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I couldn't let him die alone

29 June 2009 - The Times

Four years ago Laura McDaid made the hardest choice of her life: to accompany her former boyfriend to Switzerland's Dignitas clinic to escape the pain of MS.

It was lunchtime. There was nothing to distinguish the apartment block or the plain room within it. The colours were neutral, the furniture a single bed and a table holding a vase of flowers. On the bed a 30-year-old man drank a draught of liquid. It was bitter so immediately afterwards he had a piece of chocolate.

"I lay beside him and chatted," says Laura McDaid. "I said, 'How do you feel?' He said, 'Happy'. I think he did. I hope he didn't say that just for me. After about a minute he stopped talking."

By the time Martin Barry took his life in the clinic run by Dignitas in a suburb of Zurich his physical condition was poor. In 2002 doctors had diagnosed an aggressive form of secondary progressive multiple sclerosis; by April 2005 he was unable to walk, he had tremors, his eyesight was failing and he had an infected bedsore on his back that embarrassed him because of the smell. He was in great pain, he was incontinent and he knew that living alone with a visiting carer would not be an option for much longer. Faced with a choice between further deterioration over perhaps another year in a care home, and managing his death, he chose the latter.

"He didn't want to die in Switzerland, in an unfamiliar apartment," Laura explains. "He wanted to die at home with his family and friends around him, but that wasn't going to happen."

Martin lived in Cork, Ireland, where the law on assisting suicide is similar to the UK. At the Dignitas clinic 115 Britons have ended their lives and although it is illegal to help terminally ill people carry out the act painlessly, none of those who have accompanied them have been prosecuted.

Laura accompanied Martin because she respected rather than condoned his choice and because she did not want him to die alone. She stresses that in talking about his illness and death she is not advocating assisted suicide or euthanasia. Rather, she is telling a story - for her a profoundly emotional one - that has had such a searing effect on her that it has become the foundation of an eloquent - and fictional - play that she has written for Radio 4.

She met Martin in January 2001; both were newspaper journalists working in Dublin. She was 23 and had grown up in a supportive middle-class family in Coleraine, Northern Ireland. Martin was adopted and had grown up on a council estate in Cork and, at 26, he was handsome and had the force of someone who wanted to be noticed. He challenged Laura; she was entranced and soon they were in love and living together.

"He was a huge character," she says, speaking in Belfast where she now works for the BBC. "He had views on everything, he was passionate about journalism and he was happiest when he was the centre of attention. He was funny and he battled MS with humour and strength."

The diagnosis was a shock. He had tried to ignore, and even deny, symptoms over several years. "I could see him losing weight, he'd sometimes lose control of his bowels and bladder, he was thin and frail and had trouble walking," Laura says. "He was in a wheelchair within three months. The prognosis was pretty bad but he tried to be upbeat. I was his carer and we were both able to work part-time. But it got worse and I found that emotionally very hard."

In 2004 Martin was told that he probably had two years to live and that it was likely that, having lost the ability to swallow, he would choke to death. "He got frustrated not being able to do the things that he loved doing," Laura says. "He was gregarious, he loved being out, loved a drink. He couldn't do any of that any more." Neither could he be active in the profession from which he had drawn his sense of identity. "He wrote when he could but he didn't have the energy to go out on stories. He felt that everything around him was just as it used to be but that he was an outsider looking in on it. He didn't feel part of the world as it was."

This sense of isolation affected both of them. Some friends found his disability hard to witness, and Laura blames herself for her inability to support him full-time. "He got more and more depressed and that put a strain on us. We already had a volatile relationship - he was a volatile character! - and our relationship became more like carer and patient than the way it had been. I felt that I didn't have anything to talk about because we were living in this enclosed world.

"I left in April 2003. I felt guilty because I was leaving my best friend to cope with that, and I loved him. He was so angry at me and felt betrayed but he came to realise that we hadn't been helping each other. We became much better friends after that."

