Hazel McHaffie

Atul Gawande

Reflections on Mortality

The 2018 Festival is proving to be as spectacular as ever – so much talent, such variety. You’d need to be a complete Philistine not to find something to your taste and I’m having a ball. And there’s so much to soak up around and about the city besides the featured events. During a visit to Blackwell’s book shop for their Writers at the Fringe event, for example, I noticed a book display dedicated to the 70th anniversary of the NHS, several of the exhibits talking about the art as well as the science of caring, and as I sat waiting for the five authors to begin their presentations, it got me thinking.

Wouldn’t we all love to be cared for by a truly empathetic compassionate doctor in our last months, weeks, days? I found one recently – one moreover who recognises that ‘Doctors – like writers, artists, and spies – are professional people-watchers‘. Sounds like my kind of person, huh?

I’ve been intimately acquainted with death since the age of 18. To some extent health care professionals have to learn to maintain a safe distance in order to keep on giving, but it’s a difficult balance to achieve. I once worked with a lovely young doctor (who has been my friend for over forty years) who was so nervous when he had to convey bad news that he giggled. As his colleague I understood it was because he cared too much for his own comfort; the relatives couldn’t know that and were probably appalled by his seeming insensitivity.

Asian American doctor Pauline Chen learned through bitter experience too, and she’s taken the brave step of writing about the difficulties and pain of contemplating death and walking alongside people facing its reality in Final Exam: A Surgeon’s Reflections on Mortality. Like most naive youngsters she entered medicine with a rosy view of saving countless lives; she had no idea of the extent to which death would become such a haunting constant in her career. But in a society where more than 90% of patients will die from a prolonged illness, she joined the ranks of those whose task it is to shepherd the terminally ill and their families through the intricacies and pitfalls of the end, those who are expected to know how to provide comfort and support.

Initially Chen discovered from her mentors and teachers how to suspend or suppress shared human feelings, to adopt the twin coping mechanisms of denial and de-personalisation. At first, too raw to be let loose on patients, she learned to detach from the elderly lady cadaver in the dissection lab where the formaldehyde, used to preserve dead bodies pervaded her clothes and hands and hair – the olfactory version of a high-pitched shriek. Once out in the clinical arena, she had far more disturbing senses to deal with and she learned to avoid, obfuscate, reinvent, disguise, deny.

‘Even medical students chosen for their humanitarian qualities and selected from a huge pool of applicants may have their generous impulses profoundly suppressed by their medical education.’

But gradually, painfully, she came to realise, through a multiplicity of small inconsistencies and troubling paradoxes, that these techniques were in fact incapacitating her. She began to extricate herself from those same learned responses and to open herself up to something far more rewarding than curing someone. She came to see that when terminally ill patients were ‘Pushed to view their own mortality directly, they too would live the remainder of their own lives that much more fully than the rest of us.’ New dimensions, wider horizons, opened up to her: that, in fact, ‘… dealing with the dying allows us to nurture our best humanistic tendencies.’ And she came to appreciate the advice of a much respected colleague who was both oncologist and cancer patient: ‘You’ll be a better doctor if you can stand in your patients’ shoes.’ That the ‘honor of worrying – of caring, of easing suffering, of being present – may be our most important task, not only as friends but as physicians, too. And when we are finally capable of that, we will have become true healers.‘ I love the idea of it being an honour to worry and care.

Final Exam is a beautifully crafted book, from the simple but evocative cover and the so-apposite title page, through the quality paper, to the single tribute on the back from one of my favourite medical authors, Atul Gawande:
‘..a revealing and heartfelt book. Pauline Chen takes us where few do – inside the feeling of practicing surgery, with its doubts, failures, and triumphs. Her tales are also uncommonly moving, most especially when contemplating death and our difficulties as doctors and patients in coming to grips with it.’

In telling the stories of many of her patients alongside her own, Pauline Chen has generously shared what it means to have the grace and humility to examine our own imperfections and misconceptions, to learn from the honesty, pain and sorrow of others, to become a more empathetic and warm human being. We don’t need to be practising health care professions to learn from her example.

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Humble, fallible and bloggable

I must confess that I started my blog because I felt I needed
a) to make my website more active and
b) to relate to visitors more as the real everyday me.
But I’ve come to thoroughly enjoy writing it. It’s rather compulsive, actually. Getting feedback from readers has spurred me on and proved unexpectedly encouraging. Plus there’s the bonus this year, when my mind has been distracted, and time fractured by matters to do with my mother’s deteriorating health, of the therapeutic value of regular writing. Producing something is definitely better than producing nothing. The latest novel has hiccupped along; the weekly posts have demanded focus and imposed gentle but necessary deadlines.

