Let’s look at end-of-life care differently
You’ll be familiar with Lilliput, but there’s another island Gulliver visits on his travels that has a more chilling resonance for our times. When he gets to Luggnagg, he learns about a group within the population there known as the Struldbrugs, who have what seems to be the great luck of eternal life.
At first, Gulliver is jealous. Jonathan Swift writes: “Happiest, beyond all comparison, are those excellent Struldbrugs, who, being born exempt from that universal calamity of human nature, have their minds free and disengaged, without the weight and depression of spirits caused by the continual apprehensions of death!”
The thing is, though, that eternal life is not all it’s cracked up to be. Permanent existence comes with no accompanying elixir of youth: the question is not “whether a man would choose to be always in the prime of youth, attended with prosperity and health; but how he would pass a perpetual life under all the usual disadvantages which old age brings along with it.” The Struldbrugs are not happy with their lot. “Besides the usual deformities in extreme old age, they acquired an additional ghastliness, in proportion to their number of years, which is not to be described.”
We’ll never live forever. But we’re tending in that direction. And so the way we think about death is increasingly important. Let’s pay close attention, then, to the British Medical Association’s major report on end-of-life care, which has just been published. The report makes a serious attempt to grapple with our thinking on the subject – which can still sometimes seem as if we’re in the grip of Gulliver’s initial fantasia; that sees survival as an absolute benefit, no matter what the cost.
After speaking to more than 500 doctors and members of the public, the report concludes that we sometimes keep treating terminally ill patients after it stops doing them any good – not out of any properly reasoned concern for their best interests, but because death means defeat. We’re culturally squeamish about death, and naturally this exerts a certain pressure on doctors; and family members, completely understandably, may struggle to accept that at a certain point, nothing more can be done. The report (which is a hefty piece of work, and which I should say that I’ve only read summaries of) quotes one doctor who says that once it is recognised that a patient is dying, the care they receive is good, “but for the patients who are dying but no one’s actually worked that out yet, it’s much less good”.
As the report points out, it’s intrinsically difficult to say when someone will die – even if they are terminally ill, and all the more so when they have entered a generalised decline that may presage death without giving evidence of a specific cause. But some of it is culturally conditioned, too: as Atul Gawande points out in his extraordinary book Being Mortal, one US study found that doctors overestimate terminally ill patients’ survival times by 538% – and that when they knew the patients well they were likely to make more hopeful predictions.
One example of how this kind of magical thinking causes distress comes in the treatment of residents of care homes, who according to the report get a particularly bad time. In a care home, the doctors said, the reflex is always to call an ambulance when the patient’s health deteriorates. But if there were a recognition and acceptance that the end was likely to be coming, a plan could be made that would mean they could be cared for without being moved. The term “a good death” is a highly optimistic one, and hard to achieve at the best of times; but being shunted into a hospital to die alone instead of in the place you have come to call home seems like the opposite.
Some of this certainly falls to the medical establishment to fix. “Many doctors are reluctant to decrease treatment in a managed way as a patient approaches the end of life,” the report says. “It needs to be acknowledged that some doctors remain reluctant to make that call, associating a decision not to pursue further active treatment as an acceptance of failure.” But we all want to die on our own terms, and if so we should beware of landing responsibility at the door of doctors alone: if they are sometimes blind to our best interests, it is a myopia that is baked into every newspaper story of a miracle cure, every advert featuring a lithe young body, every promise that we make our loved ones that we will “fight this all the way”. It is a very hard thing to change.
As Swift puts it, even the oldest among us “have still hopes of living one day longer, and look on death as the greatest evil, from which nature always prompts him to retreat”. But death, however big the hole it leaves behind it, is better than being a Struldbrug.