This is Prospect’s rolling coverage of the assisted dying debate. This page will be updated with the latest from our correspondent, Mark Mardell. Read the rest of our coverage here
17th January
However the debate on the details on the assisted dying bill turns out, one thing seems certain to continue: an ever-increasing chorus of calls to spend more taxpayer money on hospices. Next Wednesday, the Palliative Care commission set up by the York MP Rachael Maskell will meet for the first time. The chair, Professor Mike Richards, has called for written submissions from “doctors, hospitals, hospices, charities, disability rights organisations, and those with experience of palliative and end of life care, as they look at the significant challenges facing the sector, including financial difficulties, shortfalls in provision and access and problems in recruiting and retaining staff.”
You do not have to have a fully functioning crystal ball, or be overly cynical, to predict what their main ask and the committee’s main recommendation will be: give us more money.
If this wasn’t already obvious, the demand shone out like a beacon from this week’s Commons debate on palliative care. It features many tributes by MPs to wonderful hospices in their patch, with many emotional stories. For all their diversity, a golden thread held them together: they were all short of money.
The debate was sponsored by Paul Kohler, the Liberal Democrat MP for Wimbledon, who opened with a very personal story. “While as parliamentarians we readily focus on what makes a good life, we rarely consider what makes a good death. It is possible to have a good death, as I saw with my mother, who passed away in comfort at the beautiful Arthur Rank hospice in Cambridge, and with my father, who died in the exceptional palliative care facility at Bellevue hospital in New York. As a family, we remember those times as sad, but cathartic, with moments of laughter as well as tears, as when my father—somewhat confused towards the end of life, but with a glint still in his eye—asked, as I sat next to him stroking his forehead, whether I was a lady friend.”
Kim Leadbeater intervened to say: “Does the honourable member agree that the renewed focus on the hospice and palliative care sector is extremely welcome and overdue? Does he agree that the extra £100m of investment shows how seriously this government are taking the issue, showing that people approaching the end of life are fully supported in whatever choices they make?”
Kohler thanked her and the government on behalf of the hospice movement, but added: “These are only short-term fixes and fail to provide the long-term funding and certainty critical to securing the future of the hospice movement.”
The consistent complaint is the £100m is for capital projects, not running costs. As one MP put it, that means hospices can re-tarmac the car park while having to sack nurses. So what would Kohler suggest?
“To address these problems, the government needs to introduce a consistent, reliable funding mechanism that reflects the rising costs of care. Hospices consequently need to be included within the NHS’s much-anticipated 10-year health plan. In parallel, staffing needs must be addressed in the next NHS long-term workforce plan.”
All of which, of course, means more money. And all these MPs are right. Whether or not the NHS is broken, whether or not it needs far-reaching reform, it very clearly is cash starved. In that, palliative care is no different to other parts of the health service. But the Wimbledon MP made clear where it is different. “Hospices provide a variety of services in addition to palliative care, including emotional, psychological and spiritual support, as well as physio and occupational therapy, practical support, complementary therapies, respite care and bereavement services. Much of that is beyond the clinical, and not something that the NHS can be expected, nor can afford, to provide. That is why no one I spoke to in the hospice movement thought that hospices should be subsumed within the NHS.”
That is a nub of a problem—they want money that otherwise would go to the NHS without being part of the NHS.
The shadow health minister, Dr Luke Evans, raised several critical points: “With the debate about assisted dying and the concerns expressed by the health secretary about provision, however, my... question to the government is: what assessment have they made of the impact of assisted dying on provision? I believe the secretary of state was commissioning work on this, so when will the results be released?”
“On the specific questions from the sector, it would be remiss of me not to raise the concerns about Labour’s budget and its impact on the palliative care sector. The employer national insurance contribution increases are a tax on charities—fact. Charities are not covered by the NHS exemption. Hospices are charities, so they are being taxed—fact. GPs provide palliative care and support. They are not covered by the NHS exemption, so they are being taxed—fact.”
