Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered?

Abstract

This article presents evidence found in a search of national and international literature for patient preferences concerning settings in which to receive palliative care and the appropriateness of different models of palliative care. The purpose was to inform end-of-life care policy and service development of the Western Australian Department of Health through a rapid review of the literature. It was found that consumer experience of palliative care is investigated poorly, and consumer contribution to service and policy design is limited and selective. Most patients experience a mix of settings during their illness, and evidence found by the review has more to do with qualities and values that will contribute to good end-of-life care in any location. Models of care do not make systematic use of the consumer data that are available to them, although an increasingly common theme is the need for integration of the various sources of care supporting dying people. It is equally clear that most integration models limit their attention to end-of-life care provided by health services. Transitions between settings merit further attention. We argue that models of care should take account of consumer experience not by incorporating generalised evidence but by co-creating services with local communities using a public health approach.