Hazel McHaffie

quality of life

Everything that Makes us Human

I rather think the book I’m going to talk about today will always have a special significance to me. I began reading it on the last morning of my sister’s life. For the previous two days and nights my whole concentration had been on her needs, being there for her, but on that last morning she was perfectly at peace, breathing shallowly but evenly. I could finally relax and just be alongside her – so relaxed about her indeed that I reached for something to do. This book was in my bag. I didn’t get far, but it will always have that association. And it turned out to be entirely the right book for the moment.

The book? Everything that Makes us Human: Case Notes of a Children’s Brain Surgeon by Jay Jayamohan, a paediatric neurosurgeon.
He operates on children who have strokes (amongst other things, of course); my sister’s stroke was not amenable to treatment.
He has a huge respect for that which makes a person human; she had true humanity in spades.
He is a remarkable person; so was she.

Operating on brains and spinal cords is as scary as it comes, but doing so on babies and children is beyond my imagination. The stakes couldn’t be higher.
With each clean strike I inwardly breathe a sigh of relief. But if anything it only piles on the pressure. Each next movement seems to carry more danger, the greater likelihood of an accident.

Simply reading about some of the cases Dr Jay describes, produces tension in my jaw and shoulders! Navigating a way through bone to the centre of a child’s being, risking paralysis, loss of cognition, death, for a ‘tiny mite’ so small her total blood volume equates to a small glass of wine, he’s afraid to even move his head to look at a scan … how do you ever dare to try? Talking to his child-patients, informing their parents, coping with disappointment and guilt … it takes a level of courage and confidence way beyond most of us mere mortals. Some children need multiple operations over years and years, and each must be meticulously planned so as not to screw up the prospect for later procedures. Hugely impressive stuff. But this frank and honest book underlines the human frailty of every surgeon: as he says, every ‘failure’ keeps you grounded.

He is hugely sensitive to the pain of the whole family.
Left to my own devices, I could wallow in the hell that is explaining [the tragic options available] … But I need to remember that whatever anguish I’m feeling is nothing – nada – zero – zilch – compared to the turmoil I’m about to inflict on two unsuspecting people.

I won’t lie to them, I won’t sugar-coat the truth. I will, however, go out of my way to deliver it with the softest of velvet gloves at precisely the optimal time.

He’s ‘a little bit broken himself with each telling of bad news. And when he was forced to override a father’s determination to keep his ten-year-old son alive at all costs, he felt it keenly:
… this poor man was in probably the worst place anyone could be. About to lose a child. I see it all the time, but it never gets easier. It never stops piercing my attempts to protect myself from my work, like tiny little stab wounds that will no doubt eventually do me in. I am laid bare every time I have the conversation. In fact, I’m not ashamed to say that I have wept while correcting this chapter, just remembering this man.
What humanity!

He’s acutely aware of the finely nuanced choices that must sometimes be made. Especially when it comes to deciding when enough is enough.
There’s no point in saving a child’s life if she has no life worth living afterwards.
(Precisely what I protested on behalf of my sister.)

Would the patient prefer five years of a quality, ‘normal’ life, knowing there’s a clock counting down somewhere, or would you rather have decades longer but with severe impairment?
(Ditto)

Would the parents prefer me to try to remedy this situation with all the risks and uncertainty that entails, or would they prefer to have precious time with their child as he is, knowing that time will be short?
Questions very much in my territory.

What’s more, this skilled surgeon cares not only for medical success, but aesthetic results. He wants the patient ‘to be able to walk around a supermarket and hold her head up’ – the so-called ‘Tesco test’. He wants them all to be well-adjusted happy people irrespective of the time they have left.

As if this weren’t enough to bear, this remarkable man has taken a keen interest in another phenomenon that few of us would choose to tackle: domestic abuse. When a child presents with serious head trauma and the history simply doesn’t add up, his antennae quiver. He isn’t always right, and he acknowledges that. Over time he’s learned both patience and caution; it’s a massive responsibility to remove a child from their parents. Some neurological disorders can mimic abuse. It’s so easy for us amateur armchair critics to malign the social services for neglecting to heed warning signs, but everyone can be more certain with hindsight. As Dr Jay’s mentor told him: It’s not a world to enter lightly’.

Perhaps unsurprisingly Dr Jay does medico-legal work too. He’s called in as a medical expert witness – a neurosurgical one, and there aren’t many of them about! But he’s exactly the kind of expert I’d want on my side, fighting for my cause. Indeed I’d have liked a Dr Jay-look-alike around when I was fighting for my sister’s best interests, just as he fought for some of the babies in his care. (There’s a particularly moving case in Chapter 16 where devoutly religious parents challenged him deeply.) Simply knowing other families have had that reassurance was a comfort to me.

It’s an inspirational story, and there’s a compelling immediacy in the reporting of cases. I loved the clever way each chapter segues neatly into the next. And I felt deeply grateful for people like this who put themselves on the line for others; who truly understand what’s important in life.

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On the receiving end

Hmmm. And I thought I was clued in to other people’s viewpoints and pretty empathetic. After all, I’ve spend years actively listening and trying to understand how they tick, in my professional as well as personal life. Shame on me. But … hey ho, I guess one is never too old to learn.

It’s fifty plus years since I began my working days in the NHS, and here I am in 2017 still following medical advances and thinking about modern challenges all these decades later. But lately I’ve been seeing things from a very different perspective; my eyes have been opened to a different kind of reality.

In June I was diagnosed with a malignant tumour. It was surgically removed within 24 hours, but last week I was back in hospital again for second-stage surgery. My care throughout has been exemplary – efficiency, kindness, courtesy, skill, compassion, they all seem to be drip-fed at all levels.  Goodness, I even had a reply from the Medical Director thanking me for my letter of appreciation! Way beyond the call of duty.

But one practice in particular has struck me forcibly. in ‘my day’ the medical team told patients what was in their best interests; today recipients of care are consulted and encouraged to share the decision making. My dentist takes this approach and, knowing nothing whatever about dentistry, I confess I struggle with the responsibility sometimes. I want to say, ‘I don’t know – you tell me!’ When it comes to my physical health I’m a lot more confident; my background and knowledge stand me in good stead. But I do wonder if all this choice and shared decision-making isn’t rather bewildering for the average ordinary Joe Bloggs. How do they know what’s best? Have they ever thought about mortality/morbidity statistics, or quality of life issues, or palliative versus aggressive care?

My novels are designed to help people get inside the skin of those faced with extremely difficult challenges, to increase empathy and understanding, to help formulate sound reasoning. But maybe there’s a case for exploring the more mundane and less dramatic/harrowing situations which people are facing every day. It has taken my own brush with cancer to open my eyes to the impact of this common reality. Just shows you.

Report card reads: Could do better.

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