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The Dying of the Light

Maura O’Kiely

Dear Life: A doctor’s story of love and loss, by Rachel Clarke, Little, Brown, 320 pp, £14.99, ISBN: 978-1408712887

Rachel Clarke was a hospital intern when an infant who had fallen into a canal was brought to the emergency department’s resuscitation bay. The crash team got to work while theatre staff tended to the distraught mother. Fifteen to twenty minutes of repeated chest compressions and defibrillations had taken place when the impossible happened: an electric jolt hit home and the child’s heart restarted. Clarke remembers the moment as one of the most thrilling of her life. “Right there, on crumpled NHS cotton, a girl had been brought back from the dead. I wanted to cheer to the rooftops.”

Why, then, having worked in a hospital department where the prime focus is on saving lives, would Clarke choose to specialise in palliative medicine? Or, as she puts it in this memoir, make dying her day job. “If neurosurgeons are the rock stars of the medical hierarchy – its sexy, alpha, heart-throb heroes – then palliative care doctors are the dowdy support act,” she writes in the prologue to Dear Life. “A low-rank medical specialty, we lurk in the shadows, too close to death for comfort, murkily intervening with our morphine and midazolam once our charismatic cousins have exhausted their efforts at cure.”

More personally, she has noticed that people usually flinch when they hear what she does for a living. “You can almost feel the suppressed recoil as they shrink from the thought of all that death. And I don’t blame them. I used to recoil once too.”

Clarke started out as a journalist, experiencing the adrenaline rush of television reporting and also documentary-making – an assignment in central Africa included escaping a gun attack by child soldiers – before retraining as a doctor in 2009. But despite the highs of working in A&E departments, over time she found herself drawn to patients with life-limiting illnesses, having seen too many hospital deaths that were “uglier and crueller” than they should have been. “And I knew we should be doing this better.”

Now working at a National Health Service hospice in Oxford, her days in the inpatient palliative care unit are far more rewarding than had she specialised in any other medical field because, in a hospice, “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 work in a world that thrums with life.” Of course, hospice work is also likely to be emotionally bruising, draining, frustrating. It’s an exceptional week when all of her patients survive; on the bad days, it can feel like she’s inhaling “pure pain”. However the consolations for the palliative worker come from knowing that physical pain can almost always be alleviated; and nausea can be eased, fears soothed, families comforted.

Clarke interweaves the broader overview of hospice care with a deeply personal account of her own father’s decline, beginning with his cancer diagnosis, through the difficult months of chemotherapy, then to his death and the aftermath. A former GP, he initially clings to optimistic cancer survival statistics that hint he could yet be one of the lucky ones, even as oncology results show malignant cells still spreading. Clarke writes movingly and in detail of her father’s last months, days, hours and, when he dies, she is floored by the extent of her loss. “All those years of medical training, I now know, have singularly failed to equip me with proper insight into the magnitude of other people’s grief.” Consequently, when she went back to work, she returned “a better doctor”.

There are insightful sketches from Clarke’s childhood, her time as a junior doctor (fully explored in her first book, Your Life in My Hands) and other areas of her life, but it is her accounts of the last days and hours of the dying that make for the most affecting strand of Dear Life: the newly bereaved mother being shown by a hospice nurse how to wash her teenage son’s body in readiness for laying out; the frail bride who gets her full white wedding hours before she dies, still in the dress. Then there’s the young French woman radiating happiness after being wheeled out into the garden on a summer’s day. Because a hospice is as much about living as dying, Clarke reminds the reader over and over. Standing in the doorway, she watches Adele on the trolley, eyes closed, face turned to the sun. Both know what lies ahead in her few remaining weeks, the litany of bodily invasions, the indignities to be endured. Not for the first time, the medic is awed by a patient’s capacity to wholly savour a moment. “After so many months of being so diminished, pared away piece by piece by her disease, Adele, here and now, is being replenished by nothing so technical as honeysuckle, bees and a blue vault of sky. She is growing while dying, before my eyes.”

While the author shines a light on the many instances of thoughtful kindness by hospice staff in general, she acknowledges that medical people sometimes fall short, that patients “can suffer, unintentionally” at their hands. The bloody-mindedness of some colleagues does not escape her beam either. As a junior doctor, she was regularly made aware of the old guard’s oft cavalier attitude to terminal illness. “Send her to the palliative dustbin,” one consultant oncologist instructed her regarding a patient for whom chemotherapy had not worked.

Dear Life also raises questions about the unintentional distress that prolonging a life can cause. A cartoon popular some years ago showed a po-faced doctor telling a patient, “You’ve got six months to live, but with aggressive treatment we can help make that seem much longer.” The ways technology is now capable of keeping the terminally ill alive is no joke, of course. Using ventilation, resuscitation and feeding through stomach tubes, a life can be made to go on and on. But at what cost, asks Clarke: “Increasingly today, doctors question whether an over-interventionist approach to death – the medicalisation of mortality – is causing more harm than good. A defining question of modern medicine has therefore become not how do I keep this person alive, but should I?”

Near life’s end, when the tubes have been removed and pain management escalated, there may still be more to do, because the ability to heal has many forms. A hospice caregiver who manages to balance professional detachment with basic human kindness can make all the difference, and there are many anecdotes here of such empathy in practice. Consider the grandfather who, with only hours to live, tells Clarke that he is gay but has never been able to speak of it to his family, or to anyone. “When I was a boy, what I was, it was a crime …” he begins, going on to describe a life lived stoically but full of longing. There had been a decades-long, covert relationship. Clarke realises she is being entrusted with “a secret so sacred I felt less doctor than priest. Here was a man, reaching out across his deathbed, towards someone he trusted would neither shun nor condemn him.”

There are many examples the book to show how end-of-life experiences can be and should be managed, and would be if more of us were prepared. In the UK, according to Dear Life, only one in five people will die at home although two-thirds of people surveyed said a home death would be their wish. Close family members often do not know what their relative would have wanted – whether they would rather die at home or in a hospice, what level of resuscitation should be used – as it has never been discussed. Have the conversation, the author urges. Complete the appropriate documents.

How we die has been industrialised, televised and outsourced. It’s been sanitised too, and the author justifiably wonders why, for instance, pet dogs and cats are seen as health hazards “when, for comfort, they may surpass anything a human has to offer”. The aesthetics of a hospice matter too, and we learn that the Oxford hospice has an indoor waterfall as one of its therapeutic installations.

Dying after a swift, catastrophic illness is the exception: death for most of us will come slowly. (I was cheered no end to learn that Mother Nature can give the Grim Reaper a helping hand in the final stages of our corporeal decline; that our heart and lungs and liver and kidneys have the ability to slowly anaesthetise our brain, blurring consciousness, then easing us gently into oblivion.)

At the end, when the palliative staff and the machines have done all they can, well then it’s the simple supports that matter and Clarke has witnessed, time and again, that by far the most powerful deathbed comfort is another human being, “composed of ancient flesh and blood”, reaching out to one of their own.

We all deserve a good death, as compassionately tailored to our individual needs as humanly possible, but that option is not always available. Rachel Clarke is right: we should be doing it better.

1/6/2020

Maura O’Kiely is an Irish Times journalist

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