Publication:

The Guardian Weekly - 2021-11-26

Data:

In search of a good death

The Final Journey

CHARLOTTE NAUGHTON IS A GUARDIAN PRODUCTION EDITOR

ANN IS SITTING IN A WINDOWLESS and sparsely furnished white room with high ceilings and a red concrete floor. There is a bed in the corner, next to shelves full of medical equipment. She seems small against the large black sofa, her hands clasped together to minimise the involuntary swaying caused by her Parkinson’s disease. She is in pain, she is tired and, for the first time that day, she is getting a little anxious. She is waiting for someone to arrive with the drug that will kill her. Her fear is not of dying; she passed that point a long time ago. She is worried about the pharmacy’s supplies, suddenly scared that the people in whose hands she has put her death could let her down. Ann Bruce, my aunt and my friend, died in Switzerland on 26 June 2021 at the age of 73. She was a quiet, intelligent woman, slender and unassuming, yet determined and plain-speaking. She started her career as a doctor, and ended it as a psychotherapist. She sang, she held legendary dinner parties, and she adored the theatre – she was the master of her successful life. She was diagnosed with Parkinson’s seven years ago, and knew then that she did not want to let the disease run its full course. She told me that, for her, nothing tasted right any more, literally and metaphorically: “I can still enjoy things like the first snowdrop, bits of nature coming to life. But there’s not enough. My life is still good. What’s gone is my capacity to engage with it and embrace it and enjoy it.” As a doctor, but also as a friend and relative, she had witnessed so many people’s last days. Perhaps she had seen too much. Her parents were pragmatic people who both told her they would want to have an assisted death “if they had something nasty and incurable”. But neither got their wish. Her father died of lung cancer, and her mother died in a nursing home after a long and slow decline – towards the end, she needed help to drink a cup of tea. Ann would later lose her husband, David, to cancer, followed by her close friend Don. “Life became so limited that there was nothing for either of them to enjoy,” she said of the two men she had cared for as they died. “Even basics like food, because of the vomiting, the nausea, the pain.” These experiences built a stark awareness of how lives can deteriorate at the end. “Although very often the actual death is peaceful, what gets lost is the last few weeks, the running up to the dying,” she told me. “Both my parents were very calm, unconscious and died nicely. But they’d had a good deal of suffering in the run-up, and suffering that couldn’t be completely managed.” Ann wanted her death to be different. By the time she started to organise her final journey from her home in Ditchling, East Sussex, to a small village near Basel, in Switzerland, this year, she also had osteoporosis, a serious heart condition and macular degeneration. Her Parkinson’s had developed rapidly, leaving her in a great deal of pain, her dyskinesia (involuntary movements) exhausted her and she was nauseous much of the time, the sickness taking her down to 38kg as her life shrank around her. “I don’t think Parkinson’s itself is necessarily the great horror,” she said, “but Parkinson’s with all the other bits is.” She had come to see death not as a departure, but as an arrival, a concept embodied in a poem called The River Cannot Go Back by Kahlil Gibran, about a river that ends in the vastness of the sea. “It acknowledges the fear but also the release,” she said. I told her that she gave the impression she was looking back having reached her end point, like the river in the poem, rather than feeling her journey had been cut short. “Yes, that’s a nice way of thinking about it,” she said. “I like the idea of going back into some pool of unconsciousness that we came from, but it may just be nothing and that’s OK.” My aunt was a very private person, but she shared her thoughts with me before she died for one reason: to help those who came after her. She didn’t want to have to travel to a different country to end her life. Her fervent desire was that her words might affect the views of those responsible for the law. Assisted death is legal in Switzerland, as well as in several other countries including Canada, the Netherlands and Belgium. Although the details differ, the success of each system is grounded in tight regulation and documentation. In the UK, however, anyone who does anything that could be construed as “encouraging or assisting” another person to die, such as buying their plane ticket, pushing their wheelchair through an airport, or even talking about how it might happen, may be committing an offence that carries a potential prison sentence of up to 14 years. The British Medical Association recently dropped its opposition to assisted dying but, despite widespread support from the public and half of doctors surveyed personally believing there should be a change in the law to permit them to prescribe life-ending drugs, little has changed. A bill that would allow some people with a terminal illness to end their life at a time of their choosing is progressing through parliament, but is not expected to become law. “It’s unlikely to pass unless it gets taken up by MPs in the Commons and the government gives it time for debate,” says Trevor Moore, chair of the campaign group My Death, My Decision, which is calling for a public inquiry into the law. “There are some supportive MPs, but it takes up parliamentary time, and there are a lot of other things going on.” The main opposition to change is rooted in the fear that assisted dying could be used as a state-condoned form of suicide, but for Ann it was something altogether different. She never liked the phrase “assisted suicide”. “‘Suicidal’ has a negative feel of wanting to destroy life,” she said. “We need a new name for dying when you’re ready. For a completed life and a comfortable, assisted death.” She knew this path was not for everyone, that many people live comfortably with Parkinson’s for years. My father, Ann’s brother-inlaw, died with Parkinson’s and multiple myeloma two years after Ann’s diagnosis. As his health deteriorated, he had absolutely no desire to die, and she