The experience of writing my own blog has also given me a new interest in other bloggers – especially bookish ones. I’ve learned a lot from studying their entries, what appeals, what repels. You’ll find some of my personal favourites on the blogroll on my homepage (Cornflower, Dovegreyreader, Stuckinabook, top the list). I’ve been fascinated by their reviews of a wide variety of books, as well as the way they let readers into their lives. Not to mention gobsmacked by the sheer speed of their reading in the midst of busy lives, and the thoroughness of their analysis. Where do they find those 36 hour days?!

It was purely by chance though, that I discovered blogs by a paramedic had attracted sufficient interest to be converted into books. Tom Reynolds won the Medgadget Best Medical Blog and Best Literary Medical Blog for randomreality.blogware.com. I’ve been reading his books: Blood, Sweat and Tea and More Blood, More Sweat and Another Cup of Tea, on my travels this past month, and in odd moments when I needed diversion but couldn’t concentrate on my normal kind of reading. The short extracts lend themselves to those with a limited attention span; you can dip in and out without losing the thread. And these particular stories fulfill a useful function for me right now because I want to get a feel for the life of paramedics for my current book; these snippets give me a little insight.

I like the air of self-deprecation Reynolds adopts – the honest accounts of how he failed the ambulance driving test several times, how he fell for patients’ tricks and colleagues’ banter, how he froze at critical moments. And in spite of the serious nature of the work, there’s a pleasingly wry humour mixed in with the compassion. No effort is made to disguise the sheer mundanity and sameness of much of the work; the glamorous moments, the adrenaline rushes, few and far between.

But there were things about Reynolds’ writing style that irritated me, so I’ve moved on to Peter Canning’s Paramedic. At the age of thirty-six Canning left his well-paid and cushioned life as a speechwriter and top health department aide to a Connecticut Governor, to work on the city streets as a paramedic. Here’s a man who wrote for a living and it shows. But, though more fluid, the writing is delightfully unadorned too. And again there’s that light mocking tone that appeals to me. He recounts his failures more than his successes, and the effect they and his job have on his confidence and self-esteem.

I’ve been in a bad funk lately. Normally it is only on Tuesday morning when I ride into work for my first shift of the week that I feel the doubt and wonder why I am doing this, but this week the doubts last all week long. I just turned thirty-seven. I have no pension built up. I have no law degree or medical degree or business skill to fall back on. I am barely living on what I make, borrowing from savings to buy books. I will have to borrow again to get a new used car as my trusty old Plymouth has a limited future. I think if I gt married and have a kid by the time I’m forty, I will be sixty when he is twenty, seventy-seven when he is my age. That’s old. I wonder how I will be able to send him to college or help him out with pocket change. My body is stiff and sore now. What will it be like then? Will I be able to throw a baseball around with my grandson, or will I have to be led on a walker to his Little League games on day-leave from the nursing home?.’

I watch the doctors in their offices or at their workstations as they consult and hobnob with each other. There is a real class system here. The doctors are at the top, then the nurses, then us at the very bottom. I tell the nurses what I get for vital signs. They retake the vitals themselves and write them down on their pads. I tell them the story, they say thanks, then turn to the patient and ask what is the matter. They need to do it, but it makes me wonder what the point is sometimes. I might as well just pick them up, put them on the stretcher, and deliver them. I write my run forms, but they seem just like pieces of paper that will go unread.’

‘In a few days I will snap out of it. I will remember that I love this job. I will start doing challenging calls again. I’ll give nitro, Lasix, and morphine to a man in congestive cardiac failure, and it’ll chase the suffocating fluid out of his lungs, and he’ll be able to breathe, and relax, and live for a while longer. And I’ll be on scene just six minutes at a bad car wreck – I’ll get my lines, make a patch, and get the patient into the trauma room. And I will gently convince an elderly woman suffering from gangrene to leave her north end home which she loves for the medical treatment she desperately needs. And I will goof with some kids …’

Surgeon, Atul Gawande, adopts the same kind of self deprecatory tone too, in his series of books about life and experience in a busy American hospital. (I wrote about him back in July.) These are men who do a hugely valuable job, earn public trust, hold lives in their hands, but they know that they are but cogs in a larger machine, and that everybody makes mistakes. They are humble enough to acknowledge their own fallibility. As Canning says after one particularly gruelling call when everything seemed to go wrong: ‘I feel again that overwhelming burden of failure that I try to ignore for fear the sheer weight of it will crush me to the ground.’ Later that day he says, ‘I learn from every call I do. I have never done a perfect call.’

