Talking about death

Age UK and the malnutrition taskforce have published a booklet and accompanying animation designed to help people have positive conversations about death with the people they care about.

Lets talk about death: How to have difficult conversations

 

Lesley Carter, Programme Head of Malnutrition Taskforce and Head of Health Influencing at Age UK said: ‘We know that having the confidence to start a conversation about dying and death is very hard, we struggle to find the right time, the right words and we are terrified of upsetting the other person and ourselves.

‘We have written this bright well-illustrated book and film that can be used to explore this issue with children, adults and professionals. We’ve explained why it is important to talk about dying and death, given ideas of how you could start a conversation, what you may want to say. Obviously, we are all different, you will find your own words. We hope that these resources will give you the confidence to give it a go.’

The booklet is available to download here

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Choice in end of life care

How the National End of Life Care Programme Board is delivering personalisation and choice in care for people at or near the end of life. | Department of Health

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This report sets out the progress the National End of Life Care Programme Board has made in implementing the government’s choice commitment.

The measures include:

  • supporting the roll-out of digital palliative and end of life care records to all areas by 2020
  • inspecting and rating NHS hospital and community services for end of life care
  • providing support to trusts to help them improve end of life care services
  • testing personal health budgets for people approaching the end of life to give them choice and control over their care
  • developing metrics to assess quality and experience in end of life care
  • working to change the nursing and medical undergraduate and postgraduate curricula to improve patient choice and quality of care

Full report: One Year On: The Government Response to the Review of Choice in End of Life Care

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

Delivering high quality end of life care for people who have a learning disability

This guidance document provide resources and tips for commissioners, service providers and health and social care staff providing, or delivering care to people with a learning disability at the end of their lives | NHS England

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Image source: NHS England

This ‘top tips’ guide aims to support commissioners, providers and clinicians to reduce inequalities in palliative and end of life for people with a learning disability, focusing on ‘The Ambitions for Palliative and End of Life Care’. These six ambitions provide a framework for national and local health and care system leaders to take action to improve palliative and end of life care. Developed by 27 organisations across the palliative and end of life care system, these ambitions set out what high quality palliative
and end of life care looks like. The ambitions call on leaders from every part of the health and caresystem, and the wider community, to put the framework into practice.

This ‘top tips’ guidance has been developed by NHS England in association with the Palliative Care for People with Learning Disabilities (PCPLD) Network. The development process involved consultation with Public Health England and a range of commissioners, providers and professionals working within palliative and end of life care and learning disability settings. People with lived experience have also helped us to develop the guide.

 

Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life

Little is known about the patterns and predictors of the use of end-of-life health care among patients with acute myeloid leukemia (AML) | Journal of Clinical Oncology

End-of-life care is particularly relevant for older adults with AML because of their poor prognosis.

We performed a population-based, retrospective cohort study of patients with AML who were ≥ 66 years of age at diagnosis and diagnosed during the period from 1999 to 2011 and died before December 31, 2012. Medicare claims were used to assess patterns of hospice care and use of aggressive treatment. Predictors of these end points were evaluated using multivariable logistic regression analyses.

In the overall cohort (N = 13,156), hospice care after AML diagnosis increased from 31.3% in 1999 to 56.4% in 2012, but the increase was primarily driven by late hospice enrollment that occurred in the last 7 days of life. Among the 5,847 patients who enrolled in hospice, 47.4% and 28.8% started their first hospice enrollment in the last 7 and 3 days of life, respectively. Among patients who transferred in and out of hospice care, 62% received transfusions outside hospice. Additionally, the use of chemotherapy within the last 14 days of life increased from 7.7% in 1999 to 18.8% in 2012. Patients who were male and nonwhite were less likely to enroll in hospice and more likely to receive chemotherapy or be admitted to intensive care units at the end of life. Conversely, older patients were less likely to receive chemotherapy or have intensive care unit admission at the end of life, and were more likely to enroll in hospice.

End-of-life care for older patients with AML is suboptimal. Additional research is warranted to identify reasons for their low use of hospice services and strategies to enhance end-of-life care for these patients.

Full reference: Wang, R. et al. (2017) Health Care Use by Older Adults With Acute Myeloid Leukemia at the End of Life. Journal of Clinical Oncology. Published online: 7th August 2017

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

Critical Care Nurses Suggestions to Improve End-of-Life Care Obstacles

Critical-care nurses (CCNs) provide end-of-life (EOL) care on a daily basis as 1 in 5 patients dies while in intensive care units. Critical-care nurses overcome many obstacles to perform quality EOL care for dying patients | Dimensions of Critical Care Nursing

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Objectives: The purposes of this study were to collect CCNs’ current suggestions for improving EOL care and determine if EOL care obstacles have changed by comparing results to data gathered in 1998.

Methods: A 72-item questionnaire regarding EOL care perceptions was mailed to a national, geographically dispersed, random sample of 2000 members of the American Association of Critical-Care Nurses. One of 3 qualitative questions asked CCNs for suggestions to improve EOL care. Comparative obstacle size (quantitative) data were previously published.

Results: Of the 509 returned questionnaires, 322 (63.3%) had 385 written suggestions for improving EOL care. Major themes identified were ensuring characteristics of a good death, improving physician communication with patients and families, adjusting nurse-to-patient ratios to 1:1, recognizing and avoiding futile care, increasing EOL education, physicians who are present and “on the same page,” not allowing families to override patients’ wishes, and the need for more support staff. When compared with data gathered 17 years previously, major themes remained the same but in a few cases changed in order and possible causation.

Conclusion: Critical-care nurses’ suggestions were similar to those recommendations from 17 years ago. Although the order of importance changed minimally, the number of similar themes indicated that obstacles to providing EOL care to dying intensive care unit patients continue to exist over time.

Full reference: Beckstrand, R.L. et al. (2017) Critical Care Nurses Suggestions to Improve End-of-Life Care Obstacles: Minimal Change Over 17 Years. Dimensions of Critical Care Nursing. 36(4) pp. 264–270