Alex Pandolfo has lived what many would agree is a full life. He shows pride in his experiences as a grassroots campaigner and reminisces on his time studying at Oxford University and working for years as a lecturer. Just a few weeks ago, Pandolfo was at the beach, soaking up the sun with his sister, Gina Maria Ackroyde. In his photos, grins cross their tanned faces. With a hearty laugh, witty sense of humor and countless experiences, it might come as a shock to some that Alex plans to die in the coming years.
But planning his death is not about suicide: it is about avoiding suffering.
In 2015, Pandolfo was diagnosed with early-onset Alzheimer’s. As a boy, he grew up watching his father, Vincent Pandolfo, suffer from the same illness. This is why, he explains, he is a supporter of assisted dying and decided that he will seek an assisted death when his condition worsens.
But in the United Kingdom—Pandolfo’s home country—assisted dying is illegal. If Pandolfo wants to receive an assisted death, he has to fly across the British Channel to Switzerland to receive one, spending upwards of 10,000 pounds.
This contrasts with the fact that countries around Europe and in the Commonwealth are increasingly implementing or decriminalizing assisted dying. In Ireland, an assisted dying bill was in the third stage of the legislative process as of late 2020, while Germany’s highest court overturned a section of the criminal code forbidding all types of assisted suicide in early 2020 and Spain approved a euthanasia law in early 2021. On the other side of the world, New Zealand passed a referendum to legalize assisted dying for the terminally ill in late 2020.
While pressure is growing in the UK to legalize assisted dying, Brits still travel to Switzerland to receive one. What is already challenging and already inaccessible for some has been even more waylaid by the COVID 19 pandemic—a challenge on top of what advocates point out are already financial, legal, and logistic hurdles.
Pandolfo’s story is one of many from a country whose future of assisted dying remains unclear. Nevertheless, the attitudes of some are optimistic that the laws will come to fruition in coming years as support grows. In the UK, the fight for assisted dying, is a story of personal accounts, years of court battles and fear from both advocates and critics of assisted dying.
Assisted dying advocacy organizations like Dignity in Dying and My Death, My Decision make similar cases for changing the Suicide Act of 1961, which states that helping someone die is a crime with a maximum jailtime of 14 years. This law covers assisted suicide, and euthanasia is forbidden by British legislation regarding homicide.
The Parliament at Westminster and the Scottish Parliament have repeatedly rejected challenges to the law. Despite wide public support, legislators in England and Wales defeated a 2015 assisted dying bill—the most recent one introduced—by 330 to 118. Assisted dying “superstar” Noel Conway has made international headlines for years through numerous lost court battles and videos published by Dignity in Dying following his journey to urge politicians for a change in the laws.
Conservative Lord Hayward re-introduced the Assisted Dying Bill to Parliament in 2016. That bill did not make it past its first reading in the House of Lords.
“Many more Members of Parliament (MPs) have changed their minds since the vote in 2015,” Media and Campaigns Manager for Dignity in Dying Ellie Ball said.
For instance, Conservative Party MP Daniel Kawczynski used to be against assisted dying; however, after lobbying from Conway, Kawczynski’s constituent, Kawczynski announced that he had “firmly changed his mind” on this issue of assisted dying. Along with other advocacy groups, he is also calling for an inquiry into the current law, which would be an independent call for evidence on how the current law is working and the impact of the current law on society.
But not all MPs are changing their minds.
“I think that there are many MPs that still hold the view that it is a very dangerous route to go down,” Alistair Thompson from the anti-assisted dying group Care, Not Killing said.
TRAVELLING TO SWITZERLAND
Because of the current law, the majority of Brits seeking assisted death—about one a week—travel to Switzerland, the only country in the world that allows non-residents to come to the country for an assisted death.
