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.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care

“…Other studies support this finding [ 19 , 20 , 21 ]. The primacy of support from social networks is at the heart of public health approaches to palliative and end of life care which have the potential to enhance integration of services and provide a comprehensive approach that engages the assets of local communities [ 1 , 22 ]. The disease-specific not-for-profit support organisations have an important role to play in this space and their role too should be bolstered [ 17 ].…”

“…A recent literature review on consumers’ needs and preferences [ 1 ] found that consumer experience of palliative care has been inconsistently and selectively investigated. The review highlighted that, in addition to competent treatment, information about the illness experience and strategies for managing that experience in everyday life are important to patients and their family carers.…”

“…It also indicated that end-of-life needs usually include needs that have already arisen earlier in patients’ illness journeys. For some patients, transfer to an end-of-life care setting to meet fresh needs that arise can have the unintended consequence that important continuing needs are no longer adequately met [ 1 ]. It has been suggested that such inconsistencies and disruptions in care could be addressed by implementing a patient journey perspective that requires services to be integrated across the illness course [ 2 , 3 ].…”

“…The literature review on consumer needs and preferences also found that, while contributions from consumer engagement were virtually absent from policy documents and service guidelines documents a decade ago, they have in recent years been consistently included [ 1 ]. These contributions are, however, uneven.…”

“…Despite support for community engagement and involvement of informal carers, most current models still fall short because their integration is limited to formal health services, with consumers consulted as clients rather than partners in the co-design of services. The review proposed public health approaches to palliative care as a framework for addressing these shortfalls [ 1 ]. The aim of this article is to report on what matters most to consumers (patients and informal carers) in the delivery of palliative care in Western Australia.…”