Where are we now with the assisted dying bill?

A humane release when life becomes little more than a form of death, and where the only hope is that the opioids are stronger than the pain. This is how its supporters promote assisted dying. As a humanitarian act that we grant to our pets but deny to each other.

But for learning-disabled actors, Bethany Asher and Tom Jessop, assisted dying is far more complex than a simple choice between a compassionate response to hopelessness and safeguarding the sanctity of life.

They raise concerns about how a subtle and sinister unspoken pressure could have been applied if Labour MP Kim Leadbeater’s private member’s bill on assisted dying had become law. The process is called “assisted dying” because, although medics prepare the poison, those choosing death must drink it themselves.

Although it ran out of time to pass into law, supporters will now look to a backbencher to take it through the Commons again as another private member’s bill.

What is the ‘assisted dying’ bill?

Kim Leadbeater’s Private Members’ Bill set out to allow adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life; and for connected purposes.

The proposal defines a terminally ill person as someone who “has an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”, and the person’s death in consequence of that illness, disease or medical condition can reasonably be expected within six months.

The Terminally Ill Adults (End of Life) Bill highlights that a person is not to be considered to be terminally ill by reason only of the person having one or both of a mental disorder, within the meaning of the Mental Health Act 1983 or a disability, within the meaning of section 6 of the Equality Act 2010.

The campaigning organisation Dignity in Dying said the Bill is the “strongest proposal” Parliament has ever considered on improving choice and protecting the rights of dying people.

“Compassion and safety are the cornerstones of Kim Leadbeater MP’s assisted dying bill; bringing choice to those who want and need it as they die, but also introducing regulation and scrutiny where there is currently none. That benefits us all,” said Sarah Wootton, Chief Executive of Dignity in Dying.

However, some campaigners are concerned about the impact the Bill could have on disabled people. For instance, Disability Rights UK (DRUK) has opposed the assisted dying bill, with support from more than 350 disabled people’s organisations.

In a statement, the Chief Executive of DRUK, Kamran Mallick, said that given the severe inequalities disabled people face, the charity could “no longer maintain a neutral stance” on the Bill. Mallick says the government must focus on giving disabled people “dignified and equitable lives” before they consider a change in the law.

How would the assisted dying bill work?

Two independent doctors, with a seven-day gap between evaluations, would have to be satisfied that someone is eligible and that their decision was made voluntarily. However, it is unclear whether the person can restart the process with different doctors if the request is initially denied.

Requests would also have to be approved by a High Court judge, and it would be a further 14 days after a judge’s ruling before a person could be assisted to die, except when the person’s death is expected imminently. The individual would be allowed to change their mind at any time, and the process stipulates that no doctor would be under any obligation to participate.

Lethal medication offered would be self-administered. In addition, anyone found coercing someone to end their life — or make a false declaration as part of the process — could receive a prison sentence of up to 14 years.

Choice and protection for dying people

Supporters of the Bill believe this is a historic step towards greater choice and protection for dying people.

However, Jessop, who became the first actor with Down syndrome to play the title role of Hamlet, said, “A lot of people with Down syndrome are worried about the assisted dying law. We are worried about being pressured into it. We know that some healthcare staff do not think our lives are worth living. They are wrong.”

Asher, who is known for her roles in Innocence, Sherwood and Wild Bill, has echoed these sentiments, saying, “People with Down syndrome and other disabilities are already not taken seriously, and it is difficult to have our voices heard.

“I am worried that in years to come, when my mum isn’t here any longer, I may be pressured to end my life when I didn’t want to because I may be seen as a burden on the health service if they don’t want me anymore.”

Lessons from the pandemic

One of the most troubling lessons to emerge from the pandemic was that some medics still regard the lives of the learning disabled as inherently worth less than those of people without any developmental challenges.

At the time of the pandemic in 2021, the National Institute for Health and Care Excellence used a clinical assessment of frailty that left many of the 1.5 million people in the UK with learning disabilities ineligible for hospital treatment for coronavirus.

