A Point of View: How do we give dignity to the dying?
We want to give dying people their dignity. But all too often, we don't know how, says Adam Gopnik.
Last year I recall talking about some of life's milestones. My 19-year-old son was leaving home for college, and now he has left, and it has been even harder than I thought it might be - although the good news is that when he does return, it's like a scene from a 1940s movie about a soldier's homecoming.
"Luke's home! Luke's home!" his mother and his sister cry, as the door opens, and our New York apartment seems instantly transformed into a grainy black-and-white clip, with a scratchy soundtrack and lurching strings. This tear-filled moment, I hasten to add, happens about every fourth day. He chose a college 20 minutes away by commuter train, close enough for him to come home to get a proper hipster haircut and be back by dinner to his dorm-room, guitar and girlfriend.
So in some of these crucial transitions of life, modern people do better than earlier people have mostly done. We do much better with the start of life than people ever have before - infant and mother mortality both show this. And I would insist that, with all our follies, we still do much better with children than people mostly have in the past - hovering over-attentively around them being a small sin compared to beating them and sending them out into the fields and mines and factories.
The middle of life, frankly, we seem to do about as badly or as well as the last centuries did - the pains and difficulties of getting extricated from an unhappy marriage today seeming about the same as the pains and difficulties of not being able to get extricated from an unhappy marriage in the long centuries before.
But with the end of life we do very badly - I won't say worse, because it was never good, but with more indignity and casual cruelty than once attended on the rituals of dying. My own parents, I'm glad to say are, at 80, almost indecently healthy, but this year we lost my father-in-law at 95. My mother-in-law is only a year or so younger, a wonderful woman - a fine film director and a great beauty, her only fault (or chief virtue, depending on which side you stood) being how intensely she disliked me, though only for the first 20 years or so of my marriage.
In any case, this extraordinary woman now has dementia, the cruellest of illnesses, which takes a person away from her memories and then takes her away from herself.
Well, any sentence that says that something is "the cruellest of illnesses "is false, since they are all cruel. When we come to the end, the wrench of the pain lies in the reduction of a self to an object. With my father-in law, the worst was to see this hyper-elegant man with his love of small exquisite things - a Canadian anglophile with a yearning, mostly unrequited, for thin rolled-up umbrellas and polished leather card cases - become a yellowing body hooked up to an oxygen machine.
The great deaths of 18th and 19th Century literature and biography may be immensely sad, but they show the elderly at least enthroned in an old familiar bed. "That will do… all a pillow can do," said Dr Johnson at the end to his carers, and at least he was allowed still to be himself, moralising to a cushion.
Trying to define what it is that is so obviously and painfully missing from the way we die now, we all land on that one word "dignity" and struggle to articulate what it means and how and why it's missing. Our first instinct, I think, is to feel that democratic equality is the right pathway to that lost dignity, that each of us should be placed on an equal footing with everyone else and our need for human respect rooted in our common humanity.
But I wonder. Anyone who thinks that equality creates dignity should consider the condition of an economy class cabin when the overhead lockers are being filled.
We are all equal there, and none of us - not the woman who is standing on the shoulders of her husband to stuff her bursting bag into a tiny space, nor the nicely dressed middle-aged man beside her, trying to force his roller alongside - none of us is exactly… distinguished. We are all equal in the sight of the overhead bin, but none of us has any dignity there.
No - dignity, I think, is an exceptional demand, one that depends on at least an illusion or masquerade of an anti-egalitarian, indeed pre-modern - indeed an essentially feudal sense - of deference.
Dignity is deference, and deference is irrational. Dignity is not found struggling with the luggage - but it is exactly there in the deference we give to the pilot as he heads towards the cockpit.
Most of us provide this deference to each other for bare seconds at a time, in a kind of musical-chairs game of deference that we play in life, so that everyone is provided a bit of social dignity in turn. It's to give our dinner party guests dignity that, when they arrive, we take drink orders and pass around hors d'oeuvres anxiously.
