Blueprint drawn up to achieve ‘unprecedented transformation’ of end-of-life care

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.

Following Parliament’s historic vote last week to legalize assisted dying in England and Wales, a palliative care committee has been established to help improve end-of-life care.

The Guardian has seen details of his ambition for every dying person to receive high-quality medical and emotional support, and understands that former Prime Minister Gordon Brown has backed the plan.

The creation of the committee comes as experts warn that ramping up end-of-life care and offering assisted dying will pose major 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 is subject to what critics say is a cruel postcode lottery. But it is estimated that at least 100,000 people a year miss out on this care, meaning they are denied a dignified death and may suffer avoidable pain, while leaving loved ones in need.

Under the terms of reference of the commission, which is being set up by Labor MP Rachael Maskell, dying people – both children and adults – would receive ongoing ‘holistic’ support for all their needs from the moment they are diagnosed with an incurable disease . .

Health professionals would develop a “plan of care for the patient throughout the end of life, including patient-driven care planning and support for physical, psychological, emotional, social and spiritual well-being,” based on the wishes expressed by the person.

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

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

Such support should be “equitable across the country and proportionate to needs” and the British highlighted its existence through “improved end-of-life literacy for the public,” according to the commission’s mandate. They have been drawn up by Maskell and organizations and clinicians currently providing 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 in favor by 330 to 275 last Friday.

Maskell said: “End of life care is a specialist branch of medicine that has been more or less left to wither. Having the committee will be a way to really ensure that it is properly integrated into healthcare and ensure that it is optimized because 100,000 people are not getting it.”

However, she warned that the committee must ensure that assisted dying is not provided “by a district nurse who is overwhelmed and running from person to person in the community so that they are not able to administer medication at the pace that might be necessary”.

However, experts from the NHS say that vastly expanding the help it provides to people at the end of their lives as a result of the move to people’s right to die will bring a range of challenges. Labor 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.

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

“How much money does assisted death cost? Who will provide it? How is it linked to non-NHS services such as home care and hospice care?

She welcomed the committee as “very timely” and added that if the ambition to provide good end-of-life care to everyone who was eligible was achieved, potentially “hundreds of thousands of people could need it every year”. Such a service could help the government achieve one of its three “major shifts” in healthcare, moving care from hospitals to the community, she added.

Dr. Tim Cooksley, former president of the Society for Acute Medicine, said the lack of end-of-life care “causes harm and suffering to patients and their families every day”. Its patchy nature outside hospitals can deprive patients of the opportunity to die at home, he said.

“Many patients experience predictable decline at the end of life. Unfortunately, many patients who would prefer to die at home are admitted acutely at the end of their lives due to poorly controlled symptoms. This is largely due to insufficient and inadequate community services, and this is where initial investments should be focused,” he said.

Lady Ilora Finlay, a former senior medical leader and outspoken opponent of assisted dying, has been mooted as a possible chair of the committee.

Meanwhile, the British Medical Association – which represents most British doctors – has demanded that assisted dying should be provided by a new dedicated service, separate from the day-to-day work of the NHS, and should not lead to any disruption of existing services. lose their services. their budget to finance this.

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

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