and What Matters in the End
I was deep in the pre-Christmas desk-tidy when I found a slip of paper where I'd written these wise words. “I'm a children's author and I deal with good and bad and is there such a thing as innate evil.”
I'm ashamed to say that I can't remember who said or wrote this, though I can think of a whole list of likely candidates. I'm also a children's author and I've been surprised to discover how frequently I deal with death -- as well as good and bad and the springs of evil. Not just death as the convenient bumping-off of villains but the deaths of characters who, as an author, I have come to love; deaths that make me cry. This is one of the uses of fiction, enabling us to practise facing the harshest facts of life, yet still with the ability to shut the book and run outside to play.
Death is not something that most of us see very frequently in this country, whether we are children or adults. Our life expectancy is longer, our healthcare aspirations higher. Death happens, as inevitably as ever, but increasingly it's something that happens off-stage. With the recent death of right-to-die campaigner, Debbie Purdy, and the End of Life (Assistance) Bill going through the Scottish Parliament, 2015 may be a year that we collectively think more deeply about mortality and end-of-life care. So I hope that you will forgive the fact that this first review of the new year is not of a story for young people but a non-fiction work whose subject affects us all.
Atul Gawande is a surgeon. He lives and works in Massachusetts, keeps in close touch with his family roots in India (where he is running a large research and teaching project) and was the BBC Radio 4 Reith lecturer in December 2014. The four Reith Lectures were titled “Why do Doctors Fail?”, “The Century of the System”, “The Problem of Hubris” and “The Idea of Well-Being”. All are available to listen to on-line or print out for free – so why did I buy a half-dozen copies of this hardback book to give family and friends for Christmas?
The answer's obvious. Being Mortal has a range and a coherence, a steady development of argument that's simply not possible in a lecture series where only individual facets of an issue can be reflected. Gawande begins with the long life and traditional old age care of his grandfather Sitaram Gawande, a farmer in a small village 300 miles inland from Mumbai, who rode round his fields every day until he died – at the age of 109. It was not that Sitaram was extraordinarily physically adept. He would have failed most of the eight “Activities of Daily Living” that an American health care professional would have used to assess his ability to live independently and he would therefore have been consigned to a nursing home. But living as the most senior member of a large extended family he was never even required to tie his own shoe laces.
Atul Gawande writes with undisguised dislike of the dreary, regimented, infantilising old people's 'Homes' that are nothing of the sort, and with respect for the foundation of the Assisted Living Movement. These are US examples of course but it's simple enough to make the connections to UK institutions. Again and again he gives examples of actual older people he knows and their struggles to find the right circumstances to enable them to live good lives into old age. He doesn't romanticise the traditional family living that served his grandfather so well. He knows that this is not possible or wanted any more, yet he is certain that there must there must be ways in which people can continue to exercise some choice over the way they live – right until the end.
As a cancer surgeon Gawande is only too aware of the part played by illness in closing down life's possibilities. It is this that troubles him most of all – too many people now die in hospital, too many extensive, painful – and ultimately unnecessary – operations are allowed to blight the last days of life. Should doctors continue to play god – deciding what can be done within the vast possibilities of modern medicine and forging ahead to do it? Should they step back and offer information about all options, however unlikely and experimental, then expect the patient to make an unaided decision? Or could the consultation be something more holistic? Gawande aspires to a role where he is able to warn someone that they are coming towards the end then ask them what they want from their final days. As a doctor he can then either go for the big operation or for something simpler and temporarily alleviating, before using the resources of the hospice system to make the last wishes happen – ideally in the person's home.
Being Mortal is an expert's reflection on life, rather than death -- making sure that life continues to be satisfying and individual for as long as it lasts. I shall certainly be reading it again in 2015.
(My particular interest in matters related to age is that I'm currently campaigning with my friend Nicci Gerrard for the rights of carers of dementia patients to remain with them in hospital. It's called John's Campaign, after Nicci's father. Do find us on Facebook or twitter or visit our website www.johnscampaign.org.uk )
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