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
If the assisted dying bill does become law, it could save the NHS more than £10m in the first year of operation, rising to almost £60m a year a decade after it comes into force, the bill’s impact assessment has concluded. But it rather feels as if the reports’ authors have stumbled unwittingly into offering plentiful ammunition for those determined to argue that the vulnerable will be bullied into taking their own lives if this legislation passes.
There’s no getting away from it—there’s very little in the government’s legally required report into the impact of the assisted dying bill that is likely to increase support for the controversial measure. The clinical attempt to put a price on dying ensures that. Yet it looks politically inept, regardless of which side of the debate you are on. And while the political ham-fistedness does imply this is a genuinely neutral assessment, it is also undermined by the lingering suggestion that the government has tried to bury bad news.
Publishing an important document about assisted dying at 4pm on Friday afternoon before a bank holiday weekend, a time when most journalistic heads were filled with the aftermath of local election day, may or may not have been deliberately sneaky—but it certainly took the news off the Saturday front pages.
That may not have been the intention, but it is quite important because the impact assessments were always likely to be merely a peg to hang a story on, regardless of their exact content. In this case the devil is most certainly not in the detail.
It is an irony that the mind-numbing work that went into the impact assessment is largely irrelevant. While it finds the National Health Service could save around £59m if the bill goes through, it could have said that it would save £5.9m, or £159m, and it would have made no difference.
The very obvious fact that someone who elects to die early will save the health service money can only bolster the case of those claiming that some will sacrifice themselves rather than “be a burden”. In the words of one commentator, these are “people who may feel pushed toward death not because they want to die, but because society no longer offers them a bearable way to live”.
Reading the 149 pages of the economic assessment is a curious experience, a mismatch of process and passions, like watching someone trying to use the laws of physics to analyse a sonnet or throwing a stick and hoping a cat will give chase. For this deliberate, oh so careful to be neutral exercise is built on so many “mights”, “maybes” and “perhapses” that the whole edifice teeters on the edge of irrelevance.
One feels for the poor civil servants who had not only to attempt to nail jelly to a wall, but were forced first to grade the possible consistency of the wobbling mess, then ask whether it would make a difference if it was lemon-flavoured or raspberry, before measuring the likely height of the wall and listing the exact metallic alloys used in a range of potential nails.
The vain attempt to be precise may be useful for internal consumption by ministers and managers but it does little for the wider philosophical debate.
It is perhaps obvious, in one sense, that the bill will save the government money. The simple sum is 6-2=4. If a person with six months left to live chooses to go through the estimated two-month process of requesting assisted dying and then dies as a result, it will save the NHS what would otherwise be spent on looking after them, as well as not paying a pension or PiP (personal income payment) for the remaining four months they would otherwise have lived. 6-2=4. A simple sum, and perhaps a shocking one. It is all too easy to see this as a callous attempt to put a price on a life.
“The estimated reduced cost from unutilised healthcare ranges from between £919k to £10.3m in Year 1 (which is half a year), to between £5.84m to £59.6m in Year 10.” So even guesswork—sorry, sophisticated calculation—suggests a possible ten-fold difference.
Of course, there would be additional costs for the new programme, which are also calculated with the same meticulous regard for largely unknowable assertions and shifting possibilities. The report maintains “that six health and social care professionals would typically be required for 32 hours in total, to complete the main activities associated with 10 core steps” in applying for voluntary assisted dying.
“The estimated cost of staff time to deliver VAD services in England and Wales ranges from £412k to £1.98m in Year 1 (which is half a year), to between £2.62m and £11.5m in Year 10. This includes adjusted costs for 1.8%.” Training is another cost, as is the plan to have an expert panel replace a High Court judge in assessing and approving or denying applications.
The report ruefully admits: “While some monetised impacts have been provided, these are for the most part uncertain with wide ranges attached. The upper bound of these ranges should not be interpreted as maximum values, nor as representative of the full range of potential costs, given there are significant aspects of the Bill that have not been possible to quantify at this stage.”
That is pretty damning. For a normal impact assessment of a government bill there would be a range of options for ministers to choose from, but because this is a private members’ bill that doesn’t happen. We still don’t know a whole host of important things about what assisted dying would really be like—from details such as which cocktail of drugs will be used to end a life to the huge question of how the service will be provided within the NHS. That is not Kim Leadbeater’s fault—it is the government’s for jealously holding on to the power to make those decisions. When it does decide, there will have to be another impact assessment.
“Consideration would need to be given to the impact of a high level of opt-out on the workability of a national service model (including equity of access), as well as the impact of shifting resources from one area of the health and care system to another.”
There is a second impact assessment, (a mere 34 pages) which isn’t very much more useful. It is designed to work out if the legislation fits with the government’s commitment to equality legislation. While it is mainly concerned with whether people will be denied the right to access assisted dying because of poverty, language barriers or disability, it also states blandly but baldly the case against the bill.
