Helping Dad die: a daughter’s story

My father first asked me to help him die in February 2012.

“I gather there’s somewhere in Switzerland I can go,” he said. “Can you look into it for me?” I promptly burst into tears, and so did he. But while seeing him cry was shocking, his request was not. I was just surprised he had not asked me sooner.

For nearly a decade, my father had been suffering from Primary Lateral Sclerosis (PLS), a rare and slow form of motor neurone disease. It is not a terminal illness. “Something else will get you first,” said the consultant who finally diagnosed it, as my father turned 70. But PLS is incurable, untreatable, degenerative and – as my tall, active, generous and loving father discovered day by day, month by month – one of the cruellest diseases imaginable.

For the first few years, the physical changes were subtle. His fingers began to stiffen but he could still hold a book, phone, fork or glass and use a pen, the remote control or his computer.

His ankles became swollen and his legs unsteady but, with a stick and an arm to lean on, he could totter from the house to the garden, or from the front door to the car for a drive to his favourite pub through the countryside, where he once walked for hours. And, for a while, he still took pride in his appearance and still found pleasure in friends, food, wine, books, opera and bridge.

But as my father reached his late seventies, despite my stepmother’s valiant efforts to keep life as normal and enjoyable as possible, the disease closed in on him. Increasingly prone to falling, he left the house less and less, his mobility restricted to a precarious shuffle between rooms. While his legs and ankles continued to swell, the muscles on his upper body slowly wasted away: his arms became weak and limp, and one day I realised I could see his shoulder blades through his shirt and cardigan. He eventually swapped trousers for tracksuit bottoms, as they were easier to “deal with in the bathroom” – one area of his life where he clung to his independence with grim determination, even when he could no longer wash, dress or shave without help. His head began to droop, his speech was sometimes slurred and difficult to understand. Terrified of anything that might further jeopardise his balance, he stopped drinking wine. And a man who had enjoyed nothing more than a long, lively dinner now struggled to swallow tiny, pre-cut pieces of food between frequent and violent coughing fits.

Neither did the nights bring him relief. He could no longer lie down in bed but slept fitfully, propped up on pillows, plagued by pains in his heels, breathlessness and terrible feelings of anxiety that he could not escape. During my stepmother’s occasional breaks away, when my sister or I would move in and look after him, I most hated leaving him at night. I would lie in my bed, thinking of him trapped in his own, barely able to adjust a pillow or even reach for a drink, despite the dark, dreary hours ahead. Promise you’ll call out if you need me, I would say, but I knew he never would.

I marvelled at his courage and wondered how he could bear it – that daily battle to carry on, knowing that life would only get harder. And then he decided that he no longer could.

Where can Britons go when they want help to die? Sadly, nowhere in their own country, despite the fact that the world’s first right-to-die organisation, the Voluntary Euthanasia Society (VES), now called Dignity in Dying, was founded in England in 1935. Since then there have been 10 attempts to legalise either voluntary euthanasia (when the patient asks a doctor to inject a lethal drug) or assisted suicide (when a doctor writes a prescription for a lethal substance for the patient to take themselves). But helping someone to commit suicide remains a crime punishable by up to 14 years in prison in England, Wales and Northern Ireland and subject to prosecution under homicide laws in Scotland.

Head just a few hundred miles to the east, however, and the contrast could not be starker. Had my father lived in, say, Utrecht rather than the West Country, he could simply have turned to his GP for help. Both doctor-assisted suicide and voluntary euthanasia have been available since 1981 for Dutch people with a terminal illness or suffering severely from an incurable disease, and account for about 3 per cent of deaths in the Netherlands.

Other European countries have followed the Dutch lead: doctor-assisted suicide is available for the terminally ill and people with conditions like my father’s in Luxembourg and Switzerland, as is voluntary euthanasia in Belgium. And in the US, four states (Washington, Montana, Oregon and Vermont) offer doctor-assisted suicide to the terminally ill. Yet only one country is willing to help terminally ill, severely disabled or elderly and seriously ill foreigners – and, with the assistance of one of the three organisations non-nationals can access, more than 250 Britons have now died there. My father was right: he would have to go to Switzerland.

