‘Being accepted by an assisted dying clinic saved my life’

As Parliament gears up to debate the controversial end-of-life proposal, one man with Alzheimer’s gives his first-hand perspective

In 2015, Alex Pandolfo was diagnosed with Alzheimer’s and given a prognosis that suggested that while he could live for up to 10 or 11 more years, after the initial three to five years he would likely be totally dependent on care.
Pandolfo’s father, who died in 2003, had suffered from multiple system atrophy and vascular dementia. As his father’s situation had worsened, Pandolfo had given up his work as an academic to care for him.
Pandolfo says his father – who had been a kind and decent man – became abusive, violent, tearful, and was suffering torment.
“The memory that haunts me most is the two weeks before he finally died,” Pandolfo says. “He’d lost all his speech, he’d lost movement. All I can see is those eyes staring at me, pleading ‘do something…’ .
“He wanted to be dead. If somebody had given me a tablet, or said, put that needle right there, I’d have done it, and willingly gone to prison. Because my suffering couldn’t have been any worse than the horrendous suffering he went through.”
When Pandolfo was given the prognosis for his Alzheimer’s, his mind was constantly full – both when “asleep and awake”, he says – of the possibilities of how his life could go, “and it was horrendous”.
He made a plan to do two things. The first was to apply to join Lifecircle, a Swiss organisation that offers assisted dying to sufferers of dementia. The second, if that application failed, was to take his own life in 2017, safely before the period, he hoped, when he had been told he would be totally dependent on care.
“That was set in stone. It wasn’t going to be pleasant, and it would be very unpleasant for people who found me, unfortunately, but I knew I would source good quality heroin and morphine.”
In the event he didn’t need to.
After submitting notes of his medical history, the reasons that he wished for an assisted death, and a psychiatric report confirming that he was of sound mind and with the capacity to make that decision, he was given what he calls “the green light” from Lifecircle.
“It would have been an error to take my life, but given the possibilities that were given to me, and if the option wasn’t to have that insurance policy, then that’s the way I would have gone.
“But getting the green light, to use a Biblical term, it was the road to Damascus; it was that moment of enlightenment. I can now focus on living.”
I first met Pandolfo in 2018, when I last wrote about assisted dying – this was three years after he had been diagnosed with Alzheimer’s. The prognosis that by now he would be totally dependent on care was wrong. He lives alone in a neat bungalow in Morecambe, where he seats me in the front room while he makes coffee.
Pandolfo retired from his work as an academic at the end 2015, some six months after his diagnosis. In the expectation that he would soon no longer be needing his books, and with his ability to read fading, he long ago gave away his collection to the local charity shop. His Pink Floyd albums went to a friend. An avid fan of Manchester City, he gave the shirt signed by the first team that hung on his wall to a local charity to auction off.
Now a single abstract painting hangs there.
Pandolfo, who is 69, was born into a working-class family in Manchester. His father had a coal round, and Pandolfo, expelled from school at 14, worked for him for two years before, as he puts it, “going walking” and then eventually working on the buses. Trade union activism led him to a place at Ruskin College, Oxford, sponsored by the Transport and General Workers’ Union and the Trade Union Congress, and a PhD in a post-structuralist perspective on inclusive education.
He is an affable man, who speaks of his condition with a disarming matter-of-factness, and who, with the academic’s logical and methodical mind, has taught himself to manage the effects of his declining faculties, planning his daily routine on his phone, setting alarms for everything. “Lose that phone, and I’ve lost my life.”
He has been on three different types of medication, he says, “but had an adverse reaction to them and stopped”. He struggles with being in crowds, and finds things, as he puts it, “increasingly difficult when things go wrong”.
Pondering over a medical or psychological label for his state of mind, he says, the “more simple but accurate” description is “I’m happy. I have restrictions but nothing that says life is unbearable. But if I hadn’t been accepted by Lifecircle, I would have been dead for at least five years.”
Pandolfo is no longer able to speak at public meetings as he once did, but he remains an active campaigner for assisted dying, giving interviews (one, improbably perhaps, with the website LADbible gained 220,000 views) and offering support and advice to people applying for assisted deaths in Switzerland.
Assisted dying remains illegal in the UK, but Parliament is expected to debate the new Terminally Ill Adults (End of Life) bill, introduced by the Labour MP Kim Leadbeater, within the next two months.
In the last Parliamentary debate, in 2015, MPs voted overwhelmingly against the proposal by 330 to 118. But opinion appears to have been shifting in recent years as the subject has come to the forefront of public debate.
In February, a House of Commons inquiry, conducted over two years, concluded that current legislation was unsafe and inadequate, leading to the Health and Social Care Select Committee calling on the Government to engage in debate as reforms become “increasingly likely” across the British Isles.
A poll conducted in March by Dignity in Dying, which campaigns for assisted death, and which canvassed the views of more than 10,000 people across the UK, showed that 75 per cent of respondents supported making it lawful for dying adults to access assisted dying in the UK, while just 14 per cent opposed it.
