Actual and Preferred Place of Death of Home-Dwelling Patients in Four European Countries: Making Sense of Quality Indicators

Abstract

BackgroundDying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether “the percentage of patients dying at home” and “the percentage of patients who died in their place of preference” are feasible and informative quality indicators.Methods and FindingsA mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), the Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). “The percentage of patients dying at home” ranged between 35.3% (Belgium) and 50.6% (the Netherlands) in the four countries, while “the percentage of patients dying at their preferred place of death” ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55–13.23 and 2.30–6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (the Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases.ConclusionGPs know their patients’ actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients’ preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.

Patient Preferences versus Family Physicians' Perceptions Regarding the Place of End-of-Life Care and Death: A Nationwide Study in Taiwan

“…How well physicians perform this communication and decision making has important effects on the experiences of patients as they are dying. 30,31 Patients living in cities were less likely to die at home, in agreement with previous studies. 32,33 Death at home or the passage of a dead body past the living spaces of others could cause some Chinese people to worry about ''contamination'' of the home by dead bodies, perhaps causing such dwellings to become unattractive to future buyers or causing the fear of bringing misfortune to family and neighbors.…”

The Right Place at the Right Time: Medical Oncology Outpatients' Perceptions of Location of End-of-Life Care

“…Nearly half of the patients surveyed indicated a preference for receiving care at home, which is consistent with findings of previous studies. 10 Onethird of patients indicated a preference for receiving care in a hospice/palliative unit. This proportion is higher than reported in studies conducted a decade ago, 11,15 which may reflect a growing recognition of the availability and potential benefits of these services among patients with cancer, 16,17 and be a result of increasing efforts to integrate oncology and PC services.…”

“…2 Home care is also highly valued by informal carers (25%-64%). 10 Patients who are older (age ≥55 y), female, single, and of a higher socioeconomic status have been found to prefer hospice care, whereas those who are younger, male, of better physical health, and of poorer mental health have been found to prefer home care. 11 However, few studies have explored how patients formulate preferences in order to choose one location over another.…”

Persistent inequalities in Hospice at Home provision

“…[5][6][7][8][9] Recent reviews have highlighted how many studies reporting preferred place of death included high proportions of respondents with no recorded or stated preference regarding where they would like to die. 10 11 In light of the most prevalent place of death in many countries being hospital, [12][13][14][15][16] the UK hospice movement has responded with the development of 'hospice at home' (H@H) services. These provide more intensive nursing care in the home than is usually available 17 seeking to enable patients with advanced illness considered to be approaching the end of life, to be cared for and to die at home, if that is their preference.…”