People with learning difficulties ‘could be collateral damage’ if assisted dying bill becomes law

A disabled peer has raised fears that people with learning difficulties could be “collateral damage” if a controversial assisted suicide bill becomes law.

The terminally ill adults (end of life) bill – which applies to England and Wales – continues to make slow progress through the House of Lords as peers debate hundreds of suggested amendments to the private member’s bill introduced last year by Labour MP Kim Leadbeater.

On Friday (6 February), the disabled crossbench peer Baroness [Tanni] Grey-Thompson told the Lords that she was “very concerned” about the “significant risk” that the legislation could pose to people with learning difficulties and autistic people if assisted dying became law.

She pointed to research from the Netherlands – where assisted suicide has been legalised – which examined 39 cases of disabled people who had accessed the assisted dying service due to “intellectual disabilities or autism spectrum disorders”.

In 24 of those cases, she said, “the disability was the major contributing factor in the decision to ask for and grant the service”, while in eight cases, “the only causes of suffering described were factors directly associated with intellectual disability or autism”.

She told the Lords: “People with learning disabilities have internalised the message that they are not as important as others and are likely to hear the raising of the question as a suggestion that this might be the right thing to do.

“It becomes normalised and it becomes ‘when’, not ‘if’.

“We know that health is not a level playing-field for people with learning disabilities.

“Disabled people frequently have to fight to get the same treatment for health issues as non-disabled people, so there are real worries in this.”

She said she also feared that some doctors “think they know best and could easily talk a person with a learning disability into doing what they wanted”.

Baroness Grey-Thompson pointed to disabled actor Tommy Jessop, who has Down’s syndrome and who has said there need to be “rules to keep us safe, but that has not happened” and that people with Down’s syndrome should not be “collateral damage” from the bill.

The former Conservative minister for disabled people, Lord [Mark] Harper, told fellow peers on Friday: “We should all have very high expectations of the quality of life that people with learning disabilities can have.

“But, just to pick one example, we know how many people with learning disabilities were treated during the Covid pandemic, when many of them were given ‘do not resuscitate’ orders without their consent because medical professionals had taken a view about their quality of life without asking them.”

He added: “I think we know enough from experience to know that we should properly protect people with learning disabilities, recognising that they often have capacity and are able to make their own decisions, but that they need extra protection to make sure that those decisions are the right ones.

“If we do not do that, knowing what we know, we will be failing them.”

When Baroness Grey-Thompson asked the Labour peer Lord Falconer, who is steering the bill through the Lords, what she should say to Tommy Jessop and others who have asked for extra protections in the bill, and whether she could tell them they will be safe, he said they would be.

Lord Falconer said: “The question that she is raising in relation to such people is whether they will be over-pressed [he later insisted that he meant to say ‘pressed’] to have an assisted death.

“My answer is that they will not, because they would have to satisfy a co-ordinating doctor, an independent doctor, a panel consisting of an ex-judge or a king’s counsel, a psychiatrist and a social worker.

“In my view, this will provide him with protections.

“I am very aware of the fact that in normal day-to-day interchanges with various parts of the systems, both health and legal, there are those who may make disabled people feel that their lives are not sufficiently valued.

“Of all the interactions with the health service, however, this is the one that will be most protected.”

Baroness Grey-Thompson had previously raised serious concerns about changes made to the bill by Lord Falconer to measures that would offer an independent advocate to people with learning difficulties who have requested an assisted death.

She has told Lord Falconer that his changes would mean that someone with learning difficulties would be asked – without any support – whether they wanted an independent advocate, and so they could refuse one without the support they need to make that decision.

The pressure they face in this situation could even increase because they could be told there is no independent advocate available and that the doctor would not be able to proceed with the assisted death process unless they waive their right to an advocate.

And, the disabled peer points out, the independent advocates need only be instructed to represent someone with learning difficulties, under Lord Falconer’s plans, and might not actually attend the series of assessments carried out by doctors and a panel of experts which will decided if the person is eligible for an assisted death.

Lord Falconer told Disability News Service yesterday (Wednesday) that there was “absolutely no evidence from abroad that there is a particular problem in relation to disabled people”, in states and countries that have legalised assisted dying.

He said: “In relation to people with various learning difficulties or autism, again, with proper assistance, they too can have that choice.

“Special care has to be taken, but that care can be taken with the safeguards currently included in the bill, and the option should be available to them as well.”

He added: “I do not think a qualifying person should be forced to have an advocate, say if they already have representation or decide that they want to proceed without one having been provided with information about the consequences of doing so.

“Indeed, whether a qualifying person proceeds with or without an independent advocate is separate to the five checks throughout the process that the person is terminally ill, has capacity to make the decision, is ordinarily resident in England and Wales, has a clear, settled and informed wish to end their own life and has made the declaration voluntarily and has not been coerced or pressured by any other person into making it.”

He said his amendments to the clause had been drafted to add more detail to the bill, in consultation with disabled Labour MP Dr Marie Tidball.

Tidball has angered parts of the disabled people’s movement by publicly supporting the bill.

Lord Falconer is set to respond to Baroness Grey-Thompson’s questions about the new independent advocate clause when the committee examines the issue on 27 February.