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July 5, 2018 (Society for the Protection of Unborn Children)In May, Guardian columnist Polly Toynbee wrote an article revealing that the celebrated writer and journalist Katharine Whitehorn has Alzheimer's disease.

“She wouldn't want to live like this”

Toynbee begins by praising Katharine Whitehorn's career and legacy, and commiserating with her mental decline, but the article develops into an argument for assisted suicide. She points out that Ms Whitehorn wrote in favour of the “right to die” and reports that “her sons say without doubt that if the real Katharine could see herself now she would be horrified, never having wanted to end up as she is.” But she goes further, asking, “Who wants to leave family and friends with a final memory of themselves as a vegetable, a distortion, an alien being?”

She asserts, “surely the real Katharine Whitehorn, the one in her right mind, is custodian of herself, arbiter of what or who is her real self and when to discard an empty husk?” Polly Toynbee also recently argued that assisted suicide laws were necessary to prevent another Gosport, despite the report making very clear that the people killed there were not at the end of their lives. 

Who decides?

However, it seems that Katharine Whitehorn's son, Bernard Lyall, thinks rather differently about his mother's condition. He agrees that “Kath had argued for the right to die, has a living will, and would have been horrified to see herself like this.” However, he says, “now the power to let her go has fallen to me, it's not so simple.”

He asks a very pertinent question: “But even if we were allowed to proactively end someone's life on their earlier instruction, should their younger self be allowed to make such decisions about the person they are now? Polly thinks so, and the young Kath might well have agreed. But the young Kath isn't here, and the old one is, usually, pretty content.”

“Humiliating” for whom?

Mr Lyall also takes issue with some of the derogatory comments Toynbee makes about those with mental decline. He continues: “So I can't help wondering about this vicarious sense of shame, at what Polly, in another piece on the right to die, has termed 'humiliating mental collapse'. Who, exactly, is humiliated here? Who is ashamed? Not Kath, I can tell you, not any more. Should we be humiliated on her behalf?”

For him, what is important is helping his mother live with Alzheimer's, and the importance of talking about it honestly while that is still possible. 

A position of ignorance 

Niall McCrae is an experienced mental health nurse and lecturer at the Florence Nightingale School of Nursing & Midwifery at King's College London, and has written extensively on dementia and euthanasia. He writes: “When someone says 'if I ever get dementia, please put me out of my misery', it is understandable, but arises from a position of ignorance.” He quotes the results of surveys that “show that many people see dementia as a fate worse than death, even in its early stages. People tend to anticipate a miserable and humiliating existence defined by the disease; they do not foresee capacity for resilience and adaptation.”

“The worst indignity is to deny personhood.”

However, researchers have been “surprised by how highly people with advanced dementia rate their quality of life (González-Salvador et al. 2000)…Quality of life is consistently perceived better by people with dementia than from the viewpoint of informal or paid carers. Although a broader range of variables is considered by carers (Hoe et al. 2006), the expectations of people with dementia may be more realistic.”

McCrae goes on to talk about the “malignant social psychology [that] is imposed on people with dementia by others; this includes diagnostic overshadowing, whereby all behaviour is attributed to pathology.” In her talk about vegetables and aliens, this is surely what Polly Toynbee is doing to Katharine Whitehorn. As McCrae says, “The worst indignity is to deny personhood.”

Published with permission from the Society for the Protection of Unborn Children.