A partnership of the country’s leading social care and end of life organisations has told Sky News of their deep frustration at being excluded from important discussions around the assisted dying debate – describing the proposed change to the law as “unworkable, unaffordable and naive”.
The Coalition of Frontline Care for People Nearing the End of Life is worried about the impact of introducing assisted dying will have on their three million-strong workforce, which they say is on the frontline for delivering care to terminally ill adults.
The partnership includes The Gold Standards Framework Charity (GSF), National Care Forum (NCF), British Geriatric Society (BGS), Care England (CE) and the Community Hospital Association.
It submitted evidence at the committee stage of the Terminally Ill Adults (End of Life) Bill, but was not called to give evidence.
Professor Martin Vernon, consultant geriatrician and spokesperson for ethics and law at the British Geriatric Society, told Sky News: “This is a huge problem for us.
“The majority of people this law will impact are going to be older people with complex needs, and there has been virtually no engagement in the consultation process around this proposed legislation.”
Professor Martin Vernon says the majority affected by the bill will be older with complex needs
Professor Vernon and his coalition colleagues are especially concerned about sick and vulnerable adults being pressured into making choices.
“We then may see, increasingly, older people with life-limiting diagnoses like dementia, like frailty, feeling the need to opt for assisted dying or indeed feeling coerced either by their circumstances or societally,” he added.
“This may place a heavy burden on some individuals to choose assisted dying when, actually, the creation of better alternatives – supportive care, and palliative care to enable them to have a dignified and comfortable last few years of life should be the way to go.”
Caroline Southgate, founder and managing director of home care company Doris Jones, told Sky News there was simply not enough information about the impact assisted dying would have on her staff.
‘The way that the bill is presented doesn’t give us enough information,’ Caroline Southgate says
“I think we are concerned that we don’t have enough clarity about how we would train staff, how we support people if they make that decision,” she said.
“At the moment, the way that the bill is presented doesn’t give us enough information to know how we would deal with those issues.
“If someone chooses this route, all I need to know is what’s my role, where are my boundaries?”
Mrs Southgate is also worried about her staff being accused of coercion. Because of the nature of their work, home carers build up a strong bond with the people they tend to, often seeing them multiple times a day.
And sometimes, they might be the only contact their service users have.
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“I think we’ve got lots and lots of experience of being in homes with people, dealing with families, who trust us to look after the person who needs care and support at home,” she added.
“I need to know that we would be insured and protected should a family decide that one of our staff was accused of coercing someone, or the other way around, talking someone out of a situation.
“We really need a lot more information to make that safe for us and to make sure that our staff are really well supported.”
Katy Betz works for Mrs Southgate. She is a trained nurse originally from Germany but has lived and worked as a carer in England for over 20 years.
Kate loves what she does, but echoes the same concerns expressed by her employer: Assisted dying could change the relationship she has with her service users.
Driving along Southend’s seafront, she explains there is little else she and her care colleagues talk about these days.
Katy Betz tells Sky News the debate on assisted dying is all she and her colleagues talk about
“It is important”, she says. “Even within my friendship group, everyone has got a different opinion, a strong opinion actually.
Katy says she needs more detail: “More training, safeguarding – what do we do? Where do we go? Who needs to be informed about the client’s decision?
“You are there to make their life, and their end of life, bearable and as good as possible. I can’t explain how I deal with it, but I think you just have to be born to deal with it.”
Katy is on her way to see John and Brenda Barber for one of their daily visits. Brenda is 85 and John is 90.
John took Brenda on their date to a jive dance in Southend.
He was 20 years old and had just returned from army service in Gibraltar. Brenda was just 16.
They have been inseparable ever since.
John’s arthritis makes everyday tasks almost impossible, and he says if he did not have a carer like Katy, his life would be intolerable.
Paul Barber said his life would be intolerable without Katy Betz
He says: “It’s becoming increasingly difficult with different parts of my body. My wife and I are together and that’s what we want. We would never want to be separated.”
There’s a pause while he reflects on that thought. “That’s despite the bickering,” he says before breaking into a mischievous laugh.
The bond that is shared between Katy, John and Brenda is clear to see. They are worried that this might change irreversibly if the assisted dying law is passed.
The Terminally Ill Adults (End of Life) Bill returns to the House of Commons on Friday, where it will face greater scrutiny.
Earlier this week, two Royal Colleges, Physicians and Psychiatrists, withdrew support for the bill, saying it was “not fit for purpose”.
But campaigners in favour of assisted dying have told Sky News the bill includes more protections and safeguards for all dying people than any other jurisdiction where the choice is legal.
Sarah Wootton, chief executive for Dignity in Dying, said: “MPs voted by a clear majority to progress Kim Leadbeater’s Bill in November because they recognised that the blanket ban on assisted dying is failing dying people and their families.
“Every year, dying people are forced to endure unbearable pain, despite good care, travel overseas to die alone, or take matters into their own hands, often dying violent and lonely deaths without support.
“This bill – already hailed as the strongest in the world – has been strengthened even further during committee stage, with amendments accepted to involve a range of skilled professionals in every application, specific training requirements around coercion, and that assisted dying can only be discussed within the context of all end of life options.”
