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Nothing makes me happier than a big, complex topic to research. Yet writing this one did not come easy - it’s been in flux on my laptop since the summer. The recent MP vote on the Terminally Ill Adults (End of Life) Bill brought before parliament by Labour MP, Kim Leadbeater, means I cannot delay any longer.
Death and disability are topics Brits are notoriously bad at discussing, so it is unsurprising this national conversation is long overdue. Assisted dying under provision of the state is one of the most complex ethical dilemmas a society can grapple with, so we can be forgiven for having mixed feelings, and for not having all the answers.
Why people advocate for medically assisted dying
Even with modern medicine extending life, we are all going to die eventually. Even in the most perfect palliative care scenarios, there are people dying slowly, and in agonising pain that cannot be controlled. So, given the inevitability of death, a good death, enveloped in the love of your favourite people, with pain well managed, and with dignity, is how most of us would probably choose to die.
The main reasons people cite for wanting assistance in dying is they want bodily autonomy, and to regain a level of control, having been stripped of it through illness, and they do not want to experience physical suffering any longer than is necessary. Euthanising pets to alleviate suffering is a very normal occurrence, and people often say we treat our pets better than humans for this reason.
ONS data published in 2022 shows that people with health conditions with poor prognoses and lower survival rates were roughly two to two and a half times more likely to die by suicide. Those people are ending their lives alone and in ways that may be painful, or unsuccessful - leaving them with worse health than before. In addition, suicide can be traumatising for loved ones, who may be required to identify the body, or may be tormented by the nature of their death.
What the bill would change
The bill would allow people over the age of 18 in England and Wales ‘who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own life’. Approval for assistance in dying will require the assessment and authorisation of two independent doctors and a high court judge.
Leadbeater’s bill would allow for physician-assisted suicide, a self-administered lethal dose of medication, as opposed to voluntary euthanasia, where a physician administers the lethal dose of medication for the patient.
It would only be available for a person who has the capacity to make an informed choice, who has ‘an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment’, and the person’s death can reasonably be expected within 6 months. The bill clarifies mental illness and disability are not included within this definition of progressive illness, disease or medical condition.
One British person travels to Dignitas, Zurich to die every 8 days. But the £6,500-£15,000 fees mean people of a lower socio-economic status are shut out of this option. The bill would mean more people choosing assistance in dying can die with their family by their side.
Public opinion
Public opinion falls strongly in favour of assisted dying, with three-quarters of people polled supporting its application for terminally ill people near the end of their lives. This is the pattern across every constituency, and across every political affiliation, with support increasing with the age of respondents.
Following the November MP vote, I saw disability rights campaigners proclaim this was a ‘bad day for Disabled people’ and I felt this myself at times. But we need to remember Disabled people are not a monolith and be careful not to do a disservice to our ongoing struggle to be viewed as individuals. In fact, polling shows a majority of Disabled people are in favour of assisted dying. Being Disabled and being in favour of medically assisted dying are not mutually exclusive.
The slippery slope argument
Some jurisdictions that have legalised assisted dying, did so with narrower eligibility criteria or narrower interpretation of them, that later expanded, through legal cases, to include other groups of people, Typically beginning as an option only for those with a terminal illness and limited time to live, later expanded to include those in a state of ‘suffering’ for non-terminal scenarios, including those with psychiatric disorders, dementia, and even children in some cases.
Critics of assisted dying describe this potential for eligibility criteria to widen as a ‘slippery slope’ and worry this bill will open the floodgates to assisted dying being used to reduce state spending on the things Disabled people need to live.
This slippery slope line of debate has been described as a strawman argument by proponents of Leadbeater’s bill, as it is asking MPs to vote on a very specific set of eligibility conditions, not hypothetical changes to legislation that might happen in the future.
Many jurisdictions, including the US state of Oregon, whose Death with Dignity Act is the model closest to Leadbeater’s bill, has not changed its eligibility criteria in its 27-year history. Oregon allows ‘terminally ill individuals to end their lives through the voluntary self-administration of lethal medications' , with 560 people receiving prescriptions for lethal doses last year (not all choosing to take the medication at that time, though).
