Hazel McHaffie

Right to Die

The pace of change

Thirty years ago, when I first started writing novels set in the world of medical ethics, I had an abiding horror of someone else writing on the same theme and publishing before me, or real life medicine coming up with something new that rendered my plotting obsolete – or that made it look as if I’d copied from real life, or the topic simply becoming old hat in some way. In reality the reverse has happened: real life has occasionally mimicked my fiction.  And not one of the eleven novels I’ve published has actually gone out of date. Such is the enduring nature of ethical issues.

This week I’ve been following up an ongoing story in the Isle of Man – a self-governing UK dependency in the Irish Sea between Great Britain and Ireland – where a Bill is going through Parliament designed to legalise assisted dying. The first reading of the Bill was approved by 22 to 2 votes. In the second reading at the end of October, 17 members voted for, 7 against. It now faces three more stages: a clause stage – where each clause is independently scrutinised; a potential committee stage, and a third reading. If it survives these obstacles it goes to the Legislative Council where it could be signed into law and could be available as early as 2025. If it is, the island will be the closest place to mainland Britain where this service is available, although it should be noted, tourists will not be able to take advantage of it.

It’s fifteen years now since my novel Right to Die was published – hard to believe! But the issues remain the same; the complexities and caveats are still confounding the process of actually enshrining a practical workable solution in legal language; patients and families are still facing horrendous choices. Could it be that an island 426 times smaller than the UK will blaze a trail for its neighbours?

Whatever, the wheels of law turn oh so slowly. I shall not be short of potential material in my lifetime!

, , , , , ,

Comments

More ethical matters in the news

Last week I was showing a friend from the US the very building (above) where the Church of Scotland General Assembly was in session. A phalanx of eight very friendly policemen waved us into the stone courtyard cheerfully, and we stood admiring the impressive architecture, under the forbidding glare of John Knox‘s statue.

I couldn’t help feeling the displeasure of this firebrand reformer about what was going on. Because inside, the commissioners were debating serious matters about which he would have had very strong opinions. And indeed, one conclusion has surprised me too. It relates to assisted dying. After vehemently and definitively and consistently opposing it hitherto, this time these august personages openly recognised the range of theological as well as ethical opinions on the subject amongst their members, and in a highly unexpected move, they voted to review the opposition to it. Apparently the dialogue was ‘impassioned’, ‘deep and meaningful’, and took them to ‘a very human place’. So, not an endorsement, but a step further along the continuum to change.

Two years ago the British Medical Association moved to a neutral position on this matter.  Last year the Royal College of Nursing announced it was planning to review its stance too. In the last few weeks the Philosphers’ Consortium on Assisted Dying in Scotland (ethics professors from Edinburgh, Glasgow and St Andrews Universities) backed the proposed new bill which would allow competent terminally ill adults to be helped to end their lives.

The majority of the ordinary population are in favour of a change in the law too. So what a long way we’ve travelled since I wrote Right to Die in 2008!

 

 

, , , , , , ,

Comments

Points of View

The importance of the point of view (POV) is something that’s drummed into writers: it’s the narrative perspective from which a story is told, important because it’s the angle from which readers experience the plot, observe the behaviour of the characters, and glean information about their world. In fiction, there are four types of point of view: first person, second person, third person limited, and third person omniscient, and the appeal of the story is largely dependent on, and enhanced by, whichever you choose. I sometimes experiment with different approaches to see which provides the best angle.

But recently I’ve been increasingly struck by the importance of POV in understanding a comment or a situation or a belief in real life too. As the late Queen Elizabeth II famously said of Harry and Meghan‘s exposure of ‘their truth’ about the British Royal family: ‘perceptions may vary’. Indeedy! And she was spared the worst excesses of their revelations accruing from Harry’s book, Spare, published this week, and the accompanying interviews.

Take for example, the BBC drama, Mayflies, shown during Christmas week (yep, I know, I know, curious choice of timing for a death drama, but hey ho). Based on a novel by Andrew O’Hagan, it tells the story of the response of one man, Tully, to a terminal diagnosis and 4-month prognosis. He doesn’t want to slide into indignity and suffering and incapacity, he wants to quit at his own time in his own control and commensurate with the way he lived his whole life – joyfully, flamboyantly. He chooses Switzerland. But no man is an island. His life-long best friend, Jimmy, is devastated by the news, and even more so by a request for help to get Tully to Dignitas in Switzerland, especially when it involves deceit and betrayal. Tully’s partner, Anna, is equally shattered by the prospect of losing her love, even more appalled when she discovers she’s been duped, and furthermore she’s implacably opposed to the whole business of deliberately ending one’s own life. Viewed through the POV of each of the three principal characters, the whole dynamic of the story changes. I found this applied powerfully in my own book on this topic, Right to Die.

