The Leadership Alliance for the Care of Dying People has today published details of the approach to secure high-quality, personalised care for everyone in the last few days and hours of life in England.
Today’s publication by the alliance of 21 organisations follows the report by the independent review that I commissioned to consider the Liverpool care pathway (LCP). The review panel made 44 recommendations, including that the LCP should be phased out over the succeeding six to 12 months. As I announced on 15 July 2013, the Government accepted that recommendation. I said that the Government would consider fully the recommendations of the review and work with the organisations to which the panel addressed its recommendations, other stakeholders and charities to inform a full system-wide response to the review’s recommendations. That response, which includes details of the new approach, is published today.
The work that has been done goes beyond responding to each of the recommendations. The leadership alliance has developed five priorities for care of the dying person. These set out, for dying people, their families, health and care staff and others, what should happen when someone is thought to be close to dying.
The priorities for care provide that:
the possibility that a person may die within the next days and hours should be recognised and communicated clearly, decisions about care made in accordance with the person’s needs and wishes, and these decisions reviewed and revised regularly; sensitive communication should take place between staff and the person who is dying and those people who are important to the dying person;
the dying person, and those identified as important to them, should be involved in decisions about treatment and care;
the people important to the dying person should be listened to and their needs respected; and
care should be compassionate and reflect a care plan for the individual dying person.
The response includes further details of the priorities, as well as a statement of the duties and responsibilities of health and care staff to deliver the priorities, and implementation guidance for service providers and commissioners. The 21 organisations have also published a collective statement, as well as individual statements, of the key actions they will take to implement the priorities. These include that the National Institute for Health and Care Excellence (NICE) will be developing new clinical guidelines on the care of the dying adult and end-of-life care for children. These guidelines will inform the development of a quality standard for end-of-life care for children and an update of NICE’S quality standard on end-of-life care for adults. From October 2014, Care Quality Commission (CQC) inspections will incorporate the priorities as part of inspection of end of life care.
Taking account of the fact that one of the panel’s recommendations was in two parts, the organisations have accepted 28 of its recommendations in full and 12 in principle or in part. There are three that have not been accepted at this stage or that are still being considered. Two recommendations have not been accepted. NHS England and Health Education England will not promote the use of prognostic tools in relation to dying. The approach in the priorities for care does not, unlike the LCP, rely on a diagnosis of dying. The priorities apply
“when it is thought that a person may die within the next few days and hours”
and will support good care irrespective of whether someone is actually dying.
Rather than issue guidance to nurses on caring for people at the end of life, the Nursing and Midwifery Council will instead incorporate the principles behind the priorities into the revised NMC code: standards of conduct, performance and ethics, a draft version of which is currently out for consultation. It has also published its standards for competence as a separate stand-alone document.
The review panel found evidence of both good and poor care given to people in the last few days and hours of life. Use of the LCP was not found to be synonymous with poor care. The panel said that whilst in some circumstances, the LCP had supported the delivery of good care, it was not always applied properly. Where it was used as a generic protocol, the LCP ran the risk of becoming process-driven.
As I made clear in my statement of 15 July 2013, everyone who uses health and care services has the right to be treated with respect, dignity and compassion by staff with the skills and time to care for them properly, and any variation in standards of care is not acceptable. The priorities for care make it clear that where someone is thought to be in the last few days and hours of life, there must be sensitive communication, involvement in decision making and consideration of the needs of those who matter most to the dying person.
Key national organisations in the health and care system have committed to a co-ordinated programme of actions to take forward the priorities for care. This includes providing relevant education and training, as well as regulatory and inspection action. There is no excuse for individual organisations and health and care staff to deliver anything less than high-quality care for people in the last few days and hours of life, as set out in the five priorities.
The Government will continue to take a close interest in this area and intend to publish a report, around July 2015, two years on from the review panel’s report, assessing how national organisations have implemented the commitments they have set out today. The independent review panel chaired by Baroness Neuberger will continue to have a role, providing independent advice to Ministers about implementation of the commitments in the system-wide response. Their views will inform the report that the Government intend to publish.
I am grateful to members of the panel for agreeing to continue in this role, as well as for their wider commitment to ensuring high quality, compassionate care for everyone in the last few days and hours of life.
One chance to get it right, which incorporates the system-wide response to the report of the independent panel on the LCP, has been placed in the Library, along with the commitment statements made by national organisations. Copies are available to hon. Members from the Vote Office and to noble Lords from the Printed Paper Office.