For those in the UK concerned about future criteria widening, the wording of Leadbeater’s bill is important to note - there is no mention of ‘suffering’ within the entire bill. Use of the word ‘suffering’ in legislation has enabled the eligibility criteria to broaden in the Netherlands, Belgium, Canada, Spain and Austria.
Italy has a more complex relationship with this debate than its other European counterparts, as it houses heads of the Roman Catholic church. Italy has no specific law legalising assisted dying, but in 2019, the country decriminalised aiding someone who is in ‘intolerable suffering’ to end their life. In June 2022, Italy’s first assisted suicide case set a somewhat unexpected precedent - Federico Carboni, a 43-year-old, quadriplegic man, who had been paralysed in a road traffic accident 12 years prior, won his lengthy court battle to receive assistance in dying. He was Disabled, but not terminally ill.
Canada introduced Medical Assistance in Dying (MAiD) for terminally ill adults with a reasonably foreseeable death in June 2016. Then in 2021, a group of Canadians with disabilities and chronic health conditions filed a lawsuit stating that it was unconstitutional that they were exempt from access to MAiD because their deaths were not ‘reasonably foreseeable’. They won their case, and now Canadians deemed to have ‘serious and incurable conditions whose natural death is not reasonably foreseeable’ are able to request MAiD.
In Canada, there are plans to broaden MAiD to include psychiatric disorders within the 2022 expansion of MAiD eligibility, but they have been halted until 2027 due to wide ranging concerns.
In 2023 one hundred and thirty eight people citing solely psychiatric disorders, were approved for assisted dying in the Netherlands, which introduced both euthanasia and physician-assisted suicide to law in 2002. This is a vast increase on previous years, but only represents about 10% of the applications from psychiatric patients. Twenty-two of those people who died with physician assistance last year were under the age of thirty.
Worrying cases
In a controversial case in the Netherlands, Millou Verhoof (17), was approved for euthanasia entirely on the grounds of psychiatric distress, due to complex mental illness she’d been living with for five years, following several major traumatic events. Doctors deemed she met the criteria for incurability, and she died in 2023 by euthanasia.
It is Canada’s implementation of MAiD that represents the worst-case scenario many already marginalised people who oppose assisted dying fear; that it may become (even more) normalised for those who are Disabled and poor to feel like dying is a better option than living.
One example that illustrates this concern is Amir Farsoud (55), a man relying on welfare benefits due to both mental and physical health issues. He found himself soon to be homeless in 2022, and having been homeless before, knew he couldn’t face another harsh Canadian winter on the streets. So, he decided to ask his GP to refer him for MAiD, explicitly stating that despite his health conditions, it was his socio-economic status that was prompting his decision. His GP referred him, he was then approved on the 90-day track and was simply waiting to die. A journalist shared his story and strangers chipped into a fundraiser to get him housed. Every year, Amir celebrates his ‘Deathiversary’.
Another concerning story from Canada is that of Rosina Kamis, a 41-year old Malaysian woman with multiple chronic health conditions including fibromyalgia and mental health disorders. After her fibromyalgia became too disabling for her to work, Rosina became homeless. She struggled to access adequate pain management or have her care needs met but was able to organise MAiD within a matter of weeks. Her roommate reported that the doctor who had euthanised her, did so on her bed, and her body was left there for hours before being collected by the coroner.
After her death, Rosina’s friend found a letter from her on her computer, saying she had lied to the physicians who had assessed her about her reasons for choosing MAiD. She attributed her suffering to systemic barriers, like an inaccessible home, lack of access to healthcare and living in poverty, as well as loneliness.
Another shocking case was that of Christine Gauthier (54), a Paralympian army veteran. After a five-year battle for a stairlift to be installed in her home, she was told by a state official, ‘if you’re so desperate, madam, we can offer you MAiD, medical assistance in dying’.