Then there’s the long-running ongoing battle to change the laws on gender recognition. If you’re a teenage boy desperate to assume a new identity as female, I’m quite sure you’d be thrilled to hear you could do so immediately without medical verification, or years of living in the assumed gender before an official change can be recognised. If you’re a woman who’s been sexually abused and you fear the invasion of private single-sex spaces, you’d probably view the prospect of relaxation in the laws with some trepidation. If you’re a male rapist and you can see new horizon’s opening for access to vulnerable potential victims … well, what would your POV look like?

Oh, and then there were the Royal Institute Christmas lectures where the always-entertaining and erudite Professor Dame Sue Black aka Baroness Black of Strome, brought in a raft of experts to show vividly how so many professionals, all with a different point of view, use forensic science to unravel a pathological scene. Brilliant presentations; fascinating insights; exploring vital factors in the pursuit of justice and fairness.

A smattering of examples, but all highlighting the need to listen attentively to, and respect others’ POVs, and to have the humility to modify our own in response to accumulating knowledge.

, , , , , , , , , , , ,

Comments

Festival time again

It’s that time of year again: the Edinburgh International Book Festival is in full swing. My happy place!

On Saturday I had the pure delight of listening to three excellent speakers all dealing with topics very dear to my heart, all having just published or just written new books.

Retired neurosurgeon, Henry Marsh, talked about the lessons he learned from admitting his mistakes as a surgeon, and how vulnerable he’s been facing up to his own diagnosis of advanced cancer and his impending death. The transition from one side of the consultation table to the other has proved surprisingly difficult, he admits.  Given his stature and experience, his honesty and humility are compelling, and somehow give us all permission to feel vulnerable and afraid. I’ve read his earlier books and listened to him several times, but with his latest one called And Finally, I fear he might just have laid down his pen.

Abi Morgan, is an award winning screenwriter, with brilliant TV series like The Split, and films like The Iron Lady, to her credit. She’s also dealing with treatment for cancer, but the main message she was sharing at the Festival was the experience of her husband, Jacob, developing a condition known as brain on fire, a form of encephalitis, which caused him to believe she was some kind of imposter. It has taken eighteen months and a long stay in hospital for him to recognise her. She too talked with such frankness and insight. The film rights to this most unusual love story have been sold, with Morgan herself writing the screenplay, and already thinking of POVs and actors – I’m already eagerly anticipating it.

Nihal Arthanayake, an Asian BBC radio presenter, used his wealth of experience interviewing celebrities and interesting people to talk about the art of making conversation. In this digital age where social media is cultivating an increasing sense of narcissism, he feels, we need to learn to take a real interest in people, engage in meaningful empathetic dialogue, and ‘listen to understand’ rather than ‘listening to talk’, as he put it. I totally agree. He’d be just the kind of person you’d want beside you at a long dinner party!

Then, on Monday, this was followed by Amy Bloom talking about her husband Brian’s Alzheimer’s and taking him from the USA to Dignitas in Switzerland to end his life. She’s an author, screenwriter, teacher, therapist, social worker, and spoke so eloquently of the slow realisation of what was going wrong with him, and his passionate wish for autonomy and agency in death as in life, which she respected. In her State of California there is no right-to-die provision, and she vividly captured the hoops they needed to go through to establish his capacity to make this choice even when dementia was taking away so much of his true potential. I loved her robust no-nonsense approach.

Medical ethics is alive and very well in the world of books! What a fabulous opportunity to listen, without interruption or distraction, to these fascinating super-articulate people, for whom writing has been therapeutic and cathartic, to travel with them into some most intimate and troubling places, and to do so from my own home, at an affordable price, choosing just those topics that really float my boat. A brilliant facility which has come out of the pandemic – thank you EIBF.

, , , , , , , , , , , , , , , , ,

Comments

The Assisted Dying Bill … yet again

Patience is the name of the game when it comes to legalising assisted dying, it seems. But this week there’s been a significant breakthrough.

