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Right to die?
For those who can afford it, a trip to a Swiss clinic can mean the end of unbearable agony. But should the option be available closer to home? Mick Brown reports on the assisted dying debate
For those who can afford it, a lethal £10,000 cocktail in a Swiss clinic is a way out from a lingering, painful or humiliating end. But should we force terminally ill people to travel abroad for a painless death? In the light of the Gosport revelations, Mick Brown meets those living with the agonising consequences of the assisted dying debate. Pictures by Thomas Duffield
On a Sunday in October last year, Dave and Jackie Osmond arrived at the care home near Coventry where Jackie’s mother Lynn was living, to take her on her final journey. Suffering from advanced Parkinson’s disease and living in constant pain, Lynn, who was 76, had long since made up her mind that she wished to die peacefully and, as she put it, with dignity.
‘It was what she wanted,’ Jackie said. ‘And so we wanted to help her.’
Under the Suicide Act, in England, Wales and Northern Ireland, any action that helps another person to end his or her life is illegal, including arranging travel to assisted-dying clinics in a more liberal jurisdiction. Those convicted could face up to 14 years in prison.
In the months that Lynn had been in the care home, it had required a measure of subterfuge to make the arrangements to take her to Switzerland, and the Dignitas organisation where she planned to end her life.
Preparing for the journey, Jackie had told the home they were taking her mother to Wales ‘for a short break’. So it was with shock that, while waiting to check in at the airport, they saw a nurse from the care home approaching them.
‘She said, “Fancy seeing you here! Where are you going? I bet I know…” I was thinking, “Oh my God…” And she whispered in my ear, “Turkey…” because she knew we have a holiday home there. I didn’t want to lie, so I just said “You’ll see…”’
I met with Jackie and Dave at their house in a village a few miles from Coventry. There were sandwiches and coffee on the kitchen counter, and a view through the window on to open fields.
‘We’re very happy to talk about this,’ said Dave, a practical, no-nonsense man. ‘It’s important to let everyone know what the situation is for people in Lynn’s position.’ And theirs.
Lynn Chisholm was in her mid 50s when she was first diagnosed with Parkinson’s. In 2013 she began to deteriorate markedly. A back operation left her in constant pain. She stopped eating and her weight fell to six stone. She became a virtual recluse, her husband Bill acting as full-time carer.
Bill’s health was also failing, and in November 2016 he suffered a fall and died of internal bleeding. He was 77. He and Lynn had been married for 56 years.
Both had discussed the question of ‘not wanting to live beyond a point that was viable, with dignity’, as Dave put it. ‘It was a standing conversation between them about, when the time came, going to Switzerland “for a little holiday”.’
After Bill’s death, Lynn’s condition worsened and she was admitted to hospital for palliative care. At her request, her records were marked DNR (do not resuscitate) and she specified to doctors that if she caught pneumonia she did not want antibiotics. When she did contract pneumonia, antibiotics were nevertheless prescribed. She recovered and was discharged to a care home. ‘All along she’d said, “I don’t want to go in a home,”’ Jackie told me. ‘“Just give me a little pill, help me along…”’
Lynn asked Dave to download the paperwork on Dignitas. ‘She could only read a couple of pages a day because her hands were shaking so much,’ Jackie said. ‘She wanted to plan it herself. She knew we were willing to help her, but she didn’t want us to get in trouble.’
Throughout the process of applying to Dignitas, Lynn kept the decision secret not only from the care home, but even from her own sisters: ‘She was worried they would try to stop her.’
On the day before leaving for Switzerland, unable to write, she dictated letters for her two sisters and sisters-in-law, to say goodbye. Then Jackie packed her weekend bag and they left.
The shocking revelations of the inquiry into the premature deaths of at least 456 elderly people who were over-prescribed painkillers at Gosport War Memorial Hospital have reanimated the discussion about assisted dying, the need to protect patients, and respect the choices of the terminally ill and the elderly approaching the end of their lives. Opponents argue that assisted dying would open the door to more people having their lives ‘shortened’ illegally. Proponents argue that a properly regulated law would bring transparency to end-of-life treatment.
The first Briton who chose to die at Dignitas and elect to publicise his case, in 2003, was Reginald Crew, 74, who was suffering from motor neurone disease. Since then, it has been estimated that two people a month travel from Britain to Switzerland to end their lives. (It is thought that a further 300 or so people a year arrange their own death at home.)
For a terminally ill or suffering person to pursue the process – which the campaign group Dignity in Dying describes as ‘outsourcing death to Switzerland’ – takes time, knowledge and funds. It favours the educated and the well-off. The average cost of an assisted death has been estimated at £10,000.
