title: Preference for place of care and place of death in palliative care: are these different questions?
abstract: 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.
authors.affiliation: Department of Palliative and Supportive Services, Flinders University, Daw Park, South Australia.
authors.forename: M
authors.initials: M
authors.lastname: Agar
authors.forename: D C
authors.initials: DC
authors.lastname: Currow
authors.forename: T M
authors.initials: TM
authors.lastname: Shelby-James
authors.forename: J
authors.initials: J
authors.lastname: Plummer
authors.forename: C
authors.initials: C
authors.lastname: Sanderson
authors.forename: A P
authors.initials: AP
authors.lastname: Abernethy