Back in the noughties, when I was writing my novel, Right to Die, about a young man who contracts Motor Neurone Disease and contemplates ending his own life, I lived in daily dread that something would happen to steal my thunder, and the bottom would fall out of the marketing strategy, before it hit the bookshelves. That was 13 years ago! At that time, Lord Joel Joffe was expending his energy trying to get a bill drafted to ease the lot of those facing intolerable suffering at the end of their lives. I had the privilege of meeting him in London, at the House of Lords, to talk about our shared interests, and he very kindly endorsed my book. Sadly his bill didn’t get through, and he died disappointed by this.

In Scotland, MSP Margot MacDonald fought valiantly for an easement of terminal pain and suffering, her case the more powerful because she herself was suffering with Parkinson’s Disease. I listened to her too on a number of occasions, and was moved by the passion behind her case. She too died without seeing progress on this front.

These are but two of the many notable figures who have kept the issue alive, nibbling away at the edges of the arguments about the horror for some people who face a slow undignified and painful death, and who would welcome the security of knowing that, if things became intolerable, they had a way out that wouldn’t incur penalties for those left behind. Experience in other countries (the USA and Netherlands especially) shows that a large proportion of those who have an advanced directive authorising assisted death, never actually avail themselves of the service. It’s enough to know it’s there if needed.

Over the years, we’ve all heard and seen patients and families sharing their plight with the media, publicly throwing their dwindling energies and resources into fighting for compassion and understanding. We’ve listened to politicians, clergymen, philosophers, religious people, those with disabilities, putting their perspectives into the melting pot. For and against. Passionate, angry, distressed, vengeful, dogged. And gradually, over time, we’ve seen a softening of attitudes taking place.

As far as the general public are concerned, opinion has swung in favour of a change in the law; for some kind of easement of intolerable suffering. Politicians have gradually – almost imperceptibly – become less scared of picking up this hot potato.

But one group of people who’ve remained reluctant to back assisted dying has been the doctors. Small wonder: they’re the ones who will be on the frontline, actually taking those active steps to supply the fatal drugs, or even administer them, to help eligible patients end their lives, should this become legally permissible in this country. And, as we all know, doctors are in the business of caring not killing.

However, this week, the British Medical Association has dropped its opposition to assisted dying and adopted a neutral stance. Not in favour, please note. Neutral. And indeed, the vote hinged on a hairsbreadth! 49% of the representative body voted in favour of a move to a position of neutrality; 48% were opposed to such a move. They, in turn, were acting on behalf of their members: 40% of whom were in support of a change in the law to allow assisted dying; 33 opposed to it; 21% thought the union should be neutral on the subject. A position of neutrality gives scope for all ranges of opinion. It’s a major step.

And a timely one it seems. Because next month a new version of the Assisted Dying Bill is due to be put to the House of Lords for a second reading, this time promoted by Baroness Meacher – whom I have NOT met! It would seem to have a stronger chance of success this time because of the BMA shift. Time will tell, but I’ll be watching this space closely and thinking of all those who have paved the way but died disappointed.

, , , , , , , , ,

Comments

Is it ever right to take a life?

With all the events marking 75 years since D-Day and the Battle of Normandy, and other war-related events, my mind has been travelling the well-worn path of … is it ever justifiable to take a life? And is there a kind of life that’s worse than death?

Then for the last two Thursdays those questions have swirled again, watching Susanna Reid interviewing inmates awaiting execution in maximum security prisons in the USA for her series: Death Row: Countdown to Execution. The state of Texas supports the death penalty, and the locals appear to take it in their stride, but Susanna found it unsettling just being in the town with the execution chamber, to know exactly when a human being was being walked to that gurney, strapped down, given that lethal shot of Pentobarbital. She wanted to know exactly what was happening, how everyone felt – the convicted man, the family, the witnesses, the townspeople. She’d met these men briefly in the last few days of their lives, and in spite of their criminal backgrounds, it clearly troubled her.

Many inmates are held on Death Row for decades (the average 12 years) and massive amounts of money are spent on appeals even up to the eleventh hour. Fewer than 2% are exonerated but the process has to be gone through, seeking additional years or days of life if nothing else. For those who are the victims of the crimes (and that often includes the family of the convicted man) the death brings a form of closure; but opponents believe that society should not sink to their level. After all, as they said, we don’t rape rapists, we don’t steal from burglars; why should we kill murderers? ‘We should be better than that.

