Everyone in need of end of life care should have a “named senior clinician” responsible for their care and preferences, according to a report for the government.
It also called for a “national choice offer in end of life care” to be established, backed up by an additional £130m from the next spending review.
This would mean each person who may be in need of end of life care was “offered choices in their care focused on what is important to them”, said the report.
The offer should be made “as soon as is practicable” after it is recognised that the person may die in the foreseeable future, be based on “honest conversations” with healthcare staff that support the person to make informed choices, and be consistently reviewed through conversations with staff.
The report – called What’s important to me: A review of Choice in End of Life Care – offers a blueprint for how greater choice in end of life can be achieved. It was published today by a review board chaired by Claire Henry, chief executive of the National Council for Palliative Care.
To enable the national choice offer, it called for a new right in the NHS Constitution for everyone to be offered choice in the end of life care, and for these choices and preferences to be recorded in a personal plan of care.
Each person in need of end of life care should a named responsible senior clinician who would have overall responsibility for their care and their preferences, said the report. Each person should also be offered a care coordinator who would be their “first point of contact” in relation to their care and their preferences.
“People have told us what they want. Now is the time for action”
It also recommended that 24/7 end of life care for people being cared for outside hospital should be in place across England by 2019 and that the government should implement a clear policy to make access to social care for people at the end of life “fast and free”.
In addition, it said there needed to be “more honest and open” communication about end of life issues, with better support for healthcare professionals and increased awareness among the public.
Ms Henry said her panel was told “time and again” that end of life care could be transformed by “listening and acting upon what people want, in contrast to the enormous sadness, pain and regret that barriers to choice are currently causing”.
“There is a real opportunity to transform end of life care, so that people get control back over their lives and can exercise choice on the things that are important to them, including where they are cared for,” she added.
“That’s why we have recommended that a ‘national choice offer’ is established, setting out what should be offered to each individual who needs end of life care,” she said. “People have told us what they want. Now is the time for action.”
“The next parliament needs to rethink the way care and support is provided to terminally ill people”
The review was commissioned last July by heath minister Norman Lamb. Responding to the review’s report, he said he welcomed the proposals that a “national choice offer” for everyone in need of end of life care should be in place by 2020.
He noted the government would publish a full response to the recommendations “later this year”, after consultation with health and social care organisations.
“In the meantime, I can say that we fully support the review’s vision that every person should receive care in line with their choices and preferences, and we urge local health and care organisations to work together to ensure that this is achieved for as many people as possible,” he said in a written statement.
He added: “As the review rightly notes, many people in England already receive good end of life care, focused on their choices, and I want to pay tribute to everyone involved in this care, both staff and carers.”
Phil McCarvill, head of policy and public affairs in England for Marie Curie, said: “If, by 2020, we want to ensure that choice about care is a reality for all people affected by terminal illness, the next parliament needs to rethink the way care and support is provided to terminally ill people and their families. We need to ensure money is invested in the right way.”
He added: “Too many people die in hospital, simply because they aren’t offered the choice about their care or given the practical support needed to help them make informed decisions, which we think is completely unacceptable.”