“Evidence suggests that disabled people may be more susceptible to feeling as though they are a burden on those around them. Pressure is not necessarily felt or applied by other people—disabled people may feel subtle pressure due to attitudinal barriers or a lack of alternative appropriate services and support (for example, when accessing palliative care).”
Then it goes on to list the safeguards to ensure that the person applying for an assisted death “has a clear, settled and informed wish to end their own life (and) has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person (clause 1(2))”.
Which is no answer to those who might feel more susceptible to subtle pressure that is “not necessarily felt or applied by other people”. This worries me: personally I find few arguments against the bill even slightly persuasive, but the fear of disabled activists that society as a whole—from doctors and nurses, to social workers and “the public”—will bully people like them into dying early worries me a great deal. While I don’t think it is true, I can’t be sure, and anyway how do you argue against an erroneous but deeply felt perception?
The Labour MP Diane Abbott told the Morning Star the report confirmed “grave and widespread concerns” about many aspects of the bill. “It sets up a mood that the elderly and sick are a drain on society,” she said. “The concerns about misusing the equality impact assessment are well founded, as abuse of process and language have been a characteristic of the Bill’s sponsors from day one.”
It is no surprise that anti-bill groups such as Care Not Killing have leapt on the news. Care Not Killing’s CEO Gordon Macdonald said: “it confirms that changing the law will save money, both health care costs (up to £59.6m) and a reduction in benefit payments (unquantified). [It’s] exactly as we have seen in other jurisdictions which have introduced state assisted killing, placing pressure on vulnerable terminally ill people to end their lives. At a time when we have seen how fragile our cash-strapped health care system is, how the hospice movement has a £150m blackhole in its budget, and when up to one in four Brits who would benefit from palliative care but aren’t currently receiving it, introducing so-called assisted dying would be an incredibly dangerous policy that would put pressure on vulnerable, elderly and disabled people to end their lives prematurely.”
Even the New Statesman has put the boot in. “The government’s adviser on suicide prevention and mental health Professor Louis Appleby described the impact assessment as ‘stripped of moral values’,” it wrote. “Everything is set out in purely economic terms ‘to the penny’, he posted on social media. Perhaps it is not surprising that the document avoids venturing into the ethical or philosophical arguments for and against legal assisted dying; after all the government has stated it is neutral on the policy. But two things are obvious: this impact assessment is a guesstimate and—more worrying to those with reservations—it places blind faith in the claims that the bill contains adequate safeguards to protect the vulnerable.”
Those in favour of the bill have little to grip on to beyond a restatement of broad principles. During Saturday’s Today programme on BBC Radio 4, presenter Simon Jack tried his best to get the bill’s author Kim Leadbeater to deal directly with the argument: “I just want to read you what Baroness Tanni Grey-Thompson, gold-medallist Paralympian, of course, and member of the House of Lords, said. ‘The impact assessment highlights how assisted dying would put disabled and other vulnerable people at grave risk, providing financial incentives to an already overburdened and under-resourced NHS to offer assisted dying as a treatment option.’ What would you say to that?”
Leadbeater replied: “I really welcome the impact assessment, but as you say it’s a very uneasy sort of conversation to have because for me, assisted dying and giving people the choice at the end of their life when they’re facing a terminal illness is about the human cost. It’s not about pounds and pence. But I think the bill that we have before parliament, which will come back on the 16th of May for the report stage, is the most robust piece of legislation in this area, in the world. And that does come with a cost of setting it up, but also we know that there would be savings associated with having this model in place as well. In terms of Tanni’s comments and—and I agree with Tanni on lots and lots of things, but we do disagree on this issue—the criteria for the bill, the eligibility criteria, are extremely strict. You know, the six-month diagnosis, the prognosis, you have to be terminally ill. There are multiple layers of safeguardings built into the bill, including now a multidisciplinary panel of experts. So we are assessing mental capacity, we are checking for coercion at every level of this process to make sure that this is the clear and settled informed wish of the person who is terminally ill. So I think, you know, we’re looking at choice, dignity and bodily autonomy on this really important issue, but also having a very robust piece of legislation, and the impact assessment covers that very well.”
I think she is right—that the safeguards are sufficiently robust to stop a terminally ill disabled person deciding to die simply because they are worried they are a burden. But it is impossible to be certain how people will react to their perceptions of the attitudes of those around them. But that is true today, was true yesterday and will be true if the bill fails next week. Nothing can stop a disabled person killing themselves right now because they feel they are a burden. It is a question of dignity and self-worth. What we need to do is create a society where no one feels like that, rather than deny the choice to those who feel continuing to exist for even another few months is an intolerable burden—not to society or to relatives—but to themselves.
