Abstract
Background: Consumer experience of palliative care has been inconsistently and selectively investigated. Methods: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. Results: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. Conclusions: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.
Highlights
IntroductionA recent literature review on consumers’ needs and preferences [1] found that consumer experience of palliative care has been inconsistently and selectively investigated
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
Across sectional consumer survey was designed to respond to the six priorities of the Western Australia (WA) End of Life Strategy [13] for developing and improving palliative care services across WA: Healthcare 2021, 9, 1615
Summary
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 indicated that end-of-life needs usually include needs that have already arisen earlier in patients’ illness journeys. 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].
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