Death at home unlikely if informal carers prefer otherwise: implications for policy

There is currently a considerable emphasis on enabling patients to die at home if this is their wish.1–3 Patient preference for a death at home increases likelihood of the patient actually dying there.4,5 However, likelihood of dying at home depends on the presence and ability of informal carers to provide home care.6 This can place considerable burden on informal carers, and their preferences regarding home care may not coincide with those of the patient.7 Only a few studies have actually considered the preference of the carer as well as that of the patient.4,8,9 Although one half or more of carers in these studies report a preference for death at home, at least initially, the proportion preferring home death is consistently smaller for carers than for patients. Little research has considered the extent to which such discrepancy between the expressed wishes of patients and carers influences likelihood of dying at home. A small study by Cantwell, et al.10 suggests there is a increased likelihood of death at home when both patient and carer express preference for home, but discrepancies were not investigated. We report data that enabled us to assess whether discrepancy between patient and carer view on preferred place of death influenced patients’ likelihood of dying at home. This was part of a larger study into preferred place of death, quality of care and carer bereavement outcome. We considered anonymous patient records of three hospice at home (H@Hs) services that routinely recorded both the patient’s and the main carer’s preferred place of care or death, as well as actual place of death. H@H recording practices differed somewhat in recording of place of care and death, and although the two are not identical, their boundaries blur towards the end of life. In the present analysis, they are grouped into one category. A total of 480 patients had been referred to the three H@Hs and died within the four month study period. Of these, H@Hs recorded the preferred place of care/death of the carer in 298 (62.1%) and the patient’s preference in 324 (67.5%) cases. Patient’s or carer’s preference was recorded in 367 (76.5%) of 480 cases in total. There were 255 patient and carer pairs in which preference could be compared. The main difference in views related to home care/death. Although 201 (78.8%) patients preferred home, only 169 (84.1%) of their carers concurred and 32 (15.9%) disagreed, with the main alternative preference being hospice (25 carers). Of 39 patients who preferred hospice, 35 of their carers concurred, whereas four carers preferred home. Otherwise, there were no discrepancies between patient and carer views. For the 201 patients who preferred home, likelihood of actually dying at home depended on agreement between patient and carer preference. Where both patient and carer preferred a home death, 122 (72.2%) of 169 patients died at home. Where the carer disagreed with the patient’s preference, only 8 (25.0%) of 32 patients died at home (X2 = 26.225, df = 1, P < 0.001). When both patient and carer preferred hospice, 25 (71%) of 35 patients died in hospice, but when the carer disagreed, three (75%) of four died in hospice and one at home. Carers’ preference was not related to their relationship to the patient. Percentages preferring home was similar for spouses and children (accounting for 61% and 29% of the sample, respectively) and somewhat lower for ‘other’, but not significantly so. Patients who have been referred to H@H towards the end of life probably receive more palliative care support and are more likely to desire death at home compared with dying patients in general. Our results therefore suggest that even within a relatively highly motivated, wellsupported patient population, the likelihood of dying at home is dramatically reduced if the main carer does not express a preference for death at home. Furthermore, more carers may have preferred death elsewhere than were recorded as there may be implicit pressure on carers to agree with patient’s wishes.7 The role of carers in delivering patient choice is increasingly recognised. However, our results suggest that if carers do not agree with the patient’s choice, service provider and policy aims of enabling patients to die at home, if this is their wish,1–3 are unlikely to be met.