A new approach to caring for dying people based on the needs and wishes of the person and those close to them has been launched today and welcomed by Care and Support Minister Norman Lamb.
It takes the form of five new Priorities for Care which succeed the Liverpool Care Pathway (LCP) as the new basis for caring for someone at the end of their life. The new approach focusses on giving compassionate care and is a move away from previous processes and protocols. It recognises that in many cases, enabling the individual to plan for death should start well before a person reaches the end of their life and should be an integral part of personalised and proactive care.
The new Priorities for Care mean that:
The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.
Sensitive communication takes place between staff and the person who is dying and those important to them.
The dying person, and those identified as important to them, are involved in decisions about treatment and care.
The people important to the dying person are listened to and their needs are respected.
Care is tailored to the individual and delivered with compassion – with an individual care plan in place. This priority includes the fact that a person must be supported to eat and drink as long as they wish to do so, and their comfort and dignity prioritised.
The aim is to promote a stronger foundation for good care and a culture of compassion in the NHS and social care. The priorities put people and their families at the centre of decisions about treatment.
The new priorities have been created by a coalition of 21 organisations known as the Leadership Alliance for the Care of Dying People (LACDP). The priorities form part of the Alliance’s overall response, called ‘One Chance to Get it Right’, to an independent review of the Liverpool Care Pathway led by Baroness Neuberger.
Care and Support Minister Norman Lamb, said:
The new priorities will mean that care is focused on dying people’s wishes – rather than processes. This will make sure that their voices, and those of their families, are heard at all times.
The poor care given to some people and their families on the Liverpool Care Pathway must never happen again. There are many shining examples in the NHS of excellent end of life care, and I am committed to making sure that care in the last few days and hours of life is tailored to the needs of each individual.
It’s also important that, where possible, planning for dying should start well before the last few days and hours of someone’s life, where they want to have those discussions.
We need to change the way that the NHS and society approaches end of life care and I’d like to thank Alliance members for their commitment to making this happen.
Jane Cummings, Chief Nursing Officer for England, said:
The priorities for care announced today promote a culture of compassion that puts people and their families at the centre of decisions about their treatment and care. This is something I am passionate about. They also underline the importance of sensitive and effective communication between staff and the person who is dying and those close to them.
As Chief Nursing Officer, I call on individuals who deliver services for people in the last few days and hours of life and their families to make the Priorities for Care part of their practice and to support colleagues in doing the same. I will be writing out to all nurses to inform them and raise awareness of the report of the LACDP.
The Alliance response also sets out how compassionate care for all those approaching the end of their lives should be delivered. Each organisation in the Alliance has set out what it will do to support this.
Alliance members will now work to embed the priorities into every aspect of their work on end of life care from initial training through to inspection. The Alliance has also called on members of the public to participate in a national conversation about dying, to raise awareness and understanding of this important part of life.
The Priorities for Care follow an independent review of the LCP carried out in 2013 by a panel led by Baroness Julia Neuberger. The review found that where the LCP was used well, it delivered good care, but also found examples of poor care. Issues included a lack of tailored, personalised care and in some cases, the LCP became regarded as a tick box exercise. In many cases relatives and their carers did not feel they were involved in discussions about the care plan. There were also cases of food and liquids unacceptably withheld. As a result, the review panel recommended that the LCP should be phased out.
The Panel will continue to have a role in providing independent advice to Ministers about implementation of the commitments in the Alliance response. The Panel’s views will inform a Government report to be published in 2015, which will set out progress on this.
Baroness Neuberger said on behalf of the review panel:
We welcome this response to our review recommendations and its wide range of commitments aimed at improving care of the dying. There is indeed only one chance to get it right, and in view of the importance of good quality end of life care for everyone, irrespective of age or setting, we have accepted Norman Lamb’s invitation to continue as a panel and will monitor progress against the commitments until July 2015.
Our review exposed some distressing instances of lack of high quality care and we are indebted to those members of the public, as well as health and care staff, who told us about their experiences of the Liverpool Care Pathway. There needs to be in the very near future an explanation, in terms that everyone can understand, of what care they and those close to them have a right to receive under the new arrangements. Without this, there will be continued suspicions of malpractice and lack of care which may not be appropriate.
