What is end-of-life care?
"End-of-life care covers the care received by people who are likely to die in the next 12 months, as well as care in the last days and hours of life, and care after death, including bereavement support for families and loved ones.” (Care Quality Commission, 2016).
Background to end-of-life care
Each year, around 500,000 people die in England. Until the End-of-life care strategy was published by the Department of Health in 2008, the profile of end-of-life care within the NHS was relatively low. The implementation of the strategy has supported and encouraged organisations to put a greater focus on patients being given more choice on how and where they die, and providing high-quality care for all people approaching the end of life. In 2012, the Department of Health transferred overall policy responsibility for end-of-life care to NHS England who now lead on the implementation of the End-of-life care strategy.
Further consultation and development has since taken place. In 2015, the report Ambitions for palliative and end-of-life care: a national framework for local action 2015-2020 was launched. It set out six ambitions for care that support a person nearing the end of their life to live as well as possible, and with dignity. This may be for several weeks or months.
The six ambitions for care are:
- each person is seen as an individual
- each person gets fair access to care
- maximising comfort and wellbeing
- care is coordinated
- all staff are prepared to care
- each community is prepared to help.
As well as the ambitions work, the Leadership Alliance for the Care of Dying People (LACDP) set out a new approach to caring for dying people in the report One chance to get it right
. It is based on the needs and wishes of the dying person and those close to them, and ensures that they receive high-quality, focused care in their last few days and hours of life.
One chance to get it right
was developed in response to the independent review of the Liverpool Care Pathway (LCP) More care less pathway
. The pathway was an approach to care in the 1990s, based on the care of the dying person within the hospice setting. The independent review found that while there was evidence of good practice, this was not consistent across the board, and concluded that, in some cases, the LCP had become a tick box protocol, and did not deliver consistent high-quality care for patients, or their loved ones.
The new approach set out in One chance to get it right
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 for each patient. Five priorities for care of the dying person were identified:
- 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 six ambitions, together with the priorities in the One chance to get it right report are underpinned by the NICE guidelines for care of the dying adult published in 2015. All of which underpin the work that NHS Employers is delivering which is to support and encourage trusts to invest in end-of-life care training.