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Why wait to die? We're adding miserable years to the end of our lives

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

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, journalist and columnist for The Spectator. Her new book, Mania, is published by the Borough Press.


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chris sullivan
chris sullivan
3 years ago

Lionel Shriver on UNHERD – YAY !!!!! Spot on as usual. My son has contracted to do the ‘blue injection’ for me at the first clear signs of dementia – unless i have already managed to get lost at sea !!!! Why is it that most people refuse to think about death at all -as if they can somehow avoid it !!!!- the ultimate in that widespread human habit – magical thinking/denial.

Tony Buck
Tony Buck
3 years ago
Reply to  chris sullivan

Which has always been a survival knack, like hopefulness and optimism !

Gary Baxter
Gary Baxter
3 years ago
Reply to  chris sullivan

Hi Chris. Could you please tell me more about the ‘blue injection’?

chris sullivan
chris sullivan
3 years ago
Reply to  Gary Baxter

The one given by vets to sick animals to ‘put them down’ is painless and happens to be the colour blue – or it used to be. Kind of a euphemism for anything that does that job. I saw my dad thru 6 years of altzeimers and i for one aint goin there !

Kathleen Stern
Kathleen Stern
2 years ago
Reply to  chris sullivan

Totally agree. I wouldn’t burden my son with the deed but would definitely do it myself. I’ve had a good life but watched my husband die in intensive care and preferably would avoid a hospital.

Alka Hughes-Hallett
Alka Hughes-Hallett
3 years ago

Very important article . Every one SHOULD actively think about death. It’s NOT morbid or unnatural. It is pure and solid. There is no shame in talking about death.
Imagine of the 7 b people, all the over 70 expecting doctors to take them to 100 or so! It’s absurd! This expectation is only possible in the 1st world! Do we have the right to welcome a new born when we refuse to say goodbye to the elderly? The population has ballooned not because of the birthrate, it’s the death rate that has plummeted.
Biologically too, when we are past our animalistic needs of procreation and sex, family life has moved on, the body has become frail and a painful burden, most would say they have lived well. This new era of intense medicine has outlawed death.
It’s time to bring in some form of death education into our curriculum .

Helen Murray
Helen Murray
3 years ago

This is why I support the organisation ‘Dignity in Dying” who campaign for legalising euthanasia.

Chris Milburn
Chris Milburn
3 years ago

Thanks for a great article.
I’m a physician that has attended many deaths and looked after countless elderly people. For every person I saw who got too little care, I’ve seen 100 who got too much. Quite regularly I end up in situations where I am treating people with miserable qualities of life, extending their life because that is what is expected of me.
And in all my time I’ve never heard one patient EVER tell me something like “when I’m so demented I can’t recognize my family, am pooping in a diaper, and hitting the nurses when they try to change it, I’d still like you to keep me alive as long as possible”. Not once. And yet I have done it to many. If I end up in hell, this will be one of the reasons.

chris sullivan
chris sullivan
3 years ago
Reply to  Chris Milburn

If you end up in ‘hell’ it wont be for demonstrating kindness ! – I think that ‘hell’ is where you get to experience ,with clarity, the pain you have caused – you will be one of the lucky ones who will be enveloped in gratitude !!

dianeleighnaylor
dianeleighnaylor
3 years ago

Lionel Shriver is a true thinker and writer of our times. Fearless.

chris sullivan
chris sullivan
3 years ago

and has been the m otivation to actually pay my unherd subscription !!

Daniel Smallwood
Daniel Smallwood
3 years ago
Reply to  chris sullivan

Me too.

Simon Denis
Simon Denis
3 years ago

Much truth here but one point: US medicine may over treat, but UK medicine can under treat. It’s a fine line and difficult to judge, but on several occasions people I know have been confronted with “non-interventionist” approaches on the grounds of age, only to recover perfectly when treated after all; whilst others have fallen in with their British doctors’ advice and died – quite conceivably before their time. Quality of life is vitally important, of course; nobody wishes to prolong consciousness in conditions of pain; but the judgement of that quality, under the terms of a rationed, nationalised system, is often appallingly indifferent and crude.

