Further Wellcome Book Prize Longlist Thoughts, 1

Since joining the Wellcome Book Prize shadow panel and writing up my thoughts on the longlist, I’ve read two more of the longlisted titles, Allan Jenkins’s Plot 29 and Kathryn Mannix’s With the End in Mind. Both of these books engaged my emotions, but in very different ways.

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Grief, isolation and pain

As I wrote in my original post, I first encountered Allan Jenkins’s Plot 29 when he spoke at a joint event with Alys Fowler, who was discussing her memoir Hidden NatureJenkins’s quietly devastating memoir retraces a fragmented childhood spent in and out of care, with one of his few constants being his older brother Christopher, whom he feels that he failed. The book is organised into month-long sections over the course of about a year and a half, so Jenkins’s memories of his past are interspersed with what’s happening each month in the present day, both in his beloved allotment and in his search both for the paper trail that records his half-forgotten childhood and DNA evidence that might link him to a biological family. The structure becomes even more complicated when we realise that Jenkins is deliberately only including memories that roughly fit into the time of year he’s writing about, although he has some leeway with this, given that the book spans more than one chronological year.

When Jenkins spoke about the writing of this book, he said that he had actually written each section in the month that it concerns, and although I didn’t find Plot 29 confusing, I did wonder if he’d perhaps placed unnecessary restrictions on himself. Fowler’s Hidden Nature has a similarly fragmented structure, but because her rules are less rigid, I felt that there was more direct resonance between her explorations of Birmingham’s canal network and the personal material of her story than Jenkins managed in Plot 29. Still, Plot 29 is a powerful exploration of the consequences of child neglect and abandonment. (Jenkins is not sure whether or not he was abused as a child, and the book is distinguished by the way that it emphasises that this doesn’t really matter – the simple disregard and disinterest he suffered was bad enough.) I don’t think that it belongs on the Wellcome shortlist, but this is not a criticism of the book itself – I just felt that the medical theme in the book was very slight. While Jenkins spends some time in therapy, the book is not really about mental health but about persistent guilt, enforced gratitude and an ever-expanding, ever-contracting sense of family.

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Anger and fear

Kathryn Mannix’s With the End in Mind: Dying, Death and Wisdom in an Age of Denial is written from her own experiences as a specialist in palliative care, and this proved, for me, both its strength and its downfall. The book is structured around a series of fictionalised case studies drawn from Mannix’s own experiences, many of which are deeply affecting. I was particularly touched by the stories of Sally, a young woman dying from melanoma who refused to accept that her condition was terminal, and Holly, a mum of two teenagers dying from cancer of the cervix, who suffered from a last bout of restless energy before passing away. Mannix writes particularly well on the characteristic patterns of somebody who is entering a gradual decline. As the hospice leader she’s working with on Holly’s case describes it to Holly’s daughters: ‘Have you noticed that she stops breathing from time to time? That tells me that she is unconscious, very deeply relaxed… That is what the very end of life is like. Just very quiet and peaceful. I don’t expect she will wake up again now.’

I find books of this kind difficult to review because the risk of sounding like you’re passing a (totally unqualified) judgment on the writer’s professional career. But ultimately I have to judge With the End in Mind as a book that Mannix has written, separating it from Mannix’s personal achievements, and in this context, it fell very short. It’s crucial to feel that you trust and respect the voice that is telling you such sensitive stories, but With the End in Mind left me feeling frustrated, angry and suspicious. This was for a number of interconnected reasons:

