Three people I cared about died in August. A fit, active man of 70, whose heart gave out suddenly on his weekly cycle ride. A woman of 90 who’d wound down gradually but stayed active until her last weeks, when she died of cancer, peacefully at home surrounded by family. My father-in-law, experiencing various health setbacks and partial recoveries through his eighties, until he could take no more. I thought of them often as I read Atul Gawande’s Being Mortal, an important, moving, challenging book on “illness, medicine and what matters in the end”.
Gawande describes three patterns that typically describe our final days, and I saw them in those deaths: the sudden catastrophe, the series of illnesses, setbacks and treatments, and the gradual fade.
It’s sobering to know that one of these will end my story, and I won’t have much choice. People say, “I want to go suddenly, without knowing anything about it” – though that’s devastating for those left behind. Or, “I want to die peacefully in my bed, with family around me” – though that can be hard on the carers. They’re unlikely to choose the middle picture, suffering what Being Mortal calls “ODTAA”, or One Damn Thing After Another, until they die in a hospital bed:
Spending one’s final days in an Intensive Care Unit because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s okay” or “I’m sorry” or “I love you”.
In some cases, that’s inevitable. But Gawande is surely right to call it a ‘cruel failure in how we treat the sick and aged’ that so many old people die in these circumstances.
So how did we get here? And more importantly, can we get somewhere better? Being mortal highlights three key areas:
Modern medicine has achieved amazing things, but the culture has to change. The last stages of life have been medicalised, argues Gawande: ‘You agree to become a patient, and I, the clinician, agree to try to fix you, whatever the improbability, the misery, the damage, or the cost.’ We want doctors to keep treating until there’s nothing else they can do. But there is always something doctors can do, except as Gawande shows, it isn’t always good to do it. Margaret McCartney wrestles with similar dilemmas from a GP’s perspective in her excellent Living with Dying.
Medics need to expand their vision, urges Gawande, to see that other things matter. They should listen to what older people really value, and focus on helping them achieve it through medical and other interventions.
Hospitals, nursing homes and home carers prioritise health and safety, but while that’s important, people also need life to have meaning. I think of care home staff worrying about my late mother’s daily, risky, local walks with her frame, yet accepting this gave her joy and purpose. Too often, though, “our elderly are left with a controlled and supervised institutional existence … a life designed to be safe but empty of anything they care about.”
Let’s talk about death
We don’t, do we? We ‘know’ we and those we love will die, but we don’t want to think or talk about it. That would be tempting fate. And yet, unless we do, how can we and/or our loved ones make good choices for our dying days?
Medics, carers and organisations are already changing institutions and practices for the better. John’s Campaign is one small example. Increased publicity about making a will and Powers of Attorney encourages us to have a conversation about the end of life with our loved ones well before we think it’s needed.
But Being Mortal shows this needs to be more than a one-off. We need wider acceptance that we are mortal creatures who age and die, and that medicine has its limits. I’m not sure I’m any better at accepting my own mortality, but I’m working at it.