Reading Patients, Writing Care

We turned her every couple of hours in the end, though somehow the procedure seemed more incessant than that. At times, it felt like a peculiarly brutal routine to inflict upon someone under your watch. But there was no room for compromise in the instruction we’d been told to follow: pressure sores can be deadly. And to have any chance of preventing them, we had to subject my grandmother to regular, distressing turns, which couldn’t be done fluently due to the effort involved; turns that demolished whatever quantum of peace only morphine could supply her in repose.

Before long, the task inevitably acquired a regimental punctuality. Yet it remained too intimate ever to be entirely functional. Nor did it become any easier with practice. By design, the whole process is rarely seamless. One hasty move can be torturous. Equally, though, overcautiousness carries its own perils: repositioning someone in slow motion prolongs the risk of aggravating existing abrasions. However tightly we policed our complacencies, there was always room for agony; and however inescapable such pain is, we weren’t about to absolve ourselves of the additional suffering we alone seemed to be inflicting. If it appeared as though we were destined to fail, this was hardly an acceptable compensation. The constant glare of anticipatory grief leaves the labor of care bleached of self-forgiveness.

The house in which my mother had been born and where she now once again lived—on account of poverty, not out of choice—became the place where she would see her own mother die. This symmetry was a privilege amid formidable sadness: “Most people want to die at home,” observes dementia campaigner and novelist Nicci Gerrard, yet “most die in hospital.” And while the majority of terminally ill people “want to be with family,” too “often they are alone with strangers.”¹ How fortunate we were to be bucking that trend.

It is caregiving’s emotional and physical contours that are illuminated throughout Rachel Clarke’s Dear Life: A Doctor’s Story of Love and Loss. Although the book centers on the remarkable work of professional hospice staff—who ensure that people who don’t spend their final hours at home are at least surrounded by dignity, calm, even consolation—Clarke’s vision of care’s complex entwinements of torment and fulfillment is unconfined to specialist practitioners. As such, she reads distinct end-of-life experiences in medical settings for what they reveal about our common sentiments toward illness and dying; sentiments that imbue countless, apparently unexceptional, yet affectively multifaceted acts of caregiving that take place outside clinical environments too.

The “turn” is one such act: monotonous, exacting, utterly vital. So often undertaken by family members who’ve had to learn fast the basics of round-the-clock care, the activity of repositioning for the prevention of decubitus ulcers doesn’t get much literary airtime. That it does feature in Dear Life feels all the more significant to me, not simply because Clarke’s description facilitates a personal connection, poignantly reminding me of the strenuous demands of a somewhat taken-for-granted procedure, but also because it exemplifies Clarke’s effort to advance a form of writing that complements one key ambition of the “critical medical humanities” in recent years: to broaden “the sites and scales of ‘the medical’ beyond the primal scene of the clinical encounter.”² In so doing, Dear Life foregrounds the explicitly affective aspects of attending to patients as an avenue to political activism—pointing to the broader reality that it may be easier to look away from palliative care than to face it.

By deliberately focusing with passionate exactitude on some of society’s most vulnerable, Dear Life combines institutional advocacy with a memoir of Clarke’s journey into palliative medicine, where she discovers the profound emotional costs and rewards of providing often excruciating care to strangers. Released just before the COVID-19 outbreak started to escalate, the book retrieves the particularity of hospice communities from the homogenizing statistics under which they are too often subsumed—cordoned off as the high-mortality “segment” of the general population in the epidemic’s tragic graphs.

And this affecting particularism is one of Clarke’s standout strengths as a writer: it’s crucial to her mission to document the quiddity of illness beyond the threshold of medical rescue, where the familial devastation occasioned by imminent loss is unique for each patient and for each relative. One of the formal challenges she sets herself is how to make those singular spaces of dying legible, while also provoking us to think about the attitudes we share—and might need to reexamine—about what it means to live fully with a terminal condition.

For the most part, Clarke greets that challenge with a sort of tenacious modesty, avoiding the stylistic acrobatics that tend to engage literary critics and scholars like myself. Behaving in this way, Dear Life apparently foils the pursuit of ambiguity, the enticements of irony, and the unraveling of internal contradiction. Yet, given the ethical stakes of Clarke’s project, there’s reason to celebrate its unassuming syntax, which trains the reader’s attention, through its lack of ostensible charisma, on how care in extremis can otherwise be known and practiced. Indeed, confronting the limits of your critical desire for technical complexity in this book comes to feel, by the end, like an ethical precondition for imagining the very limits of your desire for continued life.