Martin attempted suicide by overdosing with pills and failed. About nine months later he told Laura that he planned to die at the Dignitas clinic. Sensing that his decision was based on his emotional state rather than his physical condition, Laura was unable to accept it. He needed counselling, she believed, though none was available at that time. In January 2004 he travelled, alone, to Zurich. "I felt I'd let him down," she says. "No matter what my views were on the issue I had let him go to Switzerland and he was going to die on his own."

At Dignitas a doctor asked Martin if he was certain that he wanted to end his life. He wasn't. He phoned Laura and told her that he had changed his mind. "When he came home he had a new zest for life," Laura says. "He said, 'I'm going to live this life as best I can until I need to go back there'. Just knowing that it was there for him, knowing what was going to happen, that he had an element of control, was a huge comfort. He was a changed person, back to the old Martin."

Over several months Martin developed a telephone friendship with Ludwig Minelli, the human rights lawyer who founded Dignitas - until Martin received a vast phone bill that his disability allowance couldn't meet and stopped phoning. Minelli contacted him to ask why he hadn't been in touch. When Martin explained, Minelli sent him a cheque for €1,000 (£850) and told him to pay off the bill and stay in touch.

Martin's improved emotional state made Laura revise her view of his decision to take his own life. "I realised that the decision wasn't mine, it was his to make. This was something he was going to do whether I agreed with him or not. It was just a question of could I let him die alone? I couldn't let him do that."

In October 2004 Martin contributed to a radio debate on assisted suicide, announcing his intention to end his life at the Dignities clinic.

"MS happens in ten stages. I went from stage one to stage seven in less than five years," he explained. "I did not want to end up in a nursing home requiring constant care in my thirties. I did not want to endure a painful, cruel death propped up with morphine. My choice ... has released me from the terror of facing a horrible and painful death. It is an act of self-deliverance."

When he returned to Zurich six months later, Laura went with him. On the evening of their arrival, they had a convivial dinner with Minelli and his partner. The next day Martin met a doctor at the apartment and asked Laura to leave while he signed the consent forms - for legal reasons he did not want her to witness it. She was distressed; Martin was calm and happy, Laura says.

As he had requested, after his death she phoned his mother, who knew of his intention though not the timing. A devout Roman Catholic, his mother was upset and disturbed by the nature of his death, though she has since come to understand his decision, Laura says. Laura knows that she may be questioned by police as a result of talking about Martin's death, but her decisions to write about assisted suicide and to talk honestly about Martin have been supported by her husband, whom she married last year. "I wrote this play because I had this experience," she says. "I didn't write with any agenda.

"Before I met Martin I had a rosy view of the world. What happened to him made me see that it's easy to forget about disabled people. And anybody who sees assisted suicide in black-and-white terms isn't putting themselves in the position of either the person who is at that stage and has decided they want to go, or the vulnerable person who feels they should make other people's lives easier and is put under pressure to go. I think it's a grey area."

Afternoon Play: Dignity, Radio 4, 30 June at 2.15pm

How Dignitas operates

Dignitas was founded in 1998. By the end of 2008 it had almost 6,000 members and had assisted in the suicide of 947 people - 115 Britons have now died with its help. It works with clients who are terminally ill, who have an "unacceptable incapacitating disability" or who are suffering unbearable and uncontrollable pain. Some doctors have expressed concern that some of the people who have used the service were not terminally ill and had conditions that could have been treated.

The founder, Ludwig Minelli, likes to stress that for many members knowing that an assisted death is available to them is enough. Speaking in Amsterdam in March he said: "About 70 per cent of members ask for a green light but, having been given it, most people never contact Dignitas again."

Dignitas,a non profit-making organisation, charges clients a fee of up to SwFr10,500 (£5,900) for an assisted death. This covers administrative procedures, a consultation with a doctor who prescribes the drug used for the suicide, rental of the Dignitas premises and funeral and burial or cremation services. The joining fee is SwFr200 (£111); annual membership is SwFr80.

Author: The Times

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