had admired his robust attitude to life: “I often think of Philip and his amazing capacity to carry on and do things, and not care if the dinner goes all over the floor.” Nevertheless, Ann was determined in her own decision. Yet, because of the law in the UK, she felt very alone in that choice. Organisations such as My Death, My Decision can campaign for a change to the law, but they are not allowed to support those in Ann’s position. She was not able to talk to anyone doing the same thing, to know if the emotions she was going through were “normal”. “I think there’s an important shift from something being a nice idea in here, to a reality out there,” she told me about her decisionmaking process. “And that needs a bit of working through. I feel like I’ve got through the worst of that, and I’m quite calm and together and in this more joyful place, but it might have been nice to be able to hear someone say they had similar experiences.” The last few weeks of Ann’s life were consumed by bureaucracy. To avoid putting her supporters at risk of prosecution, she had to do everything herself: booking accommodation, flights, taxis and Covid tests; organising special permission to enter Switzerland; and wrangling over a date with an assisted-dying clinic overwhelmed with applicants who had not been able to travel sooner because of the pandemic. Choosing when to tell people turned out to be difficult, too. Ann had thought about having a party to celebrate her death, but she was concerned that any gathering before she went could alert the police to her trip. “If the law had been different, I think I’d probably be much more into the joyful celebratory release bit of it,” she said. Instead, she went through it with friends individually, and often had to support them. “I have to recognise that their immediate reaction is grief and loss, and they’re in a very different place to me. I have to look after them a bit.” She even found herself consoling a member of staff at her bank: “When I tried to make the first payment to the clinic, the bank queried it. When I explained to this young woman what I was doing … she became quite distressed. She didn’t know how to handle me, someone who was being very pragmatic and straightforward and answering questions.” WHEN SOMEONE CLOSE DIES, people often don’t know what to say to the bereaved. Ann found this discomfort intensified when they were faced with someone planning their own death. People had no map, no guide for how to react. Some responded with openness, saying things they wished they had said sooner. But not always. “There was someone who came to say goodbye and, when she left, I felt there was something more she wanted to say and I hadn’t heard it.” Ann even joked about feeling a little awkward if she bumped into someone she had already said goodbye to. “I feel like one of these pop stars who keep coming back for a return concert, that goes on and on,” she said. “But if I leave it too late they don’t have time to get through that grief and be with me in something a bit more positive.” The process would have been so much easier if Ann had been able to do it out in the open. She wondered if so many people were conditioned to oppose legalisation partly because we were kept away from death, and had so few forums to discuss it. “People tend to be very protected from it because it happens in hospital or it’s often managed off-site,” she said. There were some friends she felt she could not tell about her plans for fear of them reporting her to the authorities, robbing them of the chance to say goodbye. Ann dreaded the journey to Switzerland, but she worried even more about the many things that could stop it happening: that she would have a stroke or a heart attack – or that Covid regulations might change. But in the end, nothing could stop her. It is the morning of Friday 25 June, a grey but mild day in Ditchling. Ann strides out of her small flat, leaving her bed unmade and her clothes strewn around her room, with just a small backpack hanging loosely from her thin shoulders. She might have been going for a walk but for her body language – her muscles are taut, her eyes fixed on the path ahead, her mind already on the release she will find at the end of this road. Three people follow her, her friend Janet Bark, her sister-in-law (and my mother), Barbara Naughton, and me. We all know we could face investigation by the police on our return, but we understand how resolute she is and we cannot let her die alone. As we travel, the world outside our solemn bubble carries on relentlessly cheerfully. In the taxi to Gatwick, I fail at small talk with the friendly driver, my stomach churning at the prospect of an airport interrogation that could end our journey. Ann, meanwhile, chats to him about the latest roadworks, despite her discomfort. Covid anxiety is still quite high in the UK, masks are mandatory on all forms of transport, and when we arrive at the airport it is quiet, with almost as many staff as passengers. The plane is full, however, despite restrictions on entry into Switzerland, as few flights are making this journey; it feels claustrophobic after avoiding crowds for a year, and the cramped conditions are excruciating for Ann. We weren’t able to get seats together, but I can see her across the aisle sitting next to a stranger, eyes closed. We touch down in glorious sunshine and emerge into a hot and busy Basel airport. We are collected by a driver commissioned by the clinic, who cheerfully declares that he will give us a tour, then helpfully points out the casino, a medical centre and a rubbish processing facility. “All this instead of just doing it in Brighton,” Ann muses wistfully. We finally arrive at a small village dominated by our hotel, in which the clinic that has organised her death owns an apartment. Ann is ashen, exhausted and in pain. When we reach the apartment she collapses into a chair, with her head resting on a small table, knowing her day is not over. She has a long evening ahead waiting for, then making arrangements with, the head of the clinic, who comes late – but seems kind, thoughtful and passionate about his cause. He talks a lot, but in gentle tones. Barbara, Jan and I excuse ourselves, retreating to the balcony to give them some space. I look back at the two of them sitting inside – Ann’s