We say, "Now, you're not allergic to cashews are you?" or "I've been worrying all day that you are not a fan of paella " as though we were life-long servitors, family servants in our own family. We lend dignity to the social circumstance by momentarily invoking the old order of servility.
The indignity of old age
"Dying is a matter of slapstick and pratfalls. The aging process is not gradual or gentle. It rushes up, pushes you over and runs off laughing. No one should grow old who isn't ready to appear ridiculous." John Mortimer
"Life is a moderately good play with a badly written third act." Truman Capote
"Last scene of all, That ends this strange eventful history, Is second childishness and mere oblivion, Sans teeth, sans eyes, sans taste, sans everything." William Shakespeare
Now, some people do still breathe their last in their own beds, and though I would hardly call this perfect - it is still dying - it does seem to have some saving touch of the humane about it. A chef friend of mine, after his 90-something father passed away on his upstairs bed, was able to go downstairs and make omelettes for the family - an odd but reassuring ritual.
But the elaborate deference necessary to the idea of dignity is what makes providing dignity to the dying in hospitals and hospices so hard. The carers there, I don't doubt for a minute, want to do their best. But dignity, being irrational, has to be handmade, so to speak, by too-busy doctors, and then by overworked and underpaid nurses and orderlies.
To always keep in mind the dignity of what must look to them like an undifferentiated and ever-changing row of poor forked animals in open-backed gowns, is immensely hard. They are instructed to treat their patients with dignity, to respect their patient's dignity, but they inevitably end up handing out dignity like pills on the meal tray.
They have learned by rote a set of instructions - Things To Say To The Family - that are indeed the right things to say: Your relative is gravely ill; we want to do everything we can to make him comfortable; we want you to participate in his "pain management".
In our current dispensation of dignity, everyone gets his or her share. But real dignity involves getting at least the illusion of receiving a little more than your share.
"Reason not the need," King Lear says, and we shouldn't. Unreasonable needs are the essence of ageing intact. I sometimes thought, during the long nights of vigil when my father-in-law was passing away, that if I were king of the hospitals and hospices, I might change the dress code, making the attendants and doctors wear open-backed gowns at least once a week and giving the patients white coats and name plates and the apparatus of office.
I might make certain that a portrait of each of the patients at the height of their now-faded powers - getting an award, celebrating an anniversary, or simply intimidating a neighbour - was there at the end of the bed along with their charts. I might offer Sam Weller-like valets and old-fashioned serving ladies for each patient, since what the doctors can do often seems marginal and what the valets and serving women could do for the patients' morale very real.
More from the Magazine
For most of us, the worry about getting older is not really about the passing years and their minor symptoms. In fact some of these clouds actually have their silver linings. For every woman who is laid low by the menopause, there is one like me who feels liberated by the idea of never having to deal with cramps or a tampon again. What is worrying is the thought of what might happen to us if we cross to the dark side, to the Tithonus side, of old age. Past the senior railcard, to a world of incapacity, indignity and incontinence.
For what dying people really want is simple. It is life. My father-in-law didn't want to die with dignity. He didn't want to die. His last thoughts were of escape back to his own apartment, and of a novel he had written at 90 and had never had published. What did I really think of it? He demanded with his last breaths. He didn't want to be read to. He wanted to be read.
Watching the people we love die bit by bit is the hardest thing life demands until we recall that watching the people we love die bit by bit is in a certain sense what life simply is. It just usually takes more time for the bits to go by.
During my father-in-law's last days, when we kept vigil by his bedside, that 19-year-old boy had the good idea of taking the train into town and bringing his guitar to the hospital to play for his grandfather and the other patients. He suggested it to the nurses during his vigil, and they liked the idea - first turning it over in their minds to see where it was wrong, and why it ought not to be allowed and what was uncomfortable about it, only to see that it was actually a nice idea.
But by the time he got to the hospital with his guitar, his grandfather was gone. Someday, I'll hear what he planned to play.
A Point of View is usually broadcast on Fridays on Radio 4 at 20:50 BST and repeated Sundays, 08:50 BST - or catch up on BBC iPlayer
Subscribe to the BBC News Magazine's email newsletter to get articles sent to your inbox.