This is the best book about dying and death in twenty years – not least in terms of its widespread publicity and public impact – since ‘The Tibetan Book of Living and Dying’ by Sogyal Rimpoche.
The way we die has always been connected to the way we live. And so it is now. 200 years ago, in the Western world, most people didn’t make it to what we now call mid-life, the average life expectancy was 31. In 1900 it was 48 for men and 52 for women. It’s now common to live into our 80’s, or even our 90’s, and beyond. The fact that so many people are living long, but are also spending years being frail and dependent, is changing the way we die. Here, at last, is a book about the inescapable thread of that from a man who knows how to be a change-maker.
The first half of the book is about how we now age. As well as the physiology of this (teeth, thumb muscles, feet and so on) he goes into the medical and institutional advances of the post WW2 period such as the invention of pace-makers, the development of emergency services and the explosion of hospitals. Gawande’s focus though is on the rise of the nursing home, a medical story with emphasis on protection and safety rather than allowing people to live until they die. One woman he talked to “felt like she was…in prison for being old”.
It doesn’t have to be like this and Gawande pleas for some imagination, citing several pioneering retirement communities (check out www.pioneernetwork.net). My favourite story is about the Chase Memorial Nursing Home and the revolution instigated by its new 31 year old Medical Director. Bill Thomas risked glorious pandemonium by introducing two dogs, four cats, 100 parakeets, real plants and inviting the staff ‘s kids in to play. Mutes began talking again, drug costs fell to 38% and deaths fell by 15%.
It’s all relative. On a to trip to see his 112 year old grandfather in India – whose life and death is another extraordinary story – he also visits a charity looking after 100 people in New Delhi. This is a place reminiscent of the unregulated and often squalid almshouses in the West that were the fate of the old and dying without family before the arrival of the welfare system. He sings the praises of the man who started this facility (and finds half of its residents on the streets), but it was also “as close to a vision of hell as I’ve ever experienced”.
The second half of the book concerns palliative care and dying with grace; with chapter titles such as ‘Letting Go’ and ‘Courage’. Gawande was advising Bill Clinton on health policy when he was 24. He’s now a surgeon based in Boston, a professor at Harvard and writes for the New Yorker. One of his previous books, The Checklist Manifesto, has helped save many lives. He writes not only with authority but also with rare and welcome candour about how inadequately prepared most doctors are for dealing with their patient’s mortality, and about the limits and failure of medicine.
Again and again on my ‘Death and the only beauty that lasts’ workshops we return to the importance of communication (and people leave feeling more confident of doing that). Gawande devotes a whole chapter to this called ‘Hard Conversations’. He argues that preparing, as a doctor, for a family meeting, requires as much preparation as performing surgery. He also understands that no one conversation can deal with everything. “Arriving at an acceptance of one’s mortality and a clear understanding of the limits and possibilities of medicine is a process, not an ephinany.”
He tells it how it is: “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they need.” He’s not pretending to be an all-knowing God-doctor and struggles with the ‘advances’ of medicine: ““Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word ‘dying’ meant anymore.”” He’s also writing as a son who finally asks his father “How much are you willing to go through in order to live a little longer?”
This is a book by an American about the American experience (with a trip to India). There are clear differences with the UK experience, notably in our healthcare systems (though some would argue that gap is closing due to changes in both countries). Atul Gawande writes “We’ve begun rejecting the institutionalised version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase.” Seems to me that we’re in the same place here. This is a relevant and hugely helpful book for us too.
In fact, it’s publication is perfect timing for May’s General Election. In December, Atul Gawande delivered the 2014 Reith Lectures and was all over the UK media like a rash during the festive season. An ad in the Guardian declared Being Mortal to be Barack Obama’s xmas reading. Don’t only read it yourself (and talk about it) – send a copy to your MP, recommend it to your election candidates. And then pin them down! We need sustainable, long-term and imaginative solutions to the inevitable. Don’t let them be an ostrich.
This book is full of medical revelation and truth, helpful history, some amazing statistics, wonderful, often poignant, stories and raises many vital issues in an accessible way. He’s written it, he says, to better understand how we ended up in the position we’re in. It’s not only a great read. This book can help us change the culture of aging and dying in the 21st Century.
Atul Gawande is on lots of You Tube’s. Here’s a great twenty min interview with the Director of ehospice: https://www.youtube.com/watch?v=hJOz0vouZro