England’s palliative care ‘postcode lottery’ casts shadow over assisted dying debate

As MPs prepare to vote on rewriting the law on assisted dying, palliative care experts are warning that existing end-of-life services in England are already under significant strain. 

Critics of changing the law are concerned that it will reduce the incentive to provide better patient care, while those in favour believe that placing a spotlight on the issue could increase pressure on the government and NHS to improve support.

On Friday, MPs will vote for the first time in almost a decade on whether to legalise assisted dying in England and Wales, with politicians, including the cabinet, split over the matter.

“There is a complete lack of join up between the different services supporting dying people and the result of that is that people don’t get the timely care they need in the place they want,” said Sam Royston, executive director of policy and research at the charity Marie Curie, which supports people with terminal illnesses. 

Whether a patient receives specialist palliative care can depend on whether they have a prognosis and a referral, or if a specialist service is even available in the area. Royston said the “postcode lottery” over treatment confronting patients was down to “a lack of consistency” in services.

“It would be intolerable if someone chose an assisted death because they were unable to choose to access palliative and end-of-life care. If we don’t improve palliative care that could be a risk — with some people feeling they don’t have a real choice in their end of life decisions,” he said.

He noted there were obstacles around data sharing between different services, but said the “main challenge is that there is no clear NHS leadership, or national strategy for palliative care”.

Britain’s national health service was built more than 75 years ago on the promise of providing the public with free-at-the-point-of-use healthcare from cradle to grave.

But a review conducted last year by the patient safety watchdog, the Healthcare Safety Investigation Branch, found that end-of-life care offered by England’s NHS is “variable and inequitable” and “often falls below expectations”.  

The body also raised concerns over the “limitations of the delivery of palliative and end-of-life care” in certain parts of the country.

On average, 42 per cent of deaths occur in a hospital, 28 per cent at home, 21 per cent in a care home and 5 per cent in a hospice, according to official data for the first 10 months of 2024. 

However, people in London are far more likely to die in a hospital than those living across the rest of the south of England, which has the highest proportion of people passing away in care homes.

Opponents of the new bill have raised ethical concerns over people opting for an assisted death while access to existing end-of-life services is so variable. These include health secretary Wes Streeting — who has warned that a change in the law would have “resource implications” for the NHS — as well as Liberal Democrat leader Sir Ed Davey.

Former prime minister Gordon Brown has also registered his opposition to the bill, arguing that efforts instead be channelled into a commission into end-of-life care.

Labour MP Kim Leadbeater, who proposed the bill, said on Wednesday that “we have a duty to change things” for terminally ill people who want to end their lives.

She said it was “disappointing” that an amendment had been put forward to try to block the second reading of the bill because of inadequate opportunities for scrutiny, adding: “The public clearly want this debate to take place and I think we have got a responsibility as parliamentarians to make sure that debate does take place.” 

But the delivery of palliative care — a treatment that can be provided at any stage of serious illness — and end-of-life care is often complicated. It can involve separate NHS services, including GPs, district nurses and hospitals, as well as independently funded services such as hospices. 

While most support in the final months of life comes through the NHS, specialist palliative care generally comes from outside the service.

Despite providing care to about 300,000 people each year, on average, independent hospice services in England receive just a third of their overall funding from the government.

Hospices typically exist on precarious charitable funding despite the key role they play in supporting NHS patients, compared with other countries with assisted dying laws, where they are publicly funded.

There is a legal requirement for integrated care boards (ICBs), which allocate NHS resources to local health services, to commission palliative and end-of-life care in their areas.

However, a report published by MPs on the all-party parliamentary group on hospice and end of life care in January found ICB commissioning of hospice services is “currently not fit for purpose”. 

As a result, MPs said the “services hospices provide for dying people and their families and the value they provide to the health system is at risk”. ICB adult hospice spending per head of population ranged from £10.33 to just 23p per head of population, the report found.

The debate over end-of-life care comes as the number of annual deaths is expected to rise by a third during the next 50 years, from 665,000 in 2023 to 875,000 in 2073, according to the Office for National Statistics. 

A growing share of deaths will be among elderly people, with the number for those aged 75 and over expected to grow almost twice as fast as the headline figure, rising 60 per cent by 2073.

“It shouldn’t be this difficult for local areas to look at what’s provided and assess where there are gaps,” said Sarah Scobie, deputy director of research at the Nuffield Trust, a think-tank. “As well as bring organisations together to provide a more co-ordinated set of services to support people at the end of life.”