The shocking case of dementia patient who was euthanised despite changing her mind

Holyrood is consulting on legislation for assisted suicide in Scotland. The debate will intensify later this year when the Health Committee completes its public call for views and begins hearing oral evidence. The need for hard questions about how it could ever possibly be implemented cannot be emphasised enough.

My experience in caring for older, frail people and people with dementia makes me think that this is the wrong path for Scotland. The dangers are clear when you consider the practical and ethical problems of applying a law that permits you to end someone’s life, especially if the people involved have dementia, or are afraid of the condition.

I haven’t seen any discussion about this by the Bill’s supporters. There needs to be a calm assessment of what could go wrong for people with dementia and frail older people. Laws must be drafted in a way that makes them work in practice but the thinking around issues like dementia is full of muddles. Consider the question of eligibility.

The definition of terminal illness included in the Bill is an “advanced”, “progressive” condition that a patient is “unable to recover” from, which is expected to cause their “premature death”. Dementia would clearly fall under this definition. Yet, the legislation also states that people with a mental disorder will not be eligible. Which is it?

Family had to hold her down

I don’t know how this problem could be solved given the difficulties involved with screening for dementia. People often receive an official diagnosis very late. A rule against giving people with dementia access to assisted suicide would be impossible to uphold. And there’s no guarantee that such a rule wouldn’t be overturned after being challenged on discrimination grounds. We’ve seen laws expand in other countries, with devastating consequences.

In one Dutch case, a woman made an advanced directive to say that she wanted euthanasia if she got dementia. Her family had to hold her down when the time came because in her “confused” state she changed her mind and wanted to live. The doctor involved was later cleared of any wrongdoing over the woman’s death by a court.

Would Scotland extend ‘choice’ and the ‘right to die’ to such vulnerable people, or say no? For how long? Surely, we can support terminally ill people without making laws that will inevitably harm vulnerable people.

Practical problems

I’d issue a challenge to MSPs: what makes you think that you can draft something for Scotland that will avoid the ethical disasters that have unfolded in countries that have already got this? Any wrong policy decision can rip through society. During Covid, the government policy to move patients from hospitals to care homes was a mistake that caused death and distress to thousands of frail older people many of whom had dementia.

Governments tried to follow the science, but in the end they didn’t and in many cases it was illegal. Lawmakers are very bad at responding to clinical and ethical practical problems. They want to legislate them out of existence, and sadly that doesn’t work.

We are not in a pandemic now. We have time to think about all the possible adverse consequences of ‘assisted dying’. I don’t see how politicians can achieve the aim of giving a ‘right to die’ to some people, without destroying the dignity and right to life of others who might be less able to speak up for themselves. Most people don’t understand dementia and capacity.

A ‘duty to die’?

We must also consider the issue of inequality. I know that older people, given the choice, may choose an assisted death to get out of the unplanned mess that is the current health and social care crisis. I fear for people who would opt to die because they feel that dementia is a death sentence – when with proper care, people can live well and with dignity for years before they reach the dependent stage that seems to be most fearful for some.

And what about those who’d feel a ‘duty to die’? Some years ago, I interviewed a widow in England who lived alone with her son who had never been able to keep a job. He had his mother’s house to live in, and his benefits.

If she was going to a care home, she’d have to sell the house from under him to pay for it. She wanted to die quickly and leave her house to him, to keep him safe after she’d gone. It was an earth-shattering conversation for me as I realised, indeed, she needed to die to keep him safe. 

Shame and contempt

Dilemmas of this kind would arise in homes across Scotland if assisted suicide was introduced. It would be foolish to ignore this issue – as uncomfortable as it is. Many families are facing the surprise that an anticipated inheritance is not coming their way but going to pay for care. How could this not have a bearing on people’s approach to ‘assisted death’? A ‘right to die’ for some could end up as a ‘duty to die’ for others.

I fear for the families and carers of older people under pressure to take a new, relatively inexpensive, way of being relieved of the burden of elder care. I worry about living in a society where some people who want to die by suicide are stopped by nurses and others from getting help because “we see why it’s sensible for them to just die”. We’re meant to be a proud nation. I predict that this hubris will lead us into shame and contempt from future generations.

I’m glad to make sure my name joins those who are speaking out against it, not as a matter of religion or faith, but just because it is not safe or practical to try to implement state-sanctioned killing of people, even with their consent.

Professor June Andrews OBE is an expert in the care of older frail people and people with dementia who has worked in the NHS, government, and in academia