NCPC backs MPs' call for free end of life care
The report, published today, looked at the state of end of life care since the independent Review of the Liverpool Care Pathway, chaired by Baroness Neuberger, and found great variation in quality and practice across both acute and community settings.
It makes a number of recommendations for improvement, and in particular recommends that social care should be free to everyone at the end of life.
The MPs’ conclusions were:
- All clinicians and providers who may care for people at the end of life should be aware of the Five Priorities of Care but in light of the variation in practice the Committee also recommends that a senior named person in each NHS Trust is given responsibility for monitoring how end of life care is being delivered within their organisation.
- The focus on end of life care by the Care Quality Commission was welcome and recommended that CQC monitor both acute and community health care providers’ move to the new approach in their inspections and as part of their thematic review.
- Round-the-clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life-limiting conditions and their families and carers are treated, especially if there were opportunities to share their expertise with other clinicians. Crucially this expertise should be more equitably available to people with a non-cancer diagnosis, older people and those with dementia, for whom early identification and sensitive discussion and documentation of their wishes is also important.
- The situation on end of life care is unlikely to improve unless clinicians feel confident to identify people who may be near the end of life and to start conversations with their patients about their wishes. Too often, however, staff feel that they lack the confidence, skills and training needed to raise end of life issues with patients, let alone understanding the mechanisms available to patients and carers under the Mental Capacity Act 2005 which allow people to make their wishes clear. The Committee recommends that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and their legal status.
- The use of Electronic Care Planning makes it easier to document and share people's wishes and care records between providers and also reduces the risk of an unwanted admission to hospital or failure to act on advance decisions to refuse treatment.
- Most people who express a preference would like to die at home but that is made more difficult by the shortfall in community nurses and specialist outreach palliative care.
- The Committee strongly recommended that the Government provide free social care at the end of life to ensure that no one dies in hospital for want of a social care package of support.
- Sustainable, long-term funding for the hospice sector also needs to be addressed as part of the Government's response to the Palliative Care Funding Review, as does full recognition of the importance of the voluntary sector.
Bereavement support for families should also be included as part of end of life care but availability is currently fragmented and inconsistent around the country. Family members and carers are too often left inadequately supported yet could be helped if there were greater awareness amongst health and social care staff of the impact of bereavement, as well as universal access to bereavement services.
We recommend further research into measuring the quality of end of life care and the priorities that matter most to people with terminal illnesses, their families and carers.
As is so often the case, we feel these important issues will not be addressed without clearly identified leadership to ensure that end of life care is prioritised and embedded in all future planning of services, based on the Five Priorities of Care, and delivered nationally to all those who could benefit.
The National Council for Palliative Care (NCPC), lead charity of Dying Matters, gave both written and oral evidence to the Committee, and was referenced throughout the report. Simon Chapman, Director of Policy, Intelligence and Parliamentary Affairs at NCPC, said: “The NHS was set up to care for people from cradle to grave, but as the Health Committee’s very thoughtful and thorough report finds, despite some excellent care which we should rightly be proud of, the system is still too often failing people as they reach the end of their lives. At the very time when we are at our most vulnerable and need to be able to count on high quality care and support, it’s heart-breaking and unacceptable that so many people’s needs are still not being met.
"The Committee is absolutely right to have made the recommendations it has done, especially about the importance of fast and free social care at the end of life, round the clock care, training, research and measuring people’s quality of life when they are dying. We particularly welcome the Committee’s conclusion that the leadership of the NHS should ensure that end of life care is embedded as a core priority at every level.
"We only have one chance to get care right for people who are dying, which is why taking forward the recommendations in this report and changing the nation’s approach to end of life care must be a priority for whoever is in government after May’s election.”
The Chair of the Committee, Dr Sarah Wollaston MP, said: "The care that people receive at the end of their lives has a profound impact not only upon them but also upon their families and carers. At the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise. There are unacceptable levels of variation in the care that people receive and this needs to be addressed so that high quality end of life care is available to everyone regardless of their age, medical condition or where they live.
"We must make sure that specialist palliative care expertise is accessible within hospitals and community settings as well as within our hospices."
Read the report on the Health Committee website
Publications / Reports / Reference Material: Copies of all select committee reports are available from the Parliamentary Bookshop (12 Bridge St, Westminster, 020 7219 3890) or the Stationery Office (0845 7023474).