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

What determines duration of palliative care before death for patients with advanced disease?

Bennet, M.L. et al. (2016) BMJ Open. 6:e012576

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Objective For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors.

Conclusions The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer.

Read the full abstract and article here

End of life care for infants, children and young people

NICE has published new NICE guidance: End of life care for infants, children and young people with life-limiting conditions: planning and management (NG61).

This guideline covers the planning and management of end of life and palliative care in for infants, children and young people (aged 0–17 years) with life-limiting conditions. It aims to involve children, young people and their families in decisions about their care, and improve the support that is available to them throughout their lives.

Additional link: NICE news report