But pro-assisted dying organizations point out that those seeking an assisted death can pay between 8,000 pounds to 15,000 pounds to receive an assisted death in Switzerland, including medical and travel costs. However, the majority of Brits have less than 10,000 pounds in savings. Additional hurdles include logistical issues and needing to be healthy enough to travel abroad. The latter means for some that they will need to go Switzerland earlier than they would like to receive an assisted death.
According to New Zealander Dr. Jessica Young, whose research focused on assisted dying, surveys indicate that there is actually greater support for assisted dying in the UK than in New Zealand, with about 86% support. However, New Zealand has passed assisted dying legislation before the UK.
But New Zealand’s change in the law was not an easy process; the New Zealand referendum, after all, only passed at 65%. This highlights the large efforts it often takes for a country to pass assisted dying legislation.
“It took a lot to get this law over the line in New Zealand, huge debates, massive resistance from religious MPs in Parliament,” Young said.
SUPPORT LEVELS FOR NEW LAWS
Current support levels in the UK show the majority of the population and almost half of doctors supporting assisted dying in some regard.
In 2020, the British Medical Association (BMA) carried out a poll asking medical professionals’ opinions on various facets of assisted dying. 28,986 members filled out the poll, and about half of those surveyed were in favor of a change in the law to allow doctors to prescribe life-ending drugs and a little less than half were in favor of a change in the law to allow doctors themselves to administer the life-ending drugs.
Northern Ireland voters showed the highest opposition to whether the BMA should support patient’s self-administering drugs to end their own life. The polls also showed that medical students had the highest support for the BMA supporting a change in the law to allow patients to administer life-ending drugs, while general practitioners had the lowest support.
In regards to the principle of assisted dying, half of those surveyed supported a change in the law to allow doctors to prescribe drugs that patients could self-administer to end their life, with English, Welsh and Scottish doctors having similar rates of support, and Northern Irish doctors again having the lowest support, at about 40%.
Thompson points out that those in favor of a change in the law are not necessarily doctors who are working with people who are dying.
“The doctors and nurses who deal with death, say oncology, palliative care, those people who are seeing and treating patients who are dying, and general practice, as well, are much more against,” Thompson said.
Palliative medicine practitioners had the highest opposition in comparison to the different medical fields in regards to whether the BMA should support a change in the law, with 70% of those surveyed in opposition. 76% surveyed were against the principle of assisted dying itself.
The support levels for assisted dying legislation among the general population are higher. A My Death, My Decision opinion poll conducted by the National Centre for Social Research also showed that more than 90% of the UK population supports legalizing assisted dying for the terminally ill.
WHAT COULD THE LAWS LOOK LIKE?
The details of what assisted dying advocacy groups want in assisted dying legislation can differ, with varying rules about diagnoses and how much longer a person is expected to live.
My Death, My Decision promotes a model that would allow those who have over six months to live to seek an assisted death—the Canadian Model—while Dignity in Dying promotes a law that would require one to have less than six months to live—the Oregon Model.
This can have a real impact on someone like Pandolfo, who wants to be sure he can get an assisted death before his condition deteriorates. Pandolfo is an advocate of the Canadian model.
This is because the Oregon model, according to him, would leave out a large portion of the population who might be interested in seeking an assisted death. For example, people with Alzheimer’s would often not be included because they can often go for longer than six months living in a highly deteriorated state or they might lose mental competence required to make the decision before reaching the six month period.
“If I am still alive with six months left to live, I wouldn’t have [mental] capacity. Therefore, I would never qualify for an assisted death [under the Oregon model],” Pandolfo said.
He wants to ensure that if the laws come into fruition, people like him and his late father would not be left out. Pandolfo’s father had dementia, and as his father’s condition worsened, he became violent, aggressive and lost a lot of cognitive abilities.
“Five years of his life was a horror,” Pandolfo said. “The very antithesis of what he had been previously, and that was suffering for him, and he didn’t want it, so how can we justify that kind of suffering?” Pandolfo asked.
Pandolfo pointed out that his father also supported assisted dying.
Having an assisted death, Pandolfo believes, would help him avoid a similar suffering.
