This section includes the following subsections:
It is difficult to exaggerate the importance of good end of life care. After all, we only ever have one chance to get it right.
Over 500,000 people die each year in England of whom two thirds will be over 75. Death occurs in a wide variety of settings from hospitals, care homes and hospices to the home. Many people will be transferred many times between these different settings in their final years, months, days and hours. So being responsive to their individual needs and preferences is an enormous challenge.
This is, of course, the whole point of the National End of Life Care Programme. Launched in November 2004 it aims to increase individuals’ choice over where they wish to live and die. To make this a reality the programme has been working alongside a number of different organisations, including social and health care services as well as the voluntary and private sectors. Above all, there is a need to work across organisational boundaries and in partnership with the individual and their family to ensure care is person-centred.
It is important to recognise there is still a great deal more to be done. At the same time many are already beginning to tackle these issues by creating innovative and flexible services that meet individuals’ needs in the final stage of life.
The National End of Life Care Programme content on this site is freely available under the condition that any further distribution acknowledges the source and author.
Copies of the the above video are available on DVD from information@eolc.nhs.uk.
This document highlights the key issues and challenges of incorporating ACP into routine patient care. It contains useful information on the key principles of ACP and on the definitions of ACP and related terms. It also indicates how ACP links to the Mental Capacity Act.
(NHS National End of Life Care Programme/The University of Nottingham, August 2008 [File:404KB])
The purpose of this guide is to help health and social care professionals understand and implement the new law relating to advance decisions to refuse treatment, as contained in the Mental Capacity Act 2005. The Mental Capacity Act (MCA) came into force in 2007 and it is supported by a Code of Practice. Everyone must comply with the requirements of the Act.
Download an example proforma for My Advance Decisions to Refuse Treatment Form.
People and professionals might use this example or develop it to meet their own individual or local needs. There are other examples to be found but care is required to ensure that they comply with the legal requirements.
(NHS National End of Life Care Programme, 02 September 2008 [File:2,960KB])
The aim of this publication is to help care home staff consider some of the issues they face in meeting residents’ end of life care needs and therefore arrive at potential solutions. The guide also sets out details about the EoLC Programme tools and many other useful resources.
(NHS National End of Life Care Programme / The National Council for Palliative Care, June 2007 [File:845KB])
This Core competences for end of life care guide for training health and social care staff, to support the National end of life care strategy, aims to improve the skills and knowledge of the estimated 2.5 million people whose work brings them into some contact with those approaching death.
The document is the first outcome of a three-strand workforce development programme – a suite of e-learning resources developed by e-Learning for Health will be launched next January and a communication skills programme will be available later in 2010.
(NHS National End of Life Care Programme, 25th June 2009)
Effective and sensitive communication between staff and patients, their relatives and carers is fundamental to high quality end of life care. This promotional leaflet for the communication skills project covers 12 pilot site initiatives across England that explore and help develop a more skilled and confident workforce.
(National End of Life Care Programme, January 2010)
This framework is an important step in ensuring that people with advanced kidney disease receive the very best care in the last years, months and days of their lives. It is about enabling people to achieve high quality end of life care, rather than ‘telling them what to do’. To achieve this, it explores the ‘kidney specific’ issues of end of life care focusing on patients opting for conservative kidney management and those “deteriorating despite” dialysis.
(NHS National End of Life Care Programme, 3 June 2009)
This is an executive summary for a study commissioned by the National End of Life Care Programme to examine these issues in relation to the care of older people in nursing homes. The End of life care in nursing homes: Understanding and mapping solutions - Final Report: Jan 2009 is also available.
The study was conducted by staff from the Sue Ryder Care Centre for Palliative and End of Life Studies at the University of Nottingham and from the International Observatory on End of Life Care at Lancaster University between September 2007 and November 2008.
(University of Nottingham and Lancaster University, November 2008)
Many care homes feel isolated and do not have the support they need to provide top quality end of life care. The National End of Life Care Programme recently commissioned a study to examine how these issues affected the care of older people in nursing homes. This briefing outlines the nain themes that emerged and summarised the report recommendations.
(NHS National End of Life Care Programme, May 2009)
This End of Life Care Learning Resource Pack should help those caring for someone with a life limiting condition.
