terminal illness
Life, death and empathy
It’s a trite saying: live each day as if it’s your last, but when someone is handed a diagnosis of terminal illness it can become a dramatic reality. ‘Nowness’ – the heightened immediacy of each lived moment – becomes vivid and immensely valuable. How the person is treated, and by whom, matters enormously. This is the substance of the book, Dear Life, by Dr Rachel Clarke; a story of love and loss, both a personal journey and a moving analysis of what truly counts.
People frequently question her as to why anyone would choose to immerse themselves in the world of the dying, but for her there was a kind of inevitability about her decision, because of her natural inclinations and preferences; because of who she is. So who is she?
With a doctor for father and nurse for mother, Rachel had an early introduction to the reality of death, but in her teens she was more inclined to words than science, and she elected to study Philosophy, Politics and Economics. From there she went into journalism and documentary making. It was only when perfectionism and depression led to burn-out and suicidal thoughts, that she retrained as a doctor.
It took a further five years to achieve the transformation from journalist to medic, being tempered, toughened into hard doctorly competence, during which she tiptoed through a minefield – scientific curiosity vying with human kindness; detachment learned the hard way struggling with natural empathy.
… as fledgling doctors-to-be, our role required us to stifle, not voice, our feelings and instincts.
No; emotions were illegitimate and gauche, to be ignored and denied.
She could indeed see and appreciate the sheer necessity of putting emotions on one side to survive in areas like a busy A&E department crammed to the gunnels, with patients on trolleys overflowing down corridors, exhibiting a whole range of illnesses from cradle to grave, living to dead. There was no time to forge relationships or really engage with patients; it was a matter of prioritising the critical, clearing the trivial. Efficient use of time, saving lives. But this wasn’t for her.
I wanted the opposite. I wanted to retain my kindness, my impulse to care, not have it bludgeoned out of me.The spoken word, I had come to realise, could be as delicate and important as any physical intervention, and sometimes equally life-changing. Words are a means through which doctors build trust, assuage fears, signal compassion, resolve confusion, instil hope – and on occasion, remove it. But they cannot be rushed. Above all, when your focus is people, not body parts, taking time to listen to your patient’s words – seeking truly to understand what matters to them – can have astonishing potency.
And yet, even after all those years of training, she feels ill-equipped for dealing with patients in this way. The knowledge she has acquired relates to illness; she knows precious little about the people presenting with those maladies.
I may have filled my brain to bursting with names, numbers, drugs and diagnoses, but I was taught next to nothing about the muddled, uncertain, inconsistent, illogical, forgetful, fearful, frightened, doubtful, real-life flesh-and-blood people who, just like me, inhabited a nuanced world of endlessly shifting grey, not the black-and-white certainties of my medical bookshelves.
Personal experience of medical treatment teaches her a salutary lesson. She learns what it feels like to be vulnerable and what counts – the harsh and alien world of the unwell, the scale of doctors’ demands on them, the powerlessness of patients, the sheer force of small acts of kindness, and the capacity of simple human touch to transcend primal fear. And in so doing, she acquires something vital: a means by which she can empathise with her patients. She understands what really matters. So powerful is this lesson that she would prescribe a decent dose of temporary illness for every medical student – something sufficiently grave to stoke genuine fear, involving at least a couple of distasteful procedures …!
The deaths from cancer of her mother-in-law and her own beloved father also have a profound effect on her. She learns that in the last throes of life, superlative care is crucial: medicine at its best; the patient, not the disease, centre stage; every single person an individual each with their own history and dreams, likes and preferences, opinions and beliefs; e ach with their own views on dying. And she learns the true value of being with someone, responsive to their fears and grief.
… the act of being present – not walking away from acute grief – can be the best any physician can offer.
Small wonder, then, that this remarkable woman chose palliative care, and works in a hospice, where time and efficiency have a different meaning. Where sitting holding a hand, organising a wedding, providing a beautiful view, can bring peace and solace every bit as much as drugs and interventions.
Dear Life is a remarkable book at once tender and funny, full of joy and grief, kindness and sadness, triumphant and anguished. And beautifully written – as befits a journalist who has loved language since toddler-hood! Dr Rachel Clarke is exactly the kind of doctor we should all want to take care of our nearest and dearest in the event of their becoming terminally ill. Compassionate, generous, kind and caring. Ready to fight for the very best of care. And how the NHS needs people like that!
Could I? Would I? Should I?
With all my talk of books lately you might well have forgotten that my blog is also about ethical issues. So, something a little more challenging this week.
You’ve probably heard on the news that a teenager has just become the first to be helped to die by doctors in Belgium, a country that lifted their age restrictions on assisted dying two years ago. This girl was 17 years old and terminally ill. Let’s stop and contemplate that for a moment. 17 years old … on the cusp of life. Terminally ill … a tragedy in itself. Now dead … hard to even contemplate the agony wrapped up in that reality. Sends shivers down your spine just thinking about it, doesn’t it?
Belgium legalised assisted death for adults as long ago as 2002. And in 2014 it became the only country* in the world that allows a child of any age to choose doctor-assisted death provided they have parental permission. There are strict criteria; of course there are. The minor must be terminally ill, fully and rationally understand the difference between life and death, face unbearable physical suffering that can’t be alleviated, and have made repeated requests to die. Two doctors, one of whom must be a psychiatrist, must give their approval.
(*The Netherlands permits children to have an assisted death but requires them to be aged 12 or over.)
How do you feel about this ruling?
Would you allow your child to choose to die?
