Contemporary fiction, incapacity and assisted dying

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Most of the work I do as a lawyer is about ageing, incapacity and dying. The rooms I walk into to meet people at court or at mediation are rooms filled with a sense of the absent presence of someone who has recently died, or who is alive, but whose individual mind and memory of the past has been erased by incapacity. I am shown photographs of Christmas dinner tables from decades ago, of walks with dogs long since dead, of family groups with small children now middle-aged, scraps of handwritten notes and cards, and diaries found on old computers. A widow brings a husband’s favourite scarf, folded neatly under her hand.

I read less fiction than I once did. I often find the true stories that I hear more compelling in their detail and more moving in their authenticity, their narrative uncluttered by literary technique or prose style. In the past few months, though, I’ve read two recent novels — one which takes some inspiration from Shakespeare’s King Lear, and another which is a modern re-telling of the play — which have touched closely on the world I know and see laid out in these rooms.

LET GO MY HAND by Edward Docx

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Let Go My Hand is a novel about assisted dying, or in other words, committing suicide with the help of others — a choice usually made by people with incurable illnesses who know and fear the indignities that lie ahead. Assisted suicide is at the edge of my field of vision, the Dignitas house in suburban Zurich, perhaps the best-known place associated with it, a distant blue dot on the imagined horizon of a lifetime. I have met people who have travelled there with an incurably ill parent. I have accompanied friends to the funeral of a woman who I did not know well, who chose to die there, and who had commanded that her ashes be scattered by two horsemen galloping across her country estate towards the steps of her former home, where the mourners stood watching in burning sunlight.

It’s unsurprising that making the decision and making the journey to Dignitas should stimulate the imagination of a novelist, and Let Go My Hand is an outstanding, compelling novel.

Assisted dying is currently illegal in England. All the legal systems in which it is permitted require that the person who wishes to end their own life has the mental capacity to do so, and makes the decision of their own free will. Questions of mental capacity and free will in decisions towards the end of life preoccupy lawyers, not in a philosophical but in a practical sense: what evidence is there to prove or disprove their presence or their absence? The presence or absence are like opposite banks of a river: on one side their presence makes someone’s decision valid, and on the other side their absence means that it is not.

In the novel, mental capacity and free will, together with the assistance of the family, and the distance to be travelled to Zurich, set the conditions for the narrative. It requires a journey as momentous as a medieval pilgrimage, although a journey with a secular purpose, not a religious shrine or miracle cure as its object. And it requires an intact personality: a protagonist whose mind is fully and freely at work, although the novel suspends the finality of Larry Lasker’s decision to end his life at Dignitas until its final page. This takes the form of the posthumous letter of love written by Larry to his youngest son, Louis, who, accompanied by his two much older half-brothers Ralph and Jack, has been the driver of the journey, in the “ragged old camper van” in which his father used to drive him and his mother on summer holidays in Louis’ childhood.

The journey starts at the ferry terminal at Dover, a shared memory of summer holiday rituals not just for the characters, but for many people whose childhood holidays pre-dated the opening of the Channel tunnel in 1994 (my mother, whose first sight of England was as a young refugee from a landlocked country, on a ship that docked in Harwich in 1946, used to call the ferry crossing from Dover to Calais “our cruise”). The white cliffs of Dover, centuries before the arrival of the ferry terminal, are also the setting of the scene in King Lear from where the title quote Let Go My Hand is taken: a momentous scene where the blinded Earl of Gloucester is led by his son, Edgar, to believe that he stands precariously on top of the cliff and leaps from it to his death. Shakespeare describes father and son holding hands

within a foot/of the’extreme verge

and Gloucester tells Edgar to

Let go my hand

. . .Go thou further off.

Bid me farewell and let me hear thee going.

I felt on first reading, and still feel, that it would diminish the power and originality of Let Go My Hand to look for over-worked parallels to King Lear. The author himself has written of its influence on him, of blending the idea that Lear’s children were the children of two marriages, with his story plan:

to revivify the relationships between four such characters; to refigure the complex emotional geometries of fraternity, paternity and filiality.