…

A few days later I forced myself to start “looking into things”. I began by searching online for Choosing to Die, a BBC programme made by the author Terry Pratchett who, since being diagnosed with Alzheimer’s in 2007, has become a right-to-die campaigner.

I had not been brave enough to watch it when it aired in 2011 because I knew its main protagonist, hotelier Peter Smedley – whose death in Zurich facilitated by the Swiss assisted-dying group Dignitas was the focus of the programme – was suffering from motor neurone disease. I also knew that almost 900 viewers had contacted the BBC to complain about it, among them four peers, who had described it as “repugnant and disgraceful”.

Yet as I watched Smedley drink a dose of lethal barbiturates and succumb to a quick, peaceful and much-longed-for death, I felt overwhelmed by gratitude and relief. Here, at last, was a way to ease my father’s suffering; here, finally, were kind, capable people who understood his plight and, if the time came, would be willing to help. I sent my father the link to the Dignitas website.

We did not discuss Dignitas again for a few months but he must have set to work almost immediately. Initially he had to join Dignitas and provide medical details and a lengthy personal statement. Later on, I helped him gather marriage, birth and divorce certificates, explore travel options and send money across Europe. (My stepmother could not bear to get involved in planning my father’s death, having focused for so long on enhancing his life.)

Our bible-cum-checklist was the excellent UK Guide to Dignitas written by the Scottish campaign group Friends at the End (Fate), which at one point observes: “Travelling to Switzerland to end one’s life is arduous and demands determination . . . Practical difficulties may arise and need to be sorted out quickly. A sense of humour is a great help.” At times, the bureaucracy felt overwhelming: “Don’t worry, Dad,” I would say at the end of phone calls. “If it’s what you really want, we’ll get you there.” But there was no mistaking his sense of purpose and relief.

One of the major “practical difficulties” he did have to resolve was his doctor. Dignitas requires three medical reports, one of which must be less than three months old. His consultant had provided two but for the third, my father turned to his GP. He foresaw no problem: he liked and respected his doctor and had talked openly to him about his wish to die, only to be reassured that “a surprising number” of people at the practice were “sympathetic” to patients in his position. Yet when he requested the report, his GP decided to take legal advice from the General Medical Council (GMC) and concluded that he could not provide one. When my father phoned that night, he sounded even more weary than usual: “I’ve run into a bit of a problem,” he confided. Just a few days later, however, he was back on track. He had made a few calls and been put in touch with Colin Brewer, a retired London-based doctor, who was able to help.

…

What strikes me about all the right-to-die campaigners I have now met is their extraordinary joie de vivre. I had googled Colin Brewer before going to meet him, six months after he had assessed my father, to discover that despite a long, successful career treating drug and alcohol addiction, he had been struck off the GMC’s register in 2006, aged 63, for unorthodox prescribing practices. I expected a maverick but wondered whether he would also be bitter or burnt-out.

Instead, I was greeted by a genial man who insisted on opening a bottle of wine – “Your father would approve” – before guiding me through the complex history of religion and suicide. “There’s nothing in the Bible against suicide,” he told me as we sat looking out over the Thames (he owns a beautiful riverside apartment). “Saul, Sampson, Judas – you could even argue that Jesus committed suicide – all [their suicides] are mentioned neutrally or even favourably. Seeing suicide as a crime – an insult to God – is an entirely religious construct.”

The religious establishment’s opposition to any change in the law on assisted dying has long hampered the efforts of the right-to-die movement to do the opposite. When the eminent human rights lawyer Lord Joffe (who helped to save Nelson Mandela from the gallows) attempted to bring his draft Assisted Dying for the Terminally Ill Bill to the House of Lords in 2005 – the most recent attempt to change the law at Westminster – the Roman Catholic church launched its “biggest ever” campaign against it, sending out anti-euthanasia DVDs and leaflets to every parish in England and Wales.

The bill was defeated in 2006 by 48 votes, with none of the 26 Anglican bishops supporting it. Yet, as Andrew Copson, chief executive of the British Humanist Association, points out, “Polls show that 72 per cent of Anglicans support a change in the law. The bishops are totally out of line with the opinion of their flock.”

