When a loved one wants to die

The partner ‘One of the options is that I would die with Marie’

THE HOUSE

IT SEEMS AN unlikely day to choose to die. As I drive across the Swiss countryside, the early-morning sun lights up the neatly cut fields. In spite of my trepidation about our destination, it feels like a fine day to be alive. Yet on a different road, not far away, someone else is driving towards the same destination, with the clear intention of ending their life.

With me in the car is Ludwig Minelli, a human-rights lawyer and the founder of Dignitas, the Swiss organisation that helps people to legally commit assisted suicide.

My colleague Zoë Moore and I are researching A Time to Die?, our documentary on the subject, and Minelli has offered to give me a tour of the house where people from all over the world come to die. Minelli is well known in the right-to-die movement, but a quick internet search would reveal him as a somewhat ghoulish presence. Dr Death, some people love to call him.

Nearly all media coverage of Minelli describes him in this darkly emotive language, but I find him gracious and genial. Earlier, he had taken great care with making me a delicate cup of a rare tea while enthusing about his many other passions: orchids, cheese, Winston Churchill and astronomy. He seems – and I don’t think it was some cunning PR ruse – to be a man very much in love with life rather than a sinister harbinger of death.

We have set out early to see the house because a Dignitas “member” is coming to die today. Arriving at about 9am, we are greeted by two of Dignitas’s many volunteers. They are preparing the house for the arrival later in the morning and have all the cheery air of solid people who might help out at cake sales or other charity events. They are warm, efficient and reassuring.

The house is in a small industrial estate; it’s an odd location for such a poignant purpose. Swiss planning law would not allow Dignitas to operate in a residential area.

Minelli gives the tour. There are two comfortable rooms where one can be assisted to die. (The demand is such that two assisted deaths might take place simultaneously.) The house is comfortably functional; not luxurious but not the spartan clinic one might envisage. There are boxes of tissues, bowls of chocolates and candles about the place. There is a small kitchen, and a room full of wheelchairs, hoists and other medical equipment. Outside is an odd garden, nestled amid the industrial units, complete with a pool of goldfish.

It seems a slightly uninspired place from which to leave this world but then, I suspect, those who come here to die are somehow already on their way out of this life and may be less concerned with their surroundings than we might imagine.

Suddenly, Minelli tells me we must leave. The member has arrived an hour early. They have driven from Italy and were not due until 11am. This seems to upset Minelli’s exacting sense of timing and order. But as we open the door we bump into the man who has come to die. He stands in the porch with his wife, his son and his doctor. An aristocratic-looking Italian, the man recognises Minelli and embraces him, thanking him warmly for his Dignitas work. I hang back in the shadows, not wishing to intrude. But Minelli turns and introduces me.

The man who has come to die shakes my hand enthusiastically. “Ireland?” he says, lighting up. “What a beautiful country. But you have your problems now, eh?” So, as if neither of us had a care in the world, we stand and pass the time, making small talk about this and that for a few moments.

Wishing him well, I say my goodbyes and head back to Zurich. Meanwhile, the man who has come to die goes into the house and, presumably, readies himself for death.

A THIRST

An hour and a half later I sit in the warm sunshine overlooking Lake Zurich with Zoë. It feels odd that while we drink our coffee the man who came to die is, most likely, dead. He has perhaps sat in one of the functional armchairs that we saw. He would have been asked repeatedly whether he wished to die. He would have assented and then, in the company of but not assisted by his wife and son, drunk a small glass of liquid. He may have had a small Swiss chocolate to quell its bitter taste.

He would momentarily feel a ferocious thirst and crave water. But he would have been warned about this and been told that any water might reduce the efficiency of his lethal prescription. And then, with a shocking simplicity, he would die.

At that moment, as we sip our espressos, the local police might well be filling out the paperwork while the undertakers, with that undeniable Swiss efficiency, transfer his corpse into a hearse. The elegant Italian gentleman is no more, and that is no more than he would have wished for. Still, for Zoë and me, it just doesn’t feel right.

AN ACT OF LOVE

It seems odd to want to die. We have conjured with this thought many times over the past 18 months, during the making of our documentary. And yet, mostly, the people we have met haven’t seemed very odd at all.

But then, first and foremost, they all wished to live. They were, in no way, in love with “easeful death”. In most cases they were suffering from painful and debilitating illness and diseases and feared a terrible and horrifying end. The thought took hold that they might exercise some control over their demise.

