Thursday 30 May 2024

Huge Concerns Over Its Realities

Ian Birrell writes:

Two years ago, over the Thanksgiving holiday, Allison Ducluzeau started to feel pain in her stomach. At first, she assumed she had eaten too much turkey, but the pain persisted. A couple of weeks later, she saw her family doctor who requested CT scans, although none were sorted. Soon after, as the agony worsened, her partner insisted she went to the emergency unit at their local hospital on Vancouver Island. Finally, doctors confirmed the couple’s worst fears: she was almost certainly suffering from advanced abdominal cancer.

Allison, then 56, later learned that she had stage 4 peritoneal carcinomatosis, an aggressive condition. By the time she saw a specialist early last year, he warned that she might only live a few months longer: chemotherapy tended to be ineffective for her cancer, buying a bit more time at best, and she was inoperable. Instead, she was told to go home, sort out her papers, and decide if she wanted medical assistance in dying.

Unsurprisingly, Allison was devastated. “I could barely breathe — I went in there hoping to come out with a treatment plan but was just told to get my will in order.” That night was the worst of her life as she broke the shattering news to her son and daughter at her home in Victoria. “I told them I might only live for another two months,” she recalled. “If I’d not had my children, I might have accepted MAID [medical assistance in dying] — but when I saw the effect on them, having just been through the deaths of my own parents, it made me dig really deep.”

So, determined to find help, she researched her condition, spoke to doctors as far away as Taiwan, flew to California for scans and eventually travelled to Baltimore for treatment. She had discovered that patients could be given debulking surgery to reduce their cancer, followed by targeted use of heated chemotherapy — yet back in Canada, she could not get even an initial telephone chat with a surgeon who performed such operations for two months. Aided by her tight circle of friends and relatives, she raised almost half the $200,000 cost for the operation by crowdfunding. By the time she managed to see an oncologist in her home province of British Columbia, she was already on the road to recovery.

Today, Allison is in remission. She lifts weights daily, and goes running and cycling. She recently married her partner on a beach in Hawaii in front of her children. But she remains infuriated that Canadian doctors offered to kill rather than treat her. “The way it was presented was shocking,” she told me. “I was disgusted to be offered MAID twice. Once I was even on the phone, when I was on my own having just come back from Baltimore. It left me sobbing.”

As the debate over assisted dying heats up in Britain, with Keir Starmer promising a free vote on the matter if he wins the general election, and with politicians in Jersey approving plans for its use only last week, we should take notice of Allison’s case. For she does not share the ethical or religious concerns held by many opponents of euthanasia. Nor does she oppose Canada’s 2016 MAID reform; she agreed with her father five years later that it was an “appropriate” option for his intensifying pain after many years of prostate cancer.

But she has deep worries about assisted dying being offered by doctors in a health system that is floundering — especially with inadequate and overwhelmed oncology services when cancer patients comprise almost two-thirds of the soaring numbers of citizens opting for MAID. “We do not have a good standard of care here, especially for cancer — and that is why it is so dangerous to have MAID, especially when it can be used to take a bit of pressure off physicians and the government.” She knows of three other cancer patients whose families fear they died needlessly — including the person whose home she bought after downsizing to pay her medical bills in the US.

Allison’s very existence challenges those who argue that Britain — with its flailing health and social care systems, shamefully long waiting lists and historically poor cancer survival rates — should rush headlong into legalisation of assisted death. So, what would she tell those advocating for the reform? “I would tell Britain to only accept assisted dying when the health service is fixed — otherwise it is a very dangerous step to take. We deserve decent and timely care rather than offers of faster death.”

Like her, I have no qualms over the ethics of assisted dying as an atheist — but huge concerns over its realities. This is based on my reporting on the issue from the pioneering nations of Belgium and the Netherlands, with evidence of the implications for vulnerable groups, especially those already suffering medical discrimination and societal marginalisation. One study last year, for instance, revealed eight Dutch people were subjected to euthanasia simply because they felt unable to live with their learning disability or autism, along with 16 other closely related cases. Disturbingly, many included being lonely as a central cause of their unbearable suffering.

Yet until talking to Alisson, I had not considered the implications of injecting this irreversible reform into a struggling healthcare system. In British Columbia, faced with growing waiting lists and corrosive healthcare bureaucracy, there have been reports of a number of cancer patients forced to resort to MAID. Samia Saikali, for instance, a 67-year-old grandmother in Victoria, chose to end her life that way after waiting more than 10 weeks to see a specialist. “The word cruel comes to mind,” said her daughter Danielle, pointing out that, with aggressive cancer, this delay can be the difference between having a shot at life or certain death. “Cruel to be given such a terrible diagnosis and then told to just wait and sit and wait.”

Yet studies indicate that Canada’s cancer care and survival rates are better than the UK, where waiting lists rose every year over the past decade. The NHS target for starting treatment after diagnosis is 62 days, showing how complacency is built into the British health system. But even this dismal target is missed for more than one-third of patients, despite there being evidence that each month of delay reduces the survival chances by about 10%. One study earlier this year into why British survival rates have fallen behind countries such as Canada found the average wait in Scotland for chemotherapy was 65 days — and 81 days for radiotherapy in Wales.

