Assisted Dying: Intervals by Marianne Brooker; Wendy Mitchell; and a Local Panel Discussion
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.
The Inevitable: Dispatches on the Right to Die by Katie Engelhart
Why, she wanted to know, was I so interested in the subject?
“Why isn’t everyone?” I asked.
The fact that I read a lot more books about death than the average person is something I attribute not to some morbid curiosity, but to pragmatism. As the title of Canadian reporter and documentary filmmaker Katie Engelhart’s book makes clear, this is the one subject none of us can avoid indefinitely, so why not learn about and understand it as much as possible? The Inevitable focuses on the controversial matter of assisted dying, also known as assisted suicide, euthanasia, or physician-assisted death. It’s a topic that’s already come up in my reading a couple of times this year: in the Dutch context of That One Patient by Ellen de Visser, and as a key part of the narrative in Darke Matter by Rick Gekoski.
Engelhart spends time with doctors and patients who are caught up in the assisted dying argument, chiefly in Western Europe and the United States. Ten states plus Washington, D.C. have assisted dying laws, sparked by Oregon’s Death with Dignity Act in 1994. In California, the author follows Dr. Lonny Shavelson for a month, observing all the meticulous regulations surrounded a physician-assisted death: patients with a terminal diagnosis and less than six months to live have to complete multiple forms, give many signatures, deliver oral testimony, and be able to drink the fatal concoction by themselves (whereas in other countries doctors can administer lethal injections). And if, when the time comes, a patient is too far gone to give spoken consent, the procedure is cancelled.
Other chapters consider specific cases that are not generally covered by current legislation but can drive people to seek assisted suicide: the ravages of old age, chronic degenerative illnesses, dementia, and severe mental illness. Each of these is given its own long chapter, like an extended magazine profile.
- Meet Avril Henry, a former Exeter University professor in her eighties, now living alone with a failing body but no specific diagnosis that would qualify her for AD. Pain has long since outweighed pleasure in her life, so she illegally imports Nembutal from a veterinary supplier in Mexico and makes a careful plan for what will happen with her body, home, and possessions after she takes the drug in the bathtub.
- Meet Maia Calloway, a 39-year-old former filmmaker confined to a wheelchair by multiple sclerosis. Her medicines cost $65,000 a year, not all covered by Medicare, and she can no longer rely on the patience of her boyfriend, who acts as her carer. She decides to raise the money to travel from Taos to a Swiss assisted dying clinic.
- Meet Debra, a 65-year-old widow so rapidly declining with dementia that she knows she has to make her arrangements at once. She contacts the Final Exit Network, which gives advice and equipment (e.g. a nitrogen tank) that can make a death look unexplained or like a standard suicide.
- Meet Adam, a 27-year-old in daily distress from OCD, anxiety, and depersonalization disorder. Though he’s lobbied for the inclusion of mental illness, he doesn’t qualify for AD under Canada’s laws. In 2017 he starts a Facebook livestream from a hotel room, intending to take poison off-screen. He loses his nerve this time, but is determined to try again.
These stories are so wrenching, but so compassionately told. Engelhart explores the nuances of each situation, crafting expert portraits of suffering people and the medical professionals who seek to help them, and adding much in the way of valuable context. Hers is a voice of reason and empathy. She mostly stays in the background, as befits a journalist, but occasionally emotional responses or skepticism come through – Exit International’s Philip Nitschke, vilified as a “Dr. Death” like Jack Kevorkian, is too much of a maverick for her.
And while her sympathy for the AD cause is evident, she also presents opposing arguments: from hospice doctors, from those afraid that the disabled will be pushed into assisted suicide to free up resources, from the family members of her subjects, and from those who have witnessed abuses of the system. There are those who frame this as a question of rights, and others who recognize a rare privilege; some who scorn the notion of escape, and others who speak of dignity and the kindness one would show a dying pet. The book is a vital contribution to an ongoing debate, with human stories at its heart.
With thanks to Atlantic Books for the free copy for review. The Inevitable was published in the UK on March 11th and is available from St. Martin’s Press in the USA.
February Releases by de Visser, George, Lawson, and Smiley
Nonfiction about doctors’ memorable patients and a life of chronic pain and disability; novels set in 1970s Canada and contemporary (but magically outside-of-time) Paris.
