Why assisted dying is everybody's business
This feature was first published in the May issue of Women's Health and has been updated to reflect recent events.
The diary entry is dated 22/12/2004. ‘I just want her to die,’ reads my angry scrawl. ‘It’s too much, it’s too hard.’ I meant it was too hard for her, my mum – whose brain tumour was slowly killing her. But I also meant for me. When she did die, nine months after a shock diagnosis, it was in a hospice, her face puffy with steroids, her breathing crackly – and I wasn’t there.
As far as deaths go, I think it was peaceful. Maybe I’m just telling myself that – I can’t know for sure. But 18 years on, there’s a question that remains unanswered in my mind: if she’d been given the choice to die on her own terms, weeks or months before and surrounded by her family perhaps, would she have taken it?
Assisted dying is often an umbrella term for voluntary euthanasia and assisted suicide. Euthanasia is when someone (usually a doctor) ends a patient’s life to relieve suffering. If said patient asks for it, it’s known as ‘voluntary euthanasia’. Assisted suicide is helping someone take their own life at their request.
Death – our own, of loved ones – stirs something in us all. Assisted dying is an even more complex, emotive issue – one many don’t dare think about until they’re impacted directly. But that’s changing. In March, French President Emmanuel Macron announced that a bill on assisted dying has been drafted and will go before the French parliament in May.
Here, a proposed law to legalise assisted dying for adults with a terminal illness and who are expected to die within the next six months has been formally introduced to the House of Commons, with MPs set to debate and vote on the issue in late November (although further steps and votes would be needed, before the proposal would become law.)
A range of requirements, including that two doctors must asses the person who wishes to die, and declare them eligible, and that the person must have mental capacity to make the choice, are attached. If passed, this law applies to England and Wales – a separate bill is being discussed in Scotland.
Outside of political chambers, conversations are taking place among families and friends who feel the legal status of assisted dying – central as it is to the concept of autonomy over a person’s own health and life – is something too important to ignore. Online searches for ‘assisted dying ’ increased 300% in December last year, after Childline founder Dame Esther Rantzen, who has terminal cancer, told BBC Radio 4’s Today programme that she’d joined Swiss assisted dying clinic Dignitas.
Of course, it’s a live issue for those in their latter decades, like Rantzen; for people with life-limiting chronic illness or disabilities; and for those whose parents are suffering, like my mum was. But it’s also resonant for those considering the trajectory of their own lives, who are taking a cold, hard look at what those final years might be like. And, when you think about it, it tracks.
Old age has never been more topical. When threats of an increased retirement age (working until we’re 71, cool) clash with a fascination around longevity and fears over the future of an already broken care system hum louder and louder, is it any wonder the assisted dying conversation is fast becoming everyone’s business?
The right to die
As it stands, in England, Wales and Northern Ireland, assisting someone to die is illegal. (As is euthanasia and assisted suicide – definitions over the page.) Those convicted – medical professionals, medics, friends – could face up to 14 years in prison. In Scotland, there’s no specific crime to be charged with, but it’s possible that helping a person to die could lead to prosecution for culpable homicide.
Dignitas, the aforementioned non-profit organisation to which those from the UK can travel for access to an assisted death, can incur costs of up to £15,000. And those accompanying their loved ones and present during the process risk prosecution – and up to 14 years in prison – on their return to the UK.
Right now, in England, Wales and Northern Ireland, assisting a suicide is a crime under the Suicide Act 1961, punishable by up to 14 years in prison. In Scotland, the offence could fall under culpable homicide. Euthanasia is considered murder or manslaughter, with a maximum sentence of life imprisonment.
Individuals at the end of their life and deemed mentally fit to make decisions can deny medical treatment, often to avoid living with detrimental side effects of medication. And everyone has the option, regardless of current state of health, to opt out of being resuscitated. Some people voluntarily stop eating or drinking (known as VSED), with studies showing that consequent deaths range from peaceful to painful, with impaired cognitive functioning.
