007; Paulus, Raak, & Keijzer, 2005; Port, 2006; Ryan & Scullion, 2000). Family members not only choose to but often believe it is their responsibility to oversee care when their relative moves to these settings (Bern-Klug & Forbes-Thompson, 2008; Davies & Nolan, 2006; Kellett; Port et al., 2005). With this involvement comes the need for joint caregiving with facility staff, such that decisions about care are made as a team (Hanson, Henderson, & Menon, 2002). Joint decision making is particularly critical in these settings because of the high prevalence of cognitive impairment as more than half of NH and RC/AL residents have dementia or are otherwise unable to participate in decision making (Krauss & Altman, 1998; Sloane, Zimmerman, & Ory, 2001). Care decisions, such as whether to hospitalize the resident or use artificial nutrition, become more frequent and complex as the end of life nears (Dosa, 2005; Hospice and Palliative Nurses Association, 2004). Because NHs and RC/AL settings are common locations of death (Brock & Foley, 1998; Center for Gerontology and Health Care Research, 2004; Sloane, Zimmerman, Hanson, Mitchell, & Reidel-Leo, 2003), residents, family, and staff in these facilities are regularly faced with the need to make joint decisions about end-of-life issues (Hanson et al., 2002; Munn & Zimmerman, 2006; Wowchuk, McClement, & Bond, 2007). Furthermore, family often takes on a more central role in decision making during this period due to the increased prevalence of cognitive impairment at the end of life when 75% or more of residents are impaired (Mitchell, Teno, Intrator, Feng, & Mor, 2007; Munn et al., 2007; Rurup, Onwuteaka-Philipsen, Pasman, Ribbe, & van der Wal, 2006; Wilson, Beckett, Bienias, Evans, & Bennett, 2003). Although there is an extensive body of research examining the role of family members as surrogate decision makers at the end of life and their concordance with patient decisions (Meeker & Jezewski, 2005; Shalowitz, Garrett-Mayer, & Wendler, 2006), little is known about the role of staff caregivers in these decisions and their concordance with residents and families in regard to medical decision making. Joint decision making between family and staff at the end of life will reflect the extent to which they have similar perspectives on key issues (Murray, Miller, Fiset, O’Connor, & Jacobsen, 2004). One such issue is whether or not the death is imminent as this expectation drives related decisions. There is cause to question agreement on this point because in one study, only one half of resident deaths were expected by family or staff at least a week before the event (Reynolds, Henderson, Schulman, & Hanson, 2002). Thus, a mutual “open awareness” of death in which all parties are aware of and openly acknowledge the impending death (Glaser & Strauss, 1965) is important yet unlikely in this setting. A second important consideration in joint decision making relates to the health status of the dying resident and the extent to which staff and family consider the resident to be uncomfortable and declining (Ferrell, Eberts, McCaffery, & Grant, 1991); agreement on concepts such as symptom burden and the course of illness will drive health care decisions. Finally, end-of-life care involves working with health care providers including physicians (Stewart, Teno, Patrick, & Lynn, 1999). In long-term care settings, physicians have been charged as being “missing in action” (Katz & Karuza, 2005), and so, an indicator as simple as whether or not family or staff are even familiar with the physician has implications for joint care decisions. By comparing family and staff beliefs about a resident’s end-of-life course, as well as their familiarity with the decedent’s physician, we can identify similarities and differences of perspectives that may result in difficult decision making. Then, because the relationship between family and staff caregivers is key in the experience of surrogate decision making (Murray et al., 2004; Popejoy, 2005; Vig, Starks, Taylor, Hopley, & Fryer-Edwards, 2007), examining the association between similar beliefs and the family and staff caregivers’ roles, involvement in care, and family–staff interaction can illuminate areas of intervention to improve joint decision making. Thus, the aims of this study were to describe the agreement of family and staff member after-death perspectives about end of life and to determine whether family and staff roles, their involvement in care, and family–staff interaction were associated with agreement in family and staff perspectives.