Applicants must provide medical records to show they meet the required criteria of mental capacity and illness – in the case of Dignitas, that they are suffering from a terminal disease (or a condition that causes unendurable disability or unbearable pain); or in the case of another Swiss assisted-death organisation, Lifecircle, that they are suffering from an incurable disease. But doctors have often been reluctant to provide records, afraid of falling foul of the General Medical Council dictat that they ‘must not actively encourage or assist’ a patient seeking an assisted death.
The psychiatric report for Lynn was provided by Dr Colin Brewer, one of the few psychiatrists in the UK prepared to evaluate people applying to Dignitas or Lifecircle. Brewer was formerly the director of the Stapleford drug clinic, which offered drug withdrawal programmes for patients who could not afford private treatment. But in 2006 he was struck off the medical register following the death of a patient undergoing a ‘DIY home detox’, after the patient’s parents had misread instructions.
Brewer, who is 77, has long been a proponent of legalising assisted dying. In the early 1970s he was on the committee of the Voluntary Euthanasia Society (now Dignity in Dying), and he is now associate co-ordinator of the campaigning group My Death My Decision (MDMD).
‘Most people I see have clearly thought about this issue long before they became ill,’ he told me. ‘They’ve been members of societies like Dignity in Dying or MDMD, or they’ve indicated in some way that this is what they’d want.
‘My job is simply to say, you have, or have not, capacity – or you do not have, or have, a psychiatric condition which if treated might make you change your mind. Occasionally I see people who’ve left it too late, they don’t have capacity – and in that case I tell them so.’
Advances in medicine to prolong life far beyond what would once have been regarded as its ‘natural’ span, when any hope of recovery or even a reasonable life is long gone, have contributed to the complex ethical problem of a patient’s right to die.
‘We live a lot longer, but a lot of people are living very unhealthy and unhappy lives,’ Brewer says. ‘I think a planned death is something people should be looking at, because often the alternative is really not good.’ It is a choice, he says, he would happily seize himself. ‘Absolutely.’
A British Social Attitudes Survey in 2017 reported that 78 per cent of respondents believe someone suffering from an incurable, terminal disease should be able to get medical help to die.
Yet Parliament has consistently rejected any change in the legislation. In 2015, MPS voted against a bill that would allow some terminally ill adults to end their own lives with medical supervision by 330 to 118 votes.
Nick Boles MP is chair of the All-party Parliamentary Group for Choice at the End of Life, which is campaigning for a change in the law. He had been opposed to the issue until his own brush with cancer in 2016 led him to wonder what he’d want
for himself had his illness become terminal. ‘The answer was simple,’ he says. ‘I would want control.’
Boles believes the best option for a safe law is the Bill initially proposed by Lord Falconer in the House of Lords in 2014. Under this proposal, people suffering from a terminal disease with fewer than six months to live, and with full mental capacity, could be prescribed a lethal dose of drugs, which they would have to be able to take themselves, following appraisal by two physicians, and with the final approval of a High Court judge.
This, Boles says, would allay fears about people being coerced into taking their own life by unscrupulous family members, or feeling under pressure because they were a ‘burden’ to loved ones.
The Falconer Bill was modelled on the Death with Dignity Act, in the US state of Oregon, where ‘medical aid in dying’ has been authorised since 1997. Barbara Coombs Lee, president of Compassion & Choices, a non-profit organisation dedicated to expanding and protecting the rights of the terminally ill, who helped to draft the act, says that having gone through the onerous process of qualification to receive medication, upwards of 35 per cent of people then choose not to take it.
‘That was quite a surprise,’ she says. ‘They die in their beds, at home, with the comfort of knowing their suffering never did become unbearable.
‘And the second surprise is the enormous improvement in the mental and emotional state of people once they do receive the means of control over their suffering.’ The Oregon law, like the Falconer Bill, stipulates that the person should be mentally competent and have ‘six months or less’ to live. This does not answer the dilemma of people suffering from dementia, where the criterion of ‘competence’ is precarious. It is estimated that by 2040 more than 1.2 million people will be living with dementia in England and Wales. My Death My Decision argues that in the case of dementia – and other chronic or progressive conditions – the six months criterion is unfairly proscriptive.
Dignitas stipulates that a report on mental competence in a person who has dementia should be no more than 30 days old, because their condition can change so rapidly. (The doctor who prescribes the lethal medicine also has to make a final assessment to confirm the patient still retains capacity and thus qualifies under Swiss law.)
This means that a patient with dementia is faced with the appalling prospect of having to make the
final decision to die while mentally competent, when they may still have the possibility of weeks, months, or even years of reasonable life ahead of them.
