Medline ® Abstracts for References 3-5
of 'Palliative care: Issues in the intensive care unit in adults'
Preference for place of care and place of death in palliative care: are these different questions?
Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP
Palliat Med. 2008 Oct;22(7):787-95. Epub 2008 Aug 28.
Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of>6 times) and place of death (asked a mean of>4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low [56% (kappa 0.33) and 36% (kappa 0.35) respectively]. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
Department of Palliative and Supportive Services, Flinders University, Daw Park, South Australia.
Actual and preferred place of death of cancer patients. Results from the Italian survey of the dying of cancer (ISDOC).
Beccaro M, Costantini M, Giorgi Rossi P, Miccinesi G, Grimaldi M, Bruzzi P, ISDOC Study Group
J Epidemiol Community Health. 2006 May;60(5):412-6.
OBJECTIVE: To describe actual and preferred place of death of Italian cancer patients and to analyse the preferences met regarding the place of death.
DESIGN: Mortality follow back survey of 2000 cancer deaths, identified with a two stage probability sample representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver with an interview. A section of the interview covered information on the actual and preferred place of death of the patients.
SETTING: 30 Italian local health districts randomly selected after stratification in four geographical areas.
PARTICIPANTS: 1900 of 2000 (95.0%) caregivers of cancer deaths identified.
MAIN OUTCOME MEASURES: Prevalence of actual and preferred places of death.
RESULTS: Valid interviews were obtained for 66.9% (n = 1271) of the caregivers. Place of death was home for 57.9% of Italian cancer patients, hospital for 34.6%, hospice for 0.7%, nursing home for 6.5%, and ambulance for 0.4%. Wide and significant differences within Italy were seen (home deaths ranged between 94.0% in the south and 28.2% in the north east). Home was the preferred place of death for 93.5% of patients that expressed a preference, with minimal differences within the country (between 89.5% and 99.0%). Overall 67.1% of the sample died in the place where they preferred to die.
CONCLUSIONS: Policymakers should encourage health services to focus on ways of meeting individual preferences on place of death. As home was the preferred place of death for most cancer patients, effective programmes to enable the patients to remain at home should be implemented.
Unit of Clinical Epidemiology, National Cancer Institute, Largo Rosanna Benzi, 10, 16132, Genoa, Italy.
Preferences for place of care and place of death among informal caregivers of the terminally ill.
Brazil K, Howell D, Bedard M, Krueger P, Heidebrecht C
Palliat Med. 2005 Sep;19(6):492-9.
OBJECTIVES: (1) To determine informal caregivers perceptions about place of care and place of death; and (2) to identify variables associated with a home death among terminally ill individuals who received in-home support services in a publicly funded home care system.
PARTICIPANTS AND DESIGN: A total of 216 informal caregivers participated in a bereavement interview. Data collection included care recipient and informal caregiver characteristics, the use of and satisfaction with community services, and preferences about place of death.
RESULTS: Most caregivers reported that they and the care recipient had a preferred place of death (77 and 68%, respectively) with over 63% reporting home as the preferred place of death. Caregivers had a greater preference for an institutional death (14%) than care recipients (4.7%). While 30% of care recipients did not die in their preferred location, most caregivers (92%) felt, in retrospect, that where the care recipient died was the appropriate place of death. Most caregivers reported being satisfied with the care that was provided. The odds of dying at home were greater when the care recipient stated a preference for place of death (OR: 2.92; 95% CI: 1.25, 6.85), and the family physician made home visits during the care recipients last month of life (Univariate odds ratios (OR): 4.42; 95% CI: 1.46, 13.36).
DISCUSSION: The ethic of self-control and choice for the care recipient must be balanced with consideration for the well being of the informal caregiver and responsiveness of the community service system.
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada. firstname.lastname@example.org