Last edited 3 years ago by Simon Denis
Ian Barton
Ian Barton
3 years ago

It does seem absurd that so many adult minds can’t see the benefit of accepting the inevitably of their demise – and managing towards it sensibly.
Everyone ought to sort out their living will (advance decisions) in early middle age – if only as an act of kindness to their relatives who may suffer awful emotional difficulties if/when something serious happens.
In the absurd absence of U.K. legislation to support assisted dying, my family share a gallows humour joke about having ”Get me to Switzerland” T-Shirts made up.
Humour seems to help this awkward conversation along.

Last edited 3 years ago by Ian Barton
Tony Buck
Tony Buck
3 years ago

There’s a huge difference between administering or choosing death (as in Assisted Dying) and not prolonging life when the patient can’t survive without constant medical intervention.

The first is killing and a gateway to mass-assassination of the elderly; the latter is merely humane, merely letting nature take its course.

Stuart Y
Stuart Y
3 years ago
Reply to  Tony Buck

Therefore what category does my mother fall under? It really isn’t that simple you know?

Stuart Y
Stuart Y
3 years ago
Reply to  Stuart Y

Spot on. Thanks.

Stuart Y
Stuart Y
3 years ago
Reply to  Stuart Y

Meant for Chris below….I promise!

Sarah Johnson
Sarah Johnson
3 years ago
Reply to  Tony Buck

Assisted dying means having the decency to let people choose not to end up, as Chris Milburn says, so demented they can’t recognise their family, are pooping in a diaper and hitting the nurses who try to change it.

You want to trap people in a situation which is literally worse than death. And you have the unbelievable cheek to describe a minimal level of compassion as assassination. Shame on you.

James Pelton
James Pelton
3 years ago

I have been thinking about death rather a lot in the last few years following a shit medical diagnosis. One of the wisest things I have tripped over in my research is from Epicurus: “Death, the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and when death is come, we are not.” I won’t deny my fear, but this observation goes rather a long way in mitigating it.

Pascal Bercker
Pascal Bercker
3 years ago
Reply to  James Pelton

I highly recommend John Dryden’s translation AGAINST THE FEAR OF DEATH – which translates the latter part of Lucretius, “On the Nature of Things” which is based on the thoughts of Epicurus. Never have I seen poetry and philosophy so elegantly and gloriously combined!

Russell Hamilton
Russell Hamilton
3 years ago

Last night a Voluntary Assisted Dying Bill passed through the South Australian Parliament. In Western Australia and Victoria we already have it, Queensland is about to follow … soon all of Australia will have it, because it is very popular. These laws require you to be more or less dying, but I hope that by the time I’m 85 it will be available to anyone 85 or over – I’m hoping for a ‘slippery slope’ relaxing of the law now that we’ve made a start.

David Uzzaman
David Uzzaman
3 years ago

We are no longer a society based on religious beliefs. Many of the former taboos such as antipathy to homosexuality have been reversed by legislation but our attitude to death is still heavily influenced by Christianity. The idea that life is a gift from God and that shortening it even by a day is essentially dogma. Most of us have been close to friends and family members who have died and whose lives were intolerable to them for a few days immediately before death. We don’t allow our family pets to suffer unnecessarily.

davidbuckingham7
davidbuckingham7
3 years ago
Reply to  David Uzzaman

I’m ninety three. Luckily I’m still compos mentis and physically able. After a session with my GP I have a DNAR that says I do not want any treatment to prolong my life, just pain relief.
My mantra is ‘I’m going to die anyway’.
It’s quite a comforting thought.

Judy Johnson
Judy Johnson
2 years ago
Reply to  David Uzzaman

Are humans merely animals like pets? That idea makes me as uncomfortable as the idea of dementia!

Tony Buck
Tony Buck
3 years ago

Anger is one way of dealing with fear.

But better antidotes to fear are curiosity and/or a sense of adventure.

