Assisted dying: The right to die shouldn't only be for the rich. But could legalising it harm the poor?
People feel 'priced out' of a dignified death because going to Dignitas is so costly. But there are fears vulnerable people would be 'lining up in their droves' if assisted dying was legalised
Norman Ward died after facing a "world of pain". Image: Supplied
Share
Gareth Ward’s voice breaks as he remembers his elderly dad Norman, who took his own life after a 15-year battle with terminal cancer. He ended his pain but it plunged the family into trauma they are still coping with years later, and Gareth is now a passionate campaigner for assisted dying.
“We’re not a rich family and we couldn’t afford that anyway,” Gareth says. “But if assisted dying was an option in this country, I guarantee that he would have taken it. He wanted to carry on for as long as he could, and then he just wanted to end it.”
Assisted dying is illegal in the UK but the law often turns a blind eye to people going to Dignitas in Switzerland. Accompanying loved ones risk prosecution, with a maximum sentence of 14 years, but the majority of cases do not lead to charges.
A major obstacle for people who want to die at Dignitas is the cost, averaging around £10,000, making it off limits to people like Norman.
“It is like you have been priced out of a decent death,” Gareth says. “If you can’t afford it, you’ve just got to suffer. The care he was receiving was good. The hospice and palliative care team did as much as they could for him but, ultimately, that amounted to more and more morphine.
“I guarantee that if it wasn’t so cost-prohibitive, and if it was an option for him, he would have taken that. But it wasn’t an option open to him. He would just laugh when we would talk about it. I think his view was that he had his own poor man’s version of Dignitas.”
Advertisement
Advertisement
Those campaigning for assisted dying to be legalised in the UK believe the tide is turning, with recent polling showing that two thirds of Brits back a change in the law. Esther Rantzen and Prue Leith are recent celebrity advocates, and Labour leader Keir Starmer – who could well be the next prime minister – has expressed his support.
A new report from the Health and Social Care Committee found evidence that assisted dying has led to better end-of-life care in countries where it is allowed, prompting Rantzen to renew her calls for a parliamentary debate.
Bills in the Isle of Man, Jersey and Scotland are set to move forward this year. Assisted dying is likely to be an election issue, with senior MPs of all parties backing a debate.
Rishi Sunak recently said he would support allowing enough parliamentary time for a meaningful debate and vote on assisted dying.
But there remain fears that without rigorous safeguards in place, legalising assisted dying could put vulnerable people at risk. One disability campaigner told The Big Issue she fears people could be “lining up in their droves” – as failures of the welfare state, social care system and healthcare service can make life unlivable.
Norman grew up in Cardiff with 12 siblings and they had little to live on, but he had a good life. He joined the army when he was old enough and was posted to Gravesend, Kent where he met his wife and settled down. They had three children, and Norman became a builder.
Advertisement
“He was an easygoing man,” Gareth, 47, says. “He spoke his mind. He didn’t suffer fools.”
Norman’s wife died of a heart attack in 2001 and left him on his own. He had a big circle of friends, a beloved dog and kept himself busy, but then he was diagnosed with prostate cancer aged 60.
“He told me that first day that he would kill himself before the cancer got too bad,” Gareth says.
Hormone therapy kept Norman relatively healthy for a decade, until the cancer spread to his bones, rippled through his pancreas, his lungs and the rest of his body. Upping the morphine clouded his mind.
He fell and broke his leg while walking the dog. He dragged himself a mile before anyone found him. A stroke followed, and he lost his vision and much of his mobility.
“He was in a whole world of pain,” Gareth says. “The last time my sister dropped him off at my house – it sounds like an awful thing to say – but he looked like some sort of zombie. He was an absolute shell of himself. He came in with such sunken eyes. He was dying in front of our eyes.”
Advertisement
Norman was 75 when he decided to die. He called his children to tell them what he was about to do. Gareth’s sister rushed to the house but it was too late. She is still struggling with PTSD now.
