A prominent disabled advocate for legalising assisted suicide has defended his position, but has promised to reconsider his support if shown evidence that casts doubt on the safety of a similar law in the US.
Dr Tom Shakespeare (pictured) is one of the most high-profile supporters of Disabled Activists for Dignity in Dying, the group set up by the charity Dignity in Dying, which leads the campaign to legalise assisted suicide.
He is among those backing a private member’s bill being proposed by the Labour MP Rob Marris, which is due to be debated – and voted on – by MPs on 11 September.
The bill, which applies to England and Wales, would allow an assisted suicide for people found to be terminally-ill with less than six months to live.
Shakespeare is the author of influential books on disability rights, and is an academic specialising in medical sociology, disability studies and the social and ethical aspects of genetics, while he also co-authored a major report on disability for the World Health Organisation.
He is currently a senior lecturer at the University of East Anglia’s Norwich Medical School.
Now, in an interview with Disability News Service (DNS), he has said he has to accept the possibility that he could be wrong about the risks of a new law and whether the safeguards proposed would be strong enough.
He said he had listened to campaigners on both sides, had read as much evidence as he could, had “thought about it very hard with an open mind”, and knew “as much as most people about independent living and the health system”, and was still supportive of a change in the law.
But he added: “I am not God. I cannot predict, of course I can be mistaken. It would be extraordinarily arrogant to suggest that I am infallible.
“I could be wrong, of course I could be wrong, but of course I don’t think I’m wrong, I think I’m right.”
In a further admission that could give heart to those opposing the bill, he said it was clear that all of the terminally-ill people affected by the proposals should also be seen as “disabled”, even though many other supporters of legalisation have repeatedly denied that the bill has any relevance to disabled people.
Marris himself told DNS that disabled people like Baroness [Jane] Campbell were guilty of “wilful misinterpretation” when they claimed his bill was about disability and disabled people, adding: “This bill is not about disability, it’s about terminal illness. The two are separate.”
But Shakespeare disagrees. He said the bill was about a “very, very small minority of people who are in the end stage of terminal illness. And yes, they are disabled, they would be classed as disabled, of course they would.”
Shakespeare used the term “disabled people” frequently during the interview to explain why he supports Marris’s bill.
He said: “I think disabled people should have control over their lives, throughout life, I think that’s an absolute principle of the disability movement.
“Nothing about us without us, the issue of autonomy. It’s the absolute central thrust of the disabled people’s movement.
“It seems to me to be inconsistent that you should say to a disabled person who is fully competent, fully capable, that if at the end of their life when they have terminal illness, in very limited circumstances, they wish to take control of their death, they’re not going to be allowed that.
“It seems to me to be protectionism. It seems to me to be saying that people can’t be trusted.”
His views on assisted suicide contrast with those of many of his friends within the disability movement.
But although he has “immense respect” for disabled activists such as Baroness [Jane] Campbell, Liz Carr and Mik Scarlet, all fierce opponents of the bill, and whose arguments he takes “very seriously”, he said he finds it “really unfortunate that disability organisations have been as of one voice in opposing it”.
He insisted that he would not support any assisted suicide law that would put disabled people at risk, and added: “That headline fear, I can understand where it’s come from, disabled people have been treated badly over the centuries, but I don’t think it’s a realistic fear.”
But he admitted that he does not know if there will be mistakes – with some people dying when they do not want to – if assisted suicide is legalised.
He said: “I don’t know. This is about people having individual choice. A mistake would be somebody who was under so much pressure from their relatives that they just lied and lied and lied, when they were talking to doctors and they were talking to judges.”
And he said he was not convinced by fears that some disabled people would choose an assisted suicide to avoid being a “burden” on relatives.
He said: “I just think that that’s not likely. If that was an issue… we would already have lots of people killing themselves to save their families money. I don’t think we have that.
“It is a theoretical worry, but I don’t think it is a real worry. I think the real worry is the covert euthanasia, the mercy killing, the parents killing themselves and their disabled children.
“Those are the things that we should be worried about, not a few people who are in the terminal stage of illness deciding to end their lives a bit earlier to avoid pain and suffering.”
But he admitted that he does not know how the new law would protect against the risk that some terminally-ill people would believe their families would be better off without them.
He said: “I don’t know. But they are going to be dead within six months; this is not going to be people who are going to be a burden for long, sadly.”
He added: “You can’t stop people feeling a burden. You can’t protect against that. The weight of their argument has got to persuade the judge and the doctors.”
And he pointed to laws that already exist that allow anyone dependent on medical technology, such as tube feeding, ventilators, or dialysis, to ask for those medical interventions to be withdrawn at any time.
This means, he said, that these people could already decide to end their own lives if they felt they were a burden on their family.
He said: “Do they? No, they don’t. Show me the evidence that those people are refusing treatment because they are being a burden on their relatives. They are not doing it.”
Shakespeare also claimed that the right to assisted suicide was “part of independent living”.
He said: “It’s not a choice between independent living and killing yourself quickly. You can have independent living right up to the last minute. It’s about a very limited number of people who are going to die… soon.”
He insisted that the argument that disabled people need a legal right to independent living before there can be any discussion of a legal right to assisted suicide was a “red herring”.
He said: “The reason people are choosing assisted dying at the end of life is not because they can’t get the Independent Living Fund, it’s not because they can’t live independently in their homes, it is because they can’t swallow, they have to choose between medicating their pain effectively or being lucid.
“It’s because they fear being utterly, utterly dependent at the end of life and they want a better death and they know they are going to die.”
He also said he believed that the judge and two doctors who would have to agree to an assisted suicide would be able to detect if that person had been “rehearsed, coached, pressured, otherwise dominated by family members to accept something that they don’t want for themselves”.
He said: “With interviewing them at length without the family members being present, I believe that that would be detectable.”
He was also dismissive of concerns that a minority of doctors would be tempted to sign off requests for assisted suicide to save NHS resources for those who were not terminally-ill.
He said: “I think it goes against their entire training. I work in a medical school, I see the ethos… people are far more likely to be kept alive against their will… I think it would be scaremongering to suggest otherwise.”
Shakespeare said Britain had more in common with the US state of Oregon – where he believes legalisation has worked well and as intended – than Belgium and the Netherlands, where broader assisted suicide laws have led to “a lot of concerns”.
He said: “Can we see comparable laws to the one proposed in the UK? Yes we can, we can see it in Oregon.
“Are there any substantive problems with Oregon? I don’t think there are.
“Of course there are concerns, there are concerns about everything. I am not a Nazi! If I had seen strong evidence that the Oregon law was harming people, then I would not in any sense be supporting something similar in the UK.”
He added: “We are in a society very similar to Oregon, except that we have a free NHS and they don’t. If you put new evidence to me, I would have to rethink, but I haven’t yet seen any evidence about problems with Oregon.”
Shakespeare said that he was in favour only of legalising assisted suicide for those who were terminally-ill, with less than six months to live.
He said: “If the current bill did pass, I think the vast majority of people like me would say, ‘this far and no further.’”
He compares the situation with abortion law in the UK, with abortion legal in certain circumstances, but no “abortion on demand”.
He said: “It’s a compromise that is accepted by the majority of people and I think that’s the same with assisted dying.
“There are some people, the libertarians, some of the assisted dying lobby, some of whom would say everybody should be allowed access to this at all times, but it’s not the law on offer and if it was offered, I and many, many people, the majority of people, would oppose it.”