David Simpson
David Simpson
3 years ago

I’m constantly checking for the nearest high cliff or tall building I can carelessly fall off when the time is right. My only fear is that I’ll be too feeble to get to it, or that instead of dead I’ll be paraplegic. I’m now 68 – in two years I’ll have had my ration, but they’ve all been wonderful. I really don’t want to spoil it with a decade of bedridden half life, as my father did, almost by accident, i just want to go, compos, happy, alert, with some dignity. I think I have that right.

Last edited 3 years ago by David Simpson
Stuart Y
Stuart Y
3 years ago
Reply to  David Simpson

My mother is now 85 and I recall a similar conversation with her not long after my father passed and she had welcomed into the family her first great grandchild.

chris sullivan
chris sullivan
3 years ago
Reply to  David Simpson

I sail small boats in rough weather-the older/more decrepid I get the smaller will be the boat and the worse the weather-in theory i think it would be best to shrug off the mortal coil doing something interesting vs passive – will see if i have the courage of my convictions !

Peter LR
Peter LR
3 years ago

Thanks, Lionel, a sensitive article on an important subject. And yet more examples of how corrupting the love of money is.
We’ve already arranged a Power of Attorney for our son to use which includes the power to switch off life support (although the legal process is expensive).
I don’t go in for tattoos but I do wonder about getting DNR tattooed on my chest in large letters!

Alka Hughes-Hallett
Alka Hughes-Hallett
3 years ago
Reply to  Peter LR

Ha ha . I might do that. Thank you.

Judy Johnson
Judy Johnson
3 years ago
Reply to  Peter LR

What a good idea!

Tony Buck
Tony Buck
3 years ago

A religious book I read, said we should submit all our various dreads (e.g of death or dementia) to God.

This doesn’t remove the underlying problems (e.g. death !) but it does deal with our dread of them, which usually is worse.

After all, unless life is just a sick joke played on us (which is a very pessimistic and unwarranted assumption) there’s a benevolent providence eager to help each of us cope with both the problems and the fears surrounding them.

Stuart Y
Stuart Y
3 years ago
Reply to  Tony Buck

Scientific books I’ve read tend not to submit to that way of thinking. Doesn’t make either “less true” if it doesn’t fit with either propositions “beliefs “, but doesnt address the subject either.

Ian Barton
Ian Barton
3 years ago
Reply to  Stuart Y

Hanging on to the concept/prospect of having an after-life probably provides numerous people with yet another excuse not to deal these with issues.

Last edited 3 years ago by Ian Barton
Judy Johnson
Judy Johnson
3 years ago
Reply to  Ian Barton

It could make them more important if there is a choice to be made about afterlife!

Judy Johnson
Judy Johnson
3 years ago
Reply to  Stuart Y

Yours is an interesting comment. Science tells us how things work and religion addresses questions of meaning. The two rarely meet (let alone compete as many seem to want them to do!) However, both are relevant to your comment!

Hugh Marcus
Hugh Marcus
3 years ago

What I can’t understand about discussions like this is why we don’t actually call it what it is. We aren’t talking about the right to die with dignity (which actually isn’t a right anyway- death is inevitable for everyone).

We actually are talking about the right to be killed. So let’s call it that. Unless of course, that makes everyone a bit uncomfortable with the idea.

There are all kinds safeguards to try & prevent the exploitation of the elderly & vulnerable. But imagine trying to draw up the guidance to prevent them being killed by those with ulterior motives.

I’ve watched both my parents die in the last few years, my mum with cancer a few years ago & my dad with Alzheimers just a month ago.
When it came close to the end there were lots of finely balanced decisions around their care. In both their cases subtle decisions that were made meant their death came a few hours or days closer. We made these decisions with our eyes wide open & in an effort to reduce their suffering.

However, the notion that we would have killed either of them in some misguided attempt to reduce their suffering is frankly absurd. Neither of them were conscious or feeling pain at the end, thanks to modern medicine & the dedication of those who practice it.

Was it hard to watch? You bet it was.

Perhaps this debate is really about western society not having the backbone to deal with difficult stuff any more.

You’ll not find this debate in places like Africa where there’s an altogether more honest acceptance of the inevitability of death.

