James Barker's Reviews > Being Mortal: Medicine and What Matters in the End

It is commonly phrased that we battle illness. But this remarkable book by Atul Gawande points out that it is an ill-thought battle and, dare I say it, an ill-fought one.

For the last three years of my wonderful mother’s life I was her carer. Coping with the advanced stages of multiple sclerosis she was mostly restricted to her bed (which was in fact a hospital bed delivered to our family home along with all the other paraphernalia of sickness), permanently catheterised, unable to walk or do anything for herself. Mom also had severe dementia and often mistook me for my recently-deceased Dad.

As an immersive carer I managed a team of women who assisted me in the day with my mother’s personal care. The rest of the time I sat with her, or fed her, or tried to unblock her catheter (while going out of my mind), or sang with her. Naturally, the last activity was the most enjoyable. Despite her dementia, Mom had a seemingly inexhaustible trove of perfectly-remembered lyrics in her head. We sang Doris Day songs, the Bellamy Brothers, the Beautiful South, the Beatles, Tori Amos, the Hollies, Cyndi Lauper, the Mama and Papas, Simon and Garfunkel, ABBA, songs from musicals. Even new songs she had only heard once we tackled together. Somehow she remembered these lyrics too.

But 16 months before Mom passed away she developed septicaemia and was rushed into hospital. Her organs were shutting down, her pulse was weak and fading fast. We were told her quality of life was so bad, her disability so extreme, that the hospital was to offer no treatment- it would be kinder to let her go.

We didn’t. I won’t go into the whys and wherefores of that decision but at least one of my sisters- who had driven in terror the 150 miles from where she lived- thought that letting go would be an idea we should not entertain and I wavered, full of love for this extraordinary woman who had been the life and soul of any party when I was growing up, rock and rolling on the dance floor, full of fast wit and laughter that was infectious in its affirmation of life. The doctor in charge asked me for one piece of evidence that suggested my mother had any quality of life at all. We sing every day- we sing together all the time, I said. So he treated her and somehow, over 7 long and painful weeks, she became well enough to be sent back home and into my care.

But what did this ‘well enough’ mean?

Mom was no longer capable of swallowing so had had a peg inserted into her stomach. I was trained in the art of its upkeep- everyday the wound needed to be cleaned and the peg rotated 360 degrees (otherwise it would fuse to her skin). Any strength Mom had had in her arms had gone. To all intents and purposes she was incapable of moving anything but her head (a fraction), her eyes and mouth. But by and large Mom slept, in a virtual coma that meant our daily songs felt like a golden time remembered and grieved from the perspective of a new time of horrors. Three days after returning home and in a fever caused by kidney stones that were trying to be passed (another tier of Hell) Mom whispered to me, “I have had enough.”

But of course it didn’t end there. Mom stayed in a limbo of pain and half-consciousness for well over another year. She would emit blood-curdling screams when being cleaned, when being moved, but she did not sing. Fed a noxious mixture through a machine, one of the few joys she had had left (sucking on a piece of chocolate or enjoying slow mouthfuls of a home-cooked dinner) had gone. It struck me sitting beside her that we had consigned her to an exit that was barbarous and devoid of love. All I could do was ensure she was as comfortable as possible and that, on the occasions she was awake, she could see that I was there, smiling at her and telling her I loved her more than the world.

When the end time came we were told on three separate occasions that today was the day. But a little woman of 5’2”, ranked a Zero by hospital doctors when her ability was assessed, she defied every professional speculation and breathed on another day, then another, then another. When she died in November 2012, a few weeks shy of her 68th birthday, I have truly never seen such peace on a face.
In the last year of her life Mom had been well enough on a handful of occasions to wake and smile at me and sing with me. One of these occasions I captured on video. We sit together, smiling, singing ‘Zip A Dee Doo Dah,’ (my oh my what a wonderful day) and she tells me she loves me. An exquisite moment that I am glad I captured. But was it really worth the 16 months of Hell she went through?

Atul Gawande’s book is all about acceptance of our mortality. But it is about much more than that. Modern medicine has it wrong, he says. It is about preserving life at all costs- battle for a year through procedure after procedure rather than enjoy your remaining months of life at the best possible quality. Yes, it turns out the emergency room where my mother ended up in 2011 made the right call and we did not. But, by and large, if you have a life-limiting prognosis with a disease such as cancer you will be offered all sorts of treatments to extend that life at the detriment of its quality.

But this is also a book about the way the elderly are treated in the industry of care homes and sheltered housing. With all meaning to life removed, with all responsibility removed, people become shells of their former selves, depressed and longing for the death that the (questionable) care they are receiving is preventing. Visionary projects from the 1970s- with more pets in care homes, with pairs of birds in every room for residents to have a vested interest in looking after, with children of staff visiting, filling the emptiness with the joy of activity, of noise- show that it is possible for care homes to be places of life rather than death. But it takes more effort to achieve this, more resources. More determination to give the elderly a life worth enjoying. And so, of course, such ideas largely fall by the wayside, because in a capitalist world the elderly are a drain on life, on resources... which is frankly sickening.

I cannot stress enough how important this book is. It was, at times, a painful read for me, and that will be the case for anyone who has lost someone in a medicalised nightmare of end-time. But you owe it to yourself to understand what best befits you when your time comes. You owe it to yourself to choose your own ending. This book arms you with the knowledge to make the right decision, however painful that is.

As for my mother.. after 3 touch and go trips to the hospital in the last year of her life I spoke to my sisters and told them it all came down to what we felt Mom would prefer- to die at home or have more and more (hopeless) treatment at hospital, where it was inevitable that one day she would happen to die. We agreed that just as my father had passed away at home, surrounded by people who loved him, our mother deserved the same. It was the best decision we made. She passed on in her home of 40 years held by those she loved and surrounded by their voices. She died in peace.