The Impact of Informal Care and Caregiver Burden on Place of Death in Palliative Home Care
MetadataShow full item record
BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.