“I do not believe in blanket euthanasia,” Gareth says. “I think it’s unsafe. I think people should be protected. But you wouldn’t have to be a doctor to look at my dad and realise that he was going to die very soon. I would like a safe and controlled mechanism for people who are terminally ill and can speak for themselves and aren’t being pressured.
“When it is cruel to keep this person alive, we have to allow them to make a choice for themselves, rather than leaving them in agony. I would love for the law to be changed. I would want it to be protective. I wouldn’t want a system that could be abused.
“But for people like my dad, who were very obviously in huge amounts of pain at the end of their life, I would like recognition that says that they shouldn’t have to suffer anymore and they could have autonomy over their own lives.”
Sarah Wootton, chief executive of Dignity in Dying, agrees. She says: “The injustice of the UK’s ban on assisted dying affects us all. At the moment, the only safe, legal option sits behind a paywall which only the privileged can afford. With the price of accessing this option in Switzerland skyrocketing in recent years, choice over how we die is now out of reach for the vast majority of terminally ill people in the UK.
“For those who do not have the money or the physical strength to travel to Switzerland, the current ban is unsafe and unfair. Thousands of us every year suffer agonising deaths, despite the best efforts of palliative care, while hundreds of dying people take their own lives, using dangerous methods and often in secret and alone out of fear of incriminating loved ones.
Advertisement
“There is a better, fairer, kinder way. Mounting evidence from countries like Australia and New Zealand proves that assisted dying laws are safe and work well, providing choice and protection.”
But many fear the system could be abused. In Canada, which first legalised medical assistance in dying (Maid) in 2016, there have been a number of reports that people have opted for assisted death at least in part because they could not afford to live.
A chronically ill woman ended her life in February 2022 after pleading for affordable housing and saying her disability benefits were not stretching far enough.
“The government sees me as expendable trash, a complainer, useless and a pain in the ass,” the woman said in a video obtained by CTV News.
Another similar case in May of the same year saw a woman apply for assisted dying after a struggle to find suitable housing and benefits failing to cover her living expenses. Both women had a condition called multiple chemical sensitivity and believed that specialised housing would ease their symptoms.
The cases prompted fears that assisted dying could be seen as a solution for social issues, representing the failures of society and government to support its most vulnerable people.
But it is perhaps more complicated than that. These women were suffering with debilitating health conditions – and applications are only approved if the patient has a “serious and incurable illness, disease or disability” that is in an “advanced state of irreversible decline”.
They must also face “enduring and intolerable physical or psychological suffering that cannot be alleviated under conditions the person considers acceptable”.
The average age of a Maid recipient is 77 and cancer is the most cited underlying medical condition, representing 63% of deaths in 2022. Just 3.5% were individuals whose natural deaths were not reasonably foreseeable. That’s 463 people.
Canada has recently shelved plans to expand the law to include those with mental illness.
A spokesperson for Dying with Dignity Canada says: “We need to be very clear that just because a person applies for a medically assisted death in Canada, it does not mean that they will be approved. You cannot be found eligible for Maid because of a lack of social services.
“There is a rigorous assessment process and very clear criteria that include suffering from a grievous and irremediable condition where you must be in an advanced state of decline that cannot be reversed. There is a need for increased investments in mental health, disability supports, housing and palliative care and we hope this will result in action from all levels of government.”
Advertisement
But as The Big Issue has extensively reported, poverty, poor housing and an insufficient benefits system can exacerbate physical and mental health conditions. People have repeatedly said they have been driven to suicidal feelings because of the difficulties accessing disability benefits in the UK.
A disabled mother and nurse said she felt “guilty for being alive” because of the financial pressures she was facing and the insufficient support offered by the government in the cost of living crisis.
In Oregon, often considered the gold standard in assisted dying legislation, nearly half (46%) of those who opted for assisted death in 2022 cited “concern about being a burden” as a reason for their decision. Patients have been permitted deaths for anorexia nervosa, diabetes and hernias.