And against all this my mind goes to my own area of particular interest, viz the issues around assisted death for people on a different kind of trajectory: those with incurable, degenerative illnesses; trapped for years in many cases, with no hope of a reprieve. Their own kind of death row; their own kind of hell. And our society – too humane to kill convicts – is also unwilling to countenance patients ending their own lives when the pain, the suffering, the indignity, are intolerable. Is this justice? Is this fair? Is it humane? As Scottish former Rugby Union player Doddie Weir (who has Motor Neuron Disease himself and has just buried his mother after a fairly short experience of cancer) said this week: Being a farming boy, when there is no hope with the animals you are able to put them out of their misery, but with humans it is not allowed. It does not seem fair sometimes.

So many truly difficult questions; so many nuances and valid perspectives. I studied this topic in depth before writing Right to Die, published in 2008. I’ve repeatedly returned to it since. Eleven years on we’re no further forward in terms of the law. Assisted suicide is still illegal; doctors who help a person to die still face a jail sentence of up to 14 years. However, public opinion has swung much more towards some provision to help people caught up in these intolerable situations, helped in no small measure by the brave souls who have shared their harrowing experiences openly. Then in March this year, the Royal College of Physicians declared neutrality on the subject. And this week the Royal College of General Practitioners has said it will consult its 53,000 members on whether the time has come to drop their opposition to assisted dying. The wheels grind oh so slowly, but they do seem to be turning.

What do you think?

, , , , , , , , , , , , , , , , , , ,

Comments

Baroness Mary Warnock

It’s almost eleven years since I shared a platform with Baroness Mary Warnock, but I’ve never forgotten it. We’d both just published books about assisted dying: hers, An Easeful Death (with Dr Elisabeth MacDonald); mine, Right to Die, and we were appearing together at the Edinburgh International Book Festival.

She was already very well known, an established and influential figure in the world of philosophy, and author of The Warnock Report on Human Fertility and Embryology, an outspoken and at times rather intimidating person, who had strong opinions of her own. I recall she wasn’t too impressed when I questioned her statement that assisted death was not killing, and dismissed my quibble out of hand. She was sitting in her philosopher’s ivory tower well away from human reality; I was speaking from the viewpoint of a clinician at the sharp end.

Though known for her sharp mind and fearless debating, in great demand for committee work, she was widely criticised for being an ‘instant expert’, for having no truck with those who held strong immovable moral principles, for voicing shockingly derogatory comments based on social class and personal prejudice. Her certainty that she was always right stemmed from her childhood and sense of personal superiority. ‘In my mother’s family,‘ she said, ‘we were brought up to believe we were the best; there was simply no doubt about it and that sort of conviction resists evidence.’ I confess I caved in more than once in the face of her dogmatic assertions, even though in my heart of hearts I disagreed strongly. Somehow her reputation and self-confidence left scant room for challenge, especially from people as far down the food-chain as me!

One of the most outrageous statements she made was, ‘If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service’. She advocated encouraging such people to end their own lives to avoid being ‘a burden‘. To my shame I never did summon the courage to take her to task on that, though I’ve spent years working alongside people with dementia and wholeheartedly supporting efforts to enrich rather than end their lives.

Having said all that, I was touched by her generosity in endorsing my own writing. Emboldened by our brief acquaintance and pleasant exchanges, I rather trepidatiously sent her the draft of my novel, Saving Sebastian, which overlapped with her interest in genetics and embryology, and she was kind enough to endorse it warmly:
‘Problems in medical ethics are not just for doctors but for everyone,’ she wrote. ‘Hazel McHaffie has found a way to bring them before a wide public. You are gripped from the very beginning. but as you turn the pages, you are compelled to think about the issues. It is an excellent formula.’
I forgave her much!

She was made a DBE in 1984, a life peer in 1985, a Companion of Honour in 2017. The last time I saw her in the flesh she was a much diminished figure, so hard of hearing she missed much of what was said, and at times her comments fell like stones into a pond; sad to witness. She died this week, on March 20, aged 94, after a fall, a richly decorated though hugely controversial figure. Perhaps, in the world of medical ethics at least, we need such characters to provoke discussion and sharpen our own opinions.

