Learning Disability Today
Supporting professionals working in learning disability and autism services

Legalising assisted dying puts disabled people’s lives ‘at risk’, says Liz Carr

© BBC/Burning Bright Productions Ltd

Actress and disability advocate Liz Carr has warned that legalising assisted dying in the UK would put the lives of disabled people ‘at risk’.

The documentary, Better Off Dead?,  explores the how legalising assisted dying, or euthanasia, would impact disabled people and other vulnerable groups, such as those with mental health conditions.

At the age of seven, Liz was diagnosed with an autoimmune condition which “changed her life”. Diary entries from when she was 12 reveal that she ‘wanted to die rather than carry on, as she couldn’t see any good in the future’.

Liz fears that if assisted dying was an option to her when she was going through these struggles, she may have pre-emptively ended her life.

“I just didn’t have any memory of actually saying I had wanted to die, and a frightening thing for me would be is if that was possible,” she said.

A two-tiered system

Liz has long campaigned against legalising assisted dying. There have been eight attempts to change the law, but none have been successful.

In the documentary, Liz explains that assisted dying creates a ‘two-tiered’ system: suicide prevention for some and suicide approval for others.

“If a non-disabled wants to commit suicide, it’s a tragedy. As soon as a disabled person does, it’s a release,” she said.

Liz highlights how these inequalities were exposed during the Covid 19 pandemic, with blanket do not resuscitate (DNR) orders placed on people with disabilities  while others with high care needs were deprioritised for treatment. She questions: “Should we be giving more power to end that group of people’s lives?”

British Labour peer and barrister Lord Charlie Falconer has sponsored four bills which would allow terminally ill people with less than six months to live to have an assisted death.

He said: “We have to do something about the law because if you want to take your own life because you are terminally ill, you’ve either got to do it yourself without any help, or you’ve got to go to Switzerland and do it earlier than you might otherwise have to, in alien surroundings maybe without those that you love.”

However, Liz is concerned that the law could be widened to allow groups other than those who are terminally ill to have an assisted death.

Lord Falconer said: “It’s not about people who are suffering from any sort of condition that is not going to end their life within the next six months … Once a legislator decides it’s going to be terminal illness only, it’s going to stick at that.”

“The line in the sand for me is terminal illness and it goes no further than that,” he added.

Canada’s assisted dying law expanded to include people with non-terminal conditions

However, Canada’s assisted dying law illustrates why Liz is so concerned about a change in UK legislation. In June 2016, Canada passed legislation that allows eligible adults to request ‘medical assistance in dying’, known as MAID.

Initially, the only group eligible for MAID were people with a terminal illness. But in 2021, the law was changed to include those with serious and chronic physical conditions, even if that condition was non-life threatening.

People with terminal illnesses can now be assessed and euthanised within 24 hours, whereas people with other non-terminal conditions have an assessment period of 90 days. Both of these pathways have a safeguard of a signoff from two medical professionals, but Liz says there can be ‘loopholes.’

Liz travels to Canada during the making of the documentary to speak to people who have first-hand experience of MAID including Amir Farsoud, who was struggling to stay alive while on state benefits. Amir lost his home and could not find anywhere else he could afford to live. Amir had been homeless in the past and said he could not face it again, so he decided to speak to his doctor about MAID.

He told his doctor he was seeking MAID due to his socioeconomic situation and he was approved on the basis of ‘unbearable suffering’. Amir was interviewed by a Canadian journalist for a local news channel and following the broadcast, a local woman set up a fundraiser for Amir. Within four days it raised $60,000, allowing Amir to pay off his debts and find a rental property.

“If not for her, I would have died at the end of November last year,” he said.

Evidence that learning disability and autism have been used as reasons for assisted dying in the Netherlands

Rates of assisted dying in Canada have grown tremendously since the new Bill was passed in 2021. In the first year MAID was introduced, more than 1,000 Canadians chose to have a medically assisted death. Six years later, the annual figure had leapt to more than 13,000.

Canada is now considering extending the law to include people with mental illnesses and minors as young as 12.

Assisted dying has also been legalised in the Netherlands for people experiencing ‘unbearable suffering with no prospect of improvement’. Erica Borgstrom, Professor of Medical Anthropology at the Open University, told LDT that “there is evidence that learning disability and autism have been used as cited reasons for suffering, which can enable access to euthanasia.”

Indeed, the Dutch study found that factors directly associated with intellectual disability and/or autism were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons included social isolation and loneliness (77%), lack of coping strategies (56%), and difficulty adapting to change (44%).

“In some cases, the doctors acknowledged there was ‘no prospect of improvement’ in terms of how the person felt as autism and intellectual disabilities are not ‘treatable’. The researchers who have worked on this note the importance of societal support and discussions around acceptability of these as reasons to end lives,”  said Prof Borgstrom.

A law which only allows terminally people to access assisted dying “won’t work”

While Lord Falconer assured Liz that a UK law would only ever make assisted death legal for people with terminal conditions, Liz says there are many campaigning groups pushing for an assisted dying law which includes people with non-terminal conditions.

For example, Melanie Reid, a journalist with a disability, says: “What about someone like me, who isn’t terminally ill but for whom life could become unbearable in other ways … Why should my right to do that be denied? Why do I have to wait until I have something terminal until I have that right?”

Liz therefore argues that changing the law to allow people with terminal illnesses to have an assisted death “still won’t work” unless it is for a “much bigger group of people”, and that is why the prospect of a new law is “terrifying” for disabled people.

Disability activists are also concerned that assisted death is a less expensive option for the government than providing lifetime care to people with disabilities and other care needs.

As disability activist Paula Peters explains: “What concerns me is it will be the state’s way of saying that an [assisted death] is a cheaper alternative to care packages and support because you’re too expensive to treat.”

Improving care and support negates the need for an assisted suicide law, Liz says

Ultimately, Liz argues that legalising assisted dying for people with non-terminal conditions frames disability as “a reason to kill yourself”.

Speaking at a press screening of Better Off Dead?, Liz said: “I’m the kind of person that should want this law. But I don’t believe we have the right choices. People are dying in corridors, they are being denied life extending treatment because they’re told it’s too expensive. they don’t have access to palliative care or hospices. It’s an outrage.

“I can’t understand why those who want these laws don’t put all their resources into improving these choices and giving people control over their lives. A choice isn’t a choice when you’ve got no choice.”

Liz Carr in Better Off Dead? documentary

Better Off Dead? airs on Tuesday 14 May, 9pm, on BBC One & iPlayer.

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