The guidance was removed after a month, but not before it had already seeped into medics’ consciousness.

Rachael Ross, of the National Down Syndrome Policy Group (NDSPG), echoed the fears of Jessop and Asher, saying the proposals “put vulnerable people at serious risk of coercion, misunderstanding or subtle pressure”.

Ross added, “Parliament must uphold the strongest protections to ensure those who depend on others are fully safeguarded and their rights respected. No law should expand choice for a few while endangering the safety of many.”

Current statistics on assisted dying and disability

In May 2023, research revealed that people under 30 with autism and a learning disability in the Netherlands had been choosing euthanasia. Some cited only their autism or learning disability as the reason for wanting to die.

Between 2012 and 2021, 60,000 people chose to die in the Netherlands. Dutch authorities released case files on 927 to show how the policy works. Researchers found 39 patients who had autism and or a learning disability among the 927. Factors linked to their autism or learning disability were the sole cause of suffering in 21 per cent of cases.

Five people aged between 18 and 29 were among those who chose to end their lives. In 30 or 77 per cent of the cases, loneliness and social isolation were listed as factors that led to the person’s “unbearable suffering” and plea for euthanasia.

Palliative care specialist at London’s Kingston University, Professor Irene Tuffrey-Wijne, led the research. She said she had “no doubt” that those who ended their lives were suffering. But she questioned whether society was happy to send the message that “there’s no other way to help them and it’s just better to be dead”.

Where are we now with the bill?

As it stands, Leadbeater’s Terminally Ill Adults (End of Life) Bill did not make it onto the statute books in the last session of Parliament.

After being considered by MPs, it was scrutinised by the House of Lords, and the sheer volume of amendments tabled, 1,200, meant it did not become law before the end of the last parliamentary session in mid-May.

The Lords have attracted criticism for this, with accusations that they are using a delaying tactic to thwart popular legislation, as opinion polls have put support for assisted dying at 75 per cent.

Assisted dying and learning disabilities

Labour MP for the Spen Valley, Leadbeater, herself insists that terminally ill people with learning disabilities should be given all the help they need for an assisted death, as with every other aspect of their care.

She said her bill would offer “choice at the end of life, only to mentally competent adults with less than six months to live” and insisted it has “extensive layers of safeguards against coercion”.

Leadbeater has pointed to the experience of her former parliamentary colleague, the ex-Labour MP Paul Blomfield, who supported changing the law after seeing his father kill himself following a diagnosis of inoperable lung cancer.

The sister of murdered MP Jo Cox, she added, her bill would include the creation of independent advocates and see a disability advisory board set up. And multiple assessments, including by two independent doctors and a panel that included a lawyer, a psychiatrist and a social worker, would be needed.

She added, “The bill was drafted after thorough discussions with colleagues with lived experience of family members with learning difficulties, and is the safest and most robust piece of legislation of its kind anywhere in the world.

“Learning difficulties impact individuals in a wide range of different ways and they should, in my view, have the same rights as anybody else, including choice at the end of their lives with the strict safeguards the bill puts in place.”

Oregon’s Death with Dignity Act

Critics of Leadbeater’s assurances about “safeguards” point to Oregon in the US. Oregon’s Death with Dignity Act was framed to be restricted, like Leadbeater’s bill, to the terminally ill, but has expanded to include conditions like anorexia and arthritis.

Campaigners have expressed fears that the same process would inevitably follow here, as people with chronic, long-term illnesses may argue they should also have the right to choose death.

In March, Scotland rejected the Assisted Dying for Terminally Ill Adults (Scotland) Bill very narrowly when its Parliament voted against the bill there by 69 votes to 57. It was the third time the Scottish Parliament has rejected assisted dying since 1999.

The Liberal Democrat MSP proposing the legislation, Liam McArthur, said he was “deeply disappointed”. Independent MSP Pam Duncan-Glancy, who uses a wheelchair and opposed the Bill, said the disabled would take strength from the vote.