The story’s protagonist, Larry Lasker, a retired professor of English Literature at UCL and interested in every subject on earth, has three children, as Lear does, whose relationships with him are tested through his decision to choose assisted suicide and the revelations of their journey. Like King Lear, Larry’s youngest child, Louis, is the closest to him, and the one who has been most steadfast and attentive since the onset of their father’s degenerative illness (motor neurone disease). I feel that a contemporary Cordelia, like Louis, would have read the “eight hundred PDFs about ‘what to expect’ and ‘how to prepare’” for the worsening symptoms and indignities of the disease. Louis is also the child whose assent to Larry’s decision to go to Dignitas and willingness to accompany him matters most — early on in the novel, Louis describes their relationship:

our feeling for one another is continually creating this insane reversal: whenever I think of being him, I want to assert his absolute right to die; whenever he thinks of being me, he wants to carry on living

as his father says:

And every step — every step — we can change our minds. Right until I’m in that room … I never want to be doing anything — for even a second — that you don’t agree with

Like Gloucester and Edgar, Louis and Larry are alone at Dover, handing their passports over and drinking tea in their camper van as they wait to board the ferry, Louis reflecting on whether his father’s “special relationship” with him is because of the “animosity” with Ralph and Jack. Ralph and Jack join them at different points further into their journey, and much of the novel consists of the dialogue between the four men, the women close to them, living and dead, all absent but strongly present even in their absence. They are a “talking” family:

Discussion and debating eases us, soothes us, heals us — ‘The Socratic Method’ as Dad calls it. Or ‘arguing’ as Mum used to call it.

The drawing out of Larry’s tensions with his older sons are not, as in Lear, the breaking of kingdoms, but of his first marriage and family life with Ralph and Jack as children, after dramatically falling in love with Louis’ mother, a choice which leads Ralph and Jack, in Louis’ eyes, to regard him variously with indifference, disdain and to aspire to living life as a reproach to him.

Louis, in his late 20s, is the narrator throughout the journey. Like all journeys, it has its everyday banalities of campsite and motorway, frustrations and discomforts, nostalgia and familiarity mixed with sharpening awareness of the increasing discomforts and vulnerabilities of a man with a terminal illness needing his children to care for him as if he was their child. It also has unlooked-for moments of heightened pleasure: shafts of light through the vast stained-glass windows of the cathedral at Troyes; champagne and oysters; sublime Chopin at a music festival in a small town above the Rhine, and dinner on the terrace of a castle overlooking the river afterwards where

we eat and drink as if Valhalla will indeed be destroyed in the morning.

Larry and Louis are very precisely delineated in their generational differences — one steering by satnav and the other wishing for a “proper regional map”. One of the striking features of the novel, for me, was such a youthful narrator’s voice, carrying both the moral responsibility for making the journey possible, and the weight of introspection into his father’s choice. Their respective ages are also significant in that Larry, a man for whom language is

the defining, the redeeming and the pre-eminent characteristic of human beings

is someone whose entire lifespan falls after the two world wars of the 20th century. He

was born in Yorkshire in the last hours of Churchill’s wartime ministry; but he drank his first milk under Clement Attlee. So he likes to say.

And as a post-war child and man, his journey across Europe is a journey through prosperous and peaceful countries, in which he carries no memories of his own of battle-fields or other horrors of war, or of a map marked by flagged lines of military advance and retreat, as people of immediately previous generations might.

Although its characters are thus precisely placed in their — and our — time, parts of the story nevertheless have a timeless quality. One of the most memorable chapters is “The Underworld” where Larry and his sons visit a remote tourist site to see some prehistoric cave-paintings, the three sons making the visit in sympathy with their father in state-of-the-art electric wheelchairs provided by the French state — as Jack sardonically comments

they can’t run their own economy, but they do great prehistoric cave access

and Louis knows that

whatever happens to Dad, we will remember this always. Yes, when I am old, I’ll think of this . . . of Ralph and Jack and me and dad on our carts. And if this was my father’s intention, then he’s achieved it. Because this journey — Dad’s journey — has its sacrament now. A moment, a monument, made in our memories that will stand outside of time.

There is an echo in the cave of the classical Underworld, of crossing the Styx — Larry, the polymath, readily naming all five underworld rivers and their symbolism to his sons. And perhaps also of the encounter of Aeneas and his father in the Aeneid, where Aeneas descends to the underworld and meets his father, Anchises, who

when he noticed Aeneas approach, reaching out across meadows,

He too opened his arms, reached both hands eagerly forward.

Tears were now flooding his cheeks, words poured from his mouth in a torrent:

‘Have you at last really come? Did righteous love for your father

Conquer the rough road here as I thought it would?[1]

These last two lines could be a paraphrase for the posthumous letter from Larry to Louis which ends the book, or indeed for the book as a whole — a letter in which Larry affirms his belief that he is dying “in the best possible circumstances” and his wish for Louis to

keep the best of me from whatever you remember of our lives together and take it with you in your heart on your travels

And the gesture of father and son reaching and letting go their hands also dominate the imagery of Virgil’s scene, which ends:

…………….. So, father,

Give me your hand! Give it, don’t pull away as I hug and embrace you!

Waves of tears washed over his cheeks as he spoke in frustration:

Three attempts made to encircle his father’s neck with his outstretched

Arms yielded three utter failures. The image eluded his grasping

Hands like the puff of a breeze, as a dream flits away from a dreamer.