‘If someone can’t answer the simple questions – do you understand what you’re doing? Are you sure? – then Dignitas won’t help them,’ Colin Brewer says.
Ifirst met Alex Pandolfo in London, at a meeting of MDMD. About 100 people had gathered in the hall, some of whom had already made the decision to take their own lives, others who were, perhaps, weighing it up. The mood was of enthusiastic support for the idea of assisted dying, and anger at the law that prevents it.
Alex was just 64, but had been suffering from Alzheimer’s for the past four years. He had made the decision to go to Switzerland, he told me, while he still could. A few weeks later I visited him at his home in Lancaster. The small mews house where he lives alone was sparsely decorated, but he said he’d recently been hanging things on the wall. A framed family tree. A signed Manchester City shirt. A poster for his favourite musical, Hair. His life.
Born into a working-class family in Manchester, Alex had been expelled from school at 14, and after spending some time travelling, had worked on the buses. Trade union activism led him to a place at Ruskin College Oxford, a PHD, and a career in teaching and academia.
In 2003 his father died after suffering from multiple system atrophy for many years. Alex had cared for him in the last three years of his life, when he was also suffering from vascular dementia. The dementia, Alex said, had made his father ‘the antithesis of everything he ever was’. A kind, decent man, he had become abusive and frequently violent.
‘I got beaten up by him several times. He simply didn’t know who I was. In the later stages, the tears would just flood out of him.
‘The memory that haunts me most is the two weeks before he died. He’d lost all his speech, he’d lost movement, and all I can see is those eyes staring at me, pleading “do something…”
‘He had a morphine drip, and if I could have kept my finger on that and he’d have died, I would have done it, and I’d have been proud that I’d done the right thing.’
It was watching the slow, painful death of his father, he said, that convinced him that if ever he was in the same situation, he would rather choose the time of his own passing. Then, turning 60, he began to experience the first signs of dementia himself. He was given an assessment at a Memory Clinic, and a brain scan.
‘They ask you to count down from 100 in sevens. I got to 93 – is it 93? – and I couldn’t go further than that. Then it was, “Starting at A, give the name of an animal.” And I couldn’t give any.’ Could he do it now?
‘I’ve just thought of ape, because I fancied you might ask that.’ He laughed. ‘I’ve got budgerigar now. C…’ He paused. ‘I haven’t got a clue.’
After being diagnosed with Alzheimer’s, Alex became a member of Dignitas, but then registered with Lifecircle. At Dignitas, a patient takes their own life by drinking a fatal cocktail of 15 grams of powdered pentobarbital dissolved in a glass of water (although it can be administered by stomach tube or IV if the person already has these in place). Lifecircle offers an IV drip, with a small tap for the patient to turn on when they are ready.
‘I can gag cleaning my teeth,’ Alex said. ‘And when you’re drinking a 10,000 Swiss francs cocktail, you don’t want to throw it up or not be able to drink it.’
Alex talked about this with disarming matter-of-factness. I was struck by his lack of self-pity, his determination and his cheerfulness. He talked of how his life was closing in on him. He was unable to drive, cycle or walk any distance – ‘and I loved walking’. He pointed to a row of empty shelves that had once been lined with books – ‘I was an avid reader’ – all gone to the charity shop.
Worst of all, he said, he was losing the capacity to feel. ‘The Manchester Arena bombing, chemical
‘All along Mum had said, “I don’t want to go into a home. Just give me a little pill to help me along”’
attacks in Syria, things that would have gutted me once – they don’t now. ’ He shook his head. ‘It’s like how my dad changed. And that’s really distressing.’
We talked about how he must make the final decision when he possibly has weeks, months or even years of ‘sustainable’ life in front of him.
‘That’s what I’m angry about. I’m not angry about the Alzheimer’s. But I believe I should be able to write an advanced directive, that when I can no longer take myself to the toilet, clean myself and live independently, that is the time to go.
‘I’m not suicidal. I want to live as long as I can; but we have to make a distinction between a life and just being a shell. That isn’t life to me.’ His indignation about the law led him to set up his
own Facebook page, The Right To Die With Dignity UK, to add his voice to the campaign. ‘My biggest regret is that I didn’t pick up on this earlier. If I had, Dad might have had a humane exit. So my last act when I die will be a political act; it will be a condemnation of the British government for forcing me to take my life before I need to, and forcing me to take it in a foreign country.’
