Dying Matters Films

Dying Matters has produced a number of  films. These can be used in numerous health and social care training scenarios, as well as in hospices, GP surgeries, care homes, voluntary organisations, community groups – anywhere, in fact, where discussions about end of life planning are appropriate.

One such film is that by Kate Granger, a Specialist Registrar in Geriatric Medicine, who has incurable cancer. Since her diagnosis, Kate has written two books and launched the “hello my name is” campaign, which has received national attention. In the powerful and emotional ‘Kate’s Story’, Kate and her husband Chris discuss their situation with honesty, humour and pragmatism.

Watch the film and find out more about Kate Granger

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A survey of older peoples’ attitudes towards advance care planning

Background: advance care planning (ACP) is a process to establish an individual’s preference for care in the future; few UK studies have been conducted to ascertain public attitudes towards ACP.

Objective: the aim of this study was to assess the attitudes of older people in East Midlands through the development and administration of a survey.

Methods: simple descriptive statistics were used to describe the responses and regression analyses were used to evaluate which items predicted responses to key outcomes.

Results: of the 5,375 (34%) community-dwelling older peoples, 1,823 returned questionnaires. Seventeen per cent of respondents had prepared an ACP document; of whom, 4% had completed an Advance Decision to Refuse Treatment (ADRT). Five per cent of respondents stated that they had been offered an opportunity to talk about ACP. Predictors of completing an ACP document included: being offered the opportunity to discuss ACP, older age, better physical function and male gender. Levels of trust were higher for families than for professionals. One-third of the respondents would be interested in talking about ACP if sessions were available.

Conclusion: although a third of the respondents were in favour of discussing ACP if the opportunity was available with their GP, only a relative minority (17%) had actively engaged. Preferences were for informal discussions with family rather than professionals.

Reference: A survey of older peoples’ attitudes towards advance care planning  AGE & AGEING, 2015;44(3):371-376

Life after the Liverpool Care Pathway (LCP)

The LCP was widely used with an aim to improve communication and care for dying individuals and their relatives. However, widespread media criticism prompted a review, which resulted in the discontinuation of the LCP across U.K. clinical settings.1 Three key themes emerged: 1) “lessons learned”; 2) “uncertainties and ambivalences”; and, 3) “the future.” Critical care practitioners reported life after the LCP … often involved various clinical ambivalences, uncertainties and inconsistencies in the delivery of end-of-life care (EOLC), especially for less experienced practitioners. They had “become accustomed” to the components of the LCP, which still guide them in principle to ensure quality EOLC. The LCP’s format was perceived to be a useful clinical tool, but was criticized as a “tick-box exercise,” and for lacking family involvement. Despite experienced practitioners being able to deliver quality EOLC without using the LCP, junior nursing and medical staff need clear guidelines and support from experienced mentors in practice. Evidence-based guidelines related to family involvement in EOLC planning in critical care settings are needed to avoid future controversies.

Reference: Life after the Liverpool Care Pathway (LCP): A qualitative study of critical care practitioners delivering end-of-life care  JOURNAL OF ADVANCED NURSING | Online – 13 May 2015

Choice and compassion at the end of life

End of life care in England has recently been framed by two very different discourses. One (connected to advance care planning) promotes personal choice, the other promotes compassionate care; both are prominent in professional, policy and media settings. The article outlines the history of who promoted each discourse from 2008 to early 2015, when, why and how and this was done. Each discourse is then critically analysed from a standpoint that takes account of bodily decline, structural constraints, and human relationality. We focus on the biggest group of those nearing the end of their life, namely frail very old people suffering multiple conditions. In their care within contemporary healthcare organisations, choice becomes a tick box and compassion a commodity. Informed choice, whether at the end of life or in advance of it, does not guarantee the death the person wants, especially for those dying of conditions other than cancer and in the absence of universally available skilled and compassionate care. Enabling healthcare staff to provide compassionate, relational care, however, implies reversing the philosophical, political and financial direction of healthcare in the UK and most other Anglophone countries.

Reference: Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Social Science & Medicine Volumes 136–137, July 2015, Pages 99–105

What is palliative care?

Palliative care is a core part of the role of a GP. It can and should begin as early as possible in a patient’s course of illness, but as GPs we may individually become involved at a variety of points without necessarily having had the opportunity to build a prior relationship with a patient. This can be challenging, particularly if seeing a patient for the first time when they are in the last days of life. This article aims to explore the different points at which palliative care may begin and summarise new guidance that may inform management.

Reference: InnovAiT: Education and inspiration for general practice. Published online before print May 12, 2015

Death and the Workplace

It is well known that bereavement presents major challenges of adjustment to the individuals so affected, but what is much less well recognized is the major challenges bereavement can present to organizations in general and their managers and human resources professionals in particular. This article explores the significance of death for the workplace and argues that organization that fail to give adequate attention to such matters will be poorly placed when it comes to promoting workplace well-being.

Reference:  Illness, Crisis and Loss July 2015 vol. 23 no. 3 211-225 

End-of-life care should be a priority for the new Conservative government

Nearly two-thirds of people in Britain would like to see end-of-life care being made a priority by the new Tory Government, according to a new study. The ComRes research commissioned by the Dying Matters Coalition, also found that three-quarters of people (75%) agree that providing end-of-life care should be a fundamental part of the work of the National Health Service. A huge part of the problem is that discussing dying and making end of life plans remains a taboo for millions of people in the U.K. The Dying Matters Coalition found that although a third of British adults (32%) think about dying and death at least once a week, 72% of the public believe that people in Britain are uncomfortable discussing dying, death and bereavement. Only 35% of the public say they have written a will, 32% that they have registered as an organ donor or have a donor card, 31% that they have taken out life insurance and 27% that they have talked to someone about their funeral wishes.