An assisted death. An assisted suicide. Euthanasia. Peaceful pills and exit bags. Taking the plane to Switzerland.

Some years back I had begun to notice Irish people talking openly about taking the plane to the home of the cuckoo clock. But with a bit of gallows humour. A devil-may-care attitude. So I wondered if it revealed a more serious intent.

When we embarked on the film it seemed to be an idea that was gaining traction. Yet only six Irish people have died at Dignitas, compared with 164 Britons. (Worldwide research indicates that an assisted death will always remain the choice of an independently minded minority.)

But what of those who wish to die at home? In Ireland? Dr Libby Wilson, a compassionate and matter-of-fact GP who founded the Scottish organisation Friends at the End, told us that she usually has a couple of people in the Republic “on the go, as it were”.

Wilson, one of the leading lights in the campaign for family planning in Scotland during the 1950s and 1960s, supports and provides information to people who wish to end their lives. Working from the kitchen table of her elegant Glasgow home, she often takes calls from Irish people looking for help.

It has proved exceedingly difficult to talk on the record to Irish people who wanted the right to die. Although suicide was decriminalised in 1993 it remains an offence to assist, counsel or procure the suicide of another person, with a possible jail sentence of 14 years.

In the coming weeks this law will be challenged in the High Court by two of the people featured in the documentary, Tom Curran and his partner, Marie Fleming. Marie has multiple sclerosis and wants the right to an assisted death at home in Co Wicklow. Tom has agreed to help her, even at the risk of prosecution. It is an act of love, he argues.

But most people considering an assisted death live in a dark netherworld of uncertainty. We have met many of them. It feels like a strange underbelly of society, this world of the right to die, and we had long meetings in out- of-the-way hotels and coffee shops, in dusky car parks and on stretches of urban wasteland.

Mostly, those we met were ordinary people who found themselves in an awful predicament, people trying to do what they saw as the right thing for themselves or for those they loved. At odds with the law and, sometimes, at odds with their own family.

Many of them did not really understand the law and yet had nobody to ask. Whatever one’s view of this challenging and morally intricate subject, you had to feel for these people, who had become fugitives in their own land, as they grappled with their fate, often while in huge physical discomfort and pain.

It’s difficult too, on a far different scale, to make a documentary about it. Our subjects remained in fear of the law and the possible repercussions for them or their loved ones if they spoke openly. We also had to remain immune to the charge that we were in some way culpable of assisting or counselling those we met. Even knowing about something could arguably be incriminating.

Against all this, those whom we did meet were desperate to be able to talk to anyone with an open and sympathetic ear. Many of them, like the mental-heath campaigner John McCarthy, spoke passionately about their wish to die at home in their bed in Ireland, surrounded by those they loved. They do not want to slink off to Switzerland. John had been diagnosed with motor neuron disease and wished, at the very least, to have access to information about how he might choose to end his life. As he faced what he termed “a horrible death”, he strongly resented what he viewed as the paternalism of those who would not even provide him with the information to allow him to make up his mind.

Many spoke of the desire to have either the means to or the information on how they might end their lives, if living became unbearable. It would be a sort of comfort to know that it was possible, even if they hoped never to need it.

However, John never needed to make his decision. He died peacefully from respiratory failure at home in Cork, not long after we filmed with him.

‘DO YOU WISH TO PROCEED?’

Not far from John McCarthy’s home lives another man trying to cope with severe degenerative joint disease. Brave, intelligent and vulnerable, John Allen is exploring his options. He is a member of Exit International, the Australian right-to-die organisation that has made inroads in Ireland. It is run by Dr Philip Nitschke, a brash, shoot-from-the-hip advocate of euthanasia. His early “deliverance machine”, now on display at the Science Museum in London, is a computerised death machine that asks a stark question: “If you press this button, you will receive a lethal injection and die in 15 seconds. Do you wish to proceed?”

Nitschke has run a number of controversial workshops in Dublin. Usually, the first part is open to the media and results in a scrum of reporters and photographers descending on those attending. It seemed to me a distasteful circus where highly vulnerable Irish people, who view these workshops as their only source of information or support, are subjected to this cruel intrusion. John Allen was one of these.

Today John lives with considerable pain. Some days he just can’t face it. His home is like a warehouse of medication. He is a man marked by pain, but not all of it is physical. John is also a victim of child sex abuse. (Curiously, among those we met, John was not alone in this.)

