The National Council for Palliative has given a broad welcome to the Government’s response to What’s Important to Me: a review of choice in end of life care (“the Choice Review”), but has raised concerns about some of the details.
The Choice Review was carried out by an independent board of experts chaired by Claire Henry MBE, CEO of the National Council for Palliative Care. It was commissioned by the coalition government in 2014 with the remit to provide advice to Government on improving the quality and experience of care for adults at the end of life, their carers and others who are important to them by expanding choice”. Its report What’s Important to me was published in February 2015 and made comprehensive, costed recommendations all intended to improve the experience of dying people and their families by delivering personal choice in end of life care.
The Government’s response sets out a “new national commitment for end of life care” based on “all dying people, without exception, [receiving] high quality care tailored to their needs and wishes.” Key recommendations accepted by the Government include the need for honest discussions leading to informed choices; personalised care plans that can be stored online for easy access by all care professionals; a known point of contact for help and advice 24/7; and involving families and carers where appropriate in conversations and decisions about end of life care.
Simon Chapman, Director of Policy and External Affairs for the National Council for Palliative Care was also a member of the independent board. He says “This provides a framework that, if implemented across the whole of the health and care system, will make a real difference to the care that people at the end of life and their families receive.
“But the hard work starts now in making sure that the government’s new national commitment for end of life care becomes the reality. We are concerned that, despite the recommendations of the Choice Review, there is no dedicated funding to support this. It is therefore all the more important that end of life care genuinely becomes a core priority for the health and care system, so that we bring an end to the inconsistency and uncertainty that so many people experience. We would also have liked to have seen commitments to support bereaved people as well as stronger commitments to raise public awareness and change behaviour in relation to dying death and bereavement, such as the work of the Dying Matters coalition.”
Lesley Goodburn lost her husband Seth soon after he was diagnosed with pancreatic cancer, and has since worked with the NCPC to turn his story into an acclaimed play, Homeward Bound. Lesley says “When your husband is dying you want clinicians, nurses and support staff to work with you achieve your husband’s wishes, and you want to be able to spend your precious remaining time loving and comforting your husband. When Seth was dying we were both adrift in the medicalised NHS system. We were getting the right medical care but the emotional, psychological and compassionate support that we both needed got lost in the sheer weight of NHS process and procedures. Seth didn’t achieve his wish to die at home, even though we had both had the conversations about death and dying and we were both clear on what we wanted to achieve. All end of life care must be rooted in the wishes of the person who is dying: we have just one chance to get things right and we have to do this for everyone every time.”
Ian Leech, a campaigner for better end of life care following the death of his daughter and member of the board that wrote What’s Important To Me, said “I think from a service user point of view I come at it from a different angle than most: Melissa’s care was very good. A lot of suggestions around improving end of life care and bereavement support that I read in the report were an integral part of Mel’s care and that was eight years ago. What concerns me is that eight years down the line we are still having to have these conversations about how we put things right. For me, this is about people. We were fortunate that we had good professional people around us. When caring for our daughter at end of life, we shouldn’t have had to rely on being fortunate.
”What we have now is a government commitment to improve the quality of end of life care and bereavement support to a level not seen before. We, and they, need to ensure they make good on their word, because I don’t want to be sat here in another eight years’ time looking back on a report of failed promises.”