Matt Hancock calls for more data on end-of-life care and assisted dying

A machine simulating vital signs of a deteriorating patient (Ben Birchall/PA) (PA Archive)
19:32pm, Wed 16 Jun 2021
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Matt Hancock has endorsed the idea of setting up a “What Works” centre to gather evidence on the quality of palliative care in the UK and inform debate around assisted dying.

Speaking to the All Party Parliamentary Group (APPG) on Dying Well on Wednesday evening, the Health Secretary said he was “neutral” on the question.

But he added Parliament needs a “broader conversation” about the two issues.

“I think it is important that any debate that we have is nested in a wider debate about how we support people better towards the end of their lives,” he said.

The APPG on Dying Well opposes a change in the law around assisted dying and euthanasia, arguing instead that what is needed is high-quality palliative care available to everyone.

Danny Kruger MP, who chairs the APPG, said there was a lack of data on the experiences of people at the end of their lives.

He said a What Works Centre, which is used to gather and share evidence on particular areas of policy, would gather data that is currently lacking and “inform practice on the ground so that both the public and practitioners knew what good practice looks like”.

Noel Conway (Aaron Chown/PA) (PA Archive)

Mr Kruger cited the example of long-time assisted dying campaigner Noel Conway, who passed away recently after taking the decision to remove his ventilator, as an example of how good palliative care can give terminally-ill people a dignified death.

“The fact is that Mr Conway, had a painless and dignified death within the law as it currently stands,” he said.

“He was able quite legally to come off the ventilator, which was keeping him alive nd with the help of his medical team to slip away without shortness of breath, without pain in dignity and with his family around him.”

Mr Hancock said: “I love What Works Centres, I think they’re a great policy innovation (but) it would be very important that like me it was neutral in this debate.”

He added: “I’ll have to look at the exact wording of what you want me to sign up to, but I think you can see where I am in principle.”

According to data cited by Mr Kruger, one in 25 deaths in the Netherlands are now recorded as euthanasia or assisted dying, but just 5% of doctors working in end-of-life care want to see a change in the law.

Among the speakers were 11 time gold-medal winning Paralympian Baroness Tanni Grey-Thompson.

I've lost track of the number of people who have asked me have I thought about ending my life, because they have an assumption that my life is so terrible and tragic

Baroness Grey-Thompson said: “One of the things that we always have to deal with is conflation to disability frailty and illness, and especially illness and disability are often wrongly used interchangeably.”

She added: “I’ve lost track of the number of people who have asked me have I thought about ending my life, because they have an assumption that my life is so terrible and tragic.”

Baroness Grey-Thompson said that in the debate around assisted dying “we are constantly told there will be safeguards but we have no idea of what they are going to be”.

She continued: “We are asked to pass the law and then work out the safeguards.

“I just don’t think that is good enough.

“That is why a huge number of disabled people feel threatened.”

Baroness Tanni Grey-Thompson (Lia Toby/PA) (PA Archive)

Also present was Professor Katherine Sleeman, chairwoman in palliative care at King’s College London.

She said there were “large gaps” in knowledge around the quality of palliative care outcomes.

“The most important data we rely on are proxies like ‘did people die at home?’ when actually what we really want to know is, did people die at peace?”

Prof Sleeman continued: “I think there are some reasons for optimism, particularly around maybe how palliative care is perceived and prioritised, but also reasons to feel worried.”

“I think certainly progress is not what we might have hoped,” she said.

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