The narrative of the book provides an answer to the unanswered question near its beginning, before Larry has embarked on his journey, but after Louis has explained to his brothers that their father’s illness is terminal and that he wishes to end his life himself. Jack asserts to Louis that “Dad is just not a Dignitas man”. Louis asks him how he would characterise a Dignitas family. Jack replies by saying “we are not a Dignitas family”. Louis’ question “How would you” is unfinished, interrupted by the bathing and nappy-changing of Jack’s small children during which the conversation takes place. Later, in France shortly after Ralph has joined them, Louis wonders to himself:

I’m not sure Tolstoy had it right. All families, happy or sad, conceal a great deal of dark matter . . . something that must create the dark energy that holds them together or pushes them apart.

He asks himself:

But what, I want to know, is the best way for a family to behave? To drag the dark matter out into the light? To be honest?

And this is where the fictional question coincides with the real. It leads back to the many hours over many years that I’ve spent with people, attempting to or resisting the attempt to “drag the dark matter out into the light” about their families and the deaths of their parents, in the particular way that lawyers understand, but which is still only a fragment of the light that can be shed on such “dark matter”.

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DUNBAR by Edward St Aubyn

Dunbar is an explicit re-telling of King Lear, in a series of such re-tellings by well-known contemporary authors. Henry Dunbar, this contemporary Lear, is an ageing Canadian mogul, the autocratic billionaire proprietor of a global media empire, once all-powerful, but now:

all action cancelled by the perfect civil war of omnipotence and impotence that gridlocked his body and his mind

His three daughters are, as in Let Go My Hand, the children of two marriages — the older two, the “monsters” who have “stolen” the corporate legacy that he had intended they should ultimately inherit, and the younger, the daughter estranged since her rejection of the hard-headed values and “sordid power game” by which he has made them all prosperous. The world through which they travel is not that of the Dover ferry and a ragged old camper van, but Dunbar’s private 747, “Global One”, and fleet of Gulfstream jets, and helicopters and limousines accompanied by bodyguards, chauffeurs & pilots at their command. Nor are their journeys those of a family drawn together towards a destination, but of rivalry, flight and merciless pursuit. Henry escapes from the place in rural Cumbria where he has been “imprisoned” by a deceitful conspiracy between his cruel elder daughters and his personal physician, the bad doctor who pursues his own devious ends in the story. In solitary flight in the mountainous countryside “in the middle of nowhere”, Dunbar is pursued both by the older daughters, seeking to recapture, imprison and disempower him further to their own advantage, and by his virtuous younger daughter, impelled by affection to rescue him. It is she who succeeds in her mission of reunion, taking him back across the Atlantic to New York towards the peaceful retreat of her rural home in Wyoming, only to die herself, assassinated, presumably by her sisters, by a poisoned dart whilst walking with him in Central Park. Her father is left alone to question

how has it come to this . . . why has everything been destroyed, just as I’ve started to understand it for the first time?

Edward St Aubyn, author of the semi-autobiographical Melrose novels, is a master chronicler of modern dynastic cruelty — in those stories, the cruelty of parent to child; here, reversed as the middle-aged children grasp and exert their power over an ageing parent. His portrait of Henry Dunbar, escaped, alone and hunted like a wild creature — a recurring image in the story — in a stormy winter landscape, “driven to be alone with his madness” has a harsh brilliance, both in its description of the external world and the vivid, hallucinatory inner life of Dunbar’s mind as it ranges in solitude back to his childhood and forward to the last year of his life. As so often in real life, it started with a fall — for him, slipping on black ice and hitting his head at the annual gathering of the powerful at Davos, the beginning of

the slow-motion fall that he’d been in over the last year, the one he was still trying to avoid bringing to a fatal conclusion on this slippery wreck of a hillside

Yet in some other ways, I found the novel less compelling, and its close retelling of the original less than convincing as a contemporary story. Shakespeare’s play is famously about the madness of a king. But our perception of both kingship and madness differs very much from that of Shakespeare and his contemporaries. Not even an oligarch claims a divine right to rule. The modern resonance of King Lear is surely in the relationship of the father and his children, rather than in the scale of the wealth and worldly powers that he has to withhold from or pass on to them. There are heirs of King Lear in quiet suburbs, in compounded misery, at odds with their adult children about whether they retain or have lost capacity to choose to marry in their 80s and make gifts to their step-children. There are heirs of King Lear’s cruel daughters, who leave a parent abandoned in a cold house in filthy clothes and reheating mouldy food, whilst the children take their money to spend on themselves instead. By contrast with this inconspicuous real world, the setting of Dunbar, and its accompanying plot of corporate manoeuvring for control of his business empire feels slighter and emptier than it should. The details about the share trading and the duplicitous dealings between various characters seem peripheral and uninteresting — perhaps as much to the author as to the reader. Dunbar’s cruel older daughters are ciphers of venal wealthy & sexually demanding women — their privileged lives largely indistinguishable from those of ultra high-net-worth offspring found in less literary novels, or in fawning features in magazines in the waiting rooms of the private wealth industry.

