When my father-in-law was in hospital, we asked his doctor if he was dying. She blustered, looked embarrassed and, eventually, said no. He was, though, and afterwards we wished we’d known. It would have been a different, richer, kinder three months.
In Being Mortal, the surgeon and New Yorker writer Atul Gawande recalls being asked the same question and not really understanding it: doctors, he explains, have medicalised old age to such an extent that they no longer accept that life isn’t curable. His latest book, written with his customary warmth and panache, is a plea to the medical profession and the rest of us to shift away from simply fighting for longer life towards fighting for the things that make life meaningful.
He makes his case through stories of his family, friends and patients. He believes, following Ronald Dworkin, that autonomy is vital and that it comes from a sense of being the author of your own life. By means of anecdote, research and hard-won clinical expertise, he argues that when people feel they have control over their own stories, the end of life is more fulfilled and, afterwards, their families feel better.
A good life at the age of 93 may look very different from the same thing at 33. For one of Gawande’s patients, it’s being able to watch sports and eat ice-cream. For his father, it was being able to send emails. Knowing what matters when allows doctors to make fine judgments about surgery and other interventions of questionable outcome.
Being Mortal is not a plea for assisted death, although Gawande is not against the idea of making drugs available to terminally ill people who are suffering. He is mainly concerned that reliance on assisted death is yet another distraction from what makes the end of life meaningful, not only for the dying, but also for those around them.
Our failure to give any value to the last phase of life, our insistence on health and safety above all, has led to a dependence on care homes that are little more than parking places; Gawande is rightly scathing about a system that exists largely as a form of containment, where the temptation is to deal with people as if they are inconvenient.
As the starting point for a neglected debate, the book raises questions that it doesn’t answer. If autonomy is what matters, how do we respond when a person who is debilitated makes poor choices? Can a person with Alzheimer’s articulate what constitutes a good life? It may be, of course, that these questions are unanswerable in a general sense. Gawande’s clinical reports, thick with the particularities of people’s passions, the singularity of their existence, suggest that what matters is the individual.
What is clear is that many late medical interventions are not only unhelpful but actually counterproductive. Multiple studies show that terminal cancer patients live longer when they accept the finality of their diagnosis and move to palliative care. Gawande is all for pursuing the possibility that his patient will be the one to outsmart the odds, as long as there is some preparation for the much greater likelihood that they won’t. Exasperated by the multitrillion dollars spent on end-of-life interventions, he concludes, “hope is not a plan”.
If my father-in-law had been able to have an honest discussion with his doctor, would his miserable last months have been better? We’ll never know. It would have been a desperately difficult conversation. But I hope before someone starts messing about with me and making medical decisions on my behalf, they ask me what are the things I want to be left with, the things that really matter.