Dr. Stephen Duckworth:

I thank the committee for the opportunity to speak today. Before I start, I advise the committee that I am presenting my own views, and not those of any organisations I am involved with.

At the age of 21, 42 years ago, I broke my neck in an accident and am now completely paralysed from the neck down and doubly incontinent. Since then I qualified as a medical doctor, gained a PhD in disability and equality politics and an MSc in rehabilitation studies. From the time of my accident in 1981 until 2010 I was fervently opposed to assisted dying and wrote letters that were published, accordingly, in the disability press. I then joined the Commission on Assisted Dying chaired by Lord Charlie Faulkner. On the basis of the evidence we heard over that 12-month period, with additional specific commissioned research and visits to four locations offering assisted dying in other countries, I changed my mind. I changed my mind based on the evidence and only with stringent safeguards.

I now believe that the opportunity to celebrate ourto say goodbye to the people we love and to slip away peacefully on our own terms and avoiding unnecessary pain and suffering is the only feasible humane option.

I have been an electric wheelchair user for 40 years and enjoyed the choice and control over my life thatactivists, including me, have campaigned for, year after year. Yet some of those activists, who have considerable influence, are now arguing that I should be denied that choice and control over one of life’s most important events, that is, the dying process. They can exercise their choice but I cannot exercise mine. I am not terminally ill, but one day I may be. I am not scared to die but I want choice and control over how I manage that dying process. More than 206 million people live in places around the world where legislation enables them to do that but it is not an option in this country or in Britain. The UK and Ireland uphold a blanket ban on assisted dying despite three quarters of the public supporting this option being made available. Support for this type of law is similarly high, if not higher, among disabled people. I am proudly among that number of disabled people and believe that a safe and compassionate assisted dying law is long overdue.

I know that transparent and stringent safeguards for assisted dying legislation and protections for disabled people can coexist and work effectively. In Oregon, for example, a tightly restricted assisted dying law has been in place for over 24 years. A strident activist organisation of disabled people, Disability Rights Oregon, claims it has never received a complaint of abuse or attempted abuse under the Oregon Death with Dignity Act. Meanwhile, it has provided choice and compassion to a great many dying Oregonians and the legislation has worked so effectively that it has since been replicated across the US, in Australia and now in New Zealand. This is the model that I and many others believe is right for Ireland and the UK too. I do not subscribe to the approaches used in Canada, the Netherlands or Belgium, which have become much more liberal.

I also recognise that the current law contains far more risks for vulnerable people, and that includes me and millions of other disabled people. The reality is that prohibiting assisted dying does not make it go away and there are currently no workable safeguards to protect disabled people from coercion and pressure to use other means if the status quoremains. It simply forces dying people to suffer against their wishes or resort to unimaginable actions to control their deaths, often in secret, without the possibility of open conversation or exploration of other potentially beneficial options available through palliative care. It is not possible for me to forget the evidence we heard at the commission about a woman who resorted to drinking 3 l of bleach. It took her ten years to die in unbearable agony.

Currently, for those few terminally ill people who can afford it, there is Dignitas in Switzerland, but this involves putting their loved ones at risk of prosecution, travelling to a foreign country and often dying before they are ready because of the travel restrictions for severely disabled people on aeroplanes.

For those without the funds, some may be able to refuse treatment that is keeping them alive and be sedated while their disease consumes them, or while they starve or suffocate. However, this can involve a long, drawn-out death with no guarantee that suffering can be relieved. The only choice remaining is to take matters into their own hands. These deaths are often violent and painful, can involve multiple attempts, and cause untold devastation to those left behind. The doctrine of double effect caused by continuous deep sedation with opiates is also extremely important. It essentially renders patients unconscious until they die from respiratory failure.