Similarly, when the British Medical Association voted at its annual conference in 2005 to adopt a neutral position on doctor-assisted suicide, the Christian Medical Fellowship swung into action. The following year, the BMA reverted to its previous position – negative – which it still holds. “Believers are very well-organised,” says Brewer. “By contrast, trying to organise non-believers is like herding cats. We tend not to listen to authoritarian voices telling us what to do.”

A good friend of both Lord Joffe and Colin Brewer is Michael Irwin, the founder and co-ordinator of The Society for Old Age Rational Suicide (Soars) and a former chairman of the Voluntary Euthanasia Society. He, too, was struck off by the GMC, in his case in 2005 at the age of 74, for agreeing – or rather, refusing to deny that he had agreed – to supply a terminally ill friend with a lethal dose of sleeping pills (in the event, his friend was too ill to take them). He has also accompanied four people to Switzerland and twice been arrested and bailed, though never charged. (The police, he notes, were “always very friendly”.) Yet “Dr Death”, as the tabloids now call him, is a charming man of great warmth and wit who, at 82 and despite severe numbness in both feet following a serious car crash in 2007, still campaigns, travels and enjoys life to the full.

Irwin, too, has had a long and interesting career. After qualifying at Barts Hospital in London, he studied at Columbia University in New York, and stayed in the city for the next 33 years, joining the United Nations in 1957 and rising to become its medical director. He first started to think about assisted dying during his UN travels to more than 90 countries: with access to private doctors, rich people the world over, he soon realised, never endured “a bad death”. (The other group to whom this has long applied, he adds, is doctors themselves.) He believes the same “two-tier system” is now developing in the UK, with the rich and tenacious increasingly “going to Switzerland”.

He also sees the current system as riddled with hypocrisy. A good example, he says, is the so-called “double effect” – the fairly common but never openly acknowledged practice of seriously increasing the amount of diamorphine given to terminally ill patients during their final weeks, ostensibly to “lessen distress” but with the “side effect” of shortening their life. As pain relief is the stated intention, goes the reasoning, that makes it ethically acceptable – because, of course, as the law stands, the practice is illegal. Sadly, says Irwin, who prefers to call it “society’s slow wink at euthanasia”, when he first qualified in 1955, “There was little concern that perhaps one was breaking the law. [Such treatment] was the result of an open discussion and considered to be good, compassionate medical practice.” How attitudes in our litigious, box-ticking, post-Shipman world have changed.

What also drives Irwin on is that unlike Dignity in Dying, the organisation he used to head, and which currently concentrates its campaigning efforts on the terminally ill, Soars believes that our rapidly ageing society also needs to “start a discussion about allowing elderly, mentally competent individuals suffering from various non-terminal health problems to receive a doctor’s assistance to die, if that is their persistent request”. Individuals, in other words, like my father.

…

Once Christmas 2012 was over, my father moved into countdown mode. His paperwork was in place: now he had to start firming up dates with Dignitas and, hardest of all, saying goodbyes. Fine-tuning the timing is one of the most agonising aspects of being forced to travel abroad to die: get it wrong and you must endure either the sadness of leaving “too soon” or the horror of leaving it “too late”.

The latter is what happened to my father. After months of painstaking preparations, 10 days before we were due to fly to Zurich, he began to weaken. His legs could no longer take his weight: trips to the bathroom began to involve me and my stepbrother manoeuvring him in and out of a wheelchair and, to his horror, on and off the loo. For the first time, he even allowed us to feed him. A few days later, although terrified of being hospitalised, he let us call out a doctor. Some minor bug, we convinced ourselves, had brought him down: antibiotics, duly prescribed for a chest infection, would surely sort it out.

Initially, he seemed to rally but a few days later, just 72 hours before his flight, another emergency doctor had to be summoned. She prescribed, among other things, oxygen and morphine patches. Again, our hopes rose: surely they would buoy him up for the journey?

By the evening of the next day, however, the moment we had all been dreading arrived: my father announced in a low, desperate voice that he felt too ill to travel. My sister and I sat by his bed and tried to think of comforting things to say but, as ever, he was ahead of us. “Stop worrying,” he eventually said. “I shall just stop eating and drinking.” “Don’t,” begged my sister. “It’s a terrible way to die.” It was the last proper conversation the three of us ever had.

