I am a member of a book club run by Marian Krawczyk of the University of Glasgow End of Life Studies Group. For our last session Marian’s colleague, Naomi Richards, chose the book Intervals by Marianne Brooker.
Dr Richards, like me, takes an interest in the issue of legalized assisted dying, and this book charts the last weeks in the life of the author’s mother after her decision to end her life by voluntarily stopping eating and drinking (VSED). Her mum was diagnosed with primary progressive multiple sclerosis and suffered great pain and loss of mobility and physical independence. Had she lived in a country such as Canada or Spain, there is little doubt that she would have requested assisted dying. Indeed, as a political activist throughout her life, she was an advocate for the legalization of assisted dying in the countries of the UK.
Currently, such options do not exist. Scotland’s parliament has just rejected a Bill, and a Westminster initiative is now stalling in the House of Lords. Yet there are grey areas open to the British. The “Dignitas option” exists because Switzerland does not insist on Swiss nationality or residency. But you have to be able to travel and you have to have a lot of cash. One of the themes of Brooker’s book is how being in the economic margins (her mum eked out a living reading tarot cards online) renders everything about end of life so much harder.
Then there is VSED. You can legally choose to end your life by stopping eating and drinking. The people around you, family, carers, nurses, doctors, all have to respect such a decision taken by someone freely and of sound mind. They can help you make those last days, and in this case weeks, as comfortable and pain-free as possible. This, then, is not quite “legalized assisted dying” – though in my view, it comes very close. Perhaps we could call it “supported dying”.
Whichever way we describe it, this is no easy option, and Brooker unflinchingly describes the final days of her mum’s life as she starves and dehydrates herself to death. It is a difficult and challenging read.
Of course I took an interest in this insight into a little known route to ending one’s life legally and with a certain medical support. It is often cited by advocates of legalized assisted dying as a loophole that strengthens their case. “If someone can legally opt for VSED and receive support throughout a protracted period of suffering”, they argue, “isn’t it more humane to prescribe them something to end their life more quickly, and with greater control and dignity?”
But I found that the thing that really struck me about the book was the description of Brooker’s relationship with her mother during this intense and emotionally charged final phase. I recognized many parallels with my own situation. My mum has osteoporosis, a condition that leads to almost spontaneous “crumbling” of her bones. These cause great pain and can only be treated with time and painkillers. Following a fall in 2021, I moved in to support mum and I have been a carer ever since. Gradually my commitment has increased to the point where it is hard to leave the house for any great length of time without having to put in place some cover. And this despite having a package of care. Five times a day, two carers come in to help mum with personal care (she is unable to walk at all now) – these carers are extraordinarily professional and at the same time always good humoured and friendly. I am in awe of them and Mum looks forward to the visits of her “ladies” that punctuate her day.
The carers don’t administer drugs though. They don’t do the laundry and they don’t cook meals. And mum struggles now with anxiety and worries even when I go to the shops. So I have adapted my life to become her full-time carer. Not something I foresaw on my life plan when I was younger…
I know that mum finds life tedious now. She is confined to bed or her chair. She takes solace in the TV but seems to have given up on reading, something she once loved. She has a radio but seldom listens to it. We rarely go out now. Visitors come to the house but most of her friends are either dead or too infirm themselves to visit. It’s not a great life. However, although she is often in pain, it is less acute than the suffering of Brooker’s mum with her MS. And although mum is 91, I’m not yet sure I could say she is at “end of life”. There is a sense of limbo, a sort of indefinite finitude.
Brooker’s book is a highly personal memoir but it is also a scholarly work that deals with issues of class and gender and care. I found many of her references thought provoking. (In fact I ordered and read Simone de Beavoir’s essay, A Very Easy Death, which also deals with the care of a mother by her child at end of life – it was not, by the way, an “easy death” at all.)
One quote in particular by Professor Maria Puig de la Bellacasa of Warwick University resonated with me: “care time suspends the future and distends the present”. I have thought about this a lot, especially given that I find it is increasingly hard to plan for the future. Just taking a few days away in Glasgow becomes a complicated matter involving respite care and near-military preparation. Spontaneity becomes impossible. But I was intrigued by the reference to a “distended present”. This described something I have observed in myself – how the tasks of caring, often small in themselves, have grown to fill my days. This is not wholly negative. I find that I often lose myself in the acts of care and recognize that for my life at the moment: this is what I do.
What is more negative though is a feeling of guilt and Brooker herself defines one aspect of this in a way that hit home for me: “Grief-guilt is a creeping feeling mouldering away at the edges of reason: I did my best…. but did I really? What about that time, or this thing?”.
Thanks again to Marian and Naomi for suggesting this book. I wish I’d finished the book before the discussion – but I’m very glad I went on afterwards to read it.