Abstract
Background: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. Methods: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-of-life service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, non-participant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. Results: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were ‘outsiders,’ the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. Conclusion: These end-of-life care service models operated in a space between the healthcare system and the person’s life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.
Highlights
“Building a workforce that can meet this population’s needs will require more than training ... it will require a radical redesign of the health system that is centered on the communities where patients live.”
Supportive end-of-life care service models operating in a community or voluntary provided space are likely to have an impact on enriching relationships and improving mental health
We found that a new, charitably provided, service model focused on responsive identification of care needs, service referral and befriending operated in an important space between formal care services and the support of friends and family
Summary
“Building a workforce that can meet this population’s needs will require more than training ... it will require a radical redesign of the health system that is centered on the communities where patients live.”. Jessica Bylander[1] At the Health Affairs summit in 2018, the need to redesign healthcare for those with serious illness was clearly set out.[1] Many palliative care services are found mostly in hospitals, and hospice care may only be offered to those imminently dying.[2,3,4] There is a need to develop palliative care service models to meet the needs of those, often older people, living in the community who are frail and with co-morbid conditions, and who are likely to be towards the end of their lives.[5] In the context of this study we use the term ‘approaching the end of life,’ meaning likely to die within the 12 months. The aim of this research was to understand how and why this new charitably provided community model of end-of-life care influences the experiences of older people
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