“I’m already dying, and all I am saying is what I’d like to do is assist with death with taking place prior to all suffering—the physical, the psychological and the emotional pain—and I’m experiencing it,” Pandolfo said. “We’re not suicidal. We want to live, and that’s what people get it wrong, a lot of the time.”
Like Pandolfo, Englishwoman Anita Brown who was diagnosed with neuroendocrine small cell bladder cancer at the age of 46, knows that she wants to avoid this suffering at the end of her life.
“Give me something, let me go when I’m able to go, when I want to go, when I feel it’s right,” Brown said.
Brown thinks she knows what the hold up on the laws is.
“Honestly, our government. That’s the problem here. These decisions are being made by old school gentlemen, higher up, white male, middle-class, who aren’t in the same situation that we’re in,” Brown said.
On the other hand, critics of assisted dying say that the focus should be on palliative care. Thompson, for example, points out that with good palliative care, assisted dying is not necessary because a patient’s physiological and psychological needs can be accounted for.
However, even with universal access to hospice or palliative care, some people with certain conditions could still suffer.
“Even with the best palliative care there will still be people who suffer, and that’s for whom this law is for. And the Australian data says at least 5% of people suffer unbearably at the end of life,” Young said.
Young does not believe that end of life treatment has to be an either palliative care or assisted dying situation. Often, assisted dying is used in conjunction with palliative care.
“It’s an if and when the palliative care stops working, then this is my final choice to control my suffering,” Young said.
Assisted dying could even have benefits for end of life treatment.
“When Victoria passed their legislation, they saw a huge funding increase, and I know the other jurisdictions have seen palliative care increase, like Oregon had a bit of conversations around end of life,” Young said regarding palliative care.
COVID PRESENTS ADDITIONAL CHALLENGES FOR TERMINALLY ILL BRITS
In addition to already existing challenges for the terminally ill in the UK, the coronavirus pandemic has introduced additional problems for those seeking an assisted death.
Because of the UK’s high rates of COVID throughout 2020 and 2021, travel restrictions for the UK have changed repeatedly. According to Ball, not being able to get to Switzerland because of COVID-19 restrictions also has caused some people to undertake “horrific methods of suicide” because of their desire to control their death.
“One example is a woman who ended up throwing herself off a building because she was unable to get to Switzerland, so people are really in a desperate situation,” Ball said.
But the pandemic has had some benefits for the fight for assisted dying in the UK: death and palliative care have become central issues of public and political discussions.
“I think COVID has brought death to the forefront, big time. It’s actually making us now face our immortality,” Brown said.
So what is the timeline for possible legislation? Currently, this is up to speculation.
Moore believes that it is something that could occur unexpectedly, similar to same sex marriage laws being introduced “out of the blue” under David Cameron’s government.
“Before abortion was made legal, people said it’ll never happen, and just suddenly something zeitgeist changes,” Moore said. “It could actually happen [in four years] because you only need some influential people to start speaking out in favor, and it can have a sort of domino effect.”
Pandolfo thinks it is possible that assisted dying will become legal in Scotland or Wales before in England.
“I think it will be legalized in Scotland or Wales first because even though they are not independent countries, they have certain devolved power,” Pandolfo said.
For organizations like Dignity in Dying and My Death, My Decision, the restrictions due to COVID-19 highlight the need for legalizing assisted dying in the UK. Advocates point to the world to show what is going on in other countries and that until changes are made, the current UK laws are an issue of equity.
“People like me that are privileged enough to get the 10,000 pound have that choice in Switzerland, but the vast majority of this country that are socially and economically deprived don’t have any choice at all,” Pandolfo said.
Where Brown and Pandolfo will die in the coming years is unclear. In the meantime, they continue to spend time with their family members and monitor their conditions.
But Moore feels confident that the tides are turning.
“One would say the tide is rolling in favor of this happening, and so we think it is a matter of time, not whether it will happen,” Moore said.