Real lives

Court cases and Parliamentary Bills should not obscure the fact that the debate on assisted dying is about real lives, real people who face incurable diseases and intolerable suffering, who seek the comfort of knowing that they are in control, so that every day could be precious. FATE exists to support and comfort those who might otherwise face this choice alone.

We would like to acknowledge the support of our members and friends and pay tribute to campaigners who at great personal cost have sought to bring about a more compassionate and caring attitude towards those facing difficult end of life decisions.

Gordon Ross (1948–2016)

Gordon died from pneumonia aged 67. Gordon, a former TV producer, suffered from Parkinson’s disease. Although he never sought assistance with his own death he felt deeply the injustice that denied other physically incapacitated people such support at the end of their lives. And despite his own physically disability and numerous health problems he put himself forward to challenge in court the Lord Advocate to issue guidance on assisted suicide. Similar guidance has been issued by the Director of Public Prosecutions in England. Gordon said: “I believe that, as a disabled person, I am currently being discriminated against. Anyone else, in any circumstances, can choose to end their own lives at any time. Because of my disability that is something I am unable to do. I want to know what action the law might take were someone to assist me.”

His case was rejected at the Court of Session and again at appeal, following Gordon’s death. In setting out their arguments however the Appeal Court judges stated that an individual from Scotland who accompanies someone travelling to Switzerland with the intention of obtaining an assisted suicide would not face prosecution on their return. This is the first time such an explicit declaration has been made in a Scottish Court. Sheila Duffy FATE Convener remembers Gordon as "a doughty fighter who passionately believed the law should be changed. Despite his numerous health problems which would have floored a lesser individual, he worked tirelessly to support the assisted dying cause, and never lost his sense of humour.”

Kate Alexandra (1945–2013)

Kate died in Switzerland following a long history of medical problems starting with a stroke at the age of 25. Before her death at Dignitas in Zurich Kate wrote “I am going to Zurich in September 2013 for an [assisted suicide] with the help of Dignitas and a lot of support from FATE… I do not have a terminal illness but I have a condition that is getting worse and cannot be treated. The unbearable feature is severe pain which has been treated with opiates for nearly 40 years. Now of course I am tolerant to their effect and when the present drug regime fails completely my pain clinic consultant admits there is nothing he can do for me. I have had neurosurgery twice but both procedures failed to give me any relief. I decided 30 years ago that when I reached this stage I would end my life in some way so this is really not a sudden decision”. Kate had no family and managed to live alone for most of her life. On arrival in Switzerland her wheelchair was dropped from the plane and damaged. Kate managed to secure the services of a welder to carry out the necessary repairs. We remember her as a fiercely independent and resourceful woman.

Jean Davies (1927–2014)

Jean was a member of our sister organisation the Society for Old Age Rational Suicide. Before her death in October 2014 she wrote: "When the time comes, I will simply stay in bed and refuse food and drink, having made arrangements beforehand with my adult children and my GP. The advantage of doing this rather than 'letting nature take its course' include the fact that my (four) children can be there when I will spare them the long-drawn-out misery of possibly years of witnessing my slow deterioration. It will satisfy my wish for personal autonomy. It will release medical resources to the benefit of those who want to go on living".

In the final weeks of her life, Jean gave an interview to the Health Editor of The Sunday Times, and kept in touch with this journalist during this period. After Jean's humanist funeral on October 16th, The Sunday Times announced her death under the headline "Right-to-die Granny, 86, starves herself to death", and correctly calling her "an international leader in the assisted dying movement". Jean Davies was at the official founding of the World Federation of Right-to- Die Societies in Oxford in 1980. In 1984, she became the World Federation's Newsletter Editor (a post she held for four years). Then, after being its Vice-President, Jean became President in 1990 (for two years). Also, she was much involved in the early days of Right-to-Die Europe, and was also President of this regional body. She travelled the world, especially attending global conferences in Nice, Mumbai, Maastricht, Kyoto, Melbourne, Zurich and Boston.

Debbie Purdy (1963–2014)

Debbie lost the life she came to regard as unacceptable at the age of 51, following a 20 year fight for the right to die – and for others to legally assist her. Purdy was diagnosed with primary progressive multiple sclerosis in 1995. “Dying is a fundamental part of being human, she wrote, “and it’s time that we revisited a law that informs the way we spend the end of our lives.” She built a case that first went to court in June 2008 to ask the Director of Public Prosecutions, “quite reasonably, to explain when he would prosecute and when he wouldn’t. We were challenging the murky law not only for me, but for hundreds of others who wanted an answer to the question.”

