Family caregivers were recruited into the study over a two year period [1997–99] through one of two community nursing agencies providing palliative care nursing services in homes located in an urban region in the province of Ontario, Canada. Patients were placed on the palliative case load of the participating agencies if they met one of the several criteria: identified end stage disease, oncology diagnosis indicated metastases, oncology patient was expected to undergo chemo or radiation therapy and would require symptom management, or presented complex psychosocial needs. The focus of services provided by the nursing agencies was physical symptom management and psychosocial and spiritual support. Palliative care nurses could also assess and facilitate referrals to other appropriate services.

Inclusion criteria for study participants were that: the deceased was 50 years or older and the family caregiver could not only communicate well in english, but would provide informed consent. Caregivers were excluded from the study if the patient had dementia not due to malignancy and/or medication. Patients with dementia due to these two causes were excluded from the study as investigators felt that they represented a unique subpopulation presenting special needs which require separate considerations. Family caregivers were defined as relatives of the deceased who provided care to that individual on a regular basis, and did not receive remuneration for such services.

Participants included 151 family caregivers [consent rate of 51%] of patients who had died approximately 9 months prior to the study interview. The average age of patients was 71 years [SD = 9.34] and 61 years [SD = 13.56] for the caregivers. Other characteristics of the study population are shown in Table 1.

Eighty-nine percent of caregivers reported the patient experienced some degree of functional restriction. The number of caregivers providing assistance in specific functional activities was: bathing, 133 [88%]; mobility, 123 [81%]; dressing and undressing, 114 [76%]; toileting, 101 [67%] and, assistance at night 97 [64%]. Since study participants were recruited through visiting nursing agencies, all were receiving home nursing visits. The three most frequently used services reported by caregivers included house calls by a family physician, 89 [59%]; home making services, 84 [56%]; and hospital palliative care services 37 [25%].

Unadjusted univariate OR and corresponding 95% confidence intervals are presented in Tables 2 and 3. The reference category is indicated by an OR of 1.00 and a 95% CI of 1.00,1.00. The multivariate model revealed that the odds of dying at home were greater when the patient lived with the caregiver [OR = 7.85; 95% CI = 2.35, 26.27], the patient stated a preference to die at home [OR = 6.51; 95% CI = 2.66,15.95], and the family physician made home visits [OR = 4.79; 95% CI = 1.97, 11.64]. The odds were lower for patients who used hospital palliative care beds [OR= 0.31; 95% CI = 0.12, 0.80] or had caregivers with fair to poor health status [OR = .22; 95% CI = 0 .07, 0.64].

The findings of this study further our understanding of factors associated with home deaths among those who receive palliative nursing care in the home. Individuals who indicated a preference to die at home and resided with a healthy informal caregiver had better odds of dying at home. Home visits by the family physician were also associated with dying at home.

The profile of caregivers and patients in this study is consistent with the research literature. Females are most likely to provide informal care 25. The estimates range from 60% – 75% of informal care in Canada being provided by women 25. Caregivers are often a spouse or daughters, particularly an eldest daughter 26.

The main limitation of this study is the uncertain generalizability of the findings. The consent rate of 51% is consistent, if not better, than previously reported in bereavement studies 27. Strobe & Strobe 27 conducted a review of 21 bereavement studies similar in design to the present study and reported that half of these had accrual rates of less than 50 %. However, the authors determined that depression was a factor in whether individuals participated. Specifically, men who were less depressed agreed to participate while women who were more depressed did so. The authors explained this sex difference in terms of sex roles in coping styles and norms for exhibiting emotions. Hence, non-participants may have different response patterns than participants. Further replication with prospective designs may resolve this issue and strengthen causal linkages on the present study findings.

The strength of the statistical associations in this study establish clear service implications. As dying at home is dependent on caregivers' capacity to manage domestic situations, recognition of the vital role families and other caregivers play in the community care system is essential. Family caregivers require support from the "formal care" system in their role of caring for a terminally ill family member. It should be stressed that caregivers in the present study represent an enhanced care group where they had the benefit of experiencing specialized palliative care nursing in the home. The availability of such service in Canada varies from community to community. For many Canadians access to such services becomes "luck of the draw" 1. Without these supports however caregivers experience stress, burnout and ill health with the inevitable consequence of becoming unable to provide appropriate care to those in need 28. It is also important to note that family physicians can enable home deaths. However, in these situations, family physicians are confronted by complex, and possibly unfamiliar, end-stage issues, therefore initiatives that enhance the palliative care skills and knowledge base could avert unnecessary institutionalizations 2930. Finally, the importance of patient preference in predicting a home death heightens the belief that community care to the terminally ill needs to be client-focussed. Supporting patient and caregiver choices for service and treatment options are essential supportive measures to enable home deaths.

None declared