 

, , , , , , , , , ,

Comments

Future possibilities

There will never be a shortage of subjects for me to write about! I lose tracks of scientific breakthroughs and medical marvels. And today, given the breadth and range of material available, I’m not going to even attempt to link everything I mention to scientific papers – Google the key words and you’ll get the information if you’re interested.

When HIV/AIDS first came to our attention in the 80s there were doomsday predictions of biblical plague proportions and real-life devastating statistics. I was a researcher at the time and saw it, wrote about it, first hand. Then came huge public awareness campaigns … followed by the development of anti-retroviral wonder drugs … then combination therapies, that could hold the disease at bay. Now here we are, with stories of stem cell donations from people with ‘natural immunity’ rendering patients free from the virus. You could weave a pretty complex plot with that one! And in 2019 my file marked HIV/AIDS looks completely different from the slim wallet of 30 years ago.

Inside of Me coverThen there’s the transgender issue. Wow! So many dimensions. About young children wanting to transition. About people wanting to reverse the process; the irreversibility of some therapies. About misleading statistics. Eebie jeebie – how crazily tortuous a plot could you construct in that area. The imagination goes into overdrive. Makes my little sally into that world in Inside of Me, pale into banality.

It’s 41 years since the first test-tube baby, Louise Brown, was created, and infertility was very much top of my pile when it came to choosing subjects for my set of novels. Now despite widespread opposition, criticism, vilification, stigma, as many as 8 million babies have been born by IVF. And the endless thirst for knowledge and understanding, coupled with a bottomless pit of compassion, drives researchers and clinicians in this area to seek more and more solutions to the problems couples have in conceiving, or avoiding perpetuating deadly genetic diseases. There’s mileage for several more books to follow on from Paternity, Double Trouble and Saving Sebastian. Did you know, for example, that the success rate for assisted fertility is way way higher (50%) than for natural conception (25%) … plenty of scope to work up a story-line there, huh? Imagine a gang of 35-year-old career girls going to the freezer to select artificially-created sperm … or genetically screened/modified embryos … ticking selection boxes along the way for green eyes, athletic ability, fiery temperament …? Endless possibilities!

The statistics on abortion reflect changes in society’s mores and values; programmes like Call the Midwife have increased public awareness of how things have developed in a generation. Add in dating apps, modern career paths, cohabitation, social expectation, fertility statistics … I feel an historical reflective story coming on! I well remember, in the 70s/80s soon after the 1967 Abortion Act was introduced, women coming in for a second, perhaps even third, abortion were looked upon askance. Recent Government figures have highlighted that of almost 68000 abortions carried out in 2017, 1049 were undergoing their fifth abortion and 72 their ninth! And there’s a story behind every one.

Then there’s the horrific topic of female genital mutation … don’t get me started! The recent story of the first person to be convicted in Britain briefly reported in the national press was shocking enough – the little girl was three years old; the mother cut the child herself in her London home; indecent images and animal pornography were involved. I absolutely couldn’t go there with fiction. But … should our collective conscience be prodded?

Resources, caps on the cost of medical and social care … I’m somewhat allergic to numbers, but reading about the human consequences of budgetary restrictions brings out the indignant in me. And might just compel me to write about it if I’m around long enough to get to that file.

Even the topic of assisted dying – a recurring hot potato – has subtly changed since I published my novel on the subject, Right to Die, eleven years ago. The issue’s been described by lawyers for the Royal College of Physicians as ‘one of the most controversial and morally contentious issues in medicine’, but ongoing polls of both medical and public opinion show a definite move towards accepting the need for some change. This might be simply taking a neutral professional stand as against opposing it; or a swing towards legalising some form of assisted suicide in the UK. A novel today could look very different.

Yep, I’m endlessly adding to the possibilities in my files as medicine and science reveal more and more, and society’s tolerances and expectations change. This is just a superficial skim. Anyone out there keen to pick up the gauntlet?

, , , , , , , , , , , , , , , ,

Comments

A lifelong apprenticeship

Wow! I’ve had quite a jolt.

