Research shows significant support for assisted dying amongst those with motor neurone disease

Unique research being highlighted today for the first time has revealed that there is significant support for assisted dying amongst people with motor neurone disease (MND), with a plurality wishing to consider it for themselves, were it made legal with strong safeguards.

The research, found in two reports first published in 2012 and 2013 but only now having its findings in relation to assisted dying highlighted, also suggests that only a very small minority would wish to stop others from having the choice of accessing an assisted death. The findings are being highlighted as part of Humanists UK’s intervention in the ongoing legal challenge for the right to die brought by member Noel Conway, who himself has MND. Humanists UK’s oral intervention is taking place on Wednesday lunch time.

The 2012 and 2013 research was conducted by the Picker Institute Europe on behalf of the Motor Neurone Disease Association (MND Association). The 2013 research, a quantitative survey, was published on the MND Association’s website at the time but (for reasons unrelated to the precise research) is no longer present. It asked around 550 people with MND, ‘What does having control at the end of life mean to you?’ The most popular answer by far was ‘Deciding when the time is right to die’, given by 69% of respondents.

This doesn’t necessarily indicate support for legislative change, but the survey then asked more directly, ‘What are your views on assisted suicide?’ 45% say they’d consider it now or if the law changed, 25% gave an answer that said they’d never consider it, 19% said it was too early for them to think about it, and 10% refused to answer.

The 2012 research was more qualitative research on views of 34 people with MND. It recorded similar views. Many of those interviewed wanted to be able to have the right to die, but were concerned about loved ones being prosecuted for assisting them. They also said that to have to journey to Dignitas in Switzerland would be too expensive, difficult, and ultimately (as the disease progresses) impossible. In terms of those who would not consider an assisted death, the report found that ‘A few interviewees said they would not consider assisted dying currently for religious or philosophical reasons, but could see that others might… Only a few interviewees dismissed assisted dying altogether… Despite the variety of views expressed, there was a tolerance of other people’s beliefs and a feeling that this was a deeply personal issue.’

The MND Association has a neutral policy on assisted dying, but was prompted by the research to provide more comprehensive advice about the law around assisted dying, which was published in 2014.

On Wednesday Humanists UK is having its oral intervention heard in Noel’s Court of Appeal case, with Caoilfhionn Gallagher QC arguing on its behalf. Humanists UK has submitted the research as part of its application and Caoilfhionn will be relying upon it in court.

Humanists UK Chief Executive Andrew Copson commented, ‘This research reveals significant support for the right to die among people with motor neurone disease. With Noel Conway’s case for the right to die currently being heard before the Court of Appeal, we very much hope this research will aid the Court’s thinking as it considers his case.’

Hodge Jones & Allen LLP’s Nancy Collins, the solicitor representing Humanists UK in the case, commented,

‘The issue at stake in this appeal is of fundamental importance; the right of those with terminal illnesses to choose when and how they die. This right has been recognised in other jurisdictions and this case provides an opportunity for there to be a change to the current ban on assisted dying in England and Wales. A change in the law to allow assisted dying would alleviate the terrible difficulties faced by individuals, like Mr Conway, and their families who wish to decide for themselves when they are ready to die. Humanists UK provides crucial evidence and insight into the wishes of people like Mr Conway.’

Details of the case

Noel, who is supported by Dignity in Dying, is challenging the illegality of assisted dying for those who are terminally ill and have six months or fewer to live. His case will be heard by the Court of Appeal from the 30 April to the 4 May.

Humanists UK has worked with philosophy professors Simon Blackburn and John Harris to craft its appeal. Both men have put in witness statements examining the underlying ethics at play, reflecting Humanists UK’s unique interdisciplinary expertise at the intersection of medical ethics, moral philosophy, and the law. Humanists UK has adopted a similar approach before, including in the Supreme Court cases Nicklinson (also concerned with assisted dying) and NIHRC (about abortion in Northern Ireland). Humanists UK’s Chief Executive Andrew Copson also submitted evidence on the research being highlighted today.

Humanists UK is being represented in its intervention by Nancy Collins of Hodge Jones & Allen LLP alongside Caoilfhionn Gallagher QC and Graeme Hall, both of Doughty Street Chambers.

Noel’s case is brought using article 8 of the European Convention on Human Rights, as incorporated into UK law by the Human Rights Act 1998, arguing that section 2 of the Suicide Act interferes with his right to private and family life.

Noel’s decision at the High Court represents some advance over the previous decision, in the challenge brought to the Supreme Court in 2014 by Tony Nicklinson and Paul Lamb. There, the court decided that as the issue was such a high profile ethical debate, Parliament should first of all have a chance to decide the matter, before the courts do. However, in 2015 the House of Commons rejected an Assisted Dying Bill. So, the judges decided for the first time that the court should now engage with the substantial issues at hand. Unfortunately, however, the court decided that preventing Noel from being able to access an assisted death is legitimate under the Convention.

Separately, another Humanists UK member, ‘Omid T’, is bringing a case to also challenge the fact that those who are incurably suffering cannot access an assisted death. His case has had a preliminary hearing at the High Court, which is currently awaiting its decision.