But of course one wonders how John’s experience of abuse affects his wish to die. He remains unsure. It’s an honest answer, no doubt, but a reminder too that there are no simple answers in this right-to-die business.

No simple answers. No sooner had we met someone whose claim to personal autonomy seemed irrefutable than we would interview someone else who would cause us to question the whole story once again.

Dr Regina McQuillan is a palliative-care consultant and outspoken opponent of assisted death and euthanasia. McQuillan is also medical director of St Francis Hospice in Dublin, where some years ago we made a series called The Hospice. Her work, and that of the hospice movement, constitutes care and compassion at their best. She is sympathetic to those considering an assisted death but is concerned about the implications for the whole of society if it were ever to be legalised. She points out the dangers of the “slippery slope”, that life would somehow be cheapened. That the vulnerable and the disabled would feel less valued.

SAD AND LONELY

In Belgium we met two respected palliative-care physicians, Dr Arsene Mullie and Dr Jan Berheim, who admitted to illegally euthanising patients who requested it in the days before legalisation.

Unusually, the Belgian palliative-care movement and right-to-die movement developed alongside each other. Today, following legalisation in 2002, both palliative care and euthanasia are available alongside each other in the mostly Catholic-run public hospitals as part of an integrated system of end-of-life care.

Under Belgian law there two key preconditions: incurable illness and unbearable suffering. The euthanasia usually takes place in the presence of friends and family, often accompanied by prayers, music and even champagne.

In the city of Hasselt Fr Marc Desmet, a kindly palliative-care consultant and Jesuit priest, brought us to meet an older woman, Delphine Van Hoebrock, the evening before she was euthanised. He held her hand gently as he checked whether she had any last doubts.

She seemed remarkably certain and sanguine about her choice, although I couldn’t help sensing some loneliness too. It was both emotionally charged and strange to spend time with Delphine on the eve of her chosen death. Heartbreakingly sad also, even though we knew her only fleetingly. Even an assisted death is a sad and lonely affair, it seems, no matter how much it is desired.

In search of moral guidance we travelled south, to the quiet village of Trosly-Breuil, in northern France. Here the Catholic philosopher Jean Vanier has founded l’Arche, a worldwide community that cares for people with intellectual disabilities.

Vanier, whose guiding principle is the intrinsic value of each and every life, is an opponent of assisted death. He stresses the need to avoid terms such as right and wrong, to question the wider community and ask where the love, care and support are. Rather than asking for assisted dying to be legalised, he argues, perhaps we need to ask why some people face death so alone and unloved. Later, walking through the beautiful village at dusk, I can’t help thinking of Delphine.

But I am also reminded of Margaret McEvoy, a lovely former teacher from Clane, in Co Kildare, who has suffered with multiple sclerosis for nearly 20 years. “You are given one life,” she told us. “Why would you want to end it?”

DESTROYING A TABOO

Ludwig Minelli of Dignitas is fond of quoting the English philosopher John Stuart Mill: “Over himself, over his own body and mind, the individual is sovereign.” Minelli takes this talk of personal autonomy a step further, however, and on a later trip to Zurich he proffers a radical and shocking thought over a cup of tea, carefully chosen from his collection of fine teas. He believes that if we accepted, as a fundamental principle, everyone’s right to die by suicide, we would destroy the taboo surrounding it and therefore potentially reduce the numbers of tragic young deaths that so haunt this country. If people were able to discuss openly and honestly their desire to die, then perhaps we might be able to lead them away from it and back towards a love of life.

He tells the tale of a young German man who called to his home one night claiming that he wanted to die. Minelli did not try to dissuade him but outlined his options and talked with him. He asked him to stay for a few days to consider it all. They ate ice cream, visited Zurich Zoo and talked about astronomy. By the end of his stay the man had resolved not to take his own life. He is still alive.

My most potent memories of our days making this documentary are, however, the things we cannot openly discuss. The stories that never made the film. The loneliness of those exiled by their views, sometimes in silent defiance of those who love them. Others who live in fear of prosecution for even contemplating doing something they might view as an act of profound friendship or love. Those who send off for deadly prescriptions from Mexico and China or who try in vain to travel to Switzerland to die.

I’m deeply frustrated that we were unable to give a voice to some of these people. Sorry that we have, in some way, failed them, these people with nowhere to turn and nobody to listen.

