Assisted Dying: Why the experience of elsewhere shows the importance of caution

When Dianne Fry remembers her husband Frank, she finds it hard to get past the pain he suffered at the end of his life. In happier times, Dianne and Frank enjoyed the outdoors and taking their beloved dogs for long walks; an old photograph shows them looking relaxed as they squint into the sunshine on a tree-covered hillside. The couple were married for 46 years, yet it is Frank’s final few weeks which now dominate Dianne’s memories of him.

A former engineer and delivery driver, Frank was diagnosed with prostate cancer in 2015 and initially responded well to treatment. It was only when cancer was found in his bones in July 2022 that his health began to deteriorate, and the pain became unbearable.  

“Everything that could be done was done, but from day one he was in pain,” says Dianne. “The last two weeks of his life were horrendous. We had great support – we had carers coming in, district nurses, Macmillan nurses, palliative doctors… he was in Kilbryde Hospice for nine weeks for pain management and they tried all sorts but could just never get it right.” 

Frank died at home aged 71 in the early hours of a Monday morning in July last year. He had been due to return to the hospice later that day. 

“With assisted dying, Frank could have passed away at a time of his own choosing when he felt he had had enough and was still capable of making decisions, which was up to the last two weeks of his life,” says Dianne. “Up until then, he fought really bravely throughout it all. He didn’t want to die like that, and I didn’t want to see him like that.”  

If Frank’s story is troubling, then sadly it is far from unique. When Lib Dem MSP Liam McArthur brought forward plans for assisted dying legislation in the autumn of 2021 a public consultation was launched that heard harrowing accounts of those forced to watch loved ones’ lives end in excruciating pain and discomfort. McArthur’s bill, which was published last month, would mean a terminally ill person over the age of 16 could be lawfully provided with assistance to end their own life following the assessment of two doctors. 

It’s not the first attempt to legislate in this area at Holyrood. In 2004, Lib Dem MSP Jeremy Purvis lodged a proposal for a bill that would have allowed terminally ill adults to seek medical assistance in ending their own lives. But the bill failed to secure enough support from MSPs for it to be introduced. Six years later, Margo MacDonald introduced the End of Life Assistance Bill which was defeated 85 votes to 16. MacDonald, who had Parkinson’s disease, tried again in 2013 with the Assisted Suicide Bill. Taken forward by Green MSP Patrick Harvie following MacDonald’s death in 2014, it was ultimately rejected by 82 votes to 36.

Despite those earlier setbacks, McArthur believes that a decade on, the dial has shifted on assisted dying. Polling carried out for the campaign group Dignity in Dying last month found that more than three-quarters (78 per cent) of over 4,000 respondents support the MSP’s attempt to change the law. McArthur has also secured cross-party backing, with at least some MSPs from every party at Holyrood in support of the proposed legislation. McArthur’s public consultation found a similar majority of respondents (76 per cent) to be fully supportive of his proposals, while a further two per cent were partially supportive. 

Frank and Dianne Fry | Picture: Contributed

But if there appears to be overwhelming public support for assisted dying, there nevertheless remains plenty of opposition. Religious organisations including the Church of Scotland and the Bishops’ Conference are implacably opposed, but so too are a number of organisations campaigning on behalf of disabled people. Glasgow Disability Alliance, for example, described the bill as “unethical” and said it would put vulnerable people at risk of “coercion” and “abuse”.

In its response, the charity Inclusion Scotland said: “Disabled people are already marginalised throughout society and feel at risk from our health and social care support systems as they currently are. Some disabled people will receive or already be diagnosed with life-limiting conditions. We need support to live and not support to die.”

Concerns over the legislation’s impact on those with disabilities have also been raised by Labour MSP Pam Duncan-Glancy, the first permanent wheelchair user to be elected to the Scottish Parliament, who called the proposal “dangerous” in 2021. Scottish Labour leader Anas Sarwar recently said he had been struck by Duncan-Glancy’s concerns over disabled people’s “right to live, not just the right to die”, adding that he was “not currently minded” to support McArthur’s bill. First Minister Humza Yousaf has also indicated that he is likely to vote against the bill as has Tory leader Douglas Ross.

Writing in a newspaper column last week, former First Minister Nicola Sturgeon said she was yet to reach a final decision but had found herself “veering away from a vote in favour, not towards it” amid concerns that some terminally ill people will feel under pressure to end their lives. 

Yet despite fears over the legislation, Scotland is by no means a trailblazer when it comes to assisted suicide. A number of European countries have already legalised some form of assisted dying, while medically assisted death is legal in 11 out of 50 US states. In Switzerland, home of the Dignitas clinic, organisations providing assisted suicide have been doing so under strict regulation since the mid-1980s. But while the experience of other countries is often highlighted by those in favour of assisted dying, cautionary tales have also emerged.

In the Netherlands, which became the first country in the world to legalise euthanasia in 2002 for patients experiencing “unbearable suffering with no prospect of improvement”, there has been a steady increase in the number of those choosing to end their own lives. The country has both assisted dying, where a patient administers their own fatal dose of medication, and euthanasia, where the drugs are administered by a doctor. Euthanasia can be requested by anyone above the age of 12, although those aged under 16 need parental permission. Patients can also draw up living wills requesting euthanasia in the event of a future dementia diagnosis.

The number of euthanasia cases in the Netherlands climbed to more than 6,000 in 2019 – accounting for four per cent of all deaths, compared to just under two per cent in 2002. While it’s important to note that the law in the Scotland would be different to what’s in place in the Netherlands – and supporters of the proposed Holyrood legislation say there are sufficient safeguards in place – critics warn of the “slippery slope” experienced elsewhere. 

