A longitudinal study of end-of-life preferences of terminally-ill people who live alone

Abstract

As a home death seems to be the perceived ideal, terminally ill people who live alone are at a disadvantage in terms of their place of care and death and little is known about their end-of-life preferences. This study aimed at eliciting patient preferences for their place of care and death longitudinally at two points during their illness trajectory, and reporting on the extent they were able to achieve their place of choice or congruence between preferred and actual place of death. A questionnaire was administered by a researcher in the patients' homes during two visits, 6-12 weeks apart depending on patient prognosis. Forty-three patients of Silver Chain Hospice Care Service in Western Australia participated during 2009-2010. The results indicated that preferences were in favour of either a home or hospice death, with more preferring home as a place of death rather than a place of care. However, overall congruence between preferred and actual place of death was between 53% and 41% dependent on whether it was based on first or second visit preferences respectively. This is the first longitudinal study to elicit the end-of-life preferences of terminally ill people who live alone. As home may not be the preferred location for dying for many patients (nearly half of the patients in this study), ability to die in the place of choice needs to be looked at as a possible indicator of meeting patient needs or as a quality measure in end-of-life care.

Keywords: access to support; home care; living alone; palliative care.