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Blueprint drawn up to deliver ‘unprecedented transformation’ of end of life care | Assisted dying

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MPs, doctors and charities have drawn up a plan to deliver an “unprecedented transformation” to the care of 100,000 people a year in their final stages of life.

after the historic vote in Parliament last week to legalize assisted dying in England and Wales, the Palliative Care Commission has been set up to help improving end-of-life care.

The Guardian has seen details of its ambition to ensure every dying person receives high-quality medical and emotional support and understands former prime minister Gordon Brown has backed the plan.

The creation of the commission comes at a time when experts warn that the increase in end-of-life care and the introduction of assisted dying will pose major challenges for NHS amid uncertainty about 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, meaning they are denied a dignified death and may suffer avoidable pain, leaving their loved ones in the lurch.

According to the mandate of the commission, which is created by Labor Rachel Maskell MP, dying people – both children and adults – will receive ongoing “holistic” support with all their needs from the moment they are diagnosed with a terminal illness.

Healthcare professionals will prepare “a patient’s end-of-life care plan, including patient-led care planning and support for physical, psychological, emotional, social and spiritual well-being”, based on the person’s expressed wishes.

This would include “non-clinical support”, such as help with financial planning and managing their estate, as well as continuing to participate in social activities while they are still able. There will be “support for people to fulfill their lives while receiving end-of-life care”.

Relatives and carers will also be supported in the person’s final weeks and will receive respite care and bereavement support.

Such support must be “equal across the country and fair to need” and Britons must be made aware of its existence through “enhanced end-of-life literacy in the public”, according to the commission’s mandate. They have been produced by Maskell and organizations and practitioners who currently provide end-of-life care – Hospice UK, Marie Curie, Sue Ryder and the Palliative Medicine Association of Great Britain and Ireland.

Wes Streeting, the health secretary, and Brown are among the senior figures who have done so cited the inadequacy of palliative care as the main reason for their opposition to assisted dying, which MPs voted by 330 to 275 last Friday.

Maskell said: “End-of-life care is a special branch of medicine that has kind of been left to wither away. Having the commission will be a way to really make sure it’s properly integrated into health care and make sure it’s optimized because 100,000 people aren’t getting it.”

However, she warned that the commission must ensure that assisted dying is not “delivered by a district nurse who is thrown off her feet, running from person to person in the community, so they are not able to administer drugs at the speed, which may be necessary’.

But NHS experts say the huge expansion in end-of-life support it provides as a result of the move to people’s right to die will pose a number of challenges. Labor MP Kim Leadbeater’s Terminally Ill Adults (End of Life) Bill would 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 .

“The decision by MPs to vote to legalize assisted dying has profound implications for the NHS, raising critical practical questions,” said Thea Stein, chief executive of the Nuffield Trust think tank.

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“How much money will an assisted dying service cost? Who will provide it? How does it relate to non-NHS services such as home care and hospice care?’

Hailing the commission as “very timely”, she added that if the ambition to offer appropriate end-of-life care to everyone eligible for it was realized then potentially “hundreds of thousands of people could need it every year “. Such a service could help the government achieve one of its three “big changes” in health care, moving care from hospitals to the community, she added.

Dr Tim Cooksley, immediate past president of the Society for Acute Medicine, said the shortage of end-of-life care was causing “daily harm and suffering for patients and their families”. Its patchy nature outside hospitals could deprive patients of the chance to die at home, he said.

“Many patients suffer predictable deterioration at the end of life. Unfortunately, many patients who would prefer to die at home end up being admitted at the end of life because of poorly controlled symptoms. This is largely due to insufficient and inadequate public services and this is where the initial investment should be focused,” he said.

Lady Ilora Finlay, a former chief medical officer and vocal opponent of assisted dying, is being mooted as a possible chair of the commission.

Meanwhile, the British Medical Association – which represents most doctors in the UK – has insisted that assisted dying should be provided by a new specialist service which is separate from the day-to-day work of the NHS and should not result in existing services losing any of their budget to do it finance.

“Any future process of assisted dying must be funded through new investment, not by taking money from elsewhere in an already overstretched health service,” said Dr Andrew Green, chair of the BMA’s medical ethics committee.

“We also believe that this should be provided through a separate service and not be part of the standard work of any doctor, whether they are a GP, an oncologist or a palliative care doctor.”

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