His two sisters and his mother, a devout Catholic, all support his decision, he said. ‘People do get upset. I’ve got a mate, Chris, who I’ve known for donkey’s years. I’d talked to him about it, but he thought I was just winding him up. When he realised I was serious, he phoned me up and said, “When you go to Switzerland, can I have your [Pink] Floyd albums…?” That’s so Manc, I just burst out laughing.’
At his present rate of deterioration, Alex said, he believed he’d be making the final decision to go to Switzerland at the end of this year or the beginning of next. ‘But if I’m still functioning as I am at present, then I’ll put it back.’
He paused. ‘My biggest concern, and it’s becoming more and more part of my nightmares now, is that I get the day wrong and leave it too late.’
In Switzerland, Lynn, Dave and Jackie and their three daughters booked into a hotel, where they were also joined by Jackie’s brother, Dean, and his wife, Janet. On the first day, a doctor from Dignitas visited Lynn at the hotel, to confirm her identity, evaluate her physical condition, and ask a series of questions: do you know what you are doing? Are you doing it for the right reasons? Are you sure you wish to go ahead? He
would return to the hotel two days later and ask her the same questions.
On Lynn’s last day alive, the family took a boat ride on Lake Zurich. The sun came out, and a stranger took a photo of them all standing at the ship’s railing. They had it printed that same day. Jackie showed me the photograph of the family, flanking Lynn in her wheelchair, gazing across the lake to a horizon of silvered clouds. ‘We call it “The Journey”,’ Jackie said.
It was Bill’s habit to always carry £100 in his wallet, and Jackie had brought the wallet with them, ‘because we thought Dad would want to be part of this’. At Lynn’s last supper the £100 bought champagne. In the wallet were pictures of Bill and Lynn as a young married couple. ‘And it sounds ridiculous, but we were laughing and laughing, looking at these pictures.’
The Dignitas premises are in a suburb of Zurich, set beside an industrial estate – quiet, anonymous. You are given the address only on the morning of the appointed day. On arrival, you are shown to the ‘chalet’, as they call it: a table, comfy chairs, a bed, a view through the window to a small garden and a high fence. The two female helpers – you are not told their names – were ‘marvellous’, Jackie said. ‘It just seemed so natural and unforced, how they talked to Mum. They give you a drink to ensure you can swallow, and a tablet to settle the stomach. The worry is that if you throw up, you’ll only get a partial effect. So Mum took the tablet, and then they left the room.’
For an hour the family talked and played Lynn’s favourite music – Perry Como, Dean Martin, and Russell Watson’s Someone To Remember Me .The picture they had taken at Lake Zurich was at Lynn’s side, along with a photograph of her husband.
‘I talked to the helpers,’ Jackie said, ‘and they said there was no hurry but if Mum needed more time she must take another tablet to settle her stomach. But Mum said, “No, it’s time now.”’
One by one, the family had a little time with her on their own, then gathered around her, ‘holding hands, stroking her’, Jackie said, ‘so we were all joined as a family. She drank [the lethal dose] straight down. I said, “How are you feeling, Mum?” and she said, “Really sleepy,” and that was it.’
‘She was quite matter-of-fact about it,’ Dave said. ‘Not for one second did she show any doubt.’
Immediately following Lynn’s death, the Osmonds were told to leave, while Dignitas reported the death to the authorities. That night, the family flew back to England, and the following day Dave and Jackie visited the care home to tell them what had happened. ‘The manager totally understood,’ Jackie said. ‘She cried.’
Lynn was cremated in Switzerland and a British undertaker arranged the repatriation of her remains.
The home had a duty of care to report the matter to the police. And a week later Jackie answered the door to four detectives. Dave, Jackie, her brother and a friend who had countersigned one of the forms for Dignitas were all questioned under caution.
‘We thought, “Let them do whatever they have to do,”’ Dave told me. ‘If they are going to send us to prison then we’ll make sure we get full publicity out of it.’ In April, five months after Lynn’s death, two police officers visited Dave and Jackie at home to inform them the director of public prosecutions would not be prosecuting.
A few weeks after Lynn’s death, family and friends gathered to remember her. ‘So many people came and said they understood what we’d done, and it’s what they would want for themselves,’ Dave said. ‘And I hope, if the time comes, and the law hasn’t changed by then, that somebody will be brave enough to do the same for me.’
Since my meeting with Alex we’ve kept in touch. I phoned him a few weeks ago and he described his condition as ‘a gentle slide downwards. I don’t get optimistic about it. I don’t get pessimistic about it. I would like to think we’ll be having this conversation this time next year.’ For now, he said, ‘I just take each day as it comes.’
‘My last act will be a condemnation of the government for forcing me to take my own life before I need to, and in a foreign country’