The story of Donna Duncan (61) raises a lot of questions about capacity to consent and assessment rigor. Donna had a car accident, which caused a concussion, leading to a decline in her health and a restrictive eating disorder. Donna also experienced paranoia, believing snipers would shoot her if she left the house. Donna asked her GP of twenty years to refer her for MAiD, but they declined her request and said her mental health should be better managed first.
Donna was able to be assessed and approved for MAiD through another healthcare provider, with the second assessment conducted over the phone. Donna’s daughters feel the long wait time for pain intervention (18 months by the time Donna died) had contributed to her choice and feel she was too mentally unwell to have consented. Police investigated and no arrests were made.
There are many concerning similar cases in the countries with a more liberal approach to assisted dying. They are and were people of meaning.
The social determinants of health
Non-medical factors, such as income, housing and social inclusion influence a person’s health. These factors are the social determinants of health (SDH) and have been shown to be even more important than lifestyle choices in influencing our health.
There are some types of pain, of course, that cannot be reduced at all by improving housing or access to healthcare, but pain science tells us pain can be increased or decreased for many patients through changes to a person’s reality, from a support network to access to social or healthcare.
To allow expansion of MAiD to those facing ‘unbearable suffering’, when so much suffering is a result of policy choices, is to make a judgement on the value of certain lives. We cannot accept a reality where state assisted death is more accessible than living a basic standard of life.
With the UK’s social care in crisis, accessible housing hard to find, and healthcare a postcode lottery, it is understandable that there are Disabled people who fear the slippery slope at this specific moment in our nation’s history could be dangerous.
Can the state be trusted to deliver this?
This is a valid question! If you have ever tried to navigate state systems or engage with private entities employed by the state, as a Disabled person, you know how fraught with risk these interactions can be.
During the first lockdown in 2020, many Disabled and elderly people, including Autistic and Learning Disabled adults, awoke to discover Do Not Resuscitate (DNR) orders had been placed on them without consent.
This was because the National Institute for Health and Care Excellence (NICE) had issued guidance to healthcare practitioners on who to resuscitate, using the Clinical Frailty Score. By this metric (frailty), people who need help with tasks like shopping, are marked as frailer. Many Disabled people need help with shopping, and this has no bearing on whether they are likely to respond well to treatment.
NICE withdrew the guidance within weeks, but it was already out there among medics making life or death decisions under immense pressure. Medics who are subject to the same social conditioning we all are, that subconsciously tells us some lives are less meaningful than others.
Nigel Marriot, 60, a man with Downs Syndrome, and with a full and rich life that he loved, was not ventilated during this period. His family believe medics placed ableist judgements on Nigel’s life, having been advised they wouldn’t normally ventilate ‘people like him’, also finding notes like ‘needs somebody to cook his meals, goes to daycare centres’, alongside the DNR in his medical records.
Another concern around implementation is whether assisted dying would be expedited to private companies like benefit assessment or ADHD diagnosis is. Could this lead to a lack of oversight, or a conveyer belt approach?
Will safeguards be adequate to identify coercion?
Of the 367 patients who were assisted in dying in Oregon last year, 43.3% cited ‘concern about being a burden on family and friends’ among their reasons for wanting to end their lives. Would that still be a factor in the decision if their needs were better met?
Every year, more than 100,000 people die in the UK with unmet palliative care needs. When so many Brits don't even have the option of palliative care, are they not going to feel coerced into assisted dying?
Leadbeater’s bill gives doctors the freedom to mention assisted dying to patients, based on their professional judgement. Could this action alone be considered coercive?
The broader social coercion to die that Disabled people experience is important to discuss. Our media narratives reinforce the idea Disabled people are burdensome, and as a result, many Disabled people experience hostility, discrimination and abuse.
Social coercion is the thread running through actor and disability rights campaigner, Lizz Carr’s recent documentary, ‘Better off Dead?’ (still available on iPlayer at the time of publishing). As Disabled people, we often have snap judgements made about our worth as humans and how miserable our lives must be.