The private members’ bill tabled by Kim Leadbeater is modelled on the bill tabled in the House of Lords by Lord Falconer in July.
The bill proposed that a person who is terminally ill may request, and lawfully be provided with, assistance to end their own life if the court is satisfied they have the mental capacity to make the decision to end their life, and they have been diagnosed with a terminal illness, and are reasonably expected to die within six months.
That time period has not yet been confirmed in the new bill, but it has worried some doctors who point to research, obtained by The Telegraph last month, showing that half of patients who are expected to die within six months to a year outlive expectations, which could lead to people who have been given the wrong prognosis dying prematurely.
For Pandolfo, the proposed law, not least in the stipulation of “terminal disease”, falls far short of what he believes should be the acceptable criteria.
In Canada, the law requires that a person must have a serious illness, disease or disability; be in an advanced state of decline that cannot be reversed; and experience unbearable physical or mental suffering from their illness, disease, disability or state of decline that cannot be reversed under conditions the person considers acceptable.
In Switzerland, the criteria are that a person be suffering from an incurable disease, unbearable suffering or multiple disabling conditions, including “incurable, permanent, and severe psychological disorders”, dementia among them.
In 2013, an 83-year-old became the first known Briton to have ended his life at Dignitas following a diagnosis of dementia.
“My criteria,” Pandolfo says, “is basically that any person at the age of consent who has capacity and has some form of condition or illness that cannot be cured or treated, and that has permanent or detrimental impact on their quality of life, should be able to apply for assisted dying.”
But many people live with conditions that have a detrimental impact on their quality of life without any suggestion they should avail themselves of an assisted death.
“Of course! But that’s about choice.
“When I was younger I thought if I had to go in a wheelchair I’d rather cut my throat. But I don’t feel like that any longer. I can see how I would survive and live like that.
“Many people spend most of their life totally incontinent. I wouldn’t want that. But it’s all about choice and autonomy; and the quality of life is for you to decide, not somebody else. It’s not about having a condition that a doctor needs to validate; you can validate your quality of life for yourself.”
We talk about the question of coercion, often raised in the debate; the risk of somebody old and vulnerable being steered or coerced towards an assisted death by their family.
But he says the reverse can happen. He gives the example of one case he’s familiar with, of a man with a severe condition who has been given the green light by a Swiss organisation but whose family have been cajoling him not to go. “I’ve said to him, are you sure the time is right for you? Because if it is, you’d have gone.
“This is one of my arguments about the risk of being coerced into something. One of the most counter-intuitive things to do is to take your own life. Another person had a date in November because of depression, but now that’s been put back indefinitely, and she’s looking at setting up a little business. And that’s great. We shouldn’t be coercing people to go, any more than we should be coercing them not to go. It must be a question of free choice.”
In 2021 Pandolfo accompanied Dawn Voice-Cooper, a former mental health worker and an active campaigner for assisted dying, to Switzerland, where her life ended in the Lifecircle clinic.
Voice-Cooper, who was 76, had suffered from a litany of incurable health problems, including severe arthritis, repeated brain bleeds and epilepsy, describing her quality of life as “at times unbearable”.
“I really expected her to be coming back on the plane with us,” Pandolfo says. “I didn’t expect her to go through with it. But she did. I think there’s that question in everybody’s mind; is it the right time? Am I going to do it now? It’s such that what you are experiencing in terms of your personal suffering overrides everything else.”
So how will Pandolfo know when the time is right for him? Suffering from Alzheimer’s as he does, the decision as to when to end his life presents a terrible dilemma.
He would need to meet the criteria of being of sound mind in order for an assisted death to take place, when he possibly has weeks, months or even years of “sustainable” life in front of him.
Given the uncertainty over timing, he would like the provision in any future legislation of a “living will”, as exists in Dutch law, whereby someone suffering from dementia would be able to leave a directive to be euthanised when they no longer have capacity and if a physician rules they are experiencing unbearable suffering with no prospect of improvement.
As it stands, there will never be “the right time” for him, he says, “because I don’t know when the right time is”.
For now, he watches himself – and others – for signs.
“I’d never ask anybody to tell me or point out, it’s time for you to go. Because it’s not for them to do that, it’s for me to make the decision. But throughout my life I’ve been very adept at reading body language. I can tell when I’ve made a mistake because it registers on people’s faces. When I start seeing that reaction more and more, that’s one of the indicators.
“Being dependent on others – not having autonomy, not having that ability to make choices, decisions. Not being able to get up and go out when I want, whether that be in a wheelchair or not.
“When I found I wasn’t taking meals as regularly as I should do. The little errors you can start making in life – walking away from the stove and leaving it on.”
He talks of one occasion getting into the shower, the water flowing, and then being at a loss as to what to do next. “That routine you have, I couldn’t get to it. And then I just kicked into automatic. And I remember thinking then, if that happens again… So I’ve got a series of things when I’ll know it’s time.”
He thinks on this – and gives one more. “If Pep leaves Manchester City then I’d have to give it serious thought.”
The one thing he hasn’t lost is his sense of humour.