When the Review was published last year, the Minister for Care and Support announced that people who have a complaint – even where a complaint had already been pursued – about the care given to a dying patient on the Liverpool Care Pathway should have access to an independent assessment of their case should they want it. That message is reinforced today.
The Government strongly agrees with the conclusions of the Clwyd-Hart Review of Complaints in the NHS, which reported in October 2013, that complaints amounting to a serious or untoward incident warrant independent local investigation. The Government wants to see all hospitals using their statutory powers to offer this to patients
The Leadership Alliance for the Care of Dying People (LACDP/the Alliance), was formed to provide a focus for responding to the review panel’s report and consists of 21 organisations including those statutory organisations to which the panel addressed recommendations, as well as representatives from the voluntary sector, who were invited to join the Alliance to develop, support and contribute to its work. The work of the Alliance has now concluded with the publications today.
The documents published today are:
One Chance to Get it Right: improving people’s experience of care in the last few days and hours of life (the system-wide response to the Neuberger Report).
Core commitments from the 21 organisations that made up the LACDP.
A summary of engagement that the Alliance carried out on proposed “outcomes and guiding principles”, which have been developed into the Priorities for Care.
The support materials for health and care staff are available on the NHS Improving Quality website here (www.nhsiq.nhs.uk/endoflifecare)
Key commitments from Alliance members include:
The Department of Health will continue to measure progress on improving end of life care, including through looking at the outcomes of annual surveys of bereaved carers’ views on the quality of care given to their relatives in the last three months of life. It will use its assessments to ensure that those bodies which are accountable and report to the Department continue to work towards improving care for people in the last few days and hours of life.
The CQC will include inspection of end of life care in all acute hospital inspections wherever it is delivered within the hospital, and include consideration of end of life care in its new inspection approach in the other sectors they regulate.
The GMC will deliver a programme of activities to raise awareness of its ethical guidance on end of life care. It will write a joint letter with the Medical Schools Council to all UK medical school Deans to emphasise the importance of ensuring the curricula they set properly prepare students to deliver care for people who are coming towards the end of their life.
The Nursing and Midwifery Council will ensure the five Priorities for Care of the Dying Person are reflected in the NMC Code ‘Standards of conduct, performance and ethics for nurses and midwives’ and in any relevant underpinning standards and guidance. The Council is reviewing the Code and will publish a revised version in December 2014. It will ensure the revised version of the Code will give enhanced priority to matters such as hydration, nutrition, communication and decision-making.
NHS England will make sure that the requirements for the implementation of the Priorities for Care are in place across the services for which NHS England has commissioning responsibility. It will work with and provide support to clinical commissioning groups as they commission high quality services for people at the end of their lives, including the commissioning of specialist palliative care.
As one of the voluntary sector contributors, Marie Curie will share ways to improve the experiences of terminally ill people and their families, including support for families after the death, whether in the community, hospice or hospital; and over the next five years, double their funding of research, including into better symptom management and improving the experience for Black, Asian, Minority Ethnic (BAME) groups and other groups who are less likely to be able to access specialist palliative care; as well as sharing their know-how of what works and highlighting new ways of delivering care.
Membership of the LACDP
Dr Bee Wee, National Clinical Director for End of Life Care at NHS England
Care Quality Commission (CQC)
College of Health Care Chaplains (CHCC)
Department of Health (DH)
General Medical Council (GMC)
General Pharmaceutical Council
Health and Care Professions Council (HCPC)
Health Education England (HEE)
Macmillan Cancer Support (Macmillan Cancer Support is also representing the Richmond Group of charities.)
Marie Curie Cancer Care. (Marie Curie is also representing Help the Hospices and the National Council for Palliative Care)
NHS Improving Quality (NHS IQ)
NHS Trust Development Authority (NTDA)
NICE (National Institute for Health and Care Excellence)
National Institute for Health Research (NIHR)
Nursing and Midwifery Council (NMC)
Public Health England (PHE)
Royal College of GPs (RCGP)
Royal College of Nursing (RCN)
Royal College of Physicians (RCP)
Sue Ryder (Sue Ryder is also representing the National Care Forum (NCF) and the Voluntary Organisations Disability Group)