Home GRASP GRASP/Japan End-of-life care A better way to care for the dying

End-of-life care A better way to care for the dying


A STROLL from Todoroki station, at the kink of a path lined with cherry trees, lies a small wooden temple. A baby Buddha sits on the sill. The residents of the Tokyo suburb ask the infant for pin korori. It is a wish for two…
A STROLL from Todoroki station, at the kink of a path lined with cherry trees, lies a small wooden temple. A baby Buddha sits on the sill. The residents of the Tokyo suburb ask the infant for pin pin korori. It is a wish for two things. The first is a long, spry life. The second is a quick and painless death.
Just part of this wish is likely to be granted. The paradox of modern medicine is that people are living longer, and yet doing so with more disease. Death is rarely either quick or painless. Often it is traumatic. As the end nears, people tend to have goals that matter more than eking out every last second. But too few are asked what matters most to them. In the rich world most people die in a hospital or nursing home, often after pointless, aggressive treatment. Many die alone, confused and in pain.
The distress is largely unnecessary. Fortunately medicine is beginning to take a more thoughtful approach to people with terminal illness. Reformers are overhauling how end-of-life care is delivered and improving communication between doctors and patients. The changes mean that patients will experience less pain and suffering. And they will have more control over their lives, right up until the end.
Many aspects of death changed during the 20th century. One was when it happens. The average lifespan increased by more over the past four generations than over the previous 8,000. In 1900 global life expectancy at birth was about 32 years, little more than at the dawn of agriculture. It is now 71.8 years. In large part that is a result of lower infant and child mortality; a century ago about a third of children died before their fifth birthday. But it is also because adults live longer. Today a 50-year-old Englishman can expect to live for another 33 years, 13 more than in 1900.
The chance of an adult dying was once largely unrelated to age; infections were indiscriminate. Michel de Montaigne, a French essayist who died in 1592, wrote that death in old age was “rare, singular and extraordinary”. Now, says Katherine Sleeman of King’s College London, death mostly comes by stealth. She estimates that in Britain only a fifth of deaths are sudden, for example in a car crash. Another fifth follow a swift decline, as with some cancer patients, who stay fairly active until their final few weeks. But three-fifths come after years of relapse and recovery. They involve a “slow, progressive deterioration of function”, Dr Sleeman says.
People in rich countries can spend eight to ten years seriously ill at the end of life. Chronic illness is rising in poorer countries, too. In 2015 it accounted for more than three-quarters of premature mortality in China, according to the Global Burden of Disease, a survey. In 1990 the share was just a half. The World Health Organisation (WHO) predicts that rates of cancer and heart disease in Sub-Saharan Africa will more than double by 2030.
A side-effect of progress, however, has been what Atul Gawande, a surgeon and author, calls “the experiment of making mortality a medical experience”. A century ago most deaths were at home. Now, according to a survey of 45 rich countries by the WHO, fewer than a third are. Death also used to be egalitarian, says Haider Warraich of Duke University Medical Centre and the author of “Modern Death”. Income did not much affect when or where people died. Today poor people in rich countries are more likely than their better-off compatriots to die in hospital.
No dying fall
Many deaths are preceded by a surge of treatment, often pointless. A survey of doctors in Japan found that 90% expected that patients with tubes inserted into their windpipes would never recover. Yet a fifth of patients who die in the country’s hospitals have been intubated. An eighth of Americans with terminal cancer receive chemotherapy in their final fortnight, despite it offering no benefit at such a late stage. Nearly a third of elderly Americans undergo surgery during their final year; 8% do so in their last week.
The way health care is funded encourages over-treatment. Hospitals are paid for doing things to people, not for preventing pain. And not only patients, but those who love them, suffer. Many people who may need intubation or artificial ventilation are not in a condition to indicate consent. An American study found that in about half of cases involving decisions about the withdrawal of treatment there is conflict between family and doctors. A third of relatives of patients in intensive-care units (ICUs) report symptoms of post-traumatic stress disorder.
Many people will want to “rage, rage against the dying of the light”, as the poet Dylan Thomas put it. Others will have particular events they want to attend: a grandchild’s graduation, say. But the medical crescendo often occurs by default, not as a result of personal choice based on a clearly understood prognosis.
The huge gap between what people want from end-of-life care and what they are likely to get is visible in a survey conducted by The Economist in partnership with the Kaiser Family Foundation, an American health-care think-tank. Representative samples of people in four large countries with differing demographics, religious traditions and levels of development (America, Brazil, Italy and Japan) were asked a set of questions about dying and end-of-life care. Most had lost close friends or family in the previous five years.
In all four countries the majority of people said they hoped to die at home (see chart 1) . But fewer said they expected to do so—and even fewer said that their deceased loved ones had. Apart from in Brazil, only small shares said that extending life as long as possible was more important than dying without pain, discomfort and stress (see article) . Other research suggests that wish, too, is increasingly unlikely to be granted. One study found that between 1998 and 2010 the shares of Americans experiencing confusion, depression and pain in their final year all increased.
What healthy people think they will want when they are mortally ill may well change when that moment comes. “Life becomes mighty precious when there is not a lot left, ” says Diane Meier, a geriatrician at Mount Sinai Hospital in New York. It is common, for example, to hate the idea of a feeding tube but grudgingly accept one when the alternative is death.

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