Maybe, for a change, we could learn from them.

Andrew Roman
Andrew Roman
3 years ago

The alternative to medical assistance in dying (MAID) is not a long and healthy life, but unassisted dying.

Tony Buck
Tony Buck
3 years ago

We should apply, to the last stage of life, “the same purposive determination” we’ve applied to all the earlier stages ?

Never having had much (or anything?) in the way of purposive determination, I hope to continue muddling through to the end.

Most people do the same, I would guess.

Especially as no one knows what the future holds – or when – so planning is likely to be effort wasted.

Simon Coulthard
Simon Coulthard
3 years ago

Death is terrifying for most people. It seems very unloving to tell your patents that they’ve had enough days already and, when doctors fears of litigation are factored in, I can understand why old people are kept alive as long as possible.

Stuart Y
Stuart Y
3 years ago

Agree with what you say. However my dear mother has been in a lovely care home for 4 years suffering from Dementia. The last two I can’t describe as actual “life” as defined by anything I’ve ever known.

She is in a vegative state, by any definition and is kept alive by non-mechanical intervention (drugs) and has absolutely zero chance of recovering according to the experts. She signed a DNR at her request many years ago. My question is “why” is she being kept alive? Is the answer that even though her care home is not for profit, she pays 1,000 PER WEEK for this “privilege “? Have no idea but have my suspicions.

The real tradegy with Dementia seems to me that as nobody recovers, how do me and my siblings know for sure that she is not deep down at some level suffering not physically but mentally amongst the turmoil of her condition?

I’m sure many would say this, but my mother is/was a wonderful mother, wife, grandmother and great grandmother. We all know she wouldn’t have wanted her end to be like this, putting it mildly. Why does the Law and by direction medical professionals have the right to prolong this agony for her and us especially as she’d have been “furious”, that this was the case?

Andrew D
Andrew D
3 years ago
Reply to  Stuart Y

That sounds like a horrible situation Stuart, and one fast approaching with my mother-in-law. May I ask, what are the drugs she’s being given, and can’t you request that she be given no more than what’s necessary for pain relief?

Stuart Y
Stuart Y
3 years ago
Reply to  Andrew D

As I understand it, which isn’t much to be fair my brother tells me it is a number of non-pain killing drugs for various ailments physically. So I guess it somewhat contradicts what I said above regarding drugs “keeping her alive”.

However I do think without these interventions she would have passed a good while ago. Seeing what sustance she takes both in liquid and food wise, it continues to amaze me she’s still alive in a physical sense only. I also recognise that the Doctors are in an unenviable position as who would agree with starving or dehydrating her to death, put simply.

Although in reality both her written wishes and verbal instructions to her family prior to succumbing to this horrible condition are being ignored… But under current Laws and Ethics, what choice do Doctors have? Changing this may well alow for a more “gentle” exit from this Earth, especially for her, as she held no belief in Life after Death.

Put simply this discussion is very complicated and I don’t have the answers but as seems the way with all complicated arguments these days, it concentrates on the “lowest common denominator ” such as “evil grasping relatives”, which surely is not beyond our abilities to manage?
All very sad.

Andrew D
Andrew D
3 years ago
Reply to  Stuart Y

Thank you. Yes, all very sad and I don’t pretend to know the answers either. But I would say that starving and dehydration cannot be part of the answer if we’re to maintain some semblance of civilisation.

Stuart Y
Stuart Y
3 years ago
Reply to  Andrew D

As I intimated above couldn’t agree more.

Prashant Kotak
Prashant Kotak
3 years ago

“…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…”

Just what are you saying about your family here?

Tony Buck
Tony Buck
3 years ago

For every dodgy doctor eager to prolong one’s suffering, there’s another dodgy doctor eager to bump one off.

Val Colic-Peisker
Val Colic-Peisker
3 years ago

Well said!

Cheryl Jones
Cheryl Jones
3 years ago

I could not agree with this more.

Dan Gleeballs
Dan Gleeballs
3 years ago

Deleted

Last edited 3 years ago by Dan Gleeballs