 

How We Talk about Care

Clarke braids the story of her professional switch to palliative medicine with the narrative of the loss of her father (himself a GP) to cancer. With a dying parent as its emotional fulcrum, Dear Life joins Gerrard’s What Dementia Tells Us about Love (2019) and Christie Watson’s The Language of Kindness: A Nurse’s Story (2018): each integrates devastating familial loss into viscerally compelling accounts of patients’ life-threatening or life-extinguishing conditions; each provides testimonies to the strain and possibilities of caregiving against the backdrop of a fragile medical system in Britain that remains under-resourced after more than a decade of austerity.

What also unites these writers, though, is the ambition to reach beyond the impersonal discourse in which they’ve been trained, honing in its place what they consider to be a much-needed, affectively enriched vocabulary of patient-carer interaction. This impulse syncs with the disciplinary aims of fields that have come to be known as narrative medicine and the health humanities.

In Clarke’s case, she insists on the indispensability, above all, of “listening to and respecting people’s stories.”³ In doing so, she complements the work of scholars such as Rita Charon, who emphasizes how vital “attentive and accurate listening” remains in clinical practice for establishing “mutual investment, reciprocal clarity, and affiliation—ideally hallmarks of healthcare itself.”⁴ Dear Life instantiates this “recognition of attention as a requirement for empathic and effective care” through the texture of its prose. There, at the level of the sentence, we begin to see how this book contributes to the flourishing archive of contemporary “pathography”: a genre that has evolved well beyond memoirs concerned with patients’ experiences of treatment to encompass physicians’ chronicles of the emotional facets of diagnosis, dread, pain management, and grief work.

More importantly, we see how, through Clarke’s unostentatious concentration on the “subjective dimensions” of caregiving, the book actually models what Charon calls the “signature method” of narrative medicine itself: namely, close reading.

 

Patient-Centered Aesthetics

Having entered the medical profession on the front lines of accident and emergency care, Clarke noticed how her own capacity for paying “close attention” to patients’ stories of illness quickly became overtaxed. Before the desensitization she spotted in colleagues could take hold, she made an institutional shift: “I wanted to retain my kindness, my impulse to care, not have it bludgeoned out of me.” With that resolve, Clarke moved into palliative medicine and found herself “gravitating towards the difficult conversations that some of [her] colleagues would go to any lengths to avoid.”

Dear Life sustains one of those conversations with its reader in an attempt to dispel the generalizing vocabulary of horrors that surrounds terminal illness. By returning affective specificity to seemingly hopeless situations of imminent loss, the book also counters what commentators from the health humanities and disabilities studies, such as Rebecca Garden, have called the “tendency to biomedicalise patients,” replacing “narrow mimetic” representations of “preselected” conditions with detailed portraits of “the intersubjective nature of illness.” For Clarke, as for many in the medical humanities, the precision of those portraits is itself an ethical proviso for closely “attending to the experience of the individual who suffers.”⁵

To that end, Dear Life ruminates vehemently on what it would mean to cultivate a hospice environment that “toppled conventional medical paradigms.” Creating a space for this type of care might in turn rectify “the profound loss of agency” people typically experience in becoming patients—an additional “form of pain for a species hardwired to act, to decide, to shape, however sketchily, our destiny.”

“Dear Life” asks us to fathom how life might otherwise be lived, if we were to get that chance to decide when enough is indeed enough.

What might such a heterodox setting look like? It might be a hospice where “aesthetics mattered,” speculates Clarke, and her indignation at why it’s not already the norm is tangible: “Why can’t a wife curl up in a hospital bed beside her dying husband? Why can’t we ensure there is a way for an inpatient who knows their precious time is short to have sex with their partner, should they choose to? Why aren’t we throwing open our doors to teenage children bearing boxes of pizza for movie nights with Dad, before they lose him for ever?”

More than a set of blueprints for policy amendment, these questions are miniature exhortations that capture the way intimacy might be facilitated in the face of oblivion. No less moving for being hypothetical, they’re snapshots from “a truly patient-centred hospital environment,” each telling its own microstory of how “solace” could still thrive in an institution “where distress and anxiety are rife.”

