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The Guardian - UK
The Guardian - UK
Politics
Harriet Sherwood

‘Once you take choice away, there’s nothing left’: assisted dying edges closer in Jersey, but can they protect against a ‘duty to die’?

Hospice patient Lynne Cottignies
Lynne Cottignies, who is under the care of Jersey’s ‘faultless’ hospice service, says she would like to choose the timing and manner of her death. Photograph: David Ferguson/The Guardian

Lynne Cottignies has been planning her funeral. A wicker coffin and a church service with Ave Maria and All Things Bright and Beautiful, followed by a wake at the Royal Jersey golf club where she was lady captain a few years ago. Later, close friends and family will scatter her ashes on a beach near her Jersey home, a spot where they have enjoyed happy sunset barbecues.

Between now and then, Cottignies, 71, faces the prospect of increasing and potentially unbearable pain as the cancer that started in her breast spreads. “I’ve had a lot of different chemo treatments, and just about every side-effect possible. But now time’s up. I’m too weak for anything else.”

Planning her funeral is “weird but quite satisfying”, she said. “I want to get it all sorted so my family don’t have to worry about it.”

Her oncologist recently estimated she had between two and six months to live. Cottignies is under the care of Jersey’s “faultless” hospice service, but she would like to be able to choose the timing and the manner of her death. “I’ve always been in favour of assisted dying, but it’s all become clearer now. You spend all your life making choices, and suddenly that’s whisked away.”

Three years from now, Jersey residents in her position may be granted that choice. The island’s parliament, the States Assembly, is due to discuss proposals for legalising assisted dying on 21 May. If a decision is taken to proceed, a bill will be voted on towards the end of 2025, and an assisted dying service would likely be in place by mid-2027.

Elsewhere in the UK and British Isles, steps are also being taken towards legalising assisted dying. The Isle of Man – like Jersey, a crown dependency with its own legislature – could become the first jurisdiction to change the law with a bill progressing through the Tynwald. Assisted dying could be available to residents from 2025. In the Scottish parliament, a bill to allow assisted dying for terminally ill adults could have its first vote later this year.

At Westminster, both Rishi Sunak and Keir Starmer have promised to allow time for a backbench bill in the next parliament under pressure from public opinion and a significant shift in the views of MPs since the last vote in 2015.

In Jersey, members of the assembly will debate and vote on two options. Route 1 would allow assisted dying for terminally ill adults who are expected to die within six months. Route 2 is in addition to Route 1, and would allow assisted dying for adults with “an incurable physical medical condition that is giving rise to unbearable suffering that cannot be alleviated in a manner the person deems to be tolerable”.

In both cases, assisted dying would be available only to people who have been residents of Jersey for at least a year; applicants must have the capacity to make their own decisions; and healthcare staff will be required to proactively opt in to a new assisted dying service.

The proposals were drawn up after the deliberations of a citizens’ jury, which heard from expert witnesses and people with lived experience over 10 sessions in 2021. The 23 jurors, chosen at random but reflecting Jersey’s demographics, overwhelmingly backed assisted dying for adult Jersey residents with terminal illnesses or enduring unbearable suffering caused by physical conditions. They split 60:40 against assisted dying for people with unbearable suffering caused by mental conditions.

In the run-up to this month’s debate, the Jersey government has been holding public meetings. People have raised concerns about whether the eligibility criteria could expand in the future, whether Jersey has enough healthcare staff to deliver an assisted dying service, and whether the “opt-in” conscience clause would be watertight.

People have also expressed worries about how “unbearable suffering” in Route 2 would be measured, and whether people with serious physical disabilities would feel their lives were less valued.

John Stewart-Jones, a retired GP and founding pastor of Jersey’s Freedom Church, said he was “opposed in principle to assisted dying, but I also don’t believe there are sufficient safeguards” in the proposals.

“For example, how do you detect coercion? People who are being coerced don’t always realise it, and if a patient is vulnerable and feeling they are a burden, they can be easily manipulated. Instead of being a right to die, it becomes a duty to die.

“Laws exist not just to give people rights and choices, but to protect people. For example, speed limits: we don’t have freedom of choice to drive however fast we like because it has an impact on others. But we live in a time when personal autonomy reigns, rather than what’s best for society.”

He also rejected the argument that assisted dying would allow people to escape extreme pain. “In my years as a doctor, I’ve heard stories about people dying in agony, but that’s not my experience. If there is pain, the important thing is to address that pain.”

Another Jersey GP, Nigel Minihane, takes a very different view. “It doesn’t really matter what doctors think, it’s the patient that matters,” he said. “In my professional lifetime, we’ve moved to doctors working with patients on their treatment options. How is it right, at the end of life, to say we know better than you?”

Minihane stressed that he supported Route 1 – people “who are already dying” – and believed Route 2 was a “step too far”. Although opinion polls showed a majority of the public in favour of assisted dying, it was “more 50:50 among doctors”, he said.

In places which allow assisted dying, about two-thirds of those who requested it and were eligible “don’t use the drugs in the end. Talking about it and doing it are very different things, and the desire to hang on to life is pretty strong,” he said.

Michael Talibard, a retired teacher who helped found End of Life Choices Jersey five years ago, said health professionals placed too much emphasis on longevity, rather than quality of life. “They think it’s good for people to live as long as possible. But the older you are, the more you know that’s not true. At 80, I don’t mind if my life is a bit shorter as long as it’s good quality. You can be damn sure that most people of my generation are in favour.”

As a “Jersey man”, he was “proud that we’re leading the way”. Attitudes on the traditionally conservative island were changing, he said. “We’re more forward-looking than we’ve ever been.”

Another islander who would have been proud of the path Jersey may take is Alain du Chemin, who died aged 50 of an aggressive brain tumour three years ago. He spent his last months campaigning for assisted dying to be legalised.

“It was very important to him that people should have the choice to die in a dignified way at a time of their choosing,” said Paul Gazzard, his husband. “If the States Assembly votes to bring forward a law, it will be an amazing legacy.”

Cottignies, meanwhile, hopes that her last days will be spent in the local hospice – and that her son, who lives in Canada, will manage to reach her bedside in time to say goodbye alongside his sister and father.

“I don’t want to die in hospital, and I don’t want to die at home because I think that will create difficult memories for my family. But I don’t know how much choice I’ll have,” she said. “That’s what this is all about. It’s obviously a sensitive subject, and people have different views. But once you take choice away, there’s nothing left.”

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