Concerns have been highlighted by Canadian bioethics professor Jaro Kotalik, co-editor of the first full analysis of his country’s reform, who warned British MPs last year that MAID seems to be more and more “a way to compensate for lack of resources and reduce healthcare costs”. He added that palliative care “appears to be a casualty of MAID” with reduced access, leaving some patients to feel that assisted dying was their only option since “their suffering has been inadequately addressed or because they perceive that their families or social supports would carry an excessive burden”.

Kotalik maintains that there had been far too little investigation or oversight of MAID since its introduction. “There is no real governance of this national programme, which relies for the purpose of collecting information about applicants and deaths entirely on self-reporting by providers,” he said. “I’m concerned about the possibility of people choosing MAID without the full or correct diagnosis, especially in cancer when oncologists are not involved. Options for a cancer patient should not be assessed just by a general practitioner or nurse practitioner so I worry patients are not fully informed about alternative options with different treatments and more comfortable outcomes.”

Such warnings become even more pertinent in light of the surging MAID toll on Vancouver Island, a haven for wealthy retirees with its beautiful beaches, forests and mountains. Euthanasia campaigners often reject claims that reform leads to a “slippery slope”, although numbers keep rising and icriteria have been expanded in nations that led the way. In the Netherlands — which in 2002 pioneered assisted dying for patients — it accounts now for one in 20 fatalities, with 58 couples dying together last year and the rules extended to include terminally ill children.

Canada has also seen MAID cases soar each year — and once again, protections have been eroded. In 2021, the central rule that natural death had to be “reasonably foreseeable” was removed. Latest figures disclosed that 13,102 people ended their lives under the scheme in 2022, a rise of 30% over the previous year despite postponement until 2027 of the controversial expansion to people with chronic mental illness. The country is catching up fast on Holland’s rate with 4.1% of deaths aided by doctors. Its annual MAID report also revealed that more than one-third of those choosing to die felt themselves a burden on family, friends or caregivers. Inevitably, there have been significant controversies with reports of pressurised fatalities involving disabled, elderly and impoverished citizens.

Meanwhile, the rate of MAID cases under Vancouver Island’s health authority is more than twice as high as the rest of Canada; indeed, it may well be the world’s highest since it accounts for almost one in 10 deaths. I heard various explanations for this, ranging from the struggling state of the region’s cancer services through to a history of legal, social and medical activism in support of euthanasia.

Prominent practitioners include Stefanie Green, founding president of the Canadian Association of MAID Assessors and Providers, who has assisted more than 400 deaths. She spent two decades as a family doctor focusing on maternity and new-born care before turning to assisted dying. “I’d always been interested in the intersection between medicine and ethics,” she told me. “The more I looked into it, the more I was drawn to it. The skill set was almost identical. It required a knowledgeable person to take people through a natural event. I would be with them during a very intimate event. It would take time to build up the trust. It is intense, it is intimate, there are the family dynamics.”

When I asked if medically induced death was really “a natural event”, she insisted that “the death is imminent” before adding that she found the work deeply moving. “Patients are grateful, families are grateful, and I am facilitating their final wishes. I am certain in all the cases they are 100% eligible, both legally and medically. The work is done properly. It is not for me to decide on their situation. It is their personal autonomy.”

Green is both passionate and proud of her work: intriguingly, she faces far more protests over the single day a week she spends performing infant circumcisions from campaigners who argue it is an infringement of the child’s rights. She agrees, however, that patients such as Allison have every right to feel disappointed. “She should feel aggrieved that the Canadian health system is not working efficiently and failed her. I will also demand better resources with more doctors and nurses. The government has failed — but that is not reason to cancel the MAID programme. It needs to be delivered carefully and cautiously.” Likewise, she agrees society often fails people with disabilities. “We must act to remedy this — but this shouldn’t mean we cancel desired, needed, legal medical services.”

Green stresses that MAID requires people to make their own request to terminate their lives. “It cannot be triggered by anyone else. It cannot be coerced — subtly or explicitly. It must be consistent with their own values; they must demonstrate capacity. It is far, far more common to see people coerced out of their request for MAID than to have someone show up who has been coerced into making this choice — which we then note and find them ineligible.”

This debate is a moral minefield, with emotive and valid arguments on both sides. There is, however, a global drift towards legalisation of assisted dying, from Ecuador to Germany. In Britain, as lawmakers across the Channel prepare to debate assisted dying, YouGov polling suggests similar legislation would be backed by 44% of voters, although 31% remain unsure — and surveys have suggested twice as many people with disabilities would be concerned by a change in the law as support it, despite claims from campaigners to the contrary.

Christopher Lyon, a social scientist at the University of York, believes Britain should be very cautious in following Canada’s lead after witnessing his father’s assisted death in a drab Victoria hospital room in the summer of 2021. He was left highly disturbed by the experience, believing his father failed to meet the correct criteria for being moved rapidly to the category of “reasonably foreseeable” death, as well as being depressed and possibly drunk when giving consent. “It was absolutely horrific,” he said. “Britain would be wrong to go down this path. You see some people making the same arguments as in Canada about personal autonomy, control and the right to make decisions to end your life. It is perhaps a choice for people in very rare cases with extreme and unmanageable suffering at the very end of life, which is not what we see in Canada. But there is no doubt the evidence points towards a slippery slope with widening access — although it is really more of a cliff face. Ultimately, I doubt any assisted death system can be made safe.”

Lyon told me he was neutral on this issue before seeing his 77-year-old father die. “It is horribly hard to see your father in distress being killed by a doctor with no attempt to help. It is almost indescribable. It came across as so cruel — but also so avoidable.”