August is the time to stop, recharge the batteries and catch up on some reading. That may include some light distraction, but a book that really chimes is one that reflects your ideals, teaches you something new, and sheds more light on what it is to be human. Atul Gawande’s inspiring book ‘Being Mortal: Illness, Medicine, and What Matters in the End’ does all of those things. I also find parallels with some of the aims of our own Facts4Life programme.
Gawande, Boston surgeon and writer for the New Yorker, has come to greater prominence since delivering the Reith Lectures in 2014. In this book from the same year, he explores the journey into old age, the slow decline that we work so hard to resist (and deny), the changing environment that we have created for the elderly and our relationship with the medical world. There are a number of forces at play in the developed west that have impacted on this experience of growing old: the shift from extended family to greater independence, huge technological advances in hospitals (not to mention the big business that is the pharmaceutical industry) making it possible to keep us alive for longer and also the cultural attitudes that lead us to grasp after this longevity, sometimes at the cost of the quality of life that remains.
In the first half of the book, Gawande traces the development of the nursing home, the suffocating attitudes to safety and aversion to risk that have led, and still lead, to the three great plagues of this environment: boredom, isolation and helplessness. He tells the hilarious story of a young physician from upstate New York, Bill Thomas, who, appointed as medical director to the Chase Memorial Nursing Home in 1991, somehow managed to persuade the leadership team at the home that they should address the despair he saw in every room by providing two dogs, four cats, one hundred parakeets, a colony of rabbits and a flock of laying hens. It caused all sorts of problems – how to feed the animals for instance – but the lights came back on in people’s eyes and Thomas saw the drugs cost fall to 38% of a comparison facility. Deaths fell 15%.
In the second half of the book, Gawande cuts to the chase and explores the experience of our own mortality, palliative care and the way in which the medicalisation of our lives threatens to take over the final years. At its most stark this is a pact between individual and medical system where, in Gawande’s eyes, we are happy to receive care based on our fears rather than the reality of what we can realistically hope for. We may be prepared to remain in the dark on the likelihood of the efficacy of a chosen, debilitating treatment, because it holds the promise of more time in the future rather than the quality of the time in the present.
The relationship between medic and patient is at the centre of this trade-off. The old paternalistic relationship where it is clear who has the knowledge and experience and therefore who makes the decisions has been replaced by the informative relationship – facts and figures are shared by the technical expert and the patient is the consumer who makes the decisions based on information presented. Gawande acknowledges his own difficulty in adopting a third approach, the ‘interpretive’ relationship where it is the doctor’s role to act as guide, to help patients determine what they want. This is time consuming, emotionally demanding because it requires exploration of what is most important to the individual and the worries associated with this.
Our work at Facts4Life is currently focussed on the attitudes and behaviours of young people, rather than those at the end of a (we hope!) well lived life, although many of our children have direct experience of the mortality of loved ones, family and friends. What’s more, they are, of course, the adults of tomorrow. We are on common ground with Gawande here as we try to break the taboos about the normality of physical and mental illness, taking the fear out of the ups and downs of health and yes, after the final illness, the recognition that our own mortality awaits us. We draw the links between mental and physical health for young people, in the way that Bill Thomas did so memorably for the residents of chase Memorial. We seek to build a partnership with GPs so that we can share a common language and reflect the same important messages about health and illness.
With new opportunity to explore these issues and the insight this brings comes empowerment – empowerment to take responsibility on a day to day level for healthy choices. This responsibility carries with it the possibility of decision making about how medicalised we wish those expected downs to be in the face of a culture that encourages us to reach out for the quick fix.
Gawande, A (2014) Being Mortal: Illness, Medicine, and What Matters in the End (Wellcome)