Few of us can have been unaware of – or untouched by – the story of Jeffrey Spector. His amiable face has recently smiled out from the front pages of countless newspapers where his last days were recounted. The journey to Switzerland with his wife and daughters, the ‘last supper’ with family and friends, and the film that was apparently made as he swallowed a lethal dose of poison in Dignitas – the so-called ‘suicide clinic’ – to prove that he had taken his own life without assistance from clinic staff.
It is an utterly tragic story that hits at the heart of all that it means to be human; to live; to love; to lose. Jeffrey made the decision to take his own life when he still could, facing the possibility of almost total paralysis from an inoperable spinal tumour. He didn’t want his family to have to look after him if that occurred, as, if it did, by that time he would have lost the chance to travel independently to Switzerland.
The assisted dying debate is a sad and complex one which leaves me at times very certain of my feelings, at others equally certain that if I were charged with passing judgement on what route the legal system, society and we humans who comprise it should take, I would not know.
I’ve written in this blog before about my mum – who died aged 62 in a wonderful hospice where her main nurse was equally happy to chat with her about an obscure article in The New York Review of Books which some kind friend had (surprisingly but accurately) judged to be perfect reading matter in the circumstances, to whether her beloved dog was being adequately walked in her absence. A place where the drinks trolley was not – as my mother said when she first heard it was on its way ‘about to offer me yet another cup of tepid grey tea’ – but a veritable treasure trove of wine, gin and the rest, its contents offered liberally to patients and visitors alike. And a place where she died in peace, not at home – a choice she was adamant about – not wanting myself and my brothers to have to care for her through whatever her last weeks might bring.
Her end of life decisions were clear to her, to us and the hospice: her main and oft-expressed wish was to be ‘kept asleep’ if the cancer that riddled her body affected her brain. Whether or not it did we will never know, but her last days were indeed passed mostly asleep, peaceful, her pain well-controlled. (And yes, her dog walked, in the brief moments that any of us could bear to leave her side).
She (and we) were very lucky: end of life decisions and actions for countless others are fraught with debate and despair. The latter we had in buckets – the former wasn’t really an issue – she and we knew she was dying, the hospice knew how to handle it.
When reading of people like Jeffrey – and indeed recent reports of the challenges of creating good end of life care, it is reassuring to know that the James Lind Alliance has completed an exercise to identify the research that matters most to people facing end of life decisions (see the website here and a short film of the story here) – be they those who are ill, their families or their professional caregivers. Let’s hope it paves the way to rigorous research that can help to create a more robustly evidence-based approach to helping people in their most desperate times, while never forgetting the need to be adaptable to individual need.
I cannot take the credit that is due to Daily Telegraph columnist Graeme Archer for writing a truly brilliant article about just how vexed the Spector issue was/is (see here). And I want to share with you with the quote (from Albert Camus) that he so brilliantly used to sum up his view, that (in a nutshell) these are decisions for us all : “Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”
I will watch the progress of the JLA-identified research and the wider debate with concern and interest. And devoutly hope that whatever stage we may be at, we all have a friend beside us.