Sometimes, while driving into Dublin, I pass a smart apartment block where an Irish woman died by suicide after cancelling a journey to Ludwig Minelli’s Dignitas house. She changed her mind after the Garda correctly informed her friend that the friend would be liable to prosecution and imprisonment if she were to assist or accompany her then infirm friend to Switzerland. The woman’s subsequent suicide at home in Dublin is now under investigation.

Driving past where she died, sometimes, I think that if she had to decide to end her life, then I would prefer her to die in capable Swiss hands, surrounded by her loving family and friends, rather than endure a squalid, furtive demise in her apartment.

THE MINORITY

I think i would have preferred her to die in capable Swiss hands, surrounded by friends and family, rather than in her apartment.

After all this, I don’t know what I believe. It is a remarkably complex question, ethically, morally and legally. But I also know that it is a deeply individual matter and I would be loath to judge anyone, whatever their views.

Those who wish have the right to choose the day of their dying remain a minority. But they deserve to be heard. Whatever debate emerges in the coming months and years, they are worthy of our attention and our respect. We have made the mistake of turning our backs on people in the past, and I hope we don’t make that mistake again.

A Time to Die? is on RTÉ One on Monday at 9.35pm

The partner: 'One of the options is that I would die with Marie'

Tom Curran’s partner, Marie Fleming, has multiple sclerosis and wants the right to an assisted death at home in Wicklow.

“The future was something we always spoke about, and what Marie’s wishes would be when the MS got much worse,” says Tom (right, with Marie).

“Five years ago Marie realised the MS was getting worse. We made contact with Switzerland, we joined, we got approval and we booked to go to Switzerland. Marie had decided the time was right.

“We researched how we might satisfy her needs at home . . . I said I would do whatever was necessary if the time came that Marie did want to die, that I would help her. So actually by deciding that I would break the law, we have kept Marie alive .

“One of the options is that I would go [die] with her. That would save everybody the trouble. And it would be a relief to the family that they wouldn’t have to go through a prosecution and everything else. It’s an option.”

Right to die: The law in Ireland, Belgium, Switzerland

Most countries have decriminalised suicide, but most countries treat assisting a suicide as a crime and punish it to varying degrees. The Republic and the joint jurisdictions of England and Wales are typical in refusing to exempt people who assist in suicide from prosecution.

In Ireland the Criminal Law (Suicide) Act 1993 states that anyone who aids or procures the suicide of another is guilty of an offence punishable by imprisonment for up to 14 years. The only case in which a prosecution was raised was in 2002, when an American Unitarian minister, George D Exoo, travelled to Ireland and was present at the death of a woman, Rosemary Toole Gilhooley, who died in what was believed to have been an assisted suicide. Her inquest heard that she had paid Exoo and his partner, Thomas Gurrin, $2,500 for assisting her. He said they had merely said prayers with her. An attempt to extradite Exoo in 2007 failed, and he declined to attend the inquest.

It Britain it is also a crime to assist a suicide, but the British director of public prosecutions can decide whether it is in the public interest to prosecute, and he must authorise such a prosecution.

Assistance is legal in Belgium and Switzerland. In Belgium a law passed in 2002 permits doctors to help euthanise patients who, during a terminal illness, express a wish to hasten their own death. This is possible for Belgian residents only.

This restriction does not apply in Switzerland, where Dignitas helps foreigners who travel to the country for that purpose. Swiss law stipulates that the individual must be of sound mental health, make the choice of his or her own free will and carry out the final act him- or herself; in addition, the assister must have no motive of gain. There is no legal requirement for a doctor to be present, but all deaths must be reported to the police and those involved interviewed to ensure they have not broken the law. Carol Coulter, Legal Affairs Correspondent

The sufferer: 'I have investigated how I might end my life'

John Allen, who lives in Cork, has a severe degenerative joint disease. He is a member of Exit International.

“If somebody who’s well, and they are trying to impose something they cannot understand, the question you ask immediately is, ‘Do you know how you would react if you were in that position?’ And if they say, ‘I would know how I would react,’ I would say to them, ‘You don’t know. How can you know?’

“I’m now ill, and I see that line of mortality, that gap coming closer and closer to me. And I’m feeling sick all the time. Some days, I’ll be honest, you go to bed and say, ‘I wish I never woke up,’ yet there’s other times when you wake up and say, ‘God, it’s great to be alive.’

“I have investigated ways of how I might end my life. . . I’m in possession of a publication that gives a person the information on how one might end one’s life. I’m debating at the moment which route to take, and I’ve narrowed it down to one or two.

“Deep in anybody’s heart, nobody wants to die.”