The “100% Certainty Project” – Let’s Start Talking About End of Life

“Nothing’s certain but death and taxes.” And tax advice, it seems, is everywhere we turn, whether through the media or via an army of advisors and accountants. But what about death?

There’s not much advice on how to die well. In fact, there’s hardly any information or conversation about it at all. The practicalities are mysterious enough: Will there be pain, indignity, and loss of autonomy? Home, hospice or hospital, assuming I get a choice? How will my family cope? And then there’s the hard work of making meaning out of something that feels like the end of all meaning. No wonder we fix our attention firmly on the details and the big questions of life rather than death!

Much of this social denial is an unintended consequence of our medical expertise. When so much treatment is possible, and so much specialized knowledge is offered, it’s easy to let the professionals take over. A 2018 study by the Institute of Clinical Evaluation Sciences found that though most Ontarians would prefer to die at home, death too often happens in hospitals or long-term care homes after every possible treatment “fails,” rather than at home in quiet dignity as the last meaningful event in a significant life.

The 100% Certainty Project aims to change that in the Hamilton and Halton region. Representatives from the local palliative care centre, funeral homes, hospices and bookstores choose four or five new books every year where dying plays a central role as plot device or central topic. By promoting the books through author readings and other events, we hope to encourage the grassroots conversations that will lead to creating the social fabric we will all need at the end of life.

Over the next few months, I’ll introduce you, through brief reviews, to the five books on this year’s list. I’ll also alert you to a few events here in Halton related to the topics that these books explore so creatively. I hope this will help you have the essential conversations about your own journey towards death with your friends and family.

In the meantime, you can get acquainted with The 100% Certainty Project at www.talkaboutdeath.ca. Let’s start talking about that final taboo.

Burlington resident Janet Gadeski is a former board member of The Carpenter Hospice. An avid reader, she represents the Hospice on The 100% Certainty Project’s working group.

Please find the first of these book reviews below:

“The End of Your Life Book Club”  (Will Schwalbe, Knopf, 2012),

DEATH APPROACHES, YET MEANINGFUL LIFE GOES ON

Perhaps the most vital message as death draws near is that life goes on. It’s an outlook that transforms the end-of-life journey for both patient and loved ones. And it’s the foundation of the worldwide palliative care movement. In the words of Burlington’s Carpenter Hospice, it means “Making Moments Matter” right to the end of life.

The main characters in The End of Your Life Book Club (Will Schwalbe, Knopf, 2012), made moments matter, in part, through a shared love of books. Mary Anne Schwalbe was diagnosed with advanced pancreatic cancer at the age of 73. She and her son Will were avid readers. It was natural for each to bring a book to Mary Anne’s appointments, and share favorite passages during the long waits.

Soon they realized that they had a “book club of two.” At first, they held meetings in the chemotherapy suite during Mary Anne’s treatments. When her cancer could no longer be held back, they met at her bedside. Each book they discussed led them to learn more about each other’s hearts and minds, and become more able to talk about the imminent end of Mary Anne’s life.

Mary Anne’s achievements as the respected Director of Admissions at Harvard, successful international volunteer and fundraiser, and award-winning humanitarian built a lasting legacy in the US and abroad. Yet for Will, the insights revealed in their discussions of books became a more intimate legacy. Whether they read novels, biography, philosophy or religion, they challenged one another, laughed and cried together, and travelled towards new destinations (end-of-life for Mary Anne, a more authentic life for Will).

Mary Anne and Will show us how books can help build deeper connections with those we love and perhaps face losing. I imagine that almost any book could provoke some kind of shared response – whether a soul-baring discussion, an intellectually provoking debate, a hearty laugh, or just a joint eye-roll. But if you would like to check their list in the hope of starting your own book club of two, you’ll find it at End of Your Life Book Club reading list.