Picture if you will …

… the Canary Islands: brilliant sunshine, millions of years of volcanic activity, vibrant flora, a whistling language, an excellent health service but serious economic struggles …

Fascinating and a real get-away-from-it-all break. But, in the back of my mind, lurks the thought that I have an author appearance shortly after I get back to the UK. Hmm. Best tactic? Jot down a few ideas in idle moments, on the train/plane/ferry, let the topic (‘Well-being’) simmer on the old back burner, but concentrate on the Canarian experience.

Overall strategy? Take the audience up to the bedside of some of my characters, let them listen to the conversations, enter into the minds, of people who are facing challenging, even tragic, choices. Give them a chance to consider the different options themselves. Maybe ruffle their sense of well-being a tiny tad …?

Saving SebastianHow would you feel having a four-year-old dying in front of you, I wonder? Would you agree to create another baby specifically to try to save his life, knowing that many perfectly healthy embryos will probably be destroyed in the process, that this new child might have the same fatal blood disorder too, that it might all be in vain?

How would you react to being told you have a terrible degenerative disease which will certainly destroy your body inch by inch, killing you before you reach your 42nd birthday, your brain fully aware of every ghastly step?

You get the idea.

It’s a long time since I wrote – or indeed read – my earliest books, so I quickly realise I need a crash course on McHaffie’s medical ethical novels. Happily I have several on my Kindle, so I immediately start to update myself. And that’s when I make a sobering discovery. I want to edit them! Hey, why did I write this that way?! But of course, I can’t change it; not now they’re published. Any more than I could change the experience I had of Tenerife, or La Palma, or La Gomera, once the ferry drew away from each in turn.

Why should that surprise me?  It shouldn’t. I’ve moved on, honed certain skills, developed my craft, progressed – hopefully! As Ian Rankin once said; the reason we keep writing is, we’re always trying to improve, to write the perfect story. It’s a lifetime’s apprenticeship.

And each time I embark on a new book, the older ones recede in my mind, much as the islands become hazy and less defined as the ferry powers off across the Atlantic.

New horizons beckon. I’m already scanning the ocean for new excitement, noticing the changes in colour and swell, watching the other passengers, wondering about their lives … scavenging new ideas, creating new connections, forging a new pathway in this fathomless deep that is our world/imagination.

So, it’s been a salutary experience, re-visiting my own earlier novels. I’ve had to forgive myself for the failures and infelicities of the past, cling on to the better aspects, and extract useful messages that might provoke discussion and pique interest when I’m in that other life, in that Scottish library, talking to an audience about ‘Well-being’ and the writing life.

OK, next step? Inject some humour! Don’t want them leaving in tears, never wanting to go to a library again, do we?! And there’s planty to amuse in my books … a fabulous train conductor on the Aberdeen-Penzance Cross-Country run; a minister with holey/holy socks and an all-embracing love; a lab technician who quotes Oscar Wilde to excellent effect … I’m sure they’ll come to my aid. But first, let’s savour every experience these amazing islands have to offer. No need for regret on that score.

 

 

, , , , , , , ,

Comments

Conversations on Dying

‘And that’s the reality of all human lives when it comes down to it, isn’t it? That we choose the narrative we write with our lives every day. By the decisions we make, by the ways we chose to spend our days, we craft the lives we live in, our story.’

Dr Larry Librach lived a rich life, told an impressive story.

‘If you had to imagine an archetypal favourite uncle, you’d probably come up with someone like Larry. His eyes crinkle because a smile is his face’s default setting. His trademark moustache, which has been grey since I first knew him, is always neatly groomed, but it’s constantly being worked – curling upward at each end, He still has a full head of hair, despite his sixty-six years, and it always gives the impression that it’s on the cusp of being unruly – that it might any second explode into an Eisteinian mop.’

Dr Librach? … Who? … He was a palliative care physician in North America, co-founder and director of the Temmy Latner Centre for Palliative Care, one of the largest such centres in the world. He dedicated his working years, his distinguished career, to helping his patients navigate their final journeys, to teaching others to truly understand and provide empathy, sensitivity and real support. He readily agreed to assist journalist and writer, Phil Dwyer; to be interviewed, to be shadowed as he went about his work caring for dying patients in the community. Here was an opportunity to teach a far wider circle of people than those in his immediate circle of students and colleagues. To improve care everywhere.

