Assisted Dying Could Make Some Lives Not Worth Living

As late as 1902, a practice called ‘snatching the pillow’ was used by community nurses in Norfolk as a final cure for all ills. If a sick and bedridden villager could no longer bear their pain, or the family had become exhausted by caring for them, the pillow would be sent for. It was covered in black lace and sewn by a nun, and as it was carried through the village people would go inside and shut their curtains. After crushing opium into a drink to comatose the patient, the pillow was placed behind their head and after a time snatched away to cause the head to fall back with a jerk, breaking their neck. The son of the final holder of the pillow, in the village of Feltwell in Norfolk, burned it on a bonfire in 1910 to the relief of villagers. While assisting someone to end their life has been carried out in one way or another for as long as we have been ageing to infirmity, it has always happened in the shadows: reluctantly, sparingly, and shrouded in taboo.

The UK parliament will decide whether it is time to lift this long held legal and social prohibition when the terminally ill adults (end of life) bill, a private members bill brought by Labour MP Kim Leadbeater, has its second reading and goes to a vote on Friday. While euphemistically worded, the bill proposes to legalise ‘assisted dying’ by amending the Suicide Act of 1961. 

While it is currently illegal in the UK to hasten someone’s death by actively assisting them to die, it is legal for a doctor to help someone die by withdrawing life-sustaining treatment. Often in conjunction with this, doctors are permitted to ease someone’s pain even if it also means hastening that person’s death. In the small number of cases where strong pain relief does not work, doctors can induce sleep until that person dies naturally. Patients can also ask for such treatment (but a doctor is not obliged to agree). Palliative sedation has been common since the hospice movement began in the 1960s and operates in a relatively unarticulated and hidden way. 

My mother was lucky enough to get a space in a hospice in the final weeks of her life as she died from a painful cancer. She was given a private carpeted room with soft lighting and a bed for family members to stay the night in. Increasing amounts of painkillers were administered to her over the few weeks she was resident there to keep her comfortable and she was eventually sedated until she died naturally a few days later. The palliative care received in the hospice was deeply attentive to her and the family’s needs, both physical and emotional, and her last weeks were peaceful, dignified and deeply meaningful for us all. 

But this kind of death is not available to everyone. Access to hospices (or even decent palliative care) for the terminally ill is sporadic. Two thirds of all funding for hospices comes from charitable donations, and Hospices UK claims that the sector is currently facing a financial crisis as it cares for 300,000 people per year. The need for hospices is poised to rise significantly in the coming couple of decades. 

Those who cannot access palliative care and want a way out at the time of their choosing have very few options, however – at least if their family cannot finance a trip to the Dignitas clinic in Switzerland, where euthanising foreigners is legal. Even families who can afford Dignitas face an uncertain future on their return, as there is a chance they may be investigated for assisting a suicide. It is in this context that campaigners for assisted dying have argued that a new legal framework is required, which foregrounds an individual’s autonomy to decide the manner and timing of their death. This proposed new law seeks to bring assisted dying into the light: to make it transparent, public, regulated, open to scrutiny and universally available on the NHS. The bill appears to be progressive and driven by compassion. We don’t allow our pets to suffer longer than is necessary, we consider it cruel, so why do we prolong human life beyond all bearable limits? Why should people suffering intolerable pain not be given the right to choose? At first sight, it’s a powerful case.

The proposed bill is also very limited in scope. It clearly states that the law would only grant access to assisted dying to patients with less than six months to live; two doctors must sign off the request, convinced that the wishes of the patient are “clear, informed and settled”, followed by a final stamp of approval from a high court judge; although someone else can apply for a patient if they are unable to do it themselves for some reason, strong penalties for coercing someone into seeking medical assisted dying are included in the bill. Elsewhere in the bill, it states that medical practitioners can suggest assisted dying to those who they think may benefit from the programme. So far, so rational.

Yet there are clear problems with the bill. A doctor cannot know if someone has six months to live, as predicting end of life is notoriously hard. If one doctor refuses your request, you can ask another, providing little barrier to access as patients can shop around for a willing doctor. Above all, doctors are not trained to spot or prevent coercion, so they would not reliably know if a patient had been persuaded into requesting a medical suicide. In any case, coercion might just as easily operate as a self-imposed sense of ‘being a burden’, which is impossible to identify. Even in its current limited form, the assisted dying bill seems to ignore the enormously fraught dynamics of power and vulnerability that terminally ill patients must navigate – dynamics which may undermine any simple notion of ‘free choice’. 

Beyond the problems with coercion, giving suicide a medical accreditation sends a strange signal to society. It seems to scramble how we value life and death. In Canada, where medical suicide has been established as a relatively common practice, 28% of its citizens in a 2023 poll believe that homelessness should be considered a legitimate reason to request euthanasia. 27% think poverty sufficient, 50% a disability, and 51% would grant access to assisted dying due to “an inability to receive medical treatment”. 

