Award-winning initiative gives people the opportunity to shape their end of life care

Warrington CCG has landed a top prize in the Health Service Journal Awards for their work to improve end of life care with personal health budgets.

Winning the 2017 “Compassionate patient care” award, Warrington is one of five areas across the country now giving people more of a say in the care they receive in their last weeks and months of life. Personal health budgets are part of a range of work being led by NHS England to improve end of life care.

Hear patients, hospice staff and commissioners talk about the benefits of personal health budgets in Warrington in this short film:

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Death and dying in the UK

Death, dying and devolution | The University of Bath Institute for Policy Research

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The articles in this collection cover what happens before someone dies, including issues around palliative care and support for carers; what happens at death, including issues around the proper regulation of funerals and public financial support for the bereaved; and what happens to those who are left behind, including emotional support for those who have been bereaved and issues around managing the estates of those who have died.

The report reviews policy areas associated with death, dying and bereavement within the context of devolution. It focuses on the national and regional delegation of power, resources and authority across the UK and the implications of this for those who are dying, dead, or bereaved as well as those tasked with organising and running the services that support these groups of people.

The report can be downloaded here

Talking about end-of-life care

The purpose of the paper is to describe how residents express preferences for end-of-life (EOL) care | Geriatric Nursing

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For this qualitative study, we conducted semi-structured interviews and completed conventional content analysis to describe how residents’ expressed their preferences for care at the end of life. Sixteen residents from four nursing homes (NH) in southeastern Pennsylvania participated in this study. Residents were on average 88 years old, primarily non White, and widowed. Three key domains emerged from the analyses: Preferences for Today, Anticipating the End of My Life, and Preferences for Final Days. Residents linked their everyday living and EOL preferences by using ‘if and then’ logic to convey anticipation and readiness related to EOL. These findings suggest new strategies to start discussions of EOL care preferences with NH residents.

Full reference: Towsley, G.L. et al. (2017) Talking about end-of-life care: Perspectives of nursing home residents. Geriatric Nursing. Published online: 01 August 2017

Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life

Developing accurate prognostic awareness, a cornerstone of preference‐based end‐of‐life (EOL) care decision‐making, is a dynamic process involving more prognostic‐awareness states than knowing or not knowing | The Oncologist

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Understanding the transition probabilities and time spent in each prognostic‐awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic‐awareness states between consecutive time points in 247 cancer patients’ last 6 months and estimated the time spent in each state.

Terminally ill cancer patients’ prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients’ transitions toward accurate prognostic awareness in a timely manner to promote preference‐based EOL decisions.

Terminally ill Taiwanese cancer patients’ prognostic awareness generally remained stable, with a tendency toward developing higher states of awareness. Health care professionals should appropriately assess patients’ readiness for prognostic information and respect patients’ reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness, provide desired and understandable prognostic information for those who are ready to know, and give direct and honest prognostic information to clarify any misunderstandings for those with inaccurate awareness, thus ensuring that they develop accurate and realistic prognostic knowledge in time to make end‐of‐life care decisions.

Full reference: Hsiu Chen, C. et al. (2017) Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by Multi‐State Markov Modeling. The Oncologist. Published online before print: 6th July 2017.

Passed away, kicked the bucket, pushing up daisies – the many ways we don’t talk about death

Fear of talking about dying ‘leading to thousands of traumatic hospital deaths’

Cancer charity says there is a ‘crisis of communication’ in UK over dying | The Independent

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Thousands of cancer patients would prefer to die at home but are forced to suffer “traumatic” deaths in hospital, according to Macmillan. Taboos around talking about death are fuelling a “crisis of communication” in the UK that prevents people from planning their final days, warned the organisation in a new report.

Research by the charity found that while 38 per cent of people who die from cancer die in hospital, just one per cent would choose to do so, with 64 per cent saying they wanted to die at home.

Read the news article here

A qualitative study exploring use of the surprise question in the care of older people

Elliott, M. & Nicholson, C.A. (2017) BMJ Supportive & Palliative Care. 7:32-38.

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Objective: The question “Would you be surprised if this patient were to die in the next 6–12 months?” has been included in UK palliative care guidance with the aim of supporting the identification and care planning of those nearing the end of life. Little is known about how the surprise question is utilised in the care of older people within primary care. This study sought to explore the perceptions and experiences of general practitioners (GPs).

Conclusions: Greater understanding is needed as to the difficulties experienced by GPs when assessing prognosis in older people. We propose a thematic model which could support GPs by focusing assessment on the supportive and palliative care needs of older people nearing the end of life.

Read the full article here