Primarily aimed at carers in an extra care housing setting, the resource pack was a key recommendation from staff taking part in a service improvement project last year and has been piloted in an extra care setting in Gateshead.
The pack has been developed by Housing 21 and the National End of Life Care Programme, with support from a Skills for Care grant. It is a practical tool providing useful information and guidance, including:
(National End of Life Care Programme with Housing21, 09 July 2009)
A guide to offering care and support to people with a learning disability at the end of life.
(NHS National End of Life Care Programme / NHS North East, 2007 [File:622KB])
This document provides the underpinning framework of core National Occupational Standards (NOS) for the end of life care workforce - from health care professionals (medics, nurses and AHPs), managers and social care workers through to care assistants and ancillary staff. These standards can support workforce development, training and education, and the development of new and enhanced posts and roles.
(National End of Life Care Programme & Partners, January 2010)
This information will support the commissioning of a whole-systems approach to end of life care and is intended for Primary Care Trusts (PCT's), practice based commissioners, mental health service commissioners, older people service commissioners and long term condition service commissioners.
It has been provided by the National End of Life Care Programme team in conjunction with he Department of Health, commissioning work group, the end of life care service specification working group and individual commissioners in producing this information for commissioning end of life care services and focuses on delivery of a high quality, individualised service to meet the physical, emotional, spiritual and social needs of all people in their end of life phase and their carers.
(NHS National End of Life Care Programme, December 2008 [File:1,391KB])
This guidance comes from the NHS National End of Life Care Programme, Care Homes sub-group and is aimed at care home managers and staff interested in improving care for those care home residents in the final stages of life.
(NHS National End of Life Care Programme / The National Council for Palliative Care, April 2006 [File:411KB])
This report, subtitled "A policy-into-pratice evaluation", by Lorna Easterbrook with Sarah Vallelly, provides details of the 6-month service improvement pilot project designed to enhance dignity and choice in end of life care (EoLC) undertaken by Housing 21 and the National End of Life Care Programme.
A summary report is also available.
(National End of Life Care Programme with Housing21, October 2008 [File:337KB])
This document reports the findings and implications of a national evaluation study of the National End of Life Care Programme conducted by the Sue Ryder Care Centre for Palliative and End of Life Studies at the University of Nottingham between August 1st 2006 and July 31st 2007. The stated aim of the National End of Life Care Programme is to ‘Improve the quality of care at the end of life for all patients and enable more patients to live and die in the place of their choice’.
(NHS National End of Life Care Programme / The University of Nottingham, December 2007 [File:163KB])
The case studies on this website have been provided by a broad spectrum of people and organisations and the National End of Life Care Programme welcomes new contributions. If you wish to submit an example of good practice implemented within your organisation please complete the Good Practice Case Study Submission Form and follow the instructions on the form.
(NHS National End of Life Care Programme, March 2009 [File:100KB])
This report highlights progress made over the last year and gives examples of innovative work to improve end of life care and the importance of key partnerships with both statutory and voluntary organisations.
(NHS National End of Life Care Programme, March 2006 [File:1,938KB])
Summary of progress in rolling out End of Life Care best practice care and training models to GPs, hospitals, hospices and care homes.
(NHS National End of Life Care Programme, March 2006 [File:232KB])
The National End of Life Care Programme in collaboration with the University of Nottingham and the National Council for Palliative Care has developed the enclosed booklet.
The aim is to provide simple and easy to understand guidance for patients making advance care plans for their future. It may prove relevant to family members and informal carers. We anticipate that professionals will find this booklet a useful support tool when approaching the often difficult situation of discussing advance care planning with people who have a life limiting illness.
This guide is also available in a printable A5 booklet version or an order form can be downloaded.
(NHS National End of Life Care Programme, March 2009 [File:295KB])
The NHS National End of Life Care Programme Support Team seeks to enhance patients’ quality of care at the end of life by improving the communication between, and skills of, all those involved in their care. The purpose of this document is to promote existing examples of innovative practice in ambulance trusts that have improved communication of patients’ needs at the end of life; to suggest programmes of possible training to enhance the competencies of ambulance trust staff to meet these needs; and to make recommendations for further developments to promote practice and so enhance end of life care within ambulance trusts.
(NHS National End of Life Care Programme, October 2007 [File:1,202KB])
