Could legalising assisted dying help improve access to palliative care?

When MSPs last month gave their initial backing to a bill which would legalise assisted dying, many also acknowledged the ongoing failure to provide adequate levels of palliative care for the terminally ill. Despite often being associated with end-of-life care, palliative care – treatment to relieve pain – can sometimes last for months or even years. 

“To those who argue that we should be focused solely on improving palliative care, I would make the point that it is not a case of either/or. We need both,” said Lib Dem Liam McArthur, the MSP who brought forward the assisted dying bill.

“Investment in improving the quality of and access to palliative and hospice care, as well as good social care, is imperative. It will be what the vast majority of dying Scots continue to rely on even after any change in the law,” he said. “But we know there are those who find themselves beyond the reach of palliative care and who are desperate for more choice.”

Labour MSP Monica Lennon, a supporter of the bill, said she agreed with those representing the hospice sector that “nobody should ever feel they have to choose an assisted death because of a real or imagined fear of not receiving the care they need”. She added: “Whether the assisted dying bill proceeds or not, I support calls by Marie Curie Scotland and others for a right to palliative care to be recognised and delivered.” 

MSPs backed McArthur’s bill at stage one, meaning the proposed legislation will undergo parliamentary scrutiny before a final vote later this session. A series of amendments are now expected to be tabled, including from McArthur himself as he seeks to raise the minimum age for the bill’s provisions from 16 to 18. 

Another MSP planning to bring forward an amendment is Conservative Miles Briggs, who hopes to include a right to palliative care in the legislation. Briggs says he first became interested in the issue of palliative care during the campaign to extend free personal care to people under the age of 65 following the successful campaign by Amanda Kopel, whose husband Frank – a former Dundee United player – was diagnosed with dementia at the age of 59.

“People often have to be their own advocates for what they’re entitled to in terms of palliative care,” Briggs says. “I don’t think that should be the case.”

The MSP has recently been consulting on his plans to make palliative care a legal right for people of all ages and will publish an analysis of the responses in the coming days.

“All our respondents highlighted the importance of ensuring equitable access to palliative care,” he says. “It’s not just about people living in rural and island areas – this can be people from more socially deprived backgrounds who are diagnosed with stage four cancer in A&E and there’s very little that can be done for them. It’s about looking at the inequality of access [to palliative care].

“We talk about a ‘cradle to grave’ NHS but that’s not true. That last bit – that pre-death, hospice part – is predominantly delivered by charities.”

Briggs says recent developments such as staff pay claims and a rise in employers’ National Insurance contributions have heaped further pressure on the hospice sector. “There are some huge challenges coming,” he adds. 

The MSP had hoped to include his bill in the Scottish Government’s legislation for a National Care Service before the plans were dramatically scaled back earlier this year. Social care minister Maree Todd effectively scrapped the proposal in a statement to parliament in January after it became clear the NCS no longer commanded parliamentary support beyond the SNP benches.

Briggs’ plan – to include a right to palliative care alongside assisted dying legislation – is not without precedent, having been done as recently as last week in France. 

At present, most palliative care in Scotland is delivered in the community or in people’s homes. In 2023, Hospice UK warned that finances were being “stretched to the brink”, with around two-thirds of hospice income raised through fundraising. Pressure is only expected to grow as the population ages. Research undertaken earlier this year by the Nuffield Trust on behalf of the Marie Curie found that £22bn of public money was spent on people in the final year of their life across the UK in 2022. The report said the spending was “disproportionately” distributed towards hospital care rather than “well-anticipated, coordinated and holistic care in the community”. 

“There are things the Scottish Government can do now to improve palliative care – without legislation,” says Amy Dalrymple, associate director for policy and public affairs at Marie Curie in Scotland. “Whenever an MSP asks a parliamentary question about this, the response from the government has been – for a while – that they are about to publish their palliative care strategy. That strategy was first announced in September 2021. I’m not getting a sense of urgency from the Scottish Government about improving palliative care.”

While Marie Curie has taken a neutral stance on the assisted dying legislation, it does support Briggs’ attempt to make palliative care a right. The charity has two hospices in Scotland – one each in Edinburgh and Glasgow – and also delivers care in people’s homes. Other providers include charities such as St Columba’s and Chas (Children’s Hospices Across Scotland). 

“We have an excellent hospice sector in this country and some of the best palliative care in the world,” says Dalrymple. “But most people who need palliative care don’t need that very specialist level of care. In terms of broad misconceptions, most people who get palliative care in Scotland will actually be getting it from their GP or district nurse or the staff in the care home they live in. It’s only a very few people who need that specialist input.”

Long overlooked amid the many problems facing the NHS, the issue of palliative care has come to the fore amid the ongoing debate around assisted dying, which moved a step closer with the Holyrood vote last month. As long ago as 2008, the public spending watchdog Audit Scotland warned that “good palliative care is not available to everyone who needs it”, noting that there was no national coordinated strategy for its delivery. Last year the Scottish Government began a public consultation on its current strategy, pledging that by 2030 there would be “more equitable access” to palliative care for both adults and children. 

But with the strategy yet to be published and plans for the National Care Service now in disarray, it is the debate around assisted dying which has helped focus minds on the quality of palliative care. Some in the sector have spoken out against making it easier for terminally ill patients to end their own lives. 

After the legislation passed its first hurdle at Holyrood, Hospice UK said the bill would have “significant implications” for hospices should it become law, with many people still not getting the palliative care they need due to “underfunding and uneven services”.

For Briggs, who voted in support of the assisted dying bill, improved funding of palliative care and planning around its use would help take pressure off the health service.

“I think it could help the NHS by better planning where people will get their palliative care and ultimately where they want to die. Most people want to die at home, so it’s about planning what that looks like.”

Briggs says McArthur has told him that he expects a significant number of amendments to be brought forward to his bill. 

“There will be a lot of people maybe bringing wrecking amendments but that’s not my motivation – mine is to use this to improve palliative care and really make the case that the government should be getting the hospice sector on a financial footing which will help the NHS [and] will help meet the increasing demand for services.”

But while the debate around assisted dying has helped shine a light on the issue of palliative care, there are nevertheless concerns that linking the two so explicitly could narrow the focus of what is meant by palliative care, reducing it to just care at the very end of a person’s life.
Dalrymple says that even if an amendment is added to the assisted dying legislation, it will still not be “job done”.

“That won’t stop our campaigning more broadly around palliative care,” she says. “An amendment in the assisted dying bill would have to be very expansively written for it to be job done legislation-wise for Marie Curie. 

“We need to explore what we can do with the assisted dying bill in terms of improving palliative care and what still needs to be done outside that bill. It’s about making sure that should assisted dying happen, it’s not happening in a vacuum that doesn’t realise that palliative care is an important part of the context of someone’s end of life.”