  • Unlike similar medical writers – Henry Marsh’s Do No Harm and Atul Gawande’s Being Mortal, Better and Complications come to mind – I felt that Mannix was keeping her professional distance, positioning the reader as her patient. Each section ends with a ‘Pause for Thought’ that I found simplistic and patronising, and unlike Marsh and Gawande, she writes virtually nothing at all about her own professional mistakes, although she says a little about other people’s. In every story, she positions either herself or her palliative care colleagues as the all-knowing voice of reason, and after a while, this started to feel a bit sinister.
  • This was compounded by her discussion of euthanasia, a subject that is obviously very relevant in this context. While I am broadly pro-euthanasia, I wouldn’t have minded if Mannix had directly challenged my views by offering up new evidence to support her obvious concerns about euthanasia options such as those offered in the Netherlands. Instead, I found her approach incredibly disingenuous. I almost stopped reading With the End in Mind after ‘Please Release Me: B Side’ where Mannix tells a story about one man’s unpleasant experience in the Netherlands that is entirely based on hearsay, and I realised that a number of stories she had been telling in that section had been deliberately engineered to emphasise the benefits of palliative care as opposed to euthanasia. Again, I would have found this less troubling if Mannix had been upfront about it: instead, she claims that ‘many of us in palliative care roles are exasperated by the trenchant, black-and-white opinions of the campaigners for either view [on euthanasia]’ but makes her own views pretty clear when she says at the end of the chapter on the Netherlands that ‘Once the euthanasia genie is out of the bottle, you must be careful what you wish for’, echoing familiar ‘slippery slope’ arguments. All of this made me very uneasy and uncomfortable.
  • Finally, Mannix uses the metaphor of ‘natural birth’ throughout the book to promote her vision of a ‘natural death’. She writes that ‘both processes can proceed safely without intervention, as any wise midwife knows.’ This infuriated me because of the damage, pain and suffering the language of ‘natural birth’ and the doctrine of little medical intervention has caused to women and their babies. Indeed, the Royal College of Midwives recently dropped campaigns for what they called ‘normal birth’ in recognition of this fact, although women are still denied the right to choose interventions like caesarians (in contravention of NICE guidelines on childbirth) as a consequence of this ideology. As the language of ‘natural birth’ is unfortunately quite common, I wouldn’t see this as a significant problem for Mannix if she didn’t repeatedly return to this metaphor across the course of her book. This, along with the problems I’ve noted above, left me doubting everything she said about birth and about death.

I received a free copy of this book from the publisher for review.

What’s next for my Wellcome Book Prize reading? I’m hoping to get to either Han Kang’s The White Book or Meredith Wadman’s The Vaccine Race before the shortlist is announced on March 20th.

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8 thoughts on “Further Wellcome Book Prize Longlist Thoughts, 1

  1. Fantastic, nuanced criticism of Mannix’s book. We’ve had it in the shop and I’ve been uncertain about recommending it (mostly, in honesty, because some of our customers are of an age to be possibly mightily offended by a book about end-of-life care). Your comments about her use of the terms “natural birth” and “natural death” are particularly interesting; how insidious those ideas of “normalcy” can be, and how destructive when one considers that no one really has a “normal” body in every respect.

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    • Thanks for this. I found it difficult to review because I don’t know very much at all about either euthanasia or palliative care (I’ve done a bit of work on ideas about ‘natural’ birth because of my historical research) but wanted to flag the things I found potentially worrying, and which affected how I engaged with the book.

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  2. It’s so interesting to me that we prioritized the same two longlist books. Our reactions to Jenkins’s book were very similar. However, I appreciated Mannix’s book very much, and though I see your criticisms, I chose to take her experience at face value. The metaphor of palliative care doctors as midwives for the dying process is a powerful one for me, and one that my sister found true when her husband was dying at home under hospice care. I would agree that her treatment of euthanasia definitely had an agenda, but it’s understandable given the professional standpoint she’s coming from — and the current state of the law in this country. I think if we keep in mind that she is writing for laypeople, the Pause for Thought sections could well be helpful for people who are looking to start a conversation with an ill or elderly relative.

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    • To be honest, I chose these two because Plot 29 was cheap on Kindle and I managed to pick up With The End In Mind on NetGalley! I don’t mind Mannix having her own agenda – I just wish she had been upfront about it. I don’t see any inevitable tension between palliative care and euthanasia, but obviously that is her professional position. I actually agree, weirdly enough, that the midwife metaphor works well for death as it is described here, but unfortunately it relies on assumptions about birth that I find profoundly harmful. There might have been a way to reword to avoid these implications. Finally, the pause for thought sections were perhaps so jarring for me because they position the book awkwardly between being a practical guide and a more literary, reflective text like Gawande and Marsh. However, I certainly wouldn’t deny that there are powerful chapters in the book, and I hope readers will find those helpful.

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