Palliative care gets spotlight in assisted dying report

The House of Commons Health and Social Care Committee this week published its report into assisted dying and assisted suicide.

“I can see the link between palliative care and assisted dying, but they are separate [issues]”

Jan Noble

The report, based on evidence taken from doctors, nurses, family members who have opted for assisted dying and other experts, aimed to inform the UK Parliament, should a vote on the legality of it be called in the near future.

While the report did not take a stance on whether assisted dying should be legalised, it made a series of recommendations and observations about the current law and about palliative care in general.

It acknowledged that the current state of the law in the UK was “unclear” for clinicians, and that as a result they were being put at risk and having to make case-by-case decisions about patients who decide to seek assisted death abroad.

As well as this, the report said the law should be clarified because of the likelihood that a crown dependency – Jersey – was likely to legalise the practice soon.

The report also said that, in the view of experts who submitted evidence, not enough patients were being given the opportunity to speak about death and palliative care options and that palliative care was in need of improvement.

Evidence sessions included debate around whether palliative care would be sidelined if assisted dying was legalised.

However, while this issue, in the committee’s view, was overshadowed by the “world leading” nature of UK palliative care, it acknowledged the need to better resource these services.

It pointed, in particular, to mental health support for palliative patients and for better funding for hospices.

Jan Noble, registered nurse and director of quality and innovation at St Christopher’s Hospice in London, said the palliative care community welcomed the report and the fact end of life was being spoken about more by policymakers.

“The conversation needed to start, and go more into the public domain,” she told Nursing Times.

“It’s important because we have to have clarity for staff, and it’s a complex subject. But it’s not a new subject.

“I’ve been in palliative care for 40 years, we’re used to having complex and difficult conversations with people about their wishes, as they’re approaching end of life. But we need to ensure staff have the right training.”

Jan Noble

Ms Noble said she was pleased the committee’s report was bringing the difficulties palliative care was facing into the public eye.

The report referred to the fact that, while the UK is a “world leader in palliative and end-of-life care”, access to it was “patchy”.

“The government must ensure universal coverage of palliative and end-of-life services, including hospice care at home,” the report read.

“It is important that everyone is able to choose what type of support they need at the end of their life, and that their advanced care plan is honoured where possible.”

It later added: “We understand that the flexible nature of the current funding model for hospices is valued by some hospice leaders, and rather than suggesting that the government funds 100% of hospice operations, we call on the government to commit to an uplift of funding to guarantee that support will be provided to any hospices which require funding assistance.”

Ms Noble said she was glad for the increased attention hospices were getting. However, she was keen to warn against the conversations around issues in palliative, particularly hospice, care and assisted dying becoming conflated.

“Both conversations need to happen,” she said. “It’s fundamental that the state of hospices fighting for funding, not knowing from month to month whether we’ll get an uplift for next year, [is addressed].

“Palliative care should be accessible to everyone; [St Christopher’s] developed a new strategy last year focusing on inequalities and we’re committed to tackling this.

“I can see the link between palliative care and assisted dying, but they are separate [issues].

“We need better resources, better profiling and the assisted dying debate has brought hospices into the limelight – that’s a good thing as long as the two aren’t put together.”

Ms Noble further said that she hoped the report would open up a discussion of “death literacy”, referring to people’s knowledge of death and removing the taboo around it.

She finished: “I hope as the debate gets opened up further that it isn’t just stuck with government or just doctors.

“We need to speak to people vulnerable groups, people with life-limiting illnesses.

“All people should have the opportunity to speak. Those people’s voices need to be heard.”

Toby Porter, chief executive of Hospice UK, shared the enthusiasm for the report expressed by St Christopher’s.

He, too, welcomed in particular the report’s role in including palliative care in the discussion around what to do next with assisted dying.

“This is a complex and emotive topic, with deeply held and well-articulated views on all sides of the debate,” he said.

“The tens of thousands of people who work and volunteer every day in the UK’s 200-plus hospices likely see and think more closely about death and dying than any other constituency in the UK, and it will remain vital that these experiences and observations are considered in the societal discussions.”

The chief executive added that the report showed the need for the government to make sure hospice, and other palliative care settings, were “strengthened”.

He said: “We agree with the report’s finding that access to palliative and end-of-life services is currently patchy, uneven and inequitable across different communities of the UK.

“Hospice UK believes that universal appropriate and adequate palliative care for all must be the priority regardless of any decision on changing the law.”

A vote on assisted dying has yet to be called, and the UK Government has maintained its neutral stance on the matter.

It told the committee: “The government’s position remains that any change to the law in relation to assisted dying is a matter for parliament to decide and an issue of conscience for individual parliamentarians rather than one for government policy.”