RICHARD Selley, featured on the front cover, died on Friday, September 6, at the Dignitas clinic in Zurich. It was an honour to campaign with Richard. His intellect, wit and compassion shone, even as his body faded. As Richard’s motor neurone disease (MND) progressed he lost many things – the ability to walk, to talk, to eat, to even push his glasses up his nose. But one thing that remained was his powerful ability to express his thoughts, feelings and beliefs through his writing.

Through his blog, his words reached thousands of people. They prompted an outpouring of support and good wishes. They made people think.

Richard sent a very clear message to 129 people in particular who sit in the chamber of our Parliament: change the law that has prevented me dying peacefully in Scotland.

I made a promise to Richard to take his message directly to our MSPs and to keep the campaign firmly on the Scottish Parliament’s agenda. In the weeks and months to come I will be taking his message to Holyrood. I will also take the evidence that our lawmakers need to bring about the changes Richard so desperately wanted to see. Our recent research tells the stories of people who have lived and died under the injustice of the current law. It quantifies the suffering that the law has created and demonstrates that dying people and their families are in effect the collateral damage of a blanket prohibition on assisted dying. It shows that the current situation is broken and unsustainable and that even with the best palliative care 11 Scots a week – almost 600 a year, at a conservative estimate, are dying badly.

Eleven people a week dying in agony is 11 too many.

I wish to be very clear that this research in no way diminishes the excellent palliative care that takes place across our country every day, nor the people who give so much of themselves to do this fantastic work. It does not negate the importance of such care – on the contrary, it calls for more investment in and access to it.

Opponents of assisted dying are often keen to present a false dichotomy between assisted dying and palliative care, to have you believe that it is an either/or situation. This is simply not the case.

Our dying people need both excellent end of life care and the choice of an assisted death. But the research does show that, no matter how good palliative care is, it has limits and those who are beyond its limits need choice.

In my role for Dignity in Dying Scotland there are three things that people often say to me. The first, and most common, is that we would not let our pets suffer in the same way that we do ourselves. Secondly, people remark on the difference between preparation for the start of life and the end. They note the distinctions between the information and help you receive planning for a birth compared with the lack of information regarding a death. They point to the knowledge, choice and control you have over a birth and the way that it helps to reduce fear, trauma and actual harm. Then they say that the hand of history will judge us – that we will look back and wonder why we allowed such suffering to occur.

The National: Richard Selley, pictured with wife Elaine, ended his life at DignitasRichard Selley, pictured with wife Elaine, ended his life at Dignitas

Our research, The Inescapable Truth about Dying in Scotland, chronicles that suffering. It is not an easy read. It draws on the experience of bereaved relatives and healthcare professionals who have witnessed extreme suffering at the end of life and explores the views of dying people who live with the knowledge of the suffering that may await them.

In producing the report we conducted polls of healthcare professionals and the public in Scotland. We found that 46% of Scottish healthcare professionals have experience of caring for someone who has suffered at the end of life despite receiving palliative care, and 41% of Scots witnessed someone they love suffer unbearably towards the end of life. One palliative care consultant described the condition of his patient as “utter degradation”.

We also look at grief. Complex grief has symptoms similar to post traumatic stress disorder (PTSD) and can occur when a death has been traumatic. People we interviewed attributed their own depression, anxiety, panic attacks, social isolation, nightmares, guilt and fear to the manner in which they saw their loved one die.

Our polling found that only 6% of Scots think that the law prohibiting assisted dying is working well. When only 6% of people living under a law support that law, surely it is time to change it?

In the report people talk about their desire to go to Dignitas and also about the barriers in their way. These are financial, emotional and practical – people worry that they would not be well enough to travel. These barriers cause anger and frustration during what is already a very hard time. Some people choose to hasten their death by voluntarily stopping eating and drinking (VSED).

It is telling that none of the people interviewed who work in healthcare considered stopping eating and drinking to be a satisfactory option for dying people.

The report covers people’s experiences of withdrawing treatment, palliative sedation and also “double effect” – where medication is administered with the intention of relieving suffering even if it results in the patient dying. Some 62% of Scottish healthcare professionals believe there are circumstances in which doctors and nurses have intentionally hastened death as a compassionate response to suffering at the end of life.

It is the lack of choice, for both people experiencing suffering and the doctors and nurses who wish to be able to provide a more compassionate response, that must change.

In years to come we will look back at how we allowed people to suffer as they die. We will wonder why we tolerated it for so long. The suffering detailed in The Inescapable Truth about Dying in Scotland is difficult to read.

The people, like Richard, who told us about the suffering they have experienced and witnessed did so in order to bring about change. We owe it to them to act.

Ally Thomson is the director of Dignity in Dying Scotland