Dying to be Home? Preferred Location of Death of First-Generation Black Caribbean and Native-Born White Patients in the United Kingdom

Abstract

Although preference for location of death has been studied in the general population little is known about the experience of people from different ethnic backgrounds and nothing about the black Caribbean population living in the United Kingdom. Over 13 months we surveyed the family and friends of deceased first-generation black Caribbean and native-born white patients with advanced disease. Of the 106 black Caribbean and 110 white patients identified, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. It was found that 21% of all patients surveyed died in their own home, 61% in hospital, 12% in a hospice, and 6% in a residential/nursing home. Thirty-four percent of black Caribbean compared to 27% native-born white patients were reported to have expressed a preference for location of death and of these over 80% of all patients wanted to die at home. Similar proportions of patients from the Caribbean (53%) and white (56%) patient groups who wanted to die at home did so. This was not related to restrictions in patients' activities of daily living or self-reported caregiver burden. Fewer respondents representing Caribbean than white patients stated that neither they (χ² = 8.9, p = 0.01) or the deceased patients (χ² = 8.6, p = 0.03) were given sufficient choice about the location of death. Our findings suggest: (1) a need to improve training in discussing care and treatment choices, including location of death, and (2) a deeper qualitative understanding of the cultural and other factors that may facilitate or prevent home deaths.