Last resort: an inpatient’s room at the Dignitas euthanasia clinic in Switzerland. Image: David Levene / Eyevine

Choosing to end it

How many of us occupy a liminal realm between life and death? And how many can pick their own way forward?
March 27, 2024

“Being dead was no great fear of hers, but being compelled to live was killing her,” writes author Marianne Brooker of her mother, Jane, nine years after she was diagnosed with a primary progressive form of multiple sclerosis.

With no remission or cure on the cards, only more deterioration, Brooker worried that her mother would do something drastic. “‘I try hard to live a good life,’ my mum printed on a T-shirt, ‘I’m equally determined to die a good death,’” Brooker reveals in her urgent, powerful book, Intervals, which explores how her mother lived up to that philosophy.

Lacking either the funds or the desire to travel to Switzerland, where assisted dying is an expensive possibility, Jane’s options were limited. “I often wondered whether she’d ask me for assistance, how I’d respond and what the consequences might be,” confesses Brooker, knowing that encouraging or assisting the suicide or attempted suicide of another person is illegal in England and Wales.

What Jane decided to do was as harsh as it was simple: stop eating and drinking to end her suffering and her life. She was 49 and Marianne was 26. “Denied a liveable life and a legal right to die, my mum made a choice within and between the lines of law,” says Brooker. “Her 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 for a future in which she would not be able to live or die in her chosen home. We were caught in a perfect storm.”

Later she elaborates that, although assisted dying is illegal in the UK, voluntarily withdrawing from life-sustaining treatment, food and water is not. What’s more, doctors are obliged to support their patients. “By this method, nobody could intervene to hasten her death and nobody could intervene to save her life… she might be permitted the ritual of a death in a time and place of her choosing, with all its bedside tenderness; we wouldn’t break the law, even if the law did little for us.”

That last, bitter dig sets the tone for a book that is as quietly righteous in its anger as it is justified. Brooker writes both to chart the path her mother chose and to expose inherent societal shortcomings. When Jane writes her Living Will (also known as an Advance Decision to Refuse Treatment), a document that sets out how she wishes to be cared for, she is bucking a trend: “people experiencing poverty are less likely to engage in Advance Care Planning and/or complete Advance Directives than those who are more affluent,” a 2021 review found. 

“The metaphors we might use to visualise our relationship to time are classed: perhaps one pictures a horizon, far away – retirement plans, pension, a future brightened by Saga holidays and new hobbies; perhaps one pictures a cliff edge, ‘where immediate concerns above survival trump advance care planning’,” Brooker writes, quoting again from the same review, by Jane Rowley et al. 

Intervals, which won the 2022 Fitzcarraldo Essay Prize, takes its title from the “middle space between living and dying” in which Brooker and her mother find themselves suspended after Jane stopped eating and drinking. It explores a situation that is “secret and particular” to Jane and her daughter while also exposing “a fundamental condition of being a human in the world: we are interdependent, both separate from and reliant upon others.” It is a book that mixes memoir with polemic and feminist philosophy. Brooker splices her lucid narrative with quotes from other writers, including Maggie Nelson, DW Winnicott, Annie Ernaux and Lola Olufemi, broadening her story from an account of what happened in a small, rented house in Devon to one that deserves to make everyone, everywhere, rethink end-of-life care.

It was “an absurdity that she could live like this but not be helped to die more comfortably and more quickly,” Brooker says about the three weeks in early 2019 when her mother was poised between life and death, as her body shut down. (“This is a shit way to die,” was her mother’s succinct text to a friend.) Many spend months, if not years, in a similar, liminal space, constrained by other chronic conditions—or perhaps they are among the 300,000 or so people over 65 seeing out their days in a residential care home in England or Wales.

Take my father. For the past six weeks he has been living in a care home in south London. He moved there on a respite basis after spending a month in hospital. Before I rang for an ambulance because he was struggling to breathe, he was living with us, in a basement room next to our kitchen. He bought the room, all three by four metres of it, in July 2022, when we completed on a new house with enough space for us all, at his behest. He has Parkinson’s, a chronic, neurodegenerative condition that means he can’t manage on his own. Compounding this, he suffers from extreme dizziness that leaves him feeling as if he is going to fall over. He never does, but the sensation keeps him bed-bound. Umpteen doctors have tried—and failed—to diagnose the cause. Lying down used to relieve his symptoms; now, nothing does.

For the first year, we coped, more or less. He was able to be more independent and could take himself for a short daily walk to a local park, where he’d sit on a bench and watch the world, briefly. But last October his symptoms worsened, his confidence was knocked, and his excursions stopped. Three nights in hospital, including one spent in a chair in the Emergency Department waiting for a bed, destroyed him physically. Once back with us, he started paying for a carer to visit in the morning and evening to do things I struggled to make time for: basic things like helping to wash him and even, when things were very bad, to feed him. But that left the other 22 hours of the day, hours I was also trying to work, look after three children and do all the normal things that start to feel selfish when someone can’t do anything other than listen to another audiobook or watch something else on TV.

