Why I changed my mind over assisted dying
I’ve changed my mind. For the past few years I have had a pact with my husband that we will try to help each other die peacefully if either of us suffers from a debilitating, painful, terminal illness and we believe our quality of life has become unbearable. There is a reason for this. Both of us watched our fathers struggle with incurable conditions.
My father had dementia for 20 years and, while losing none of his charm, slowly lost all ability to communicate or comprehend life. My mother was his main carer and I think he would have worried, had he known, that he was exhausting her.
When he finally entered a care home, more than the indignity of being infantilised, I suspect he would have been infuriated at the expense he was incurring. My father-in-law had Parkinson’s for 20 years. He remained astonishingly active and never complained but, by the end, it also became increasingly hard for him to engage.
• Don’t assume we will get assisted dying right
Our children used to roll their eyes at our right-to-die conversations, insisting that they wanted both their parents and pets to be kept alive as long as possible. But whenever my husband and I read about people being charged with attempted murder for helping a loved one to end their excruciating pain, we agreed the system was barbaric. Only this week the former mayor of Winchester was in court for putting a pillow over his nonagenarian mother’s head to end her suffering. Neither of us wanted to die in a Swiss clinic far from home.
When I interviewed the neurosurgeon author of Do No Harm, Henry Marsh, who has terminal cancer, he told me: “I want to be in control at the end and to plan it.” His solution was to carry a suicide kit, but it would be hard for a non-medic like me to inject myself or my husband. The laws surrounding assisted dying, I believed, needed to be liberalised.
But then I started reading research from other countries that had introduced right-to-die laws: Canada, the Netherlands, Belgium, various American states. It made me feel increasingly uncomfortable. The consequences of allowing people to take ownership of their deaths appeared hard to contain.
Jolanda Fun from the Netherlands revealed plans to die on her 34th birthday last week because of severe recurrent depression. “Most of the time I just feel really shitty,” she said. When a counsellor told her two years ago that Dutch law permitted euthanasia for psychiatric reasons, it became her goal “to step out of life”.
The number of cases of assisted death in the Netherlands has risen fourfold since the law was introduced in 2005, with the highest rise among those who feel their mental health issues are unbearable and unresolvable, including those who are autistic and lonely. They are now debating extending the legislation to include children.
In Canada, the number of people choosing to have a medically assisted death has gone from 1,000 when the law was introduced in 2016 to 13,000 last year. The law initially included those with a terminal illness but eligibility was quickly expanded to include anyone with a serious or chronic physical condition — and now looks likely to include mental health issues.
In Belgium, a health insurance chief last month called for elderly people who are “tired of life” or feel they are a drain on the public purse to be included in their euthanasia laws. In Oregon, almost half of those choosing assisted death cited concern about being a burden as a motivating factor.
I started wondering, what would have happened to my anorexic cousin, my schizophrenic aunt or my father in these places? Our NHS is appallingly overloaded and both my elderly parents spent days in an overstretched hospital. Were they bed-blocking?
A majority in Britain now want assisted dying. An Ipsos Mori poll last year found 65 per cent in favour. Many of those I respect most, from Dame Esther Rantzen, who has terminal cancer, to Jonathan Dimbleby, whose brother died with motor neurone disease, to my fellow columnist Matthew Parris, want a new legal right-to-die.
A recent House of Lords bill set out how a law might work. It proposed that terminally ill adults certified as being mentally competent by two doctors could apply to a High Court family judge to end their lives. However, a debate in parliament this week showed the difficulties of defining such terms.
I don’t think Britain is full of granny killers nor do I want the terminally ill to have to starve themselves to death, but I don’t trust our politicians to get this legislation right — or future parliaments to hold the line. What would start as a choice could become an expectation.
Sir Keir Starmer has made changing the law a priority for a Labour government, promising a free vote. But this moral conundrum is already turning into another part of the culture war with activists on both sides becoming increasingly shrill and uncompromising. I worry that we will lose sight of the need to be compassionate and humane.
Increasingly, I would prefer us to prepare for better deaths. Only 3 per cent want to die in hospital, yet more than 50 per cent do, with only 17 per cent ending their days at home where they can be surrounded by family and friends. Hospices are another alternative. In Spain, two thirds of adults die in their own beds, often aided by pain relief. This is achievable with better social care.
My husband disagrees. The sooner assisted dying becomes law the better, he says. He wouldn’t want to be kept alive with multiple complex conditions and sees little joy in eking out his final days to postpone death rather than extend any meaningful life. Both of us want to promote individual choice, but I don’t want to hasten anyone else’s death.