The absence of an accepted and legal way out is what campaigners believe drives some terminally ill people to die by suicide. A 2014 Freedom of Information request found approximately 7% of deaths recorded as suicide involve people who are terminally ill. That’s more than 300 dying people ending their lives each year. A 2021 report from Dignity in Dying brought together multiple sources to suggest the number could be double – 650 annually – with up to 10 times as many attempts.
Given its nature, the conversation around assisted dying has campaigners fervently supporting both sides of the argument, often driven by lived experiences. Supporters of legalising assisted dying say those already facing a terminal diagnosis should absolutely have the right to have control over their death, rather than face unnecessary suffering. Makes sense.
On the other side, those who campaign against the law change believe that, if passed, it could be exploited to pressure people – especially those who are vulnerable – to end their lives before they actually want to, in order to save scant resources. Entirely understandable, especially when we have incidents where lives have been deemed, by health bosses, to matter more.
Think of those alarming reports of hospitals being told to issue ‘do not resuscitate orders’ for patients with learning difficulties who’d been ill with Covid-19.
To the death
So, if the law were to change in favour of assisted dying, what might it look like? The proposal set for debate is asking for those facing a terminal diagnosis, with six months or less to live, to have the option to take life-ending medication themselves. The individual would need to be considered of ‘sound mind’, with their decision approved by two doctors.
It’s a similar model to the one legalised in Oregon, USA, in 1997, which has since been adopted in Australia, New Zealand and other US states. This legislation would give people already facing death, in the short term, the option to avoid what could be a drawn-out, incredibly painful end. But, equally crucial, campaigners say it could also alleviate the fear of an awful death, looming dark and all-encompassing over someone’s final months.
Wrestling back some agency is key for Maddie Cowey. Six months after noticing a small lump in her shoulder during her first year of university, she found out she had sarcoma – an ultra-rare form of cancer – which had already spread to her lungs.
‘My cancer is unpredictable. It could spread and you don’t know what part of you it will take over,’ she shares. Now 26, she’s on experimental treatment to alleviate the pain, but if that stops working, she wants the option to have the end of her life play out as peacefully as possible.‘It’s not that I want to die,’ she explains. ‘It’s just that at some point, it is going to happen. Cancer has taken so much control away from me already, I want to control my death.’
That last point will no doubt resonate with the 39% of us in the UK who have, per a Dignity in Dying group report, witnessed a family member or friend suffer unbearably at the end of their life. And that report was published in 2019 before the hundreds of thousands of deaths caused by Covid-19 played out across our screens and psyches.
‘He just kept saying, “All I want to do is die, I don’t want to be here any more, just get me on a plane,”’ says Libby Berman, a 26-year-old jewellery brand owner, whose dad was diagnosed with dementia six years ago, soon followed by a terminal cancer diagnosis. ‘For five years, we watched him deteriorate. For a while, he was very much himself, he was a highly intelligent man and knew exactly what was going on, but he couldn’t process it. But then the last six months of his life were horrific, he wasted away in front of us.’
Future fears
When I imagine what waits for me should I reach old age, the picture is bleak. There’s a £2.3bn shortfall in England’s care homes. Reports have found care homes with staffing levels so low – especially those with specialist training – that residents with complex needs are frequently dehydrated and malnourished; in some cases, pads are used – then left unchanged – because staff don’t have time to take people to the toilet.
And according to Age UK, 2.6 billion people over 50 are unable to get care because of low government funding and a postcode lottery-style system. This is despite many struggling to go to the toilet, eat, get dressed or wash without support. It’s not a life I want for myself, and if assisted death was an option, I’d likely take it. And I’m not the only one who’s mulling over the complicated ethics of the assisted dying conversation, driven by questions over the future.
Rachel Dwelling*, a single 33-year-old working in the charity sector, and who expects no meaningful family inheritance, finds herself thinking more about what the future holds. ‘I’ve never been scared of death, but I am terrified of being old and infirm in the UK, with an austerity-stripped state for support,’ she says.
‘I don’t know if I’ll have a partner or children as a support system, and with the ever-increasing retirement age, it’s not like a pension is the financial safety net for old age it once was. I don’t think I’ll be able to afford to comfortably linger on into old age. And to rely on whatever shape the care system is in then feels like a personal hell I’d rather not live through.’
