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 legalizing 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. 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.
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,” says Dr. Sarah Wells, medical director for the Marie Curie Hospice West Midlands. “We only get partial funding from the NHS. 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.”
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.”
Improving end-of-life care is essential before legalizing assisted dying, charities urge. The focus should be on ensuring that individuals approaching the end of life receive the right symptom control and support, regardless of whether assisted dying is legalized. The current challenges faced by hospices due to inadequate funding highlight the need for a comprehensive overhaul of the end-of-life care system in the UK. Efforts to shift more healthcare out of hospitals and into the community, where personalized care can be provided, will play a crucial role in improving the quality of care for patients and their families.
