I have loved the BBC Reith Lectures since I first listened to Edmund Leach in 1967, talking about: ‘A runaway world’. I follow them on Radio 4 every year much as I follow Desert Island Discs every week.
Imagine my delight therefore a few weeks ago when I gathered with a packed audience at The Royal Society of Edinburgh for the recording of Atul Gawande’s third lecture in his series on ‘The future of medicine’.
The lecture is called ‘The problem of hubris’. It is an extended account of one person’s experience of hospice care in the USA. Gawande, the master storyteller, introduces us to his daughter’s piano teacher, Peg.
We learn of Peg’s struggles with advanced illness and its treatment, her painful decision to ‘transition to hospice’ – and the benefits that flowed in the weeks that followed.
On the night, the discussion afterwards was as good as the lecture. Peg’s story was contextualised in what we know about the reach of hospice in America, but also the limits of its funding model, the tensions between the hospice approach and the wider concept of palliative care – and the thorny topic of assisted dying.
It is not uncommon to refer to the United States as the most ‘death denying’ culture in the world. As one wag observed: ‘Americans don’t die, they just under achieve’.
Certainly the USA spends unprecedented amounts on healthcare in the last year of life – apparently in search of life extension – but often it seems as if prolonged suffering is the only outcome.
The United States has constructed a medical system unable to engage with human mortality, and fostered a consumer orientation to care in which patients and families generate unachievable expectations of what health care can deliver and appear willing to trade significant dis-benefits and ‘side effects’ for the promise of even days or weeks of extra life.
When it comes to the longer term needs of older people, the system is in a fix. It can’t train enough geriatricians, has de-valued the role of family practitioners, and has a patchy record in how to establish appropriate shared, continuing and nursing home care.
Around two million Americans die every year and most deaths continue to be seen as someone’s fault or a failure of medicine.
Slowly, however, Americans are waking up to that fact that something must be done.
Atul Gawande’s recent book: ‘Being Mortal – Illness, Medicine and What Matters in the End’ and his accompanying BBC Reith Lectures are the latest, compelling analysis of what is happening and what can be done about it.
Gawande is a surgeon at the Brigham Young Women’s Hospital in Boston. He is also a health policy and public health analyst. He read PPE at Oxford before embarking on medical training in the USA.
He has been an advisor to Bill Clinton and is preoccupied by the complexities, challenges and dilemmas of modern medicine and brings a clear-eyed perspective to the innovations that will be required to improve things – not just in his home country, but globally.
Above all, Atul Gawande is a writer and story teller. He takes us into the life worlds of his patients, colleagues and family members in ways that engage the head and the heart.
He is on a mission to disrupt our thinking – and to reach a wide audience in doing so. He is doing this with conviction and skill and in the process is reaching a large public audience in his writing about mortality, dying and death.
Gawande deals with these topics superbly. His book is packed with stories about patients and families and full of pithily memorable observations. Here are just a few that stood out for me:
- “People live longer and better than at any other time in history. But scientific advances have turned the process of ageing and dying into medical experiences, matters to managed by healthcare professionals. And we in the medical world have proved alarmingly unprepared for it” (p6).
- “We want autonomy for ourselves and safety for those we love” (p106) – on family members attitude to elderly relatives and their care in nursing homes.
- “…the Three Plagues of nursing home existence; boredom, loneliness and helplessness” (p116).
- “And curiously, for some conditions, hospice care seemed to extend survival… The lesson seems almost Zen: you live longer only when you stop trying to live longer” (p178).
- “Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?” (p259).
The evidence base on all this advances only slowly. Gawande draws on it with a deft and light touch. More importantly he brings it to life through a depth of perception and a warmth of humanity that no one can ignore.
Read the book, listen to the lectures. For everyone concerned about care at the end of life, they must surely be the highpoint of 2014. And the BBC should get Gawande back for Desert Island Discs too!
Gawande, A (2014) Being Mortal: Illness, medicine and what matters in the end. London; Profile Books in association with Wellcome Collection.
Read a longer version of this piece on David Clark’s University of Glasgow End of Life Studies blog.