What Rachel’s position highlights is that the trajectory of our lives, from both a health and sociological standpoint, has and continues to shift massively from the well-trodden path of past generations. One in 10 people in the UK live alone. Official 2021 figures from the most recent ONS census say that almost 20% of 45-year-olds are without children compared with 13% of their mothers’ generation – which means the assumed generational contract (parents care for children through childhood, those children care for parents in old age) doesn’t hold.
Over a peppermint tea, Rachel mulls over the idea that if women are choosing to depart from traditional rites of passage – cohabit, marry, reproduce – it could mean choosing to end their lives in old age, in a way that’s supported by law, is no longer radical, and even consistent with a life defined by choosing autonomy.
‘Or is that a grim indication of where society is at? Where individuals being allowed to call time on their existence, for fear over a lack of means to access necessary care and support, could be viewed as a sort of liberation?’ she counters. ‘I don’t know, I don’t have the answers.’
End game
That part – the discomfort that Rachel voices about how wealth comes into this – is echoed by campaigners who oppose changes in the law. Their call? That we need to be aware of the ‘economics of assisted death’ – people feeling like they need to die because they can’t afford to live – and instead focus attention towards fighting for improved healthcare and support.
Rose Finlay, living in Ontario, Canada, could be considered a case in point. The 33-year-old has been quadriplegic since her spinal cord was injured when she was 17. Last year, she took to Instagram to compare the startling contrast in time taken to get government-funded healthcare to end her life with the wait list for disability support – it’s 91 days for the former and six to eight months for the latter.
In Ontario, rules state those who are mentally competent, over 18 and have a ‘grievous and irremediable’ medical condition (a serious illness, disease or disability) can apply for medical assistance in dying. Their condition doesn’t need to be terminal. For now, the option is only available to those with a physical illness, but there are plans – postponed for now – to include mental illness as part of the criteria.
Proponents say the law affords people autonomy, the right to decide what level of suffering is intolerable. But Rose highlights that insufferable circumstances could – and, frankly, should – be alleviated via better healthcare and societal support. ‘My quality of life, much like most disabled people, is hugely dependant on the support and care I receive,’ she says. Rose was, up until recently, able to work.
But at the moment, she can’t – and she fears her life will become too unbearable to live. So, due to the wait for disability support being a minimum of six months, she’s applied for the assisted dying programme, despite not wanting to die. Let that sink in.
Drawing the line
Supporters of a law change here told me safeguards would be much more controlled than the Canadian system; that the Oregon law ours would be based on hasn’t changed since 1997. Further encouragement came in March, when a Parliamentary review found international evidence linking assisted dying with better end-of-life care – although former Paralympian Tanni Grey-Thompson, who now sits in the House of Lords, warned of potential ‘coercion’.
She echoes those who fear a law change would set us on a ‘slippery slope’ where the safeguards would keep changing; where economically marginalised people could then feel pressure to die, as that option is cheaper to the state than providing what they’d need to thrive.
It’s a point echoed by Phil Friend, disability rights activist and spokesperson for campaign group Not Dead Yet. ‘We’re talking about finding support, helping individuals get care, helping alleviate their pain,’ he says, of the things disabled people need to thrive. ‘Those things should be put in place before we even think about turning to assisted suicide.’
I hang up my call with Phil agreeing on that point. But I also worry that if we wait for our healthcare systems to improve before putting a law in place, we’re waiting for a utopia that’ll never come, while people continue to suffer. Reporting this piece has meant a lot of hard, sometimes mind-bending conversations with people whose views I broadly agree with – but many of whom stridently disagree with one another. With this literal life-and- death topic, both – all – things, I’ve learned, can be true.
When Mum was ill, I remember her saying, ‘Everyone thinks dying is the worst possible thing, but really it isn’t so bad.’ She had a lust for life and that carried all the way through to her final months. I believe that, because she was already facing the reality of it, she should have had the right to die when she wanted. If she’d had that choice, I don’t know if she’d have taken it.
It was her life, and her body. I think that’s the point that everyone – campaigners on either side of the argument – can agree on.
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