This may strike some readers as almost unpalatably uplifting. Yet Clarke makes no attempt to hide what a connoisseur she is of heartwarming catalogs of benevolence. “All that is good,” she assures us, “in human nature—courage, compassion, our capacity to love—is here in its most distilled form” in the hospice. Time and again, litanies of loving kindness counterweigh the awful apprehension of self-loss, yet without superficially veiling its proximity; far from functional, these lists enumerate what it feels like to “witness people rising to their best, upon facing the worst.”

To be sure, trim lines like this sail pretty close to aphorism: the symmetry here between “rising” and “facing” is rather sprucely answered by the half rhyme of “best”/“worst.” Yet the epigrammatic neatness of those parallel clauses epitomizes the corrective agility of Clarke’s style, as her adages crisply dismantle assumptions about hospices as crucibles of overwhelming despair. “There is always a spark of beauty or significance to be found in the life you have left,” she advises, “even—perhaps especially—at its end.”

 

How We Write about Care

In the wake of COVID-19, Dear Life feels not just poignant but furious, as Clarke punctuates her charged scenes of loss with razor-edged inquisitions into the precariousness of those institutions that have been appallingly affected by the pandemic. As the British government commended the public for helping to prevent the NHS from becoming overwhelmed at COVID’s Easter peak, did it matter, asked Clarke, with unconcealed outrage, “that 400,000 of our most vulnerable citizens were promised shielding while being effectively abandoned” in hospices and other residential-care settings; and that “the alleged ‘success’ of April came at such stupendous costs to those too elderly, frail, or disabled to live in their own homes?”⁶

Yet Clarke isn’t just out to shame her audience: sanctimony doesn’t get a foothold in Dear Life’s generous prospectus for reform. And one of her accomplishments is the way she opens wide a compassionate portal through which the reader can enter a richly described realm of letting go, where lives are still amply led.

In stepping across that threshold, though, one starts to wonder what’s left for criticism to do. All the usual avenues to intricate analysis seem blocked by Clarke’s determination to concentrate on “the quieter, smaller things” doctors and carers alike can do to “make patients feel cherished, and hospitals humane.” How are literary scholars to engage with pathographies like this, which offer relatively slight opportunities for acrobatic investigation? How might we explain the merit of our stirring, pathetically nourished encounters with such works, especially when they don’t necessarily measure up against criticism’s valorization of the coolly unsentimental, the suavely estranging, or the impishly perplexing?

By these lights, one reason to admire Dear Life lies precisely in its capacity to blunt our accustomed tools of dissection by compelling us to learn something from emotive observations of care work—excruciating and inspiring in equal measure—whose sympathy-soliciting traction is usually what gets the agonistic reader’s antenna quivering. This isn’t to imply, rather condescendingly, that Dear Life deserves nothing more than respectful appreciation; rather, it is to notice how Clarke raises the ethical voltage of her writing via its candor and transparency.

There’s something palpably responsible about that, as the temperate artistry of the writing alters the disposition with which we greet it. Clarke summons us without piety to share her “first-hand experience” of an environment of care that society rarely wishes to think about until the time comes; a chronically underfunded environment that may be “synonymous with dying” but is “remarkably full of life,” where “there is more of what matters—more love, more strength, more kindness, more smiles, more dignity, more joy, more tenderness, more grace, more compassion—than you could ever imagine.”

I could say something about the risks the repeated determiner “more” runs in tipping this inventory of virtues toward the sentimental. But that would feel like overstepping the remit of close-reading a book about palliative close reading, while misconstruing its prompt to feel something other than an urge to resist or prosecute the pathos Clarke conjures so ardently without apology. “When, in short, is enough enough?” is the question that haunts inordinate exegesis, particularly when one turns to a work of life-writing like this. And it’s the question some patients have to ask themselves when treatment options are exhausted, one that my gran had little time to entertain before a series of strokes eroded her ability to say much at all.

Such is the signal achievement of a text whose affective lineaments prompt readers to reflect on what, exactly, they are looking for when reading pathographies, while encouraging them to wonder what making sense of their own ending might mean. Without so much as a whiff of mortality tourism, the book asks us to fathom—more frankly than most of us are probably inclined to do—how life might otherwise be lived, if we were to get that chance to decide when enough is indeed enough.

 

This article was commissioned by Sharon Marcus.