The social care minister, Stephen Kinnock, had something to say about that. “I ask opposition members from all parties who luxuriate in criticising the means by which we have raised the record funding for hospices what they would do,” he challenged. “How would they have raised the £22bn that our autumn budget delivered? Which taxes would they raise? Which public services would they cut? Answer comes there none. The government recognise the need to protect the smallest businesses and charities, such as hospices, which is why we have more than doubled the employment allowance to £10,500, meaning that more than half of businesses and charities with ENIC liabilities either gain or see no change next year.
“While the debate is not about assisted dying, I want to say a word on the matter. My honourable friend the member for Spen Valley [Kim Leadbeater] put forward her bill, and it has received its second reading. It is vital that our approach to end-of-life care and patient choice is holistic and driven by an in-depth understanding of patient need.”
Note that he didn’t answer the important question about an impact assessment. It all comes back to money. Not just money but how you want to spend it. As Nye Bevan once said, “The language of priorities is the religion of socialism.”
15th January
Kim Leadbeater’s bill, which may well dominate debate in Westminster over the next few months, gets its first outing today. The justice committee is meeting to grill the attorney general Richard Hermer and the solicitor general Lucy Rigby about the legal implications of assisted dying.
The actual committee on the Terminally Ill Adults (End of Life) Bill will meet for the first time next Tuesday, 21st January.
But that’s only to formally finalise when and how often it will meet in the future. The plan at the moment is to begin line-by-line scrutiny on 4th February, so right now campaign groups are sounding out MPs to see if they’ll back their favoured changes.
Only committee members can put forward amendments. First off the blocks was Ashford MP Sojan Joseph, who was a mental health nurse until his election last year. He wants a psychiatrist to be one of the doctors required to sanction a request for assisted dying. He told Nursing Times: “you’re more likely to feel depressed when you hear that you only have six months to live... and your judgement can be impacted by that sort of low feeling. Specific mental health professionals’ involvement to assess a patient’s decision to go ahead with assisted dying should be based on their mental state as well, more than just capacity.”
Joseph voted against the bill in November but has made it clear he could change his mind if the amendment is passed.
I’m told other MPs are being sounded out to see if they would support a definition of terminal illness that doesn’t include a time limit, as in the Scottish bill, and dropping the involvement of a High Court judge in favour of a panel of experts, as happens in Spain. Some want clarification about who exactly is exempt from prosecution under the Suicide Act. Clearly, the bill creates exemptions for medical professionals but doesn’t cover, for instance, someone driving a person to an appointment. This loophole could lead to legal uncertainties, such as inheritance disputes if family members are accused of a crime despite following guidance. Some issues will be bitterly fought over, such as what doctors can and can’t say to patients. Opponents want them prevented from promoting assisted dying; those in favour of the bill regard this as a “gagging clause”.
Unusually for a private members’ bill, the committee has been given the power to call for “persons, papers and records”, and campaign groups are chivvying their supporters to write in: anyone can do so, although parliament’s own very helpful website suggests people should “concentrate on issues where you have a special interest or expertise, and factual information of which you would like the Committee to be aware.”
One Catholic news outlet helpfully publishes Care Not Killing’s handy guide to objecting to the whole thing without saying you’re objecting to the whole thing: “This is not a consultation on the overarching principles of the debate...
“Our briefing may give you a steer, but must not be reproduced verbatim: your submission must be an expression of your own concerns about the workability of the Bill.”
“Your personal or professional experience may make you well placed to explain why particular provisions in the Bill are inadequate, unworkable, or not properly thought through.”
Among those lobbying MPs is the charity Humanists UK, which argues on its website that “passing the Bill will give dying adults the choice and dignity of a compassionate death within the law.” The group’s director of Public Affairs and Policy, Richy Thompson, told me what its aim was: “We will be seeking to ensure that the bill that emerges from committee stages is as good as it can be in terms of eligibility process and safeguards. That means both guarding against amendments that might harm or restrict access in ways that are unhelpful for those who genuinely need an assisted death, but also looking at what amendments could be brought to strengthen the bill in all of those different areas.”
Over the coming days I’ll be keeping an eye on what amendments are proposed and what they would mean for the bill.