That One Patient: Doctors’ and nurses’ stories of the patients who changed their lives forever by Ellen de Visser
[Translated from the Dutch by Brent Annable]
Ellen de Visser is a science writer for the most popular newspaper in the Netherlands, De Volkskrant. Her “That One Patient” column, which began in the summer of 2017, turns interviews with medical professionals into punchy first-person narratives. A collection of them was published in Dutch in 2019. This English translation tacks on 10 additional pieces based on conversations with English and American practitioners (including Dr. Anthony Fauci, immunologist and presidential medical advisor), four of them explicitly reflecting on COVID-19.
Many of the cases are decades old yet stuck with the doctor or nurse in question because of a vital lesson learned. Overtreatment is regretted just as much as an omission of care. Again and again, these medical professionals conclude that it’s impossible to judge someone else’s decisions or quality of life. For instance, a surgeon admits he had a hard time empathizing with his obese patients undergoing stomach reduction until he followed up with a young woman who told him about how invisible she’d felt before her surgery. Premature and disabled children bring grief or joy, not always in the expected doses. A doctor resents the work his team puts into repairing a woman who jumped from an eighth-floor window – why the heroic measures for someone who wanted to die? – until he learns she was pushed. A cancer surgeon develops breast cancer and now knows exactly what her patients go through.
Some of these stories are disturbing: being stalked by a patient with a personality disorder, a man poisoning his girlfriend, a farmer predicting the very day and time of his death. A gynaecologist changes his mind about abortion after he meets a 15-year-old who gave birth at home and left her baby outside in a plastic bag to die of exposure. Other pieces are heart-warming: A paramedic delivers a premature, breech baby right in the ambulance. Staff throw a wedding at the hospital for a dying teen (as in Dear Life by Rachel Clarke). A woman diagnosed with cancer while pregnant has chemotherapy and a healthy baby – now a teenager. There’s even a tale from a vet who crowdfunded prostheses for a lively terrier.
One unique thing about the Netherlands is that euthanasia is legal and provided by doctors upon the express request of a patient suffering from a terminal illness. It is taken for granted in these essays, yet some interviewees express their discomfort with it as an option for young patients. De Visser is careful to note that, even with the situation as it is, only 4% of deaths in the Netherlands are by euthanasia, and the majority of these are end-stage cancer cases.
As with any collection of this nature, some stories are more enticing than others, but overall I found it a surprising and moving set of reflections that is alive to ethical complexities and grapples with tough issues like disability, doctor error, loneliness, pain, and sense of purpose.
Two quotes, in particular, stood out to me, one from a nurse – “We are only ever guests in other people’s lives, and that’s how we ought to behave” – and the other from Dr. Fauci’s piece. In 2014 he treated a doctor who had been volunteering in Sierra Leone after an Ebola outbreak but became ill with the virus and had to be evacuated. “He cited Hippocrates: ‘It is far more important to know what sort of person has the disease, rather than what sort of disease the person has.’ You treated me like a person, not a disease, he said. And that’s what medicine is all about.” 
With thanks to 4th Estate for the proof copy for review.
A Still Life: A Memoir by Josie George
Over a year of lockdowns, many of us have become accustomed to spending most of the time at home. But for Josie George, social isolation is nothing new. Chronic illness long ago reduced her territory to her home and garden. The magic of A Still Life is in how she finds joy and purpose despite extreme limitations. Opening on New Year’s Day and travelling from one winter to the next, the book is a window onto George’s quiet existence as well as the turning of the seasons. (My full review will appear in a forthcoming issue of the Times Literary Supplement. See also Eleanor’s thorough review.) This is top of my wish list for next year’s Barbellion Prize shortlist. 
With thanks to Bloomsbury for the proof copy for review.
A Town Called Solace by Mary Lawson
I discovered Mary Lawson in 2015 with Road Ends and caught up with Crow Lake in the summer of 2019. All four of her books are set in fictional locations inspired by the villages and rural areas of Northern Ontario, where the author grew up before moving to England in 1968. So Solace, while not a real town, is true to her memory and, despite the sometimes gruff or know-it-all locals, an emotional landmark for the three central characters, all of whom are processing trauma and looking for places of comfort where they can start over.
