Scope Chair Alice Maynard responds to the Commission on Assisted Dying

The Commission on Assisted Dying reported back its findings and recommended that under certain circumstances people with terminal illnesses should be allowed assistance to end their own lives.

The Commission was chaired by Lord Falconer, a barrister and former justice secretary, and comprised of doctors, specialists in palliative care, an ex-police commissioner and a former president of the General Medical Council. It’s worth noting that Lord Falconer, as a policeman might say, ‘has previous’. In a past life he introduced an amendment to an act of parliament in order to change the law on assisted suicide. Indeed, it was striking how many of those on the Commission had pre-established views on the issue.

It’s also worth revisiting how and why the Commission itself came into being. It was funded by pro-euthanasia author Sir Terry Pratchett, who has Alzheimer’s Disease, and Dignity in Dying, and they both campaign for the law to be changed.

When I met the Commission – as chair of Scope – I did so in order to state our position on the issue of assisted suicide and to ask the Commission some questions about its role, remit and composition. We took this approach because the Commission has not been sanctioned by Government.

To boil their conclusions down, if you have less than a year to live, are over 18, have the mental capacity to make a decision, and have come to the conclusion entirely by yourself and voluntarily then, with the certification of two doctors, you should be allowed assistance to take your own life.

This debate touches on hugely complex and emotional issues. There are passionate voices on both sides. While the Commission acknowledged this in its research – and some of the discussions in the report are useful and interesting – most of the concerns raised by disabled people seem to have fallen by the wayside in its recommendations.

There is a lot about these recommendations that is unsettling and arbitrary.

The report acknowledges the concern that a change in the law might lead to people being pressured into taking their own lives – whether pressure from relatives, from professionals or as a result of more indirect prejudices about disabled people such as that a disabled person’s life isn’t worth living. While the report underlines the need for checks to ensure that people aren’t put under pressure to end their lives, there is scant detail on how this can be done. A fear of losing these safeguards one of the major concerns for disabled people. But the recommendations are paper-thin on this crucial point.

The report makes the distinction between those who are terminally ill, and those who are disabled. The Commission excludes from legalised assisted dying those with long-term impairments that are not terminal. So the point at which a disabled person becomes someone with a terminal illness is going to be an important consideration.

Many impairments affect people’s life expectancy to varying degrees. The line between a disabled person whose life-expectancy is shortened and someone with a terminal illness can often be blurred – and indeed determined by the person’s own approach to disability – making this distinction unworkable in practice. Prognoses change, people’s circumstances change, and it is notoriously difficult to predict how long someone has to live. To make matters worse, drawing the line at a year can increase the uncertainty of any such prediction.

The Commission rightly notes the importance that health and social care systems have in the lives of many disabled people. And sadly, when it comes to supporting disabled people and giving them the opportunity to live the life they want to lead, these systems often fall short. Many disabled people – including those with terminal illnesses – are not able to live their lives to their full potential, and in an era of swingeing welfare cuts that is likely to get worse.

These issues are important considerations and, though their consideration in the report is welcome, they do not come through strongly enough in the recommendations.

Much of my concern is wrapped up in how society views disabled people. Many believe our lives are not worth living or of no worth to society.  And in these economically constrained times, we can be seen as a burden on society and on our families and communities.  Sadly, professionals who are there to support us sometimes share those misconceptions about our value.  A recent report by the charity Mencap revealed that there have been 74 deaths in NHS care and there is on-going discrimination within the NHS of people with learning difficulties. This highlights an issue with the report’s ‘safeguards’, which rely heavily on the objectivity of doctors and social workers.

I believe that disabled people’s lives have intrinsic value and that, as disabled people, we should be able to get the support we need to live our lives to the full.  That requires protection in law, which is the ultimate safeguard from pressure to end our lives prematurely.