‘If you’re bored in the car and can look into Dignitas for me... please do,’ I texted a friend

I don’t know how long he will stay in the care home, but I do know that it wasn’t working having him live with us. He took that a step further, telling me several times that he’d prefer not to be living anywhere—not to be living at all. “If you’re bored in the car and can look into Dignitas for me… please do,” I texted a friend when things were bleak, late last December. I knew any decision couldn’t be mine, and had visions of The Authorities getting hold of my internet search history at a future point.

“Are you really considering a Let Go My Hand solution?” she replied, referencing the moving 2017 novel by Edward Docx about three brothers wrestling with their father’s decision to join Dignitas and make a last road trip across Europe in their ancient VW Dormobile. The Zurich clinic is their father’s response to his terminal motor neurone disease.

In truth, I can’t consider any such thing; the deliberation isn’t in my power. And he doesn’t believe the powers that hold the magic syringe at Dignitas—a “help-to-live and right-to-die association” to use its full descriptor—would think he had a case. But doesn’t he, like everyone, deserve to exercise the ultimate control over his own life in a safe, supportive environment? The alternatives are grim, which doesn’t stop people from seeking them.

Questions like this matter more than ever because change in Westminster could make an assisted dying law viable. In 2010, when he was director of public prosecutions, Keir Starmer introduced guidelines to clarify when helping someone to end their life would result in prosecution. In essence: “Criminal law should rarely, if ever, be used against those who compassionately assist loved ones to die at their request,” as long as the request arose from the settled will of the person being helped. As a politician, he has gone further. In 2015, the last time MPs voted on the issue, he was among those who spoke in support of the right to choose. As recently as this March, he pledged that, under a Labour government, there would be a vote in parliament on assisted dying—with the Labour leader telling the TV personality Esther Rantzen, who has stage four lung cancer and has joined Dignitas, that he is “personally in favour of changing the law”.

Change is already afoot, as the House of Commons health and social care committee noted in a recent report into the issue following a 14-month inquiry, with Jersey, the Isle of Man and Scotland all considering the legalisation of assisted dying. MPs avoided drawing any conclusions, but Steve Brine, the committee chair, said the report was intended to “be a significant and useful resource for future debates on the issue.” The inquiry attracted more than 68,000 responses from the public. (For the record, I checked with my dad and he “would think about it” if legislation were to change here.)

I’m reminded of a short story by the cult Japanese writer Sayaka Murata, “Final Days”, in which a 36-year-old woman decides it is time to die. It is set in an alternative future, about 100 years after medicine has advanced so far that nobody ever dies. “It was feared that the population would explode, but surprisingly that hadn’t happened. As it was, once we thought we were ready to die we could do so in whatever way we liked,” writes Murata, in a translation by Ginny Tapley Takemori. “Bookstores were full of volumes on ways to die: Perfect for Women! 100 Cute Ways to Die; Die Like a Man! How to Leave an Impression in Death; The Top Ten Ways for Lovers to Die*Illustrated. I myself chose one titled Let’s Die Naturally! Super Deaths for Adults & the Best Spots.” It’s a simple, surprisingly touching premise that makes a brutal sort of sense when contrasted with the lack of options open to people suffering like Jane Brooker.

What stands out from the MPs’ report is the complete absence of any mention of what Jane felt forced to endure to achieve her own assisted death. Yet VSED—Voluntarily Stopping Eating and Drinking—is an official term, even if there isn’t any official guidance on how to support someone undertaking it, neither for healthcare practitioners nor informal family carers. In July 2022, a YouGov survey of 500 healthcare professionals found that 50 per cent of respondents didn’t understand the legal status of VSED; 40 per cent said they did not feel confident discussing VSED with patients. Being able to name what was happening was not a diagnosis, Brooker points out, but it was useful. As a name, VSED “opened up the possibility of access to hospice treatment, should symptoms that require palliative care arise; it promised new doctors, additional carers, ‘a group of people’ – however small – to hold my mum through this process,” she says.

Despite various friends cropping up here and there, Brooker gives the impression of managing her mother’s situation alone, from a family perspective, along with some state-provided support. But she discloses that she has a younger sister, whom she thanks in the book’s acknowledgements. Her “time in this story has been served and it’s not for me to summon her back against her will,” Brooker writes. The nature—and challenge—of memoir is that it can only ever be one person’s version of what happened, but the nature of being a greedy reader is that I wanted to know more.

That aside, this is a brave, generous book that begs to be widely read. Brooker captures the messy reality of a difficult death with pathos and plenty of wry asides. Pain relief when it is finally required, after almost three weeks, comes via a syringe driver that is “battery operated, ensuring that the correct dosage was delivered at the correct pace, meting out its comfort with a smug reserve.”

That same “smug reserve” is characteristic of the existing sentiment towards assisted dying. “All the while we avoid confronting its complexities, people are driven to deaths like my mum’s, or much worse. A different politics is needed to help us through this aporia,” says Brooker. “Assisted dying shouldn’t limit the terms on which we demand good lives and good deaths. The question is not whether we should change this one law, but how we can change the political and social conditions in which laws at large are made… If this book is an attempt at saying anything at all, it is to insist that we keep trying.”