I guess I instinctively warm to people who aren’t puffed up by their own importance. And most of the people I know who have achieved great things are like that, in my experience. They don’t need to trumpet their prowess; their lives and achievements speak for them. And they’ve had the courage to learn through their mistakes.

Because, of course, very few successful people were born with a silver spoon. They’ve just not allowed failure to daunt them. I think I feel another blog coming on on that subject …

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Small cogs and big decisions

Atul Gawande is a gifted surgeon and best selling author. No ordinary man, you might think. Better: A Surgeon's Notes on PerformanceAnd yet, in his book, Better: A Surgeon’s Notes on Performance, he concludes that his place in the world, like everyone else’s, is inevitably small. Compared with the people who plan and execute the eradication of polio from southern India, or who operate on and invent new techniques for saving the lives of soldiers on the frontline of wars, or who revolutionise the practical care of patients with cystic fibrosis, he feels his role as a narrow specialist in a well-equipped American hospital shrinks to miniscule proportions. A replaceable white-coated cog in a huge unstoppable machine.

But he doesn’t wallow in self-pity for his bit-part in this play. No, he recommends becoming a positive deviant. You can read about his five positive suggestions for making a worthy difference in Better. They can challenge everyone, not just doctors. I was reading his book on a train at the weekend and I even applied his ideas to my attitude to fellow-travellers.

One of the five suggestions is Ask an unscripted question. That took my thoughts winging back to a TV documentary I saw on 13 July: Between Life and Death. Severely injured in a motorbike accident, 43 year old Richard Rudd is lying immobile in a hospital bed, wired and tubed, comatose and totally dependent. The family know his clear, recently-expressed wish was, in these precise circumstances, to be allowed to die. They’re ready to have the machines switched off.

But then … someone observes that Richard can move his eyes in response to a question. They check. They check again. It’s a consistent response. Evidence that he can now hear. He can understand. He can communicate. But he still can’t do anything else. Nor is there any prospect of recovery.

It falls to the professor heading the medical team to ask the unscripted question: ‘Do you want us to continue with your treatment? If you do, move your eyes to the left. If you don’t, move them to the right.’ After a few seconds of heart-stopping suspense, the eyes shift to the left. At the time I didn’t know whether to feel elated or deflated.

What does this say about the place of advanced directives or instructions to next-of-kin? I’ve documented mine. I’ve signed papers on behalf of my mother, too. Are these wishes null and void? I’ve given it a lot of thought since that programme, and the newspaper articles that followed it. And I’ve concluded that no, in my case, my documented wishes emphatically stand. If I ever get to a stage where all I can move are my eyes, that is not the real me. Please ignore any contradictory instruction I may appear to give in such a circumstance. Better still, don’t ask the question!

I’m with Richard’s mother: ‘You wouldn’t be human if you didn’t wonder if he wouldn’t have been better off dead.’ For myself, I don’t wonder. I know. I don’t fear being dead; I do fear the process of dying. There, my hand is declared. And that’s despite a sobering personal experience I had when my first child was three weeks old.

He collapsed at home and was rushed to hospital, moribund. The paediatrician said there was no possibility of his survival. But two days later he was still alive. Now the consultant said there was no possibility that he would be either mentally or physically normal. He showed me the test results; I knew he was right. I still remember earnestly praying that if this was the case my little boy would just die with dignity now. He didn’t. With or without dignity.

Back then parents weren’t consulted. Just as well really, because if I’d had my way our family would have missed out on thirty nine years of a wonderful son, brother, husband, father, who is perfectly normal in every way – oh, except that he has chosen tax as his career. You have to have a kink somewhere to do that, don’t you? But he would definitely, emphatically, indisputably not be better off dead. If I were ever in danger of acquiring an inflated sense of my own importance, this experience of my fallibility alone would reduce me to size.

But hold your horses … that doesn’t give anyone permission to override my documented instructions! I may be infinitely small in the big scheme of things but I can still make my own big decisions, thank you very much.

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