End-of-life care must be fixed before any assisted dying legislation, charities say
Several charities have taken a neutral stance on assisted dying but warn that end-of-life care is already under significant stress.
Wednesday 16 October 2024 16:56, UK
Three and a half years ago, Tim Daly was given just a few months to live. Born with learning disabilities, he later developed cancer, which kept returning.
Despite being very sick, Tim can still live at home with his mum Valerie, because of support from his palliative care nurse Phoebe Mooney.
"It's really sad to see him deteriorate," Phoebe says during a visit to Tim.
"When I first started seeing him he was independently mobile in his wheelchair. He would take lots of videos. He'd be super, super chatty."
It is clear Tim and Phoebe share a special bond, but working in such an emotionally demanding role can be challenging.
"I'm not going to lie, I do cry quite a lot at work," Phoebe says. "Particularly when things don't go so well, which they don't at times."
Tim's mother Valerie Daly is 82 and says she wouldn't be able to keep Tim at home without the support she gets from St Christopher's Hospice in Sydenham, southeast London, where Phoebe works.
"I couldn't do this without them," she says. "It's just knowing that there's somebody there. Somebody who cares. Somebody who knows Tim."
The support Valerie and Tim get is far from guaranteed across the UK.
As MPs consider legalising assisted dying, with a bill being introduced to parliament today, the quality of the country's end-of-life care is being questioned.
"It's really important we're talking about funding for hospices at the same time," says Jan Noble, the director of quality and innovation at St Christopher's.
"Because people need to know that they're going to get the right symptom control and support if they are approaching the end of life. And actually it's not all about assisted dying.
"People are fearful because at the moment hospices throughout the country haven't got the adequate funding, which means care can be a postcode lottery."
Attempt to change law will be major battle
Kim Leadbeater's bill to legalise assisted dying might enjoy public support. The polls suggest it does. And she might have MP support in the Commons, but only just.
So to introduce one of the most contentious bills presented to parliament possibly since the Abortion Act of 1967, she knows it will be a major battle to get it passed into law.
So she has sought to allay some of the most deep-seated concerns. Chiefly, safeguarding measures to ensure the most vulnerable are protected.
Her assurance is that two doctors and a judge must all agree that a dying patient would benefit from an assisted death.
Secondly, opponents are worried that the criteria will be extended to other groups including children and the mentally ill. Again, Ms Leadbeater is robust in insisting her assisted dying law will only apply to terminally ill adults.
There are also concerns around the time limits. Will it be patients who have 12 months left to live or six months? She tells me this is still open to debate. She is still gathering evidence and listening to arguments for and against.
The problem for her is that, despite assurances around safeguarding, opponents will always put forward the slippery slope argument. This is when it starts with one group, i.e. the terminally ill, and then perhaps through legal challenges, other cohorts - the mentally ill, for example - will be included. They will point to what's happened elsewhere: Canada is presently struggling with its assisted dying policy.
This might be the most "progressive" government we have had in some time but we might not be ready to allow one of the greatest social changes ever seen in the country.
St Christopher's Hospice neither supports nor opposes a change in the law, but the hospice sector is a strong voice in the debate.
Hospices rely on charity to survive, with the government providing only around a third of their funding.
The sector has concerns about whether the health system could cope with the additional pressure that assisted dying would bring.
"While it's not for us to take a view either way, what we would say is that this is a very fundamental change to consider introducing into a system which is already under really significant stress," says Charlie King, deputy director of external affairs at Hospice UK.
"We've got hospices who are cutting back their services already, making frontline staff redundant, because they're no longer able to fund those services.
"Whether or not assisted dying is introduced by this government, we must fix the end-of-life care system in the UK," he said.
"This government has inherited huge challenges in the hospice sector, as well as a £22bn black hole in the public finances, so these problems will take time to fix," a spokesperson for the Department of Health and Social Care said.
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"Whilst the majority of palliative and end-of-life care is provided by the NHS, we recognise the vital role voluntary organisations including hospices play in providing support to people at end of life and their families.
"We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families receive personalised care in the most appropriate setting, and hospices will have a big role to play in that shift."
Lynda Browne, 59, has experienced the best and worst of end-of-life care.
Her mother died peacefully and comfortably at a Marie Curie Hospice, but her aunt Mary chose to die at home and Lynda was devastated by the lack of care she received.
"We had to buy her incontinence pads, we had to buy different creams because the deliveries weren't regular or there was nothing available or you couldn't get through," she says.
"We had to chase everyone for everything and it's just so tiring all the time having to fight."
It's a problem palliative care doctors say needs to be urgently addressed.
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"We only get partial funding from the NHS," says Dr Sarah Wells, medical director for the Marie Curie Hospice West Midlands.
"We're having to rely on fun runs and bake sales and our charity shops to raise money to provide great end-of-life care for people."
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Marie Curie, like St Christopher's and Hospice UK, has a neutral position on assisted dying.
"We need to be talking about death, dying and bereavement," says Dr Wells. "What we're not neutral on is the need for sustainable funding."