End of Life Care
Report, together with formal minutes relating to the report
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. The Health Committee has 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.
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 we also recommend 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.
We welcome the focus on end of life care by the Care Quality Commission and recommend that they 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 their 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 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 understand the mechanisms available to patients and carers under the Mental Capacity Act 2005 which allow people to make their wishes clear. 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 also made more difficult by the shortfall in community nurses and specialist outreach palliative care.
We strongly recommend 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.