These aren’t just idle thoughts. The Netherlands has extended its own coverage of assisted suicide to encompass people with mental health problems. A mentally ill 29-year-old woman suffering from chronic depression, anxiety, trauma and an unspecified personality disorder was recently permitted to end her life with assistance from the state. She was not alone. In 2023, 138 cases of euthanasia in the Netherlands were granted due to intolerable  psychiatric suffering alone. Access to assisted dying programmes are now being extended to remarkable degrees: in Belgium access to assisted dying is being granted to children under 12 with terminal illnesses; in the Netherlands, it has been extended to anyone at all over the age of 75, whether they have health problems or not. 

These bills seem to change the way social and medical authorities value life, too. Examples from countries that have recently regulated this practice as a public resource should make even the strongest proponents pause. An ex-Paralympian in Canada asked her community worker for an accessibility ramp to be installed in her home but was instead offered access to the assisted dying programme. A 42-year-old man, also in Canada, who suffers from cerebellar ataxia, secretly recorded his healthcare providers telling him there was no money for his home care anymore and instead offered him access to assisted dying. After spending four days on an emergency bed in a hospital, a quadriplegic man in Quebec developed a bedsore so painful that he sought (and was granted) medically assisted dying. These are not simply cases of bad judgement. The UK bill proposes that medical practitioners suggest it to people towards the end of their life if they think it appropriate. Once suggested by a trusted authority, will  the terminally ill be more likely to think of themselves as a burden to their family and society? …‘If everyone else is doing it, am I being selfish by hanging on in this way?’ 

A recent report by Marie Curie states that over ten thousand terminally ill people die in poverty each year in Scotland alone, and 100,000 across the UK who could have benefited from palliative care die without access to it. While the bill states that to qualify, a patient  must not have been pressured by “any other people”, into choosing assisted suicide, there is no consideration of whether people could be pressured by circumstance. In Oregon, in 2021, 8% of people accessing assisted suicide in the state cited financial issues as a reason for their choice, 54% felt a burden. Canada, 36% of patients who had an assisted death said that a “perceived burden on family, friends of caregivers” was one reason they chose to die, while 17% cited isolation and loneliness. 86% of patients in one Canadian study claimed it was the loss of the ability to engage in meaningful activities that led them to seek an assisted early death. Poverty, not pain, seems to be driving some people to seek out medically assisted dying. 

Supporters of the UK bill insist there would be strict safeguards in place to prevent such problematic cases from arising. No one would be eligible for assisted dying if they weren’t both terminally ill and within six months of the end of their life. But how is it fair to deny someone in unbearable pain access to assisted dying just because they have longer than six months to live, or because they lack a terminal diagnosis? This principle of ‘equal access’ has been the basis of the extension of provision to cover varying degrees of illness, age and disability in the Netherlands, Belgium, Canada and Australia. Almost every country that has brought in an assisted dying law has widened provision beyond the initial limits in this way. Rather than the ‘slippery slope’ being something that may happen, the nature of the programme seems to mean it would be inherently unfair for it not to happen. Once the prohibition on euthanasia has been breached, more groups of people come forward wanting to end it all, and the grounds on which they can be persuaded otherwise, become less stable. 

Disabled people have a particular stake in how this version of ‘autonomy’ plays out in real life. Negotiating with your doctor to not have a do not resuscitate (DNR) notice added to your file each time you are admitted to hospital will force you to pay attention to any additional indications that your life as a disabled person is framed differently than others. This played out in the Covid-19 pandemic, during which the British Institute of Human Rights challenged the British government for placing DNR notices on mentally ill people and people with learning disabilities. This was bad decision-making in a time of intense resource crisis, as staff looked for any emergency measures that would keep the healthcare system going. That they instinctively (or accidentally) chose to devalue those types of lives is telling, however. Given an ageing population and ongoing resource crises afflicting the NHS and social care, these systems seem primed to make further bad decisions. 

Those who cannot access palliative or hospice care or have not been able to access proper medical care for their condition, may understandably want a peaceful way out at the time of their choosing. But is the role of society to cede to their wishes, or is it to change the ground on which they wish for the end? Whereas access to the attentive palliative care found in hospices is often funded by selling second-hand clothes and sponsored fun runs, the assisted suicide programme will be a universally accessible right on the NHS. It begs the question: if we wish to end suffering, where is the legislation to fund universal access to palliative care and hospices? 

Not everything is made safer by being brought into the light. Assisted dying laws seem to radically reshape society’s values about which lives are worth living, and which deaths worth pursuing. This works in lockstep with the normalisation of austerity. Raising the dignity and value of sick and disabled people’s lives means raising the volume of resources we direct to their care. And when people are terminally ill, it is hospices that should be normalised, not suicide. Regulating how we end our lives may very well be more harmful than leaving such practices in the shadows.