Much more needs to be done to give patients and carers real choices about their care at the end of life, according to a new report by The King’s Fund.
The report, which provides examples of good practice in end-of-life care, highlights progress made in enabling patients to be cared for and die in their place of choice. Following on closely from the government’s announcement of a review of end-of-life care in 2013, it has prompted The King's Fund to warn of the dangers of losing momentum in the drive to improve end-of-life care.
Implementing the End of Life Care Strategy: lessons for good practice looks at three Marie Curie Delivering Choice programmes, which work to identify the barriers to good care and highlights examples of good practice from across the country. It argues that significant progress can be made by rolling out existing good practice and adapting it to local contexts, and that the public spending squeeze need not stand in the way of further improvements to end-of-life care.
Dr Rachael Addicott, the report's lead author, said:
'The Delivering Choice programme has provided a novel approach to improving end-of-life care by focusing on gaps in care and facilitating collaboration between health and social care providers.
'The health secretary's mantra 'no decision about me without me' is especially pertinent when it comes to end-of-life care. While we welcome the government’s continued focus on this area of care, we are concerned that the decision not to hold a review until 2013 risks losing momentum and missing the opportunity to build on the progress already made.'
Steve Dewar, Marie Curie Cancer Care's Director of Research and Innovation, said:
'Much more needs to be done to provide equitable access to, and provision of, high-quality end-of-life and palliative care to people all across the UK. Marie Curie's Delivering Choice Programme shows improvements can be made and the charity will continue to drive developments to ensure that quality of care remains high, even in times of economic uncertainty.'
The report provides guidance in line with the six steps of the end-of-life care strategy pathway to help providers and commissioners implement improvements and highlights the wider lessons learned across the following themes:
- Identification of end-of-life care needs:
Not identifying a patient’s end-of-life needs can lead to poor communication further down the line. Professionals from all disciplines should work more closely together and access to palliative care records across all of the teams in contact with patients could help to overcome communications issues.
- Encouraging greater communication about prognosis and care planning:
Specialist staff should transfer their knowledge on a regular basis to generalist staff, for whom end-of-life care is a small part of their role, to help overcome anxieties about discussing death and planning for death. All professionals should receive regular training in end-of-life care.
- Co-ordination of care:
Lack of availability of quality out-of-hours care is a significant obstacle to good end-of-life care. Participants in the Marie Curie Delivering Choice Programme strongly believe that advanced care plans can help to better co-ordinate care. It is essential that advanced care plans are shared across health and social care providers involved in the patient’s care, including carers.
- Whole systems approach:
End-of-life care takes place across a range of settings and involves a range of professionals and carers. Any service improvement must take the entire pathway of care into account.
Notes to editors:
- For further information, please contact The King’s Fund press and public affairs office on 020 7307 2585. If you are calling out of hours, please ring 07584 146035.
- The King’s Fund has worked with Marie Curie Cancer Care since April 2007 to evaluate its Delivering Choice Programme. The programme aims to develop services that help patients to make free and informed choices about where they're treated and where they wish to die.
- Implementing the End of Life Care Strategy: Lessons for good practice is the result of The King’s Fund working closely with three programme projects in Leeds, Lincolnshire and Somerset to understand aspects of current practice which help or hinder good quality and effective care. The paper is aimed a commissioners and providers at local levels. The lessons presented in the paper follow the 6 steps of the End of Life Care Strategy (Department of Health 2008a) to provide practical and relevant information
- The King's Fund research produced an additional report in 2008, Improving Choice at End of Life, on the Delivering Choice project in Lincolnshire that aims to help patients make free and informed choices about where they're treated and where they wish to die.
- Equity and Excellence: Liberating the NHS sets out a number of specific choice commitments around extending choice of provider and treatment in planned hospital care and, more specifically, in maternity, mental health, end of life care and long term conditions.
- The King’s Fund is a charity that seeks to understand how the health system in England can be improved. Using that insight, we help to shape policy, transform services and bring about behaviour change. Our work includes research, analysis, leadership development and service improvement. We also offer a wide range of resources to help everyone working in health to share knowledge, learning and ideas.