Abstract
BackgroundAccess to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism to improve quality of care for the dying. The extent to which palliative care is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and end of life care in national health policies in the UK.MethodsDocumentary analysis consisting of 1) summative content analysis to describe the extent to which palliative and end of life care is referred to and/or prioritised in national health and social care policies, and 2) thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and end of life care for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were UK-wide or devolved (i.e. England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards.ResultsFifteen policy documents were included in the final analysis. Twelve referred to palliative or end of life care, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and end of life care access comprised three inter-related themes: (1) integrated care – conceptualised as reorganisation of services as a way to enable improvement; (2) personalised care – conceptualised as allowing people to shape and manage their own care; and (3) support for unpaid carers – conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs.ConclusionsAlthough information on palliative and end of life care in UK health and social care policies was sparse, improving palliative care may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of palliative care with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying.
Highlights
IntroductionWorldwide approximately 25 million people die each year with serious health related suffering, defined as suffering resulting from illness or injury which cannot be Sleeman et al BMC Palliat Care (2021) 20:108 alleviated without medical intervention [2]
Palliative and end of life care is a neglected global health issue [1]
We excluded strategies that focused on specific patient groups or those with a disease-specific focus such as dementia or cancer strategies as our intention was to gain a broad population overview of policy initiatives rather than condition or population specific detail. We excluded those that focused on palliative or end of life care as we were interested in understanding how palliative care aligns with broader health and social care priorities, and identifying health priorities that could be used as drivers to widen access to palliative and end of life care
Summary
Worldwide approximately 25 million people die each year with serious health related suffering, defined as suffering resulting from illness or injury which cannot be Sleeman et al BMC Palliat Care (2021) 20:108 alleviated without medical intervention [2]. This number is projected to double by 2060 [3]. Patients receiving early specialist palliative care show improvement in a range of outcomes including physical symptom control [7, 8], survival [8,9,10], and quality of life [7, 9, 11], while carers express increased satisfaction [7] and decreased depression [10].
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