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

Bruce Rumbold,Samar Aoun

doi:10.3390/healthcare9101286

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.

Highlights

Over the past decade, the claim that “end-of-life care is everyone’s responsibility” has appeared in national and regional palliative care policies around the world
In Australia, elderly cancer cohorts incur greater costs at the end-of-life, primarily through hospitalization—those who die in residential aged care incur half the costs of those who die in hospital [91]— it might be noted that the survey undertaken for this review indicates a lower quality of care for residents of aged care
The findings require us to qualify the objectives of the review, which assume that the locus of care—hospital, home, hospice, residential aged care—could lead to different experiences of care and levels of satisfaction with care

Summary

Introduction

The claim that “end-of-life care is everyone’s responsibility” has appeared in national and regional palliative care policies around the world. Comprehensive strategies through which this shared responsibility might be discharged are, far less common. In most cases, it is translated as a desire for ‘community involvement’ implemented through consumer consultation during policy and service development. It is translated as a desire for ‘community involvement’ implemented through consumer consultation during policy and service development This consultation is often individualised by involving ‘representative’ consumers, with little information provided as to how representative these selected consumers might be. In response to Recommendation Nine of the Western Australian (WA) Parliament Joint Select Committee on End-of-life Choices [1], the WA Department of Health commissioned an independent review of consumer perspectives of palliative care service models. The independent review comprised three phases: a literature review, a cross-sectional consumer survey and consultation forums with service providers

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Discussion

Conclusion