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 America spends unprecedented amounts on health care in the last year of life – apparently in search of life extension, but often it seems with only prolonged suffering as the outcome. It 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 just days or weeks of extra life. When it comes to the longer term needs of older people it 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.
Being Mortal and its antecedents
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 with end of life care 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. He 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 also globally. Above all, he 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.
This work has a history. I trace it back almost 50 years. Atul Gawande is reaching a large public audience in his writing about mortality, dying and death. Just as the psychiatrist Elizabeth Kubler Ross did, from the Billings Hospital in Chicago where she started working in 1965 and from where in 1969, she published her book On Death and Dying. As Allan Kellehear and others have pointed out, the work is most important for its original subtitle – What the dying have to teach doctors, nurses, clergy, and their own families. Like Being Mortal, Kubler Ross’s book quickly became a best seller. Over time it was followed by other ‘popular’ books on the failings of American medicine in the face of human mortality.The surgeon Sherwin Nuland’s How We Die: Reflections on Life’s Final Chapter (1992) was a New York Times Best Seller, won the National Book Award for Nonfiction and was shortlisted for the Pulitzer Prize. Ten years later Canadian physician David Kuhl’s What Dying People Want (2002) took him onto the Oprah Winfrey Show and out to a wide audience with a work based on conversations and interviews with dying people and their families. He followed it in 2006 with Facing Death, Embracing Life. And over the years the well-known palliative care doctor Ira Byock has reached a large readership with works such as Dying Well (1997), The Four Things That Matter Most (2004) and The Best Care Possible (2012). These ‘trade’ books on end of life issues have sold in quantities that most academic authors and their publishers can only dream about.
Yet it is a genre (I think) completely absent from other parts of the Anglo-Saxon world. Cicely Saunders wrote widely on these topics but aside from the occasional newspaper article, she never found a popular audience. None of the current crop of British palliative care doctors has reached out to engage with the public in the fashion of their North American counterparts. I have been unable to think of any book by a British writer that sits in this tradition, started so powerfully by Elizabeth Kubler Ross, in 1969. British medicine seems to have failed to produce a wider thought leader concerned about the broad perspective on ageing, mortality and care at the end of life – and public debate in Britain is the poorer for it.
Gawande deals with these topics superbly. His book is packed with stories about patients and families and full of pithily memorable observations. Here are 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 health care professionals. And we in the medical world have proved alarmingly unprepared for it’, (p6)
‘For many such talk , however carefully framed, raises the spectre of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are already being sacrificed … and what if there are better approaches right in front of our eyes, waiting to be recognised?’ (p10)
‘We want autonomy for ourselves and safety for those we love’ (p106) – on family members’ attitudes to elderly relatives. ‘A medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about’. (109) – on nursing homes.
‘I was confusing care with treatment’ (p112)
‘ … the Three Plagues of nursing home existence; boredom, loneliness and helplessness’. (p116)
‘The question therefore is not how we can afford this system’s expense. It is how we can afford a health care system that will actually help people achieve what’s most important to them at the end of their lives’. (p155)
‘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)
Translate these last four questions out of baby-boomer talk and into your own vernacular. They are pertinent, telling and enormously consequential for individualised care at the end of life.
The Reith Lectures 2014
I have loved the 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 on Radio 4 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 Reith Lecture 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.
That night in Edinburgh, the discussion afterwards was as good as the lecture itself. The story of Peg 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. No matter that Atul Gawande is only now echoing the thesis set out by Ivan Illich almost 40 years ago. That we have lost the capacity to accept death and suffering as meaningful aspects of life; that there is a sense of being in a state of “total war” against death at all stages of the life cycle; that there has been a crippling of personal and family care, and a devaluing of traditional rituals surrounding dying and death; and that a form of social control exists in which a rejection of “patienthood” by dying or bereaved people is labelled as deviance. Gawande revisits all of this and puts it firmly in today’s context of ageing and our struggles to provide dignified care at the end of life.
The evidence base such matters advances only slowly – painfully so. Gawande draws on the evidence 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.
Illich, I (1976) Limits to Medicine; Medical nemesis: the expropriation of health. London: Marion Boyars.