In the documentary, Lizz and her fellow Disabled friends recount occasions on which strangers said they’d kill themselves were they in their position - existing while Disabled . How often do people say they’d rather die than face the ‘indignity’ of being cared for, in the way many Disabled people often are?
Equal Lives’ stance
As a user-led organisation (ULO), and a Disabled People’s Organisation (DPO), we are guided by the opinions of our Members. We conducted a member survey earlier in the year and found most of those who responded were in favour of assisted dying.
However, we did receive responses from people with concerns: that it may be implemented without adequate safeguards in place, and that Disabled people whose needs are being unmet by our existing healthcare, social care, palliative care, housing, and infrastructure may feel coerced into ending their lives prematurely.
The survey’s limitations should be acknowledged. Of our members across Norfolk and Suffolk, only 5% responded, which means the data is limited.
So, our stance is – it’s complicated and to commit to a strong stance either way would be at odds with our user-led approach as a disability rights organisation!
My own beliefs
I (just one person at Equal Lives), believe we can do it all – provide assisted dying to those terminally ill adults who want it, while simultaneously investing in palliative care, healthcare and social care, so people can have autonomy, dignity and comfort in both living and dying.
Those who claim assisted dying is unrelated to Disabled people who aren’t terminally ill, are likely underestimating the depth and breadth of ableism Disabled people, and marginalised people more broadly, encounter as we engage with both state-run and private entities.
I think there was a better way to bring the bill to parliament. It being a private member’s bill meant only 5 hours of debate were had before the MP vote. An impact assessment and Equality Review beforehand would have been more respectful of the scale of the issue being considered!
As previously mentioned, every year, more than 100,000 people die in the UK with unmet palliative care needs. How viable is it to deliver an entirely new, parallel service? How will this be funded? Will funding be taken from existing, already over-burdened systems like palliative care? The British Medical Association (BMA)’s Medical Ethics Committee offer a full breakdown of the points they think need further clarification in Leadbeater’s bill, and one point is around where the funding will come from.
As a Disabled person, the jurisdictions with a more liberal approach to assisted dying terrify me. It is well evidenced that most pain and suffering can be soothed with policy choices that meet people’s needs, and a healthier society.
Euthanising people with psychiatric disorders before they have even reached an age where their brain is fully developed, before their consequential thinking has better developed, is wild to me. What if a new treatment is available a year after their death?
I have known several people who took their own lives before they had much time on this earth. I often wonder if they’d have made the same choice had they waited a few more years. When people make the choice for an assisted death, sadly we cannot ask them if they would make the same choice again with the hindsight acquired through years lived.
The wording of Leadbeater’s bill is helpful in quelling some of my slippery slope anxiety. As much as I am a layperson, and not a legal expert - I think the bill is clear on its narrow eligibility criteria and hopefully, this would prevent broader interpretations over time. My biggest concerns with this bill are around implementation and the potential for coercion.
Even after writing this blog, I still don’t know how I feel about this bill.
There are many unanswered questions around the bill’s implementation. What would successful implementation look like?
How can we ensure people are not coerced? Can safeguards ever be enough in an intrinsically ableist society?
What is the point of suicide prevention in nations that offer medical assistance in dying for psychiatric disorders? Or is suicide prevention only for the people society deems valuable?
When someone dies by suicide, people who know them are more likely to also die by suicide. So, how does medical assistance in dying affect (non-assisted) suicide rates? Is there potential for a similar suicide contagion phenomenon with physician-assisted suicide?
What happens now?
At the time of publishing, the bill is at the committee stage. Over the coming weeks, we can expect to see serious scrutiny as the bill is debated and amended. The bill will then pass to two other stages in the House of Commons, and through various stages in the House of Lords.
I’d love to read your thoughts on this bill.
If you made it here, please do something good for your soul RIGHT now.
Written by Arianne Brown
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