MPs, doctors and charities have drawn up a blueprint to deliver an “unprecedented transformation” of care for 100,000 people a year in the final stages of their lives.
After parliament’s historic vote last week to legalise assisted dying in England and Wales, a commission on palliative care has been set up to help improve end of life care.
The Guardian has seen the details of its ambition that every dying person gets high-quality medical and emotional support, and it understands that ex-prime minister Gordon Brown has backed the plan.
The commission’s creation comes as experts warn that ramping up end of life care and starting to offer assisted dying will pose big challenges for the NHS amid uncertainty over where such services will be provided, which staff will be involved and how much it will cost.
Palliative care is now provided by a combination of the NHS, hospices and charities such as Marie Curie but it is subject to what critics say is a cruel postcode lottery. But at least 100,000 people a year are estimated to miss out on such care, which means they are denied a dignified death and can suffer avoidable pain, with loved ones left in distress.
Under the terms of reference of the commission, which is being created by Labour MP Rachael Maskell, dying people – children as well as adults – would receive ongoing “holistic” support with all of their needs from the moment they are diagnosed with an incurable illness.
Health professionals would draw up a “care plan for the patient throughout end of life, including patient-led care planning, and support for physical, psychological, emotional, social and spiritual wellbeing”, based on the person’s expressed wishes.
That would include “nonclinical support”, such as help with financial planning and management of their estate, and also to continue participating in social activities while they still can. There would be “support for people to fulfil their lives during the receipt of end of life care”.
Relatives and carers would also be supported during the person’s last weeks and would receive respite care and bereavement support.
Such support would need to be “equal across the country and equitable to need” and Britons alerted to its existence through “improved end of life literacy for the public”, according to the commission’s terms of reference. They have been drawn up by Maskell and organisations and medics that currently deliver end of life care – Hospice UK, Marie Curie, Sue Ryder and the Association for Palliative Medicine of Great Britain and Ireland.
Wes Streeting, the health secretary, and Brown are among senior figures who have cited the inadequacy of palliative care as a key reason for their opposition to assisted dying, which MPs voted for by 330 to 275 votes last Friday.
Maskell said: “End of life care is a specialty branch of medicine that has been kind of left to wither. Having the commission is going to be a way of really ensuring that it’s properly integrated into healthcare and ensuring that it is optimised because 100,000 people are not getting it.”
However, she warned that the commission needs to ensure that assisted dying is not “delivered by a district nurse who is rushed off their feet, running from person to person in the community, so they’re not able to administer drugs at the rate that perhaps is required”.
However, NHS experts say that hugely expanding the help it gives to people near the end of their lives as a result of the move to people’s right-to-die will pose an array of challenges. Labour MP Kim Leadbeater’s terminally ill adults (end of life) bill will give terminally ill people with less than six months to live the right to end their lives, as long as two doctors and a high court judge agree.
“MPs’ decision to vote to legalise assisted dying has profound implications for the NHS, raising critical practical questions,” said Thea Stein, the chief executive of the Nuffield Trust thinktank.
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“How much money will an assisted dying service cost? Who will provide it? How is it connected to non-NHS services like home care and hospice care?”
Welcoming the commission as “very timely”, she added that if the ambition of offering proper end of life care to everyone who qualified for it was realised, then potentially “hundreds of thousands of people might need it every year”. Such a service could help the government achieve one of its three “big shifts” in health, moving care from hospitals into the community, she added.
Dr Tim Cooksley, the immediate past president of the Society for Acute Medicine, said that the paucity of end of life care causes “harm and distress on a daily basis for patients and their relatives”. Its patchy nature outside hospitals can deny patients the chance to die at home, he said.
“Many patients suffer predictable deterioration at the end of life. Sadly many patients who would prefer to die at home end up being admitted acutely at the end of life due to poorly controlled symptoms. This is largely due to insufficient and inadequate community services, and this is where initial investment needs to be focused”, he said.
Lady Ilora Finlay, a former senior medical leader and vocal opponent of assisted dying, has been mooted as a possible chair of the commission.
Meanwhile, the British Medical Association – which represents most UK doctors – has demanded that assisted dying should be provided by a new dedicated service, which is separate to the NHS’s day-to-day work, and should not lead to existing services losing any of their budget to fund it.
“Any future assisted dying process must be funded through new investment and not by taking any money from elsewhere in the health service, which is already overstretched”, said Dr Andrew Green, the chair of the BMA’s medical ethics committee.
“We also believe that it should be provided through a separate service, and not be part of any doctor’s standard work, whether this be a GP, oncologist or palliative care doctor”.