Save the living, yes, but care for the dying, too
GROWING up in the 1970s, Rachel Clarke loved hearing her father’s tales of his career in medicine. But one story, — from his days as a naval anaesthetist — lingered uncomfortably in her mind.
He was only a young man himself when an explosion ripped through the boiler room of his ship. Two junior ratings were caught in a blast of steam that burned most of the skin from their bodies.
With their eyes bandaged and their nerve endings destroyed so they felt no pain, the two teenagers laughed and chatted with their doctors.
They thought they’d had a lucky escape, but Clarke’s dad knew their injuries were fatal. All he could offer them was a peaceful end, so he lied about the future, about their reunion with friends and family once they docked in Hong Kong.
‘I tried to make them feel positive,’ the doctor told his daughter.
‘After 24 hours they started to become groggy, and not long after that they lost consciousness.’ The story taught Clarke two lessons: doctors are only human and sometimes words are the more powerful medicine.
As an adult, Clarke followed her father into the medical profession and noticed, during her training, that ‘death was conspicuous by its absence from the student curriculum’.
Colleagues wanted to focus on the thrill of saving lives, ignoring the less glamorous work involved in alleviating the suffering of the dying.
But, having witnessed the distress caused by bad deaths in busy hospital wards, Clarke knew her calling lay in palliative care, supporting her patients — and their families — through more dignified and even enjoyable exits.
Clarke likes to see her hospice, part of a hospital’s palliative care unit, as ‘being a kind of hybrid of medicine and domesticity’.
It is bathed in natural light with French windows offering views of trees strung with bird feeders. There are plants, colours, textures and paintings on the walls. The dying are offered massages, art and music therapy, ice cream and smoothies. Teenagers deliver pizza.
There are weddings and date nights. Pets are smuggled in. ‘There’s even a drinks trolley wheeled from room to room,’ says Clarke. ‘What better way, for those who fancy a drink, of remembering normal life back home?’
Much of Clarke’s work lies in alleviating a patient’s terror. She sees patients at their most angry and desperate, and is honest about what they can expect to feel in the dying process.
‘I would dearly love to claim that, with good palliative care, no-one ever suffers when they die,’ she says. ‘Were I to do so I would be propagating a lie . . . But the one thing I can assert with confidence, based
on the thousands of patients for whom I have cared, is that rarely, in a hospice, do people’s fears of the manner in which they will die match the lived reality . . . modern palliative drugs are a match for almost anything.’
I sobbed over the little boy who brought his sixth birthday party forward a couple of weeks so his grandfather would be alive to celebrate it with him. In the centre of the singing, laughter and flying wrapping paper sat a painfully haggard man ‘whose eyes nonetheless seemed to glow’. He died two days later. He had been dreading his final moments in which he pictured himself fighting for air. In the event, ‘There was no panic or fighting or flailing to breathe, just the ebbing of life like a tide in retreat, quietly unveiling cold sand’.
There can often be a relief in the decision to stop debilitating treatment — a relief Clarke’s own father found after two gruelling rounds of chemotherapy. The cessation of treatment can give the gift of life relished in the present, and some find themselves happier and more peaceful than they have ever been.
Clarke’s patients are free to be their purest selves in their final days. One grand old lady — with days to live — tells the doctors to buzz off so she can read her newspaper. A burly old farmer — visited daily by his devoted wife and family — waits until the end to tell Clarke he has hidden his homosexuality from them and that he misses his long-term lover.
A skeletal woman in acute pain is transported from agony to ecstasy by a nurse administering entonox [laughing gas] while singing her favourite disco hits.
Clarke is understandably furious that funding for hospice care must be propped up on the wobbly pillows of charity. ‘We owe the terminally ill better than that,’ she says, calling on her readers to lobby politicians to shout out on behalf of those who can speak only in whispers.
Perhaps, when we write our letters, we should consider quoting the end of the poem, My Life’s Stem Was Cut by writer Helen Dunmore, who died in 2017: ‘I know I am dying/ But why not keep flowering/ As long as I can/ From my cut stem?’