Intervals by Marianne Brooker is on the longlist for the inaugural Women’s Prize for Non-Fiction, which my book club has applied to shadow. I’ve now read three of the nominees, the others being Matrescence and A Flat Place (review coming up tomorrow). Unsurprisingly, I’ve gravitated towards the ones based around a personal narrative – although all three are also political and incorporate research and cultural critique. Brooker’s is an extended essay about her mother’s protracted death with multiple sclerosis and the issues it brought up around disability, poverty, and inequality of access to medical care and services.

Specifically, Brooker decries the injustice of the wealthy having the option of travelling to Dignitas in Switzerland for an assisted death (current cost: £15,000), whereas her single mother, who lived in rented accommodation and had long been disabled and unable to work, apart from crafting and reading tarot, had so such relief in sight. Instead, she resorted to refusing life-sustaining nourishment. VSED, or voluntarily stopping eating and drinking, was a topic much on my mind anyway because of Wendy Mitchell’s death last month.

Mitchell was diagnosed with early-onset Alzheimer’s in her fifties and was an energetic campaigner for dementia education and research for the last decade of her life. With a co-author, she wrote three books that give a valuable insider’s view of life with dementia: Somebody I Used to Know, What I Wish People Knew About Dementia, and One Last Thing, in which she specifically discusses VSED. She was determined to live independently. For her, a dignified life was being able to meet her own daily physical needs. She did not want to be in a care home, or to exist past the point where she could no longer recognise her daughters. So when, in January, she fell and broke both wrists, giving her a taste of dependency and derailing her plans to travel to Dignitas, she knew that the time had come. VSED was her way out. You can read her farewell message here.

Is wilful starvation a good death? I don’t really know. It’s peaceful, at least; a person simply gets weaker and weaker, spending more and more time asleep until they fade out, at home. But it can take two weeks to die in this way. Should loved ones have to watch this process?

Denied a liveable life and a legal right to die, my mum made a choice within and between the lines of the law. A decade after her diagnosis, when she was forty-nine and I was twenty-six, she decided to stop eating and drinking to end her suffering and her life. Her MS symptoms were barely treatable and certainly incurable: severe pain, incontinence, fatigue, the gradual but intensifying loss of mobility, vision and speech. But these medical symptoms were compounded by social conditions: isolation, stress, debt and fear of a future in which she would not be able to live or die in her chosen home. We were caught in a perfect storm.

Brooker’s description of the vigil of these last days, like her account of her vivacious mother’s life, is both tender and unflinching. It’s almost like a counterpoint to Simone de Beauvoir’s A Very Easy Death, but with the same incisive attention and emotional transfer between mother and daughter. The book also incorporates political commentary and quotations from psychologists and cultural critics. This somewhat distances the reader; it feels less like a bereavement memoir and more like an impassioned, personally inspired treatise. But that’s not to say there isn’t some levity. She remembers good times from their earlier life together, and reckons with her new role as her mother’s memorial and archivist in a way that really rang true for me. I wish the title was more evocative so as to draw the right readers to this book.

With thanks to Fitzcarraldo Editions for the free copy for review.

Also on this topic, I have read In Love by Amy Bloom, That One Patient by Ellen de Visser, The Inevitable by Katie Engelhart, Darke Matter by Rick Gekoski, and Wild and Precious Life by Deborah Ziegler.

Last night I attended a local panel discussion put on by the Campaign for Dignity in Dying. It wasn’t a debate in that 3.5 of the 4 members on the panel were pro-assisted dying, and I would guess more than four-fifths of the audience as well. In fact, the only anti- voice of the evening was from a young Catholic man during question time. I knew about the event because one panelist attends my church: George Carey, a former archbishop of Canterbury.

The Anglican Church’s line – the religious response in general – is to uphold the sanctity of life and thus to oppose assisted suicide, so for Lord Carey to do otherwise is noteworthy. He changed his mind in 2014, he explained, after the high-profile case of Tony Nicklinson, who was paralysed after a stroke and lost his appeal over the right to die. “There is no theological contradiction between valuing life and wanting a good death,” Carey insisted. Jesus showed mercy to the ill and dying, and so should we. (He also, more facetiously, described King Saul’s mercy killing by an enemy soldier in 2 Samuel as an assisted death.)

The other panelists were a lawyer, a retired doctor, and a Member of Parliament. Lawyer Graham Wood noted that the 1961 Suicide Act, under which anyone who assists a suicide can be prosecuted, would have to be abolished, and that there would also need to be a negotiation regarding Article 2 of the European Convention on Human Rights, which protects the “right to life.” He was the most wary of the speakers, warning of the danger of undue influence being exerted by relatives when money and assets are involved – he said he sees the worst of humanity in his line of work.

Dr Barry Newman pinned his support for assisted dying to compassion and autonomy, two overriding values of a liberal society. He acknowledged the current professional risk for doctors, and noted that the UK’s main medical bodies remain neutral. However, he brought up a loophole, “double effect,” administering a medication that might end life but whose intent is to alleviate suffering, e.g., a high dose of morphine to an end-stage cancer patient.

Kit Malthouse, Conservative MP for northwest Hampshire, co-chairs a group on end-of-life and has campaigned for assisted dying. (American readers may be surprised by a conservative politician having liberal views on an ethical matter. In the UK, morality is not in lockstep with religions and/or political parties as it is in the USA. This was something it took me a while to get used to: I have Christian friends who vote for four different political parties.) He was disappointed that a members’ bill on assisted dying failed in 2015, but has hope that multiple recent cases (e.g., Esther Rantzen) will put it back on the agenda and believes support in the Commons is sufficient to push legislation through in six months.

“It’s coming,” he assured, not least because many of the UK’s European neighbours and other allies have introduced assisted dying. The UK bill does not go as far as the Dutch legislation, about which all the panelists expressed doubt, and can be tailored to this country’s health system. The status quo, Malthouse cautioned, is people suffering. We know from Oregon that the current proposal will work well, he said; there is vanishingly little abuse of the system in any of the places that have instituted assisted dying legislation.

It was all preaching to the choir as far as I was concerned. Indeed, the spontaneous applause and affirming subvocalizations reminded me of a Pentecostal church service. Clearly, many from the audience had witnessed loved ones dying in horrible ways (a few of these stories came out during question time, such as a woman whose husband went to Dignitas and another who had to fight for her terminally ill sister’s wishes when she was mistakenly resuscitated by paramedics after a suicide attempt). Malthouse observed that supporters of assisted dying have often been through horrific experiences with relatives or spouses.

I was already firmly in support so last night didn’t sway me in any way, but I was encouraged that so many people are thinking and talking about these issues. Maybe by the time I face such a crisis myself, or on someone else’s behalf, a compassionate law will be in place.