If assisted dying is legalised, who gets to decide whose life is worth living?

Since the British parliament rejected a bill that would have legalised assisted dying back in 2015, campaigners have continued to push for a change in the law. Now, the Royal College of Physicians is polling its members on whether the UK should permit assisted dying. A similar poll of doctors by the college in 2014 found that a majority did not support a change to the law.

In recent years, other countries have extended the laws governing euthanasia to gradually encompass cases of mental illness and non life-limiting conditions. But these pose serious threats to people with disabilities – and should be carefully considered in debates about changing the law in the UK.

In 2017, Canada legalised medical assistance in dying, which allows consenting adults suffering from grievous conditions which are deemed irremediable, to end their own life. The Canadian law does not explicitly exclude mental illness as the sole underlying medical condition to access euthanasia. This has generated a controversial debate, with analysis suggesting that the criteria of “irremediable” is vague when applied to psychiatric conditions and can vary between doctors.

In the Netherlands, where, since 2001, the law has allowed doctors to perform euthanasia at a patient’s request in cases of unbearable suffering without any prospect of improvement, it emerged that euthanasia has been administrated to people with an intellectual disability and autism spectrum disorder. For these patients, the inability to cope with social circumstances, and the increasing dependency, solitude, depression and feeling of being a burden to others, were deemed enough to met the legal requirements of intolerable suffering, which make euthanasia permissible by law.

The ‘slippery slope’

The Canadian and Dutch cases are significant. Despite their strict guidelines, codes of practice regulating the assisted-dying protocols could gradually extend to all disabled and mentally ill patients who meet the criteria, even in the absence of a well-informed request. This could result in the termination of those lives that are considered undignified and purposeless by society. Such a scenario would effectively equate disability, mental disorders, even old age, to terminal illnesses, and deem them “intolerable” conditions to live in.

Today, media campaigns and celebrities are increasingly encouraging people to talk about mental health issues and not feel ashamed to ask for help, in an effort to reduce the negative stigma around it. Disability rights activists also feel required to openly explain why their life is worth living and they do not want to die.

Despite this, negative stereotypes and moral assumptions about people with disabilities or mental illnesses permeate public debates. In the UK, some ethicists have already called for the lives of people with dementia to be ended in the name of an unspecified concept of personal identity.

If we accept that a disabling condition that is lifelong but not life-limiting could be a criteria for euthanasia, the safeguards of assisted dying stand on unsteady ground.

As part of a research project on the ethical issues arising from the debate on disability and end of life, I argued that the right to end one’s life stands on the basis of philosophical concepts of agency, dignity, and autonomy. And that these concepts are in desperate need of reshaping if we look at the life of those living with a severe disability who depend on others for their care.

In a control-obsessed society, dependency is considered a fate worse than death. Some argue that to seek medical assistance in dying is preferable than a natural death because it restores a person’s power to make a decision, and it offers a way to avoid pain, shame and the feeling of having nothing to live for. But this is not really a “free” choice: disability charities report that disabled people fear feeling under pressure to end their lives when they are made to feel ashamed of their condition or to feel that they are a burden to society.

In debates about assisted dying, a person’s power to bring about their own death has come to symbolise the expression of free will, autonomy and self-determination, whereas disability, mental disorders, and most of all a lack of autonomy are seen as something intrinsically bad.

Relying on others

For disabled people who already live their lives in a state of dependency, choosing to die so that they don’t have to rely on others will rarely be a determining factor.

And going one step further, such debates should recognise that we all live in a state of dependency. Nobody could really claim to be completely autonomous in their life without the aid of technology, healthcare, and – perhaps less obviously – the emotional support of friends, family, and loved ones. Vulnerability and interdependency are an essential part of human nature and well-being, and necessary for human flourishing. We experience dependency as children, and we grow to became part of a world of social structures and relations which are shaped by collaborations, mutual care, and reciprocal assistance.

If society forgets this and refuses to accept disability, illness and decline as a constitutive part of human existence, it will inevitably come to accept that death is preferable to dependency, and consequently that the termination of disabled lives is easier than working toward improving their existence.