As her father faded before her eyes, Alix Hawley made the agonising decision to accompany him to Switzerland so he could end his own life. In a moving account of those final weeks and days, she describes how he had to fight for a dignified death.
Alix Hawley is remembering the final moments of her father’s life. ‘I held him tightly. He smelled just as he always did, of soap and shaving foam. “I love you,” I said over and over. He closed his eyes and whispered softly, “You’ll be OK. Everything will be OK.” Those were the last words he spoke to me.’
Her father Geoff Whaley, an 80-year-old retired accountant, father of two and grandfather of four, died in February this year after a two-year battle with the neurodegenerative condition motor neurone disease (MND).
Not – as he so dearly wished – in his own bed at the family home in Buckinghamshire, but at a Dignitas house in the corner of an industrial estate near Zurich, Switzerland. Hundreds of miles from home, after an arduous journey by plane and car, Geoff drank a lethal drug mixed with water, dying moments later in the arms of his wife Ann and Alix.
However, while Geoff’s death at Dignitas ended his suffering, it has not brought his family a total sense of peace. ‘It’s been seven months since Dad died and I still feel angry,’ says Alix, a 44-year-old mother of four.
‘As grateful as I am that Dignitas offered him an escape from the living hell his life had become, my father deserved more. He should have been able to die at home and say proper goodbyes to his grandchildren, instead of simply disappearing on a plane one day and never returning. He shouldn’t have been subjected to a police interview in his final weeks, or seen my mum taken to a police station to be interviewed under caution for her role in his preparations to die. And, most importantly, his decision about when he died shouldn’t have rested on his ability to travel to Switzerland, thus robbing him of several more weeks at home with us. Despite everything, Dad still had a “good” death – because it was quick, painless and on his terms. But I wanted more for him.’
When Alix opened her door one freezing December evening in 2016 to see her parents on the doorstep, both ashen-faced, she knew instantly something was very wrong. ‘It was the middle of the week and they never called round unannounced. Mum suggested we all have a glass of wine and I felt sick, wondering what they were about to tell my husband Dan and me,’ remembers Alix. ‘Dad was always matter of fact and just came out with it. He’d been diagnosed with MND, there was no cure and doctors had given him two to five years to live. I could hear his words, but they made no sense. Dad was 78, but he’d only recently stopped skiing, he played tennis every week and was a hands-on grandfather. The idea of him trapped in his own body, paralysed, voiceless… I just fell to pieces.’
Unbeknown to Alix, Geoff had gone to see his GP, concerned about his weakening grip and aches in his hands. Tests had revealed MND, a condition that affects around 5,000 people in the UK. ‘After his diagnosis, he insisted we all had to carry on with normal life,’ says Alix. ‘He kept playing tennis, he and Mum travelled, which was their passion, and I forced myself to stop endlessly researching MND online, because what I learned was so distressing. I’d lie awake at night, Dan asleep next to me, filled with despair that this had happened to my darling dad, terrified about what lay ahead.
In the summer of 2017, Geoff told his family he was planning to die at Dignitas when he felt he could no longer carry on living with MND. ‘I wasn’t shocked,’ says Alix. ‘I think subconsciously I’d always known he’d want to take control, not wait for the disease to completely destroy him. Although the symptoms were still relatively mild at that time, he had started to stumble and lose strength in his arms. It was enough for him to know that as it worsened, there was an alternative to simply submitting to the disease. Of course, it was very painful to hear him talk about dying, but I totally supported his decision and knew instinctively that, when the time came, I’d be with him. He and Mum visited the clinic that year and Dad returned very positive. It gave him a boost to know it was there when he was ready.
‘After registering with Dignitas, every three months Dad had to supply letters from the specialist treating him, and new psychiatric reports, in order to remain eligible to die at the clinic,’ says Alix. ‘He had files stuffed with paperwork – all to prove he was making this decision himself and wasn’t being pressured into it.’
As Geoff’s physical health declined, Alix says she struggled emotionally, knowing that the more incapacitated he became, the closer he was to making that final – and fatal – decision. ‘I knew every time he lost another function, like the use of his legs and arms, or his ability to chew solid food, it was a day closer to losing him. The loss of dignity, when Mum or I had to change him because he’d become incontinent, or he had to be hoisted from his bed, was devastating for such a proud, independent man. There was a terrible juxtaposition of supporting his wish to die but not being able to imagine my life without him. He put on a brave face, never someone to wallow in self-pity. But I saw the truth in his eyes and knew it wouldn’t be long before Dad had enough of this half-life.’
In January this year, Geoff decided it was time. ‘By then he was completely paralysed, unable to even operate his electric wheelchair with his thumb,’ remembers Alix. ‘We all knew he was almost past the point of no return, when it would have been impossible to get him to Switzerland.’