By the following morning, my father had changed his mind. He still wanted to go and, even better, there was a new plan that spared him Heathrow: a private ambulance would drive him to Zurich while my sister, stepmother, stepbrother and I flew in. We could all still make it on schedule. Yet when the ambulance drove away the next morning, it did so without its passenger.

In the event, my father was “lucky”: he died at home, surrounded by his family – and it took him only another seven days to do so. Yet, on his behalf, I resented every appalling second of them.

Although interminable, they had a clear structure. In the morning the district nurses came; at night the equally kind and professional “twilight team”. “Don’t worry,” they would say, as they changed his pads, pyjamas and bedding, prompting harrowing groans. “He’s comfortable now.” (“He doesn’t want to be comfortable,” I felt like screaming. “He wants to be dead.”) Gentle women from the local hospice then arrived at 10pm and watched him through the night. The rest of the time we took it in turns to sit in his bedroom, waiting, hoping and listening to his breathing, as the pump circulating air through the mattress of his newly supplied hospital-style bed droned away in the background.

Occasionally he would cry out and, afraid that he was thirsty, someone would grab the item that, among all the NHS end-of-life paraphernalia crammed into the bedroom, my sister and I decided we hated the most – a sort of ice-lolly sponge on a stick that he would suck dry after we had dipped it in water. “Should we even be doing this?” my sister said to me at one point. “Are we prolonging his life?” For that, as he could not have made clearer, was the last thing he wanted.

The key to achieving what he did want, we knew, was morphine: as much as possible, as quickly as possible, preferably via a pump. Yet initially, extracting any additional milligrams proved a delicate business. As one nurse sternly explained to me on day two, when I had clearly overstepped the mark, the “meds” were there to “ease Dad’s suffering”, not “send him on his way”.

But my father had one last trump card and he played it well. Calling in on what would prove to be the final Friday of my father’s life, his GP solicitously approached his bedside. Having barely spoken for days, my father suddenly opened his eyes and said, quietly but clearly: “This is torture. Absolute torture.” Within hours, the nurses made a special second visit to fit a morphine pump. Back again on Monday, his GP engaged my sister in what appeared to be an intense discussion on semantics. “Would you say Dad is in discomfort or distress?” I heard him ask. “Distress,” she replied without hesitation. “I agree,” he said. “I think we should put up his morphine.” A day later, my father’s ordeal was finally over.

My immediate reaction was euphoria. I remember raiding the fridge, gulping down two huge glasses of wine and, as tears of relief began to flow down my face, fighting the urge to run out of the house screaming: “At last. At last. AT LAST.” Then another emotion took over: rage. I ranted and raved to anyone who would listen about the vile protocols, euphemisms and hypocrisy that had marked the protracted and painful last week of my poor father’s life. Nine months on, I am less angry but more determined: our current laws on assisted dying need to change. Are we so very different from the Dutch, the Belgians, the Swiss, the Luxembourgers and the Americans? Can our finest legal minds not devise similar safeguards to theirs? And with polls repeatedly showing that between 70 and 80 per cent of people in this country support assisted dying, can the secular majority not find some way of getting the politicians to listen – and prevent the religious minority from repeatedly closing down the debate?

There are some signs that the “pro” campaign is gaining momentum. Lord Falconer’s Assisted Dying Bill is due to get a second reading in June; Coronation Street is still mourning Hayley Cropper, a much-loved character whose decision to procure and take an overdose rather than suffer late-stage terminal cancer was sensitively explored in January; and Margaret Drabble is the latest big name to throw her hat in the ring with a recent article in The Guardian entitled “When it’s my time to go, let me go, with a nice glass of whisky and a pleasing pill”.

In the meantime, there is one memory from my father’s final weeks that comforts me. After yet another fall, I lay beside him on the carpet, trying to distract him until two burly ambulance men could arrive to lift him up. “Promise me you’ll write about all this when it’s over,” he said. That promise, at least, I’ve been able to keep.

The writer wishes to remain anonymous. Catherine Syer is a pseudonym. soars.org.uk; dignitas.ch.

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