Study Explores End-of-Life Clarity in Dementia Patients

An interdisciplinary research team is investigating cases of paradoxical lucidity, a phenomenon in which a person with severe dementia suddenly “wakes up” and exhibits surprisingly normal behaviors, only to pass away shortly thereafter. Click here for PsychCentral article

The final injustice: variation in end of life care in England

This report from Macmillan Cancer Care provides an insight into the experience of cancer patients' final months and years. It finds that cancer patients approaching the end of their life face repeat emergency visits and the situation is worse for patients who are most socioeconomically disadvantaged. The report highlights the variation in patient experience for people dying of cancer and the need for improved access to care and support in the community.

End of Life Care Profiles: December 2017 update

The End of Life Care Profiles data update for December 2017 has been published by Public Health England (PHE). The profiles are designed to improve the availability and accessibility of information around end of life care. The data are presented in an interactive tool that allow users to view and analyse them in a user-friendly format. Click here for link to DoH

End of Life Care data to inform Sustainability and Transformation Partnerships: Updated Tool and Metadata Guide

The National End of Life Care Intelligence Network (NEoLCIN) present key data about end of life care to assist Sustainability and Transformation Partnerships (STPs) as they develop their plans for services.

A second class ending: Exploring the barriers and championing outstanding end of life care for people who are homeless

There is huge variation in the quality of care that people receive at the end of their life.  This report and the research it draws on make it clear that by working together, healthcare services and the wider system – such as housing, social services and the charity sector – have a vital role to play in improving the quality and co-ordination of care for homeless people as they reach the end of life.

Choice in end of life care: government progress

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.

One year on: the Government response to the review of choice in end of life care

This DH report sets out 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.

Death, Dying and Devolution

This report, from the The University of Bath Institute for Policy Research, 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.

End of life care for infants, children and young people [QS160]

New quality standard covers end of life care for infants, children and young people (from birth to 18 years) who have a life-limiting condition. Life-limiting conditions are those that are expected to result in an early death for the person. It also covers support for family members and carers. It describes high-quality care in priority areas for improvement.

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

This guidance from NHS England provides 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.

End of Life Care data to inform Sustainability and Transformation Partnerships

Public Health England in partnership with NHS and Care Quality Commission (CQC) present key data about end of life care to assist Sustainability and Transformation Partnerships (STPs) as they develop their plans for services.

PHE are publishing the data supplied to this project as a spreadsheet (End of Life Care STP Data Tool) together with a metadata guide (End of Life Care STP Data Tool MetaGuide).

The spreadsheet includes the most recently available data 25 indicators presented at STP and CCG level, and includes the number of deaths, the age, cause and place of deaths, data describing hospital admissions near the end of life together with information on the number of care home beds and use of palliative care registers by GP practices.

Three projects chosen for research into system efficiency and sustainability in health and social care

Three new research projects have been awarded grants by the Health Foundation, as part of its £1.5 million Efficiency Research Programme.  They will explore innovative approaches to achieving greater system efficiency and sustainability in health and social care in the UK.

Allocative efficiency in end-of-life care Lead organisation: Imperial College London

This research project will look at whether improvements in the efficiency of health and social care delivery at the end of life could enable access to higher-quality and more personalised care for patients.

WORKTECC: Workforce Operations that Realise Knowledge-based Transformational Efficiency gains in Community Care Lead organisation: University College London (UCL)

This research project aims to identify the scope for transformational efficiency gains in home-based NHS care. It will assess whether workforce operations used by other industries could deliver improved efficiency, and if so, how.

Efficiency, cost and quality of mental health care provision Lead organisation: The University of York

This research project will look at the efficiency, cost and quality of current mental health care provision, assess organisational factors, and estimate how mental health trusts can make changes to improve their efficiency and cost effectiveness.

No regrets: how talking more openly about death could help people die well

This report from Macmillan Cancer Support finds that more than 62,000 people die of cancer in hospitals each year in the UK despite a significant majority stating that they would like to die at home. It reveals the challenging obstacles that people face when discussing death and highlights the need for better communication to help people plan for their final days.

BMA and FPM guidance produced on analgesic prescribing and end of life pain management

The British Medical Association has released two guidance documents around the use of analgesics.

Chronic pain: supporting safer prescribing of analgesics
Improving analgesic use to support pain management at the end of life

Terminally ill children should have access to around-the-clock homecare, says NICE

NICE has published a draft standard aiming to improve end of life care for children in England.

It says families who are caring for terminally ill children at home should have 24-hour access to specialist medical support and advice.

Dementia best practice now online

NHS England has developed a “best practice repository” as part of its online Learning Environment for examples of good dementia care.

Response to concerns about our guidance for doctors on attempting CPR and DNACPR orders

Clarification on the GMC's guidance on the Treatment and care towards the end of life,

Care of dying adults in the last days of life

This NICE quality standard covers the clinical care of adults (aged 18 and over) who are dying, during the last 2 to 3 days of life. It describes high-quality care in priority areas for improvement.

End of life care core skills education and training framework

This framework developed in partnership with Skills for Care and Health Education England, promotes greater collaboration between organisations in the health and care sectors and in the community. It sets out standards for staff education and training and classifies key skills and knowledge into three tiers, ranging from general end of life care awareness to the in-depth knowledge needed to care for and support an individual approaching the end of their life, and their family. A accompanying training pack has been developed to increase awareness and understanding of the importance of working together to support people at the end of their lives.

Cost-effective commissioning of end of life care

These resources bring together existing evidence in palliative and end of life care, describe the wider policy context, and outline some of the key initiatives supporting the end of life care in England. The economic tool helps to inform commissioners in their decision-making for end of life care services. It explores the trade-offs between shifting end of life care out of secondary services and describes interventions that might be deployed to achieve such savings.