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Book review: Being Mortal: Illness, Medicine and What Matters in the End by Atul Gawande 2015

This book stopped me in my tracks.  It is a closely argued, passionate, moving and powerful book, addressing uncomfortable issues that affect all of us.

 Dr Gawande starts with looking at ageing, and how old age is a relatively new phenomena.   It is only in the last 50 years that large numbers of people in western societies have started living into their 80’s and beyond.   I remember learning about the age pyramid:  lots of children at the bottom and then tailing off to just a very few people at the top.  But in western societies we no longer have a pyramid, because people don’t die young very much any more, so we have something approaching a rectangle.

This change is happening across the world, as societies become more wealthy.  Gawande reflects on the role of the extended family, which it is easy to idolise as a perfect solution: and how this is really dependent on there being very few old people to look after and revere.  But this system is challenged when there are lots of old people, and proportionately fewer children to look after them.

Medical advances mean that we now expect to be cured of any life threatening disease.  He points out that this is relatively new (certainly in western society) but documents how pervasive this belief is. This ability to keep ourselves alive means that the majority of us are living far longer than before, and expect to live full and independent lives.  Our mortality and the effects of ageing therefore catch us unawares.

The central section of the book considers how we can retain meaning in our lives when we get to the stage where we need assistance and care.  Through a series of case studies he describes ways that individuals have set out to provide alternatives to institutionalised nursing and “old peoples homes”.  Conventional institutions are great at keeping people alive, but what for?  He looks at approaches that have allowed people to stay in their own homes, providing support on an outreach basis, that have brought institutions (and their residents) to life by bringing in birds, animals and children, and nursing care that has stood convention on its head by allowing residents to lock their doors, have their own kitchens, and go for solitary walks when they wish to (or even have sex).  I found this section fascinating, inspiring at what a few individuals could do, and the challenge to the dominance of keeping people safe rather than happy.  As all the examples are from the US I was intrigued to know whether these initiatives were also happening in the UK.  His enthusiasm for understanding older people is infectious, and I found myself wondering what I needed to learn to be more useful to this ever increasing group of people.  Which of course, will, at some stage, include me.

He then addresses the issue of mortality itself, and the tendency, in the US at least, to avoid talking about a person’s imminent death. His stories describe people continuing with complex medical interventions, even if they had little chance of success, and in actually shortened people’s lives rather than extended them.  Many years ago I remember being shocked that surgeons had amputated my grandmothers leg as she lay dying in hospital. Fortunately she wasn’t aware of it, but I wondered why.  Why could she not be allowed to live her last few days in relative peace?  

He contrasts the medical approach (including his own) with that of the hospice teams, who aren’t afraid to talk about death, but instead talk about life. 

What do you most need right now?

 What do you fear most? 

What is important to you, and what would make a good day for you?” 

His stories show how this approach helps to relieve people’s fears, to focus on what is most important to them, achieve what they absolutely need to  (e.g. attending a wedding) and give them space to die.  Interestingly, he cites statistics that show that people choosing a hospice approach rather than further medical intervention often live longer, quite possibly because they have taken back control of their lives, and crucially, worked within their reality of what is possible at that moment, for that day.

The final chapter describes his own father’s aging and death and his struggles with this, as the notions of mortality move from the beautifully written stories about other people to the deeply personal.  This transition took me on a similar and uncomfortable journey.  Reading the initial chapters about aging, and retaining dignity and choice helped me to understand some of the issues around my father’s situation, and seemed very positive, and also reasonably distant and manageable.  The final chapter however reminds us that death will come for all of us, to those we love most in the world, to ourselves, and it may not come when we want it to. 

The book ends on a sombre note, but it is also deeply alive.  More than anything this is a book encouraging us to ask questions, to find out what is important to people and to find ways to support them, and above all to remember that we are human.  And being human involves being born, living a finite life, and then dying, and all parts are important.


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