Dunbar’s “madness” — the word he largely uses himself — is also problematic. Perhaps I am too weighed down by pedantic legal, factual knowledge to put aside the questions which would in real life frame his predicament. How could he have even reached the starting point of his “imprisonment”, in a place which is variously described as a private psychiatric clinic or sanatorium, but which appears to be more of a genteel care home, merely as a result of deceitful over-prescription and referral by his private physician and an anonymous psychiatrist, following a couple of episodes of irrational behaviour? Whilst no-one would want to read a novel that expounded the law of deprivation of liberty in great detail, it’s impossible to imagine that the law would not intervene and that no-one would ask more searching questions about his capacity, and attempt to protect him from the arbitrary pursuit of his daughters. Would a modern psychiatrist describe a patient in Shakespeare’s language of “often deluded and extremely choleric”? Or a lawyer speak of a document “declaring that Henry is not of sound mind” or of a “British power of attorney”? These seem like small but jarring flaws in a story about the madness of a powerful man, in England, now. Then there is the trajectory of Dunbar’s illness. He is clearly not suffering from a progressive age-related dementia — unlike King Lear, who has both “the infirmity of his age” and a long-standing condition that provokes irrational behaviour and delusions. In spite of his sense of falling towards his extinction, Dunbar acts consciously in planning and making his flight. Even though, in one memorably striking image,

His muddle was at once immediate and fundamental; he seemed to be reaching for the keys of a piano that was sliding across the floor of a sinking ship, trying to remember snatches of a piece he had once known by heart

He knows who he is and who he has been. Towards the end of the book, Henry says of himself:

He had come close to insanity and to death . . . far from the mediocrity of returning to normal, things were better than they had ever been. For the first time in weeks he felt that his body was made of one substance, rather than held together, like a favourite old toy, with rags and tape and string

For me, a transient “madness” in which a character is redeemed by self-realisation doesn’t quite get to the heart of the matter. Without the irreparable cognitive loss of old age dementia, neither the cruelty with which a contemporary Goneril and Regan exploit a parent’s weakness, nor the sadness of the affectionate child witnessing their parent’s selfhood inexorably erased by their illness carry their full weight. Whilst reading Let Go My Hand drew me closer to its imagined world, Dunbar sent me back from fiction to real life.

POSTSCRIPT

In between reading Let Go My Hand and Dunbar, my own father died, not unexpectedly as his frailty had become more marked over the summer, at the end of a long life. Not in the least a King Lear figure, but a generous and equable man loved by both his children, he had had Parkinson’s disease for some years, and his life had steadily diminished into incapacity, shrinking and dwindling into ever shorter moments of recognition of any of us, or anything in the world around him that had ever held meaning or pleasure. For the last few years he did not leave his room in a bright, modern care home, a room with a view of narrow-boats and people passing on the canal below, although his incapacity and failing eyesight meant he could no more see and discern them than Shakespeare’s Gloucester standing on the cliffs of Dover could see the fishermen gathering samphire on the beach beneath him.

He had never quite acknowledged his illness, calling it “this thing” and refusing to know more about where it might lead. At first the decline in his intellect was so gradual and the end so far off that there were no conversations about how he might have wished to approach the end of life. Neither superstitious nor sentimental, what he might have made of a decision such as that to travel to Dignitas is only speculation. But perhaps one reason I felt so strongly drawn to the novel was a memory of his journeys, most of all of him driving us on a family holiday in our blue and cream Vauxhall Victor estate car, across West and East Germany to Prague in the summer of 1965, my brother and I young children bouncing on the seatbelt-less back seat, my mother in front, seeing for the first time the city she had not seen since the age of 15, under occupation, leaving her parents at the Masaryk station on a train that departed at midnight in October 1939.

On the evening of the day my father died, we lingered in our parting from him, sitting for a while on the balcony adjoining the residents’ lounge in the care home, in a vivid red equinoctial sunset. In a moment that was both incongruous and memorable, below us in the canal we saw a floating hot tub, brightly lit, with cheerful young people sitting in it in their swimming costumes and drinking prosecco. They waved to us and us to them. It was only in reflection and writing this that I saw the aptness of the symbolism, a boat steered by a millennial Charon across the Stygian canal into oblivion.

[1] Aeneid book VI line 684 tr Frederick Ahl

Written by

English barrister & mediator — specialising in disputed succession & decision-making for people who lack mental capacity

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