Nobody wants to spend their last days in a care home. Credit: Craig F. Walker/The Boston Globe via Getty Images

June 10, 2021   5 mins

When my 93-year-old father went into hospital this spring with a badly infected ingrown toenail, his doctors not only amputated the toe, but immediately installed two aortic stents, without consulting family. They were about to replace his heart valves, too, before my brother and I implored his carer to drag him back home. Had he remained in the grip of American medicine, I dare say they’d have given him a kidney transplant, an espresso colonic cleanse and a face lift. He’s covered by Medicare, and American physicians are often tempted, as they say in the insurance biz, to “farm the claim”.

In the NHS, doctors have no financial incentive to over-treat. But according to NHS gerontologist David Jarrett, British medical practitioners are usually driven to use all the means at their disposal to extend the lives of suffering seniors, regardless of the patients’ quality of life, out of fear of litigation. Physicians also fear families. Opponents argue that, if assisted dying were legalised in the UK, greedy families would pressure the elderly to bow out early, just so relatives can get their mitts on the money. The real problem is quite the reverse. Jarrett attests that it’s families who are most guilty of pushing doctors to pull out all the stops to keep loved ones, technically anyway, alive.

When Jarrett chose his specialty in the Eighties, gerontology was a niche field. It’s now the largest medical specialty in the UK. As he wrote in last year’s 33 Meditations on Death, he chose “to practise a branch of medicine where the relief of suffering took precedence over saving life. How wrong I was.” The book is full of anecdotes about elderly patients subjected to intrusive, often painful tests and treatments only to die anyway. That’s hardly the soft-focus sayonara scene we prefer to anticipate, with doting relatives gathered round, the tender saying of last things, and lots of pillows. Although most people poll as preferring to die at home, only one in five Britons do so. Most of us will die in hospitals or care homes.

In my latest novel Should We Stay or Should We Go, published today, I dramatised the hale old age and serene departure we’d all choose if we could. After the book’s central couple make a pact in their fifties to commit joint suicide once they reach the unimaginable age of 80, I spin out a dozen parallel-universe resolutions to this rash vow. In the penultimate chapter, “Once Upon a Time in Lambeth”, the couple reject their pact and in their old age sail gaily on to thriving second careers. They eat loads of vegetables. They exercise. Their sex life blossoms. Younger people revere them. They grow only more physically beautiful, and artists beg to paint their portraits. They never fall ill, and for minor aches there’s always aspirin. When they finally feel a curious sense of “resolution” at the ages of 110 and 111, they stage a huge party at their home, then nod off painlessly in their garden after a few blissful sips of vintage wine. What makes this exercise in positivity interesting? It’s absurd. Of all the outcomes for this couple, including cryogenics and a cure for ageing, in real life this is the one scenario absolutely guaranteed to never happen.

The reason most of us devote so little thought to how we want to end our lives is dread, and not merely of death. We’ve good reason to dread falling into the hands of modern medicine, whose practitioners, often with the best of intentions, can artificially drag out the very worst part of our lives. Extended life expectancy doesn’t mean we get to be young longer. We get to be old longer. There are indeed wonderful exceptions — like the extraordinary speculative fiction writer Ursula Le Guin, sharp and enchanting to her very end at 88. But most of us in advanced age will not be, shall we say, at our best.

Humans are not designed to live beyond a certain number of years. Our telomeres continually shorten. Over time, our cells no longer competently reproduce. Moving parts wear out. Yet steadily expanding life expectancy (now 13 years greater than when the NHS was founded) has fostered the unrealistic assumption that this average limit will only keep increasing. Any end point that’s eternally receding needn’t necessarily arrive. Death no longer seems inevitable, but the result of human error: some doctor failed to do his or her job. Death is an affront, over which our families should sue. As many do.

And so two-fifths of the NHS budget is spent on the over-65s. While the service spends an average of £2,000 per capita, for the over-85s that soars to £7,000. But we shouldn’t envy the recipients of such largesse. (How very much nicer to be gifted one of those sleek single-gear bikes with a titanium frame.) Many of us will rack up healthcare costs in the last six months of our lives as high or higher than the cost of our healthcare for all the years previous. In my 2009 novel So Much for That, an oncologist asserts that debilitating cancer treatments had probably provided my protagonist’s wife “a good three months”. “No,” the protagonist differs. “They were not a good three months.”

To enjoy anywhere near the autonomous, dignified end of days we’d want for ourselves and the people we love, it’s probably a mistake to wait for the medical profession to reform itself. We’ve arrived at a situation no one deliberately designed, and it has a life of its own. The sheer availability of treatments seems ipso facto to justify their employment. Those doctors wanted to replace my father’s heart valves, if only because they could.

Any proactive revolution may have to come from us patients. For young people to mar their precious insouciance by dithering over a distant twilight would be wasteful. But for those of us getting on in years, however unpleasant the prospect (and there will always be a task more terribly pressing), it’s time to devote serious consideration to the circumstances under which we’d prefer life-extending medical treatment be withheld.

This is a family matter. If we discuss with one another, ahead of time, what kind of end of life we’d find intolerable, maybe our families will be less inclined to press doctors to go to extravagant lengths to keep us in a world that holds no more savour.

Surprisingly, although these issues have been a consuming professional concern of late, I’ve never yet sat down with my own elderly father and asked him at what point he might wish to decline life-sustaining care. As he comes closer to death, its very mention starts to feel not only awkward, but like tempting fate. I’m anxious about seeming to indicate that his children want him to throw in the towel prematurely. But there must be a way of approaching the subject out of concern for him and for what he wants to happen, should he decline into a state at such odds with the ferocious man he’s been throughout the rest of his life.

And for those without family — or trustworthy family — to honour our wishes, there are Advance Directives, one of which I just composed on my own behalf. Indeed, rather than dwell on what poems we want read at our memorials, all of us beyond about age-sixty ought to write a personalised record in which we spell out plainly in what circumstances we’d decline further medical treatment — even flu jabs and blood pressure medication, much less intubation or bone marrow transplants. Me, I’d call time with dementia, unrelievable pain, or a terminal diagnosis whose further odious treatment would only slightly delay the inevitable.

As children, we entertain what we want to be when we grow up. In late adolescence, we begin to choose a trade or career. In adulthood, we accept this job and decline that one, marry this person and not that one, settle in this town rather than another. Our plans are often frustrated, but at every stage most of us approach our futures with a degree of intention. The very last stage deserves the same purposive determination we’ve applied to all the others.

Granted, it’s difficult to foresee how our future selves will feel. But I’ve more confidence in the judgment of my younger self than in the presumably reduced version that might make any Faustian bargain to stick around. It’s the better me who doesn’t want to dwindle abed, no longer recognising my own brother.

Lionel Shriver is an author and journalist. Her new essay collection, Abominations, is published by the Borough Press.