In 2018, the Dutch were gripped by the case of 29-year-old Aurelia Brouwers who was not terminally ill but allowed to end her own life with drugs supplied by a doctor due to her psychiatric illness. Brouwers was followed by a TV crew which filmed her crossing off the days to her death on a whiteboard with a black marker pen. Someone with a long history of mental illness, she had been turned down by her doctors for euthanasia before going to the End of Life Clinic in the Hague, known to be a place of last resort for those whose requests are rejected by their physicians and psychiatrists. Meanwhile, an analysis of euthanasia deaths in the Netherlands published last year found that while the majority of cases involved older people with illnesses such as cancer, Parkinson’s or motor neurone disease (MND), a small number of people with autism and learning difficulties had been euthanised. 

MSP Margo MacDonald campaigned for assisted suicide before her death in 2014 | Alamy

There are concerns too in Canada where medical assistance in dying (Maid) was legalised for eligible adults in 2016 following a ruling by the country’s supreme court. From a little over 1,000 deaths in its first year of operation, Maid cases totalled more than 10,000 in 2021 – 3.3 per cent of all deaths in the country.

In February, plans to extend the provisions of the law to include those with mental illness were delayed amid complaints from doctors and human rights experts that it was now going too far. Speaking to the BBC, Dr Madeline Li, who has overseen hundreds of medically assisted deaths, said: “Making death too ready a solution disadvantages the most vulnerable people, and actually lets society off the hook. I don’t think death should be society’s solution for its own failures.” 

In its submission to McArthur’s consultation on the proposed law in Scotland, the Royal College of Physicians of Edinburgh – which has not taken a position for or against the legislation – cited Canada amid concerns about how quickly the law has evolved. “The College is very concerned to note the speed with which Canada has moved from legislation similar to the proposed Assisted Dying Bill to legislation which allows euthanasia by lethal injection for individuals irrespective of capacity and irrespective of terminal illness,” it said. “We would be seeking assurance and stringent safeguards against that situation occurring in Scotland.”

For terminally ill patients in Scotland palliative care is often provided by the very charities or religious group which oppose assisted dying. St Columba’s, for example, which operates a large hospice in the north of Edinburgh, has warned that any change to the law “might result in vulnerable patients feeling obliged to consider assisted suicide, or euthanasia, as an option, for fear of becoming a burden in the future”.

Tory MSP Miles Briggs is now leading attempts in the Scottish Parliament to improve palliative care, which he says varies greatly depending on what part of the country a person lives in. Briggs, whose own mother died of cancer in a hospice when he was just seven, was involved in Frank’s Law, legislation named after former Dundee United player Frank Kopel which extended free personal care to under-65s.

“I met a lot of families during that period and what was quite telling was how end of life care and palliative care wasn’t well planned and wasn’t necessarily given the priority it should in different parts of Scotland,” says Briggs. “It really opened my eyes that when we talk about the health service being from cradle to grave, that’s not true for the end of life part – it’s [provided by] the charitable sector and very much depends where you are in Scotland. There’s a real postcode lottery for families.”

Briggs, who went on a fact-finding mission to San Francisco with other MSPs in February to learn more about assisted dying, says he’s yet to make up his mind about the bill introduced to Holyrood. He hopes to bring forward his own bill on palliative care possibly as an amendment to the National Care Service Bill or even alongside McArthur’s bill. 

“I want us to do something on palliative care in this session of parliament, regardless of where Liam’s bill goes. I don’t want the arguments to be A or B – I’m not doing this as a reaction to Liam’s bill; I’m doing it as a reaction to what I’ve seen during my time in parliament. 

“The hospice sector at the moment is really under pressure and really concerned with their own finances. How we fund end of life support and care is also part of this debate. If nothing else, I want us to try and use this to shine a light on all the issues…”

Supporters of assisted dying say its very existence would provide comfort to the terminally ill even if they are to decide at a later date not to opt for it. Last year MPs on a House of Commons committee heard that more than 500 Britons had ended their lives at Dignitas in Switzerland, a process which costs around £10,000 and is only available to those fit enough to travel. According to Dignity in Dying, between 300 and 650 terminally ill people take their own lives every year in the UK. 

Tory MSP Miles Briggs says acccess to palliative care is a 'postcode lottery' | Alamy

Responding to McArthur’s public consultation, organisations including the British Medical Association (BMA) said they would remain neutral to reflect the plurality of opinion among their members. But one retired physician, Sir Graeme Catto, a former president of the General Medical Council and a supporter of assisted dying, said: “Knowing that assisted dying is potentially available brings a degree of comfort to all patients whether or not they decide to opt in. Experience from Oregon indicates that many mentally competent, terminally ill adults wish to discuss the issue, with a much smaller number taking the matter further and only around 0.4 per cent opting for an assisted death.”

For Dianne, her husband Frank could not have had better care but yet he still died in pain, a memory she is now struggling to come to terms with. 

“I really think the situation is more dangerous at the moment, not having any legislation, when people will do things they shouldn’t be doing or might have drugs in the house and use them,” she says. “You have no option. If that bill gets passed, at least you an option.”

She continues to struggle with her memories of Frank, the man she shared her life with before his painful death. “It’s hard to remember the better times when I go back to how bad he was and how much he suffered,” she says before pausing. “I’m sure, through time, I’ll start thinking about the better times.”