dyskinesia is so bad she can barely hold her head up, and she is swaying from side to side as she continues to discuss plans for her death the following day. When he leaves, she asks us to fetch her a gin and tonic. She wants to celebrate: she is finally here, and tomorrow she will end her life. When I first started talking to Ann about going to Switzerland, she called it “the procedure”, but tonight she is more blase. “We’ll plan to leave the hotel about 10.30, and I want to be dying by about 12,” she announces. On the morning of her death, Ann is calm and serene. She eats her breakfast in the apartment with the sun streaming through the balcony doors, then discusses the next steps. We make a playlist to go with her death. My mother and I go down to the restaurant to book a table for the evening, for three people. The proprietor looks at us. “Not four?” he says. “No, three.” It is hard for me to say the words. After breakfast we are driven to the clinic, which is done up as nicely as you can do up an industrial estate unit next to a garage with few windows and the whiff of petrol in the air. Enormous ferns and white modern furniture dot the large reception area, where we are greeted by a kindly woman who speaks some English. We fill out forms, and hand in our passports for the police to look at later. She takes us into the back room away from the heat of the day, where the waiting begins. We settle on sofas and chairs and talk quietly about how difficult it must be to set up such a place; the weather; the music Ann has chosen for her last moments. But it’s clear all she wants is for the drug to arrive. She is growing impatient for the peace she has travelled all this way for. WHEN THE DRUG is finally delivered from the pharmacy about an hour later, the staff get things ready, and Ann moves to the bed. She gives no indication that she feels any fear. A cannula is put into her arm, a drip is set up and it is explained that she needs to push a little wheel to release the drug that will kill her. She is asked questions about why she is there and whether she understands what is about to happen, while a video camera records her. At her bedside, we tell her we love her, and Jan and Barbara hold her hands. Barbara reads The River Cannot Go Back. Ann tells me to write a good article. She was never interested in famous last words, and didn’t think there was anything left to say. We are synchronising the playlist with her Quaker friends back home, who are “lifting her into the light” from afar, so we message them to play the music and start it in the clinic. She pushes the wheel, she thanks the staff, she says goodbye to us, and then, in seconds, she is gone. Forty-five seconds. For her, even then, it is a long time. Even after so much preparation, there is suddenly, almost violently, a huge gap where she had been, in the room and inside me. For some reason, I hadn’t been expecting to feel so low. I think that, through her serenity, Ann had convinced me of the joy in this moment – but now she is gone there is only loss. We hug each other and sit with her for what feels like a long time. Then the police come. The clinic’s operations are legal in Switzerland, but a woman has died, and some formalities must be observed before we can leave. We move back to the waiting room, leaving an officer and photographer to document what just happened. I am yearning to be released. I don’t want to be perched uncomfortably on this white sofa, sitting with this hollow feeling, exchanging tearful glances with Jan and my mother as the clinic staff work at their laptops and chat in Swiss German. I don’t want to have lost Ann. I want us to be four again. I want to be anywhere but here so I can work out how I feel and start to mourn. After a long hour, the police come back into the room and address the clinic staff. “Alles ist tip-top,” is the only phrase I catch. I take that to be a good sign. When we get back to England, the first thing we do is contact the British police. I am interviewed under caution on 14 July – a gentle questioning by a sympathetic officer, who does her best to put me at ease. Then we wait to hear whether it will be taken any further. Two months later, on 7 September, the officer calls to say the case will be filed. The police have chosen not to refer the investigation to the Crown Prosecution Service, but it was a possibility we had all had to face, and my tearful relief when the call finally comes shouldn’t take me by surprise. I wish I could tell Ann. Not long before we made the trip, I asked Ann if she had any regrets. She confided that she would have liked to know what happened next in The Archers. I told her she would have to create her own ending, and asked her about stories in real life that she would not see completed. She was sad not to see what her best friend did next. “She’s at quite a crossroads in her life, there are loads of possibilities. And I’d like to know what happens with the family, with you.” Her biggest regret, however, was not having children. But her work as a doctor had involved visits to struggling new mothers, and she wasn’t sure she would like it. “The picture of endless nappies – I somehow hadn’t got a very good image of what it could be like to have small babies around and enjoy them … I think looking back I could have done it and I wish I had, but we make these decisions as best we can at the time. I guess it gave me freedom that other people might not have had.” I asked her if she had perhaps seen the worst side of chronic illness in her work, too, and whether she might end up with a different view of dying naturally if she didn’t go through with this. She looked at me aghast. “What, plodding on until it gets me?” She would never have regretted her decision to end her life. Not all of us are ready to hold a party at a deathbed, but perhaps we can at least listen to people who are desperately ready for life to stop. Ann felt that in England we had got dying wrong by avoiding discussion and focusing too much on extending life at all costs. She was sad for what she had lost, but she wanted to be in control, to make her own choice to die, not be forced to live in suffering. She felt she had reached her river’s end and wanted to join the sea. But she had to travel too far to find it •

Images:

© PressReader. All rights reserved.