Two weeks before they were due to leave, the family were plunged into crisis when police and social services were anonymously tipped off about Geoff’s plan to end his life. Both Geoff and Ann were interviewed by police, Ann under caution at a local station about her role in helping Geoff travel to Dignitas, and his medical records and correspondence with Dignitas were pored over.
‘Although the police were just doing their job, I was angry he had to waste precious time proving it was his decision to go, terrified his passport would be confiscated,’ says Alix. ‘Even when the police said he could go, a case against Mum was left “open” and she could be prosecuted in the future if new evidence about her role in Dad’s death came to light. It was hugely upsetting for Dad to have placed her in that position.’
In early February, Alix hosted a family Sunday lunch at her home, knowing it was the last time they would all be together. ‘My eldest children, Joshua, 17, and Lauren, 15, knew it would be the last time they’d see their grandad, but the younger ones, Henry, ten, and Martha, four, were too little to understand and Dan and I had made the decision, with Dad, to protect them from what was about to happen. Watching them clamber on to Dad’s lap, kissing him and promising to see him soon, I felt as though my heart would break.’
On 6 February, Alix and Dan, her elder brother Dominic and his partner Alison, along with two family friends, travelled with Geoff and Ann to Zurich. ‘I remember sitting at the airport thinking that to an onlooker we just looked like a “normal” family jetting off on holiday. Who could have guessed we were taking Dad to his death? He was relaxed as we boarded the plane, but for me it all felt surreal. After months of preparing, emotionally and practically, it was finally happening.’
Following a final assessment by a Dignitas doctor, and a night in a nearby hotel, the group walked the short distance to the clinic the following morning. ‘It was freezing cold, there was snow on the ground and the house was tucked away in the corner of a pretty grim industrial estate,’ says Alix. ‘It felt so far from home, I couldn’t quite take in that this was where my Dad was going to die. Yet the moment we pushed him through the door, I felt a huge sense of relief. We’d made it.’
While Geoff, his wrist supported by Ann, signed the final paperwork agreeing to be helped to end his life, back in the UK his story had hit the headlines.
‘Dad had become involved with the campaigning group Dignity In Dying, and just before we went to Switzerland, he gave an interview to the BBC about his experience, calling for the laws on assisted dying to be changed. It was broadcast the morning he died, because he’d been too scared that if it was released before we left, he’d be stopped from travelling to Switzerland. That fear had haunted his final weeks.’
Alix and Ann stayed with Geoff when he was taken to the bedroom where he was to die. ‘The others didn’t feel they could be there at the very end, and Dad understood that. We made Dad comfortable in the bed with Mum and I lying on either side of him. Two members of the Dignitas staff brought him a small cup with a straw, then waited in a corner unobtrusively. Dad was so calm and peaceful. I knew he was ready and I had to be, too – I had to let him go.
‘He was just able to lower his head enough to suck through the straw, then Mum and I held him, our arms entwined around his frail body. He lost consciousness quickly, but it was around ten minutes before he took his final breath.’
Travelling home that evening, Alix vividly recalls the pain of seeing the empty seat next to her mother on the plane. ‘All my focus had been on getting him to the clinic. I’d been running on adrenalin for months, but looking at that empty seat it hit me and I crashed emotionally. Dad was dead. Rather than sadness, I felt an overwhelming guilt we’d had to leave him behind, lying on a mortuary slab in a foreign country. For me that was incredibly traumatic, harder than watching him die.’
Back in the UK, family and friends gathered for a memorial celebration at Gerrards Cross Golf Club in Buckinghamshire. Then, four weeks after his death and after the Swiss police had carried out an investigation (a formality to ensure all the laws there around assisted dying had been observed), Geoff was cremated in Zurich and Ann returned to Switzerland to bring his ashes home. ‘We buried some at an eco memorial ground, and the rest are in an urn at Mum and Dad’s house, with a yellow rose planted in them,’ says Alix. ‘I felt so relieved to have Dad home with us.’
For Alix, with her father’s death came a determination to honour a promise she made to him in the final weeks of his life. ‘His greatest wish was that the work he’d begun, campaigning for a change in the law that would allow people like him to die at home in the UK, be carried on. In May, along with Mum, we launched the Acts of Love campaign, which brings families like ours together to press the Government to look at the current legislation and the impact it has both on people such as Dad and their loved ones. Dad’s greatest fear was never death. It was not being able to die when he was ready.
‘I want his legacy to be that others can die peacefully and legally at home, when they feel they can no longer go on. A choice he was denied.’
For more information, go to dignityindying.org.uk