The choice between living in hell and dying in peace

When I read The Irish Times report this week on the chronically disabled young Irish man who travelled to Switzerland last year…

When I read The Irish Times report this week on the chronically disabled young Irish man who travelled to Switzerland last year for an assisted suicide, my heart went out to that poor man and his family.

Two years ago, on January 20th, 2003, my husband Reg also travelled from the UK for an assisted suicide at Switzerland's Dignitas clinic.

Reg was 73, Catholic (like myself), and a retired maintenance worker. He loved the outdoors and firmly believed in living life to the full. He had been suffering from motor neuron disease (MND) for four years.

MND is a terminal illness which would gradually rob Reg of every movement of his body. People suffering this terrible condition typically choke or starve to death.

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Only weeks after Reg's diagnosis he was unable to move his arms, and he needed me, our daughter Jan, and carers to feed, wash and dress him. The disease progressed to his legs, and he became unable to walk or stand. He had to sleep and live in a chair, and was dependent on other people for everything. The muscles were wasting in every part of his body, including his throat, and the doctors told him he would have to have a peg inserted into his stomach so that he could receive food.

Mentally, Reg remained very astute and extremely strong-willed. In the early stages of the disease he had hoped a cure could be found but MND progresses at such a rate that he soon realised there was no hope.

Reg found this very difficult. We helped him willingly, but he was a proud and fiercely independent man, and he hated being unable to pursue his passion for golf.

As each day passed, his life became more unbearable; a living hell.

Palliative care did little for him. But he still had all his faculties - and, for the time being, his voice. He told us clearly and repeatedly that this was not the life he wanted.

Reg wanted to have a dignified and peaceful death. He knew what would happen to him, and he didn't want to suffer the last stages of the disease.

Because he had lost the use of his arms, he would need help to end his life. But while it is not a crime to commit suicide in the UK, it is a crime punishable by 14 years' imprisonment to assist a suicide. I understand this is the same in Ireland.

This is not the case in Switzerland, where it is not a crime to assist a suicide, provided that you are not motivated by selfish reasons.

Reg heard of an organisation in Zürich called Dignitas, which assists the suicides of foreign people. He asked me and Jan to find out how he could go there.

Jan and I were very reluctant for Reg to go to Dignitas. We loved him; we didn't want to lose him. When Dignitas sent the papers I put them in a drawer in the hope he would forget to ask for them. But Reg continued to talk about going to Dignitas. His condition worsened, and his throat started to go. He couldn't swallow food and he knew that his voice would go next.

That's when Reg started to panic, because he knew that he would have to verbally confirm his wish to die in order for Dignitas to help him.

Much as it hurt, it would not have been right to stand in Reg's way. I got the Dignitas papers out from the drawer, filled in the forms and got copies of all the medical records, marriage and birth certificates.

Reg telephoned Dignitas to confirm he wanted an assisted death and I sent them the papers together with Reg's membership fee.

Dignitas agreed that Reg could go and gave him a selection of dates. He chose the earliest date available. It was extraordinary to see the effect this all had on him. Once he knew he had a way out, it was as though a massive weight had been lifted from his shoulders. He said he could see light at the end of the tunnel.

Our journey to Switzerland was horrendous. By that time Reg couldn't hold his head up. He had to be manhandled on to the aircraft. But still, he was so relieved to get to Switzerland.

We met the Dignitas representatives in Zürich, and then a doctor talked in detail with Reg about his condition and why he wanted to have an assisted suicide. The doctor wanted to make sure Reg was making the right decision, and that he would not change his mind. I will always remember Reg's reply. Jan held Reg's head so he could look at the doctor and he said: "Doctor, I love life, but not the life I'm in."

Reg confirmed that he wanted assistance to die. He said: "I can't fight this any more. I just want to go to sleep."

Then we went to the flat in Zürich and he took the medication. It was a quiet, peaceful end.

On Tuesday January 21st, one day after Reg's death, Merseyside Police said they were obliged to investigate his death. At the time the police were unable to say whether Jan and I would face charges for assisting Reg's suicide, as that decision rested with the Crown Prosecution Service. We were facing 14 years in prison simply for helping Reg make contact with Dignitas and sitting with him as he died.

It took seven months for the police to confirm that the case was closed and no-one would be charged. We were never told why the authorities made this decision.

Since Reg's death, which attracted massive public interest, UK membership of Dignitas has shot up at an extraordinary rate and many more British people have made the same, sad journey to Switzerland. Barely a month goes by without more "Dignitas cases" being reported.

It seems certain that this trend will continue as long as parliament fails to change the law and terminally ill people, like Reg, are denied real choice about when and how they die. Based on our experience, I expect this will happen in Ireland too. A recent survey in the UK found that 50 per cent of Catholics would consider travelling abroad for an assisted suicide if they were suffering because of a terminal illness.

This prospect saddens and tires me. Reg always said he loved the UK. It breaks my heart that he was forced to travel to another country when he was so unwell, so that he could have a good death. Because Reg had gone to Switzerland, he couldn't even have a funeral service in the UK. He did not deserve this.

Before Reg died, he asked me and Jan to do everything we could to help change the law so that other people don't have to suffer like he did. We have worked with the Voluntary Euthanasia Society since his death to make this Reg's legacy, and already we are seeing signs of progress.

I hope the governments in the UK and Ireland will act quickly to put proper regulation in place so that terminally ill people can request medical assistance to die on their home soil, within careful safeguards.

As shown by the mounting number of people travelling to Dignitas, failure to act will carry a terrible human cost.