Four disabled people have given evidence to a parliamentary inquiry to try to fight back against the well-funded campaign that aims to push parliament towards unsafe plans to legalise assisted suicide.
The four campaigners told MPs of their fears that legalisation would lead to some disabled people being coerced into agreeing to an assisted death, and that any restrictions and safeguards that were introduced would gradually be relaxed, as has happened in other countries.
They also raised concerns about the message that legalisation would send out about the value of disabled people’s lives.
They were giving anonymous evidence to the inquiry being carried out by the Commons health and social care committee into the legalisation of assisted suicide.
A significant majority of those asked to take part in 10 round table evidence sessions organised by the committee were supporters of legalisation, many of them relatives of people who have died with terminal illness.
The sessions were held in May but were only uploaded this month onto the committee’s website.
In all, of more than 50 people asked to take part in the anonymous evidence sessions, only about 14 clearly expressed their opposition to legalisation, while more than 30 were clear supporters of assisted suicide.
One of the four disabled opponents – all of whom were associated with disabled-led groups – told the inquiry that no-one had yet come up with a “magic bullet” that would ensure disabled people were protected “from any kind of coercion” or direct or indirect pressure if assisted suicide was legalised.
They also said legalisation would send out a message that said: “You can cost the state £5,000 a week for health and social care support needs, or you cost them £1,500 as a one off and that will solve everybody’s problem.”
They added: “I think that we also need to remember that the number of people who would actually profit from this legislation are relatively small, and that would come at a high price for the rest of us who are left.”
Another of the four said the idea legalisation promotes that disabled people were “better off dead” than relying on support with their personal care “really devalues our lives”.
They said legalisation “would only profit a few people, whereas it could potentially damage many, many people’s lives”.
And they said that domestic violence disproportionately impacts disabled people, so the threat of “controlling and coercive behaviours” pushing someone to opt for an assisted suicide is “a real concern for us”.
The third disabled participant said the “subtle pressure” caused by legalisation, including the guilt that might be felt by disabled people worried about their family spending money to support them when they could opt for an early death “could be really dangerous”.
They also warned that those pushing for legalisation were “much better resourced and much better educated and have much bigger support” than those opposed.
The fourth disabled participant told the inquiry that there was a “massive preconception that people in the situations for whom these laws get written… in the majority do not want to live with the lives they’ve got, and that is not true”.
Instead of pushing for legalised assisted suicide, they said, the campaigning focus should be on “accessible housing, accessible transport, access to palliative care, access to support… the equipment that you need”.
Many of those who favour legalisation spoke in their evidence of relatives not being able to die comfortably or becoming distressed at losing their independence.
Others who were terminally ill themselves or had a progressive condition spoke of wanting to have control over the time and manner of their own deaths, to die a “peaceful, dignified death”, or wanting the law to allow a “safe, comfortable, controlled, legal death”.
Several spoke of being investigated by the police after supporting friends or relatives to go to the Dignitas clinic in Switzerland to die, or to take their own life at home.
Some of the most nuanced evidence was given by those working in palliative medicine.
Several healthcare professionals spoke in favour of legalisation, including one retired specialist palliative medicine consultant who said they had concluded that there was a “quite sizable number of people who experience intolerable suffering when they come to the end of their life”.
A retired professor of palliative medicine said they had seen very good evidence that “palliative and good end-of-life care can coexist with assisted dying”, while a hospice chief executive who appeared to be in favour of legalisation said the decision was around “respecting somebody’s choice” and allowing them “dignity around their care and respect [for] their wishes”.
Several palliative care experts spoke of their deep concern at the push for legalisation.
A consultant in palliative medicine at a hospice said there were very few people who asked for an assisted suicide and when they do “it’s in a moment of great distress and fear”.
They added: “And actually when they receive good palliative care, those feelings and those thoughts and those ideas often go away and they’re very grateful for the fact that it didn’t happen in that moment because they’ve been given a chance to have some quality of life and do some of the things they want to do.”
One palliative care consultant pointed to the evidence in Canada of a “growing epidemic” of assisted suicide that was being driven by poverty.
They said that more than four-fifths of those working in palliative care are opposed to legalisation “because we see people when they’re the most vulnerable and when they’re most vulnerable, they’re frightened and they’re looking for a way to just get it done rather than addressing the actual fear itself”.
They also spoke of how the likely course of a terminal illness is “incredibly uncertain”, while people change their mind about wanting to end their lives, and of the risk of “coercion and pressure”.
They said that the question becomes “how many people which we kill wrongly for whatever reason, in assisted suicide, justify the action of having the right to assisted suicide”.
Another palliative medicine consultant said it was “incredibly rare” – one every few years – for “somebody to say to me that they wish that assisted dying was there for them”.
They added: “But what I hear much more frequently is relatives, when they’re looking at a dying patient who is in their last days or hours of life, saying, ‘Oh you wouldn’t put a dog through this. Why can’t you just put him down?’”
One palliative medicine doctor said they believed the campaign for legalisation was being driven by a fear of dying which is “being stoked by the very active and prominent campaigning groups”.
They said the campaign groups “propagate these stories about quite how distressing and awful dying is in order to promulgate the idea that there is a strong societal need [for legalisation]”.
But they said it was “almost always” relatives that were requesting legalisation.
They said: “Relatives looking at a normal peaceful dying process saying, ‘This is awful, they’re suffering dreadfully, you wouldn’t put a dog through this’.
“One aspect of that is not understanding the normal dying process.”
An academic working in palliative care said they agreed. “I think that there is really poor understanding of ordinary dying in society, which makes this debate very, very difficult.
“And I think that perceived need is so largely driven by these very strong and successful campaigns, and actually in clinical practice, we see very, very, very little need.”
They added: “I think we should only legalize assisted dying if we know that changing the law will be associated with less harm on balance for society than as it is now.
“And as an academic who scrutinizes the evidence, that condition isn’t met. It might be met at some point in the future, but… right now it isn’t.”
Picture: Not Dead Yet UK
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