End-of-life careHelping hands

Too many old people in the developed world end their lives in hospital, hooked up to machines and surrounded by strangers. That needs to change

Being Mortal: Medicine and What Matters in the End. By Atul Gawande. Metropolitan Books; 282 pages; $26. Profile; £15.99. Buy from Amazon.com, Amazon.co.uk

WOULD life still be worth living if you could watch football on television and eat chocolate ice-cream, but not walk, feed yourself or use the bathroom unaided? How much pain would you accept for the chance of a few extra weeks? And how would you use the time you had left if you knew that no such chance remained?

For most people in the developed world, conversations about such topics never take place. Young people remark in passing that they would rather be dead than go into a nursing home; that they do not want to die in hospital; that they do not want a drawn-out, agonising end. The closer that end is, the less it is talked about. The result is that hard choices are made without an understanding of their consequences. More and more people spend their last hours exactly as they wished not to: hooked up to machines under fluorescent lights, surrounded by strangers.

As death approaches, horizons naturally close in. Young people in peacetime say they want to travel, learn and experience things they do not know and meet new people. The elderly and those who are reminded of their mortality by war or civil upheaval want to be in familiar places and with those they love. But many people close to death are cheated of the chance to shift their focus to the near future. They find themselves admitted to hospital for what they think is a treatment that can fix them, only to be stuck there till death.

In this eloquent, moving book Atul Gawande, a general surgeon and author of other thoughtful works on the doctor’s trade, explains how and why modern medicine has turned the end of life into something so horrible. “Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done,” he says. The book’s focus is America, which spends vast sums on dubious end-of-life treatments. But other rich countries (and increasingly those that are not rich) are experiencing many of the same trends.

Rightly, doctors have abandoned the paternalism that used to lead them to conceal terminal prognoses. But they have failed to find a voice and the courage to guide their patients through the various treatments between which they are supposed to choose, too often hiding behind “informed consent”. That too few geriatric specialists are being trained has not helped; in America only 300 graduate every year. Meanwhile, for those people who live long enough to become frail before dying, a nursing home that puts safety before anything that might make their final days worth living awaits. “Our most cruel failure in how we treat the sick and the aged”, says Dr Gawande, “is the failure to recognise that they have priorities beyond merely being safe and living longer.”

Many passages in “Being Mortal” will bring a lump to the throat, but Dr Gawande also visits places offering a better way to manage life’s end: a Jewish retirement community on the same site as a school where the residents can act as tutors; a nursing home filled with pets for patients to care for; a sheltered-housing programme that commits itself to supporting all residents, no matter how complex their needs. And Dr Gawande himself learns to have better conversations with the sick and dying. Trial and error, and guidance from enlightened colleagues, some within the hospice movement, have taught him a useful opening gambit: “I’m worried.” These words signal that the latest procedure is neither a sure thing nor a cure, and start a discussion about priorities and outcomes, and how qualified hope should be.

Many people fear that a doctor who does not try everything possible has abandoned his patients, and they will die earlier as a result. Surprisingly, however, the try-everything approach appears not even to offer a longer life. Multiple studies have shown that patients entering hospice care, which usually means abandoning attempts at a cure, live at least as long as those receiving traditional care. A startling study in 2010 found that patients with advanced lung cancer who saw a specialist in palliative care as well as receiving the usual oncological treatment stopped chemotherapy sooner, entered a hospice earlier, suffered less—and lived 25% longer than comparable patients who received only the standard care. “If end-of-life discussions were an experimental drug, the FDA [an American regulatory body] would approve it,” says Dr Gawande. In life, as in all stories, he writes, “endings matter”.

Reuse this content
When it's a matter of opinion, make your opinion matter
Each week, over one million subscribers
trust us to help them make sense of the world.

Join them. to The Economist today

Classified ads