Dennis Queen, a member of Not Dead Yet UK, says: “We want people to help us campaign for equal rights to live in the first place, not to be subjected to brutal systems that make us suicidal. I lost a friend 18 months ago to suicide mostly because of problems with the benefits service.
“It’s not that I don’t think people will opt for this. I’m worried that people will be lining up in their droves because of neglect. There is no way we can avoid that through a safeguard. So while that is the case, it’s not safe to talk about assisted suicide.”
It is an argument echoed by politicians on both sides of the spectrum. Jeremy Corbyn has advocated against it, arguing that he is “concerned that it would be open to abuse and put the most vulnerable people at risk”.
Advertisement
Sir Stephen Timms, Labour MP and chair of the work and pensions committee, wrote in Labour Listlast month: “People with disabilities, the poor and those who fear being a burden are all at risk when assisted suicide is permitted, while investing in high-quality palliative care, which is harder to access for the impoverished, can easily be marginalised when assisted suicide is allowed.”
Queen is a wheelchair user and lives with severe chronic pain which can only be relieved by morphine, and she suffers from incontinence. “My treatment plan now is to up the morphine until I die,” she says.
There have been times where she has felt suicidal and she still struggles with her mental health, but she has three children and a support system and she is grateful to be alive.
“I’m doing a lot better now,” she says. “I had the right help and my life is getting back on track. I’m starting to feel better every day. I know acutely what difference the right support makes.”
Queen has lost trust in the systems meant to protect disabled people, and she does not believe the government is capable of legalising assisted dying while still protecting the vulnerable.
Phil Friend, a disability rights campaigner and co-convenor of Not Dead Yet UK, admits there are times he has felt like a “burden” to his wife. He has had a successful career and a happy life, and he knows that his wife would hate to hear him speak like that, but it is his truth.
Advertisement
Friend says: “If you change this law, you make disabled people vulnerable. And that’s not right. We shouldn’t weaken laws that are there to protect people.”
Friend admits that in cases such as Norman’s, it is hard to argue that he should not have had access to assisted dying, but he believes there must be a proper safety net in place to protect vulnerable people before assisted dying is an option.
Those fighting for assisted dying to be legalised believe it is possible to build a system with proper safeguards in place, arguing that people would never be approved purely due to social issues.
Dr Jacky Davis, who runs Healthcare Professionals for Assisted Dying, has seen patients suffering at the end of their life. She also lost her brother to suicide and has seen her family suffer.
Davis does not believe that the UK would go as far as Canada or Belgium and Holland, where euthanasia is legalised (meaning a medical professional can administer the drug rather than the individual).
“It’s important that every society goes for the law that suits them,” Davis says. She says the majority of people who opt for assisted dying are white, well-educated and have medical insurance – although the cost and the population of countries which have legalised it play into those figures.
Advertisement
People on both sides of the debate agree that vulnerable people must be protected. Some believe assisted dying is the kindest option while others believe that legalising it would put the vulnerable at risk. Some argue that it would let the government off the hook, while others say it would be a wake-up call.
Friend says: “If you could convince me that the safeguards were in place – that the right palliative care and social care had been done and there was no way of relieving somebody’s pain and suffering, having done all of that, then there might be a case of saying okay.
“But we haven’t even got close to providing any of that. Our national health service, as you well know, is falling to bits. Social care is pretty non existent. The benefits system is a mess. So people are making decisions based on having nothing.
“They believe it’s better to die. And yet we know that if you give people the right accommodation, the right social care support, the right palliative medicine, they do not talk about ending their lives. They talk about living their lives.”
Do you have a story to tell or opinions to share about this? We want to hear from you. Get in touch and tell us more.
This Christmas, 3.8 million people across the UK will be facing extreme poverty. Thousands of those struggling will turn to selling the Big Issue as a vital source of income - they need your support to earn and lift themselves out of poverty.