In September 2009 the Law Lords ruled that the lack of clarity in the Suicide Act 1961 violated article 8 of the European Convention on Human Rights, which ensures the right to respect for one’s private and family life. The landmark victory did not result in a change in the law, but did ensure that the law on assisted suicide would now be clarified. Purdy spent her last year at the Marie Curie Hospice in Bradford. Without the funds to go abroad to an assisted-dying clinic in Switzerland, she saw starvation as the only legal option that remained for bringing her life to an end. Speaking from her bed at the hospice she said, “It’s not a matter of wanting to end my life. It’s a matter of not wanting my life to be this. And I’ve lived with MS for nearly 20 years.”

Margo MacDonald (1943–2014)

Margo, the indefatigable MSP, championed the reform of assisted dying legislation in the Scottish Parliament. After living with Parkinson’s diseases for more than ten years she passed away peacefully at home before her Assisted Suicide (Scotland) bill was defeated. Her friend Alex Neil MSP wrote: “She was the most human of politicians. She spoke with the head but always informed by the heart. She had an abundance of common sense whilst being one of the most imaginative and bravest of the Scottish political class. She dared go where the spin doctors would never allow others to tread. It was for all these reasons that the Scottish public loved Margo. She was one of them, not just another politician’s politician. Margo was larger than life. Her death leaves a huge hole not just in the Scottish Parliament but in the nation. There can only ever be one Margo. She is literally irreplaceable.”

Terry Wilson

Bette Wilson’s husband Terry travelled to Switzerland at the age of 94. He was unable to use his hands to write or use tools in his garden, his sight and hearing were failing and he could barely walk. Bette writes; “In the UK, we can end our animals' suffering, but not people's. The Swiss, Dutch and Belgians recognise that suffering can be worse than death and therefore give their citizens the right to choose to die. So Terry and I travelled to the Dignitas house in Switzerland. There followed ceremonial words, two drinks and he lost consciousness. He was rather sceptical and I could hear him thinking "this won't work". Terry’s death was a good death. The Dignitas application process had been rigorous and took four months: a detailed written submission with verifiable medical details, and new birth, marriage and residence certificates. By the time we were granted Dignitas' provisional right to an accompanied suicide (two interviews with a doctor in Switzerland are required); Terry was too physically unfit to travel by plane. Air ambulances refused to take him as under UK law the act of transporting someone could be defined as assisting a suicide. So we had a 12-hour gruelling journey in a Swiss ambulance. Terry's choice was expensive, but fortunately, fortuitously, he had earned it and could afford it. Because it was his decision, it was worth it to all his family.

“Afterwards, back in England, one of Terry's two sons, his gardener-friend, and I were interviewed by the Vulnerable Adult Investigation team. This investigation took place despite the overwhelming evidence from his medical people, the hospice psychologist and the Dignitas documentation outlining that Terry chose to die and was mentally competent make this choice. The Police had to continue using their limited, valuable time and resources to confirm what they already knew, time and resources that should be used to protect the truly vulnerable.

“I am passionate about preventing people from abuse or pressure to die, especially if they are vulnerable or frail. But people should be able to choose to die, with assistance if necessary. There is no easy, kind way to take one's own life but I am happy to share my husband’s good death with you all.”

Tony Nicklinson (1954–2012)

Tony died of pneumonia shortly after hearing that the High Court had rejected his application to be allowed to die with the help of his doctor. Nicklinson suffered from locked in syndrome, paralysed from the neck down following a stroke and able to communicate only by the movements of his eyes. His daughter Lauren wrote shortly after his death: “Maybe dad was extraordinary after all. He was never shy of a battle and did one hell of a job leading us to war. We fought for dad's right to die as a family and every hit he took, we felt too; every insult thrown at dad hurt us all. The opposition we received was predictable. We can see both sides of the argument and appreciate that for some, are real concerns with voluntary euthanasia but we are adamant that with mature conversation and logical reasoning, that they can be overcome.

Our campaign was, for so long, dad's lifeline and he was so determined to see it through. He was diagnosed with a chest infection and refused antibiotics, armed with the knowledge that he would die without treatment, evidence of how unbearable he felt his life had become. But this is not the end of us. Being able to choose the time and manner of your own death should be a fundamental human right for everyone, not just the able-bodied or those with just enough movement to do the deed themselves. So watch this space, because we will continue to campaign and fight.” The Court decided that the issues brought before it were properly for Parliament to decide. On Appeal the Supreme Court declared that the courts could decide that existing legislation was incompatible with Mr Nicklinson’s rights to respect for a private life and two of the justices expressed the view that the legislation was incompatible.

(Edited from: Tony Nicklinson's Daughter: Memory and Campaign for Legalised Voluntary Euthanasia Lives On)