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.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…Plans may be subject to rapid change as death draws closer. 22,43,51,67,69,70,72,84,85 The National Survey of Bereaved People (VOICES) of bereaved carers reported that, among the 44% of patients who had expressed a preference, 71% had wished to die at home. However, although the majority had died in hospital, most relatives (82%) subsequently felt that the patient had died in the most appropriate place.…”

“…This was particularly pertinent in relation to the distinction between patients' preferences for place of care and place of death; vague language elides the distinction between these. 69,84 It is evident that there may be a considerable discrepancy between patient and professional recall and understanding of what was said and what was meant in ACP discussions. Misplaced confidence in tacit understanding also inclined professionals to make, and sometimes document, assumptions about patient preferences, which may not correspond with what was actually intended or preferred.…”

“…A clear theme running through the data and the wider literature concerns the variability of patient preferences and responses to ACP discussions and their timing, and the tendency for such preferences to change. 5,12,70,78,84,88,92,123,126,178 Preferred place of death Home has become established as the best and, most usually, PPOD. This underpins its status as a proxy indication of the success of ACP and quality of EOLC.…”

How Do Cancer Patients Receiving Palliative Care at Home Die? A Descriptive Study

“…2 Patient preference as to place of death, level of caregiver support and entitlement to private shift nursing were significantly associated with patients dying at home. 3 However, the complex process of decision making about the place of death is often dynamic and contradictory, 4 and involves the patient, the caregivers, and the professionals, 5 as well as environmental factors including hospital or hospice facilities. 2 In Italy, death at home was very frequent in early prospective studies, occurring in as many as 86% of deaths; 6 multivariate analysis showed that a higher degree of family support was associated with home death.…”

Palliative Caregivers Who Would Not Take on the Caring Role Again

“…9,10 Having a caregiver is still the single most important predictor of home death 11e14 where this is agreed between patient and caregiver. 15,16 Providing end-of-life care can be a positive experience for many people despite the constancy of demands, 17e19 identified emotional concerns, 1 lack of preparation and inability to effectively negotiate the level of involvement, 20e22 poor support and training, significant stressors, 23 limited respite, and a lack of support in transition from the caring role if the person dies. 7,22 While in the role, there are physical and psychological consequences, and in relinquishing the role, a ''hangover'' effect that has measurable adverse health outcomes for caregivers, including mortality.…”