But hang on a minute. Let’s not rush to judgement without properly assimilating the facts. This is not some wilful youngster throwing a hissy fit and whining about a passing ache. This is a wise-beyond-their-years person who’s known extreme and unremitting pain, who knows he/she’s not going to survive this illness. Given these circumstances, could you bear to stand by? Listening to the agonising screams? Seeing the appeal in the eyes? Watching the dying process be strung out, knowing … knowing there’s a way out, a legal option? Wouldn’t you be begging someone to do something … anything?
An opinion poll taken a few months before the law changed to allow children this choice, suggested that 75% of Belgians supported it. Understandably many churchmen, especially those of the Roman Catholic church, opposed it. OK, we know they have strong opinions and beliefs about the sanctity of life. But so too did many doctors. What does this say? They after all are the ones who care for these tragic families, make decisions about treatment, convey the bad news, feel their own powerlessness. This isn’t theoretical for them; they actually stand at those bedsides, see the agony up close and personal.
Could it be that the doctors baulk at a law that allows the life of the child to be ended actively, because they are the very people who’d be asked to actually do the deed? And they are trained to cure, not to kill. It’s so much easier for a lay person to say, ‘Oh yes, a child shouldn’t suffer unbearably; you should help them to die with dignity,’ when they know they will not be the ones called upon to inject that lethal drug.
So, maybe the question ought to be: Would you be willing to end that life yourself? And if not, is it hypocritical to approve of a law allowing assisted dying?
If so, how many of us are guilty as charged?
I’m ridiculously squeamish. I struggle to kill an insect or an arachnoid, preferring to capture them and return them to the wild. There’s something very, very special about life, especially a human life. And I’m absolutely certain I could not be actively involved in the death of a child … or … am I? Because the alternative appalls me. What right have I to insist a child endures terrible suffering? I’m not at all sure I could stand by and not do something to help if it were in my power. Maybe, just maybe, there are certain circumstances where I might feel compelled to forfeit my own comfort, my own preferences, even possibly my own principles, and put the child and his/her interests first. Whether or not I would actually do the deed is unknown. I’ve never been tested.
We haven’t come close to approving assisted dying for adults in this country yet, never mind for children. The majority of – not all – doctors and politicians oppose a change in the law. But we all ought to thoroughly consider the options and consequences nevertheless. I’m not, thank God, facing this devastating dilemma at this precise moment. You might not be. But there are too many families for whom this is no hypothetical question; this is their ongoing living nightmare. What kind of a society do we want for them?
As the late Sheila Bloom, Chief Executive of the Institute of Global Ethics once said, ‘It isn’t about knowing right from wrong – we can all do that. It’s often about choosing one right over another and finding good reasons for it.’ Or we might add, sometimes choosing the lesser of two evils.
Sobering questions for an autumnal Thursday morning, huh?
The Fault in our Stars
OK, I know everybody’s heard about this book – it’s been in the top 10 works of fiction; the film version’s had a fair old hype too. And indeed, I read it some time ago but events overtook me and I’ve only just got around to posting my blog about it.
On the face of it a love story about two terminally ill teenagers, written for teenagers, sounds as if it’ll be either mawkish or depressing. And this is no glossy utopian take on death; the narrative doesn’t shy away from the horrors of serious illness, the mundane distasteful physiological consequences as well as the more slippery psychological ones. But somehow The Fault in our Stars, in John Green‘s hands, manages to achieve a curious appeal all its own. If you go to his website and watch his video clips, you’ll see he speaks much as he writes – in a breathless rush.
Green is an established writer for young adults and he’s well able to capture the language (‘middle-school vernacular’), the thinking and priorities of teenagers, the uncertainties, the emotions, and he does so with precision and poignancy … most of the time anyway. I realise youngsters with cancer have a wisdom and maturity beyond their years, but I confess, some of the characters’ thoughts and exchanges stretched my credulity a tad at times. And yet that’s part of what the book’s about, a level of sophistication and erudition and insight that’s both profound and disturbing. I liked the combination of pathos and laugh-out-loud humour, the sensitivity balanced by mockery and wry wit – about serious issues like life, death, love, loss and grief. My kind of subjects.
The story line is simple. Sixteen-year old Hazel Grace is on borrowed time. We know from the outset she’s terminally ill with secondary deposits in her lungs after thyroid cancer. There’s no hiding her condition – she drags an oxygen cylinder behind her wherever she goes. Enter beautiful heart-throb Augustus/Gus, aged seventeen, who’s already lost a limb to osteosarcoma. Add to the mix heart-broken jilted Isaac who’s about to have his second cancerous eye surgically removed, and boy, you’re already wondering, can I take much more of this? But these teenagers aren’t sitting around feeling maudlin, no siree; indeed they have a refreshingly robust take on illness. The dialogue sparkles with raw in-house acceptance, mutual understanding and gallows humour. Their take on everything from a hand on a false knee and dubious jokes about blindness, to the ‘incessant mechanized haranguing of intensive care’, and the unnatural parting of a dead boy’s hair, is coloured by their up-close and personal experience of teetering on the edge of oblivion.
The story line might indeed be simple, but the messages beneath it are anything but. At the end of the text the author himself appends a note: This book is a work of fiction. I made it up. Neither novels nor their readers benefit from attempts to divine whether any facts hide inside a story. Such efforts attack the very idea that made-up stories can matter …
And that is certainly the point of this book: the made-up story matters. I wasn’t reduced to tears, not even nearly, but I did feel vaguely disturbed and challenged. The Fault in our Stars won’t be in my top one hundred favourites, but it was well worth reading. Next question: Should I watch the film? I’m usually loathe to see a dramatisation of a book I’ve read; the mismatch is too uncomfortable and disillusioning. I might just make an exception here.
Oh, and I bought a copy of the book for my teenage granddaughter for Christmas. That’s how much I recommend it.
Timing
It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1’s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.