1972. First we meet Clara, a plucky seven-year-old sitting vigil. She’s waiting for the return of two people: her sixteen-year-old sister, Rose, who ran away from home; and their next-door neighbour, Mrs. Orchard, whose cat, Moses, she’s feeding until the old lady gets back from the hospital. As days turn into weeks, though, it seems less likely that either will come home, and one day Clara sees a strange man moving boxes around in Mrs. Orchard’s house. This is Liam Kane, who’s inherited the house from a family friend. In his thirties and recently divorced, he’s taking a break in this tiny town, never imagining that he might find a new life. The third protagonist, and only first-person narrator, is Elizabeth, who lies in a hospital bed with heart trouble and voices her memories as a monologue to her late husband.
As we cycle through these three characters’ perspectives in alternating chapters, we gradually come to understand the connections between them. There are satisfying parallels in that, on multiple occasions but in slightly different ways, a child attaches to an older person or an adult stands in as a guardian for a neglected child. All of Lawson’s creations, even the secondary figures, are dealing with distressing memories or a loss of some kind, the details of which might only emerge much later on. Solace offers myriad opportunities for recovery, whether kitty playtime at Mrs. Orchard’s or diner food and homemade ice cream.
Like Lawson’s other works, this is a slow burner featuring troubled families. Her characters, often full of regret and sorrow, take a shadowy past as a prompt to reset their lives. They’re charming in spite of their flaws. I recalled that Crow Lake also looks back to the climactic happenings experienced by a seven-year-old girl. And like Road Ends, A Town Called Solace makes a convincing case for present decisions being influenced by historical trauma. It’s a tender and inviting story I’d recommend to readers of Wendy McGrath and Anne Tyler, with Clever Girl by Tessa Hadley and Olive, Again by Elizabeth Strout as specific readalikes. (My dilemma now is whether to read my only remaining Lawson novel, The Other Side of the Bridge, right away or save it: she’s not the most prolific author, with four books in 19 years.)
A favorite passage:
[Liam’s] life prior to coming north seemed to be taking on the quality of an old movie, one in which he’d been deeply engrossed while watching it but which now seemed trivial, unconvincing and profoundly lacking in either colour or plot. Solace had colour and plot in spades, maybe too much. In every way it was coming to seem more real than Toronto, with its endless malls and traffic jams and high-powered jobs. Though maybe, if he went back to Toronto, the same would be true in reverse. Maybe when he’d been back for a couple of months he’d find that it was Solace that seemed unreal, its unremarkable streets and stores like something from a dream, its dramatic landscape fading to nothing, like a holiday photo left in the sun.
With thanks to Chatto & Windus for the free copy for review.
The Strays of Paris by Jane Smiley
(Published in the USA in December 2020 under the title Perestroika in Paris. It’s been given a The Boy, the Mole, the Fox and the Horse treatment for its UK release.)
My summary for Bookmarks magazine: “A racehorse, Perestroika—nicknamed Paras—strays from her unlocked suburban stable one day, carrying her groom’s purse in her mouth, and ends up in Paris’s Place du Trocadéro. Here she meets Frida the dog, Sid and Nancy the mallards, and Raoul the raven. Frida, whose homeless owner died, knows about money. She takes euros from the purse to buy food from a local market, while Paras gets treats from a baker on predawn walks. Etienne, an eight-year-old orphan who lives with his ancient great-grandmother, visits the snowy park to feed the wary animals (who can talk to each other), and offers Paras a home. A sweet fable for animal lovers.”
Yes, this is a talking animal book, but the animals only talk to each other; they communicate with humans through their gestures and soulful eyes. Kindly shopkeepers work out what Frida wants to buy based on what she stares at or points to with a paw; the baker whose window Paras passes on her early morning walks intuits that the horse is hungry; Etienne, who gives a couple of the stray animals a home during a chill winter, learns to understand when Paras needs to go out to relieve herself, after piles of dung build up in the sitting room.
I liked how patiently and convincingly Smiley builds the portrait of each character – human or animal – and the overall situation of kindness and good fortune. Raoul is particularly amusing for his birdsplaining: “It is a feature of age. I have learned so many things in my life that they just force their way out of my beak,” he says. However, a crow would be much more realistic for Paris (or any city) than a raven, and, overall, this was a little twee and farfetched for my tastes. It was nice to read something a bit different from Smiley, who I haven’t tried since her Last Hundred Years Trilogy. She has a sideline in YA horse novels; this should probably have been lumped with those. 
(Annabel liked it a bit more.)
I was sent an unsolicited review copy by Picador/Mantle.
Bookish Beck = Rebecca Foster. American transplant to England. Freelance proofreader and book reviewer.
Bookish Beck 