It was a body blow to Dwyer when he learned that Larry himself had been diagnosed with terminal pancreatic cancer. But such was the generosity of the doctor (and his wife) that Larry continued the interviews, now sharing his own personal experience of dying at every stage, to give an even more intimate insight into what it feels like to walk this painful path. One more teaching opportunity – perhaps the most powerful. One more chance to tell those who would come after him – patient, relative, friend, physician – what helps, what hurts, how care could be made better.

‘It wasn’t the cancer that crafted Larry’s narrative, but the choices he made after he knew about it. Larry chose to die, as he had lived, with purpose. It was only that, only his intent, that gave his death meaning. But it was enough. More than enough.’

Conversations on Dying is the book that came out of this joint venture. It’s a beautifully hopeful, energised story of love and commitment, of family and friendship, and a seemingly bottomless well of compassion. Larry somehow manages to combine an honest appraisal of the emotion and pain of his situation, with a rather unnervingly detached scientific perspective and analysis, even when things seem bleak and overwhelming.

Phil Dwyer too is impressive. His intimate connection with his co-worker is plain to see, his own grief and pain raw, and made all the more poignant because he is simultaneously reliving the death of his own elder brother three years before from throat cancer. He compares the two experiences, learning, understanding, mourning … and with new illumination comes new sorrow. But in spite of the personal cost he manages to write with elegance, wisdom and sensitivity, creating a narrative both moving and intensely readable.

No detail is too small, no nuance missed. His brother John had craved a Chelsea bun and a pint of beer; the mass in his throat prevented him ingesting either.

‘These are the things we lose. Everyday things. Things we’ve experienced thousands of times without pausing to savour them. These are the things that become important when they’re taken away from us.’

Phil (in Canada) and John (in the UK) were continents apart. He lived in dread of that  unexpected family phonecall from a foreign land, the terror, the immediate imaginings of death or disaster.

Mayhem lurks in that transatlantic static
‘… hollowness would open up as I lifted the handset’

And finally …

‘When she [his sister] did [speak] it was in a voice that had been washed clean of every bright note, a flat, emotionless tone from the country of the mourning. She couldn’t even say the words. All she could say was “it’s happened”.’

It might be supposed that Dr Librach’s own experience would be one of gold standard care. After all he was famous, it was he who taught his personal physicians how to care. But no, he too was subjected to thoughtlessness, insensitivity, even negligence at times. A receptionist chose to file her nails rather than give him thirty seconds of her time to supply a document he needed. Dr X completely fouled up Larry’s treatment for jaundice. But he faced the good, the bad and the ugly equally with courage and clear sightedness. He listed the deficiencies of current provision in his own discipline boldly and wisely:

  • Liaising between parts of the system is poor; appointments are not dovetailed, making impossible demands on dying people.
  • There’s too much centring on disease not on the person and family; insufficient true caring; not enough team spirit; too little respect for the patient’s time; too little empathy; ineffective information exchange; too little welcome.
  • The government is all about performance indicators; healthcare administrators are more into spreadsheets, too far from the bedside.
  • Not everyone with cancer needs to have treatment; quality of life as opposed to quantity is important. Chemotherapy can kill the elderly as well as cripple the health care system. Why try to save the dying at all costs? What for?

Ring any bells?

In the face of ‘the gut shreddingness of the emotions that tear into us at such a time’ there are certain key things that matter. Typically he gets to the very kernel of what counts in the end:

  • being respected and cared for as an individual
  • being heard
  • being free to ‘let it all hang out’, sharing the emotions, not bottling things up
  • keeping communication lines open
  • finding your own meaning and value in life

Simple things. Human, compassionate, loving things.

I’ve written and talked about the issues around dying myself for many many years (ad nauseam my family would say!); I’ve read countless books on the subject; I’ve even written a novel about assisted dying. But this one, Conversations on Dying, is unique in my experience. Its candid and energetic approach, the intimacy of the collaborators with each other and with death, their courage and generosity in allowing us to witness their raw emotion and vulnerability at close quarters, their clear summary of the issues that matter, offer us at once an enormous privilege and a lesson for life. I salute them both.

And thank you, Amanda, for recognising that this is my kind of reading, and for your generous gift of this special book. I shall treasure it.

(NB. You may like to know that radio broadcaster Eddie Mair has recently recorded a series of talks with journalist Steve Hewlett – who died a couple of weeks ago – about his experience of terminal oesophageal cancer. They cover similar ground.)
 

 

 

, , , , , , , , , , ,

Comments

Previous Posts