Like all medics, Rachel Clarke was trained to keep people alive – so what made her decide to specialise in end-of-life care? She tells Eimear O’Hagan how the death of her father changed everything she thought she knew.
Waking in the darkness of the early hours of Boxing Day 2017, Rachel Clarke heard her mother whisper gently. ‘She simply said, “Rachel… he’s gone.” My father had died in his sleep in her arms during the night. He was the first person I adored with all my heart who had passed away, and he’d faced his death with grace and equanimity. To witness it had been as heartbreaking as it was inspiring,’ remembers Rachel, her face etched with both pain and pride.
Despite being a specialist doctor in palliative medicine, confronting death on a daily basis as she cared for patients with life-limiting conditions, nothing could have prepared Rachel for losing her beloved father Mark, just 15 months after he was diagnosed with bowel cancer. And yet, Rachel says, it was an experience that transformed her as a doctor, and one that she continues to draw on daily in her work at Katharine House Hospice in Oxfordshire.
‘Before my father died, I thought of myself as an empathetic doctor,’ she says. ‘I believed I was “good” at dealing with death; I felt I understood what patients and families were going through, and how best to communicate with them. Losing Dad taught me how little I truly knew about grief and loss. It gave me a new insight into the emotions of the people I work with; it humbled me.
‘It has made me more respectful, more aware of how important it is never to glibly make assumptions. I am more connected to their pain and fear because now I’ve been that person at the bedside of someone I love, knowing time is running out.’
For many of us, the idea of caring for the dying, witnessing lives coming to an end often many years prematurely, is just too poignant to comprehend as a career. ‘When I tell people what I do, it’s often a conversation stopper,’ admits Rachel, 47, who lives in Oxfordshire with her husband Dave, 49, and their children Finn, 13, and Abbey, nine. ‘There’s an awkward pause and I can see the person mentally processing “this is a doctor who specialises in… death.”
‘People assume it must be a very depressing job. They’re stunned when I tell them how much I love it, and that, yes, it is hard, but there is nothing else I’d rather do. I understand their reaction; death may be a natural part of life but it’s frightening and there’s still much taboo around it.
‘Within the medical hierarchy, palliative medicine is definitely looked down upon by some colleagues, who don’t see where the professional fulfilment comes from. There’s an assumption that I just administer morphine and hold patients’ hands, and it’s a “fluffy” branch of medicine.’
The reality is far from it. Rachel insists her hopes for patients’ time in her care centre as much around living – and, crucially, their quality of life – as the moment of their passing. ‘I look after people aged 18 upwards with life-limiting conditions such as cancer and chronic organ failure. Not all of them are imminently dying. Around 60 per cent will come for end-of-life care and die with us; the rest will leave. They may return or they may die at a later time at home or in a nursing home.
‘My role is to prolong life, to make that life as good as it can possibly be through treatment and pain management, and to facilitate a “good” death when that time comes, free of pain and distress. There’s a misconception that palliative care means giving up hope or, even worse, that we are a group of doctors who quietly help people on their way and won’t treat them to prolong their life. That’s not true at all.
‘We may not be able to cure the illness they have, but we can manage pain, treat infections, perform CT and MRI scans, administer antibiotics and other medications – all with the aim of helping to give them the best possible quality of life,’ she says.
Rachel describes being a palliative care doctor as being a ‘scientist with a hint of shaman’, balancing her medical role with an emotional one. ‘Like every doctor, I have to be grounded in science and hard facts, but the way I help my patients goes far beyond that. They are confronting their mortality, losing every person and thing they love, and at their most vulnerable. So much is unspoken because of fear and anxiety and I must weave a path through those layers of emotions, having very difficult conversations with them and their family, to try to divine what they really want but are too frightened to speak about.’
While the stereotypical image of a hospice is of a quiet, gloomy, darkened place filled only with sadness, Rachel and her team strive for a very different environment for their patients at Katharine House. There’s lots of natural light, art on the walls, gardens to walk in and a well-stocked drinks trolley, ‘because if someone wants a glass of wine with their meal, why not?’ says Rachel.
‘You can’t underestimate the impact little touches can make, whether it’s someone having a luxurious bubble bath, enjoying delicious food or having a movie night with their children snuggled up with them in bed.
‘I once heard a fellow doctor talk about sending a patient to the “palliative dustbin” and I see how dehumanised patients can feel when they come to us, believing they have no hope or value any more. But here, small acts of kindness communicate to them, “You may not have long left on this earth, but you matter to us. Finding meaning and beauty in the time you have left is our priority.”’
In striving to cherish her patients, Rachel and her colleagues have pulled off many touching feats. One was arranging for a 96-year-old patient named Dorothy, in the final days of her life, to leave the hospice, fortified with pain relief, for her weekly game of bridge. Or hosting an early birthday party on the ward for a little boy called Timmy, whose beloved grandfather Simon was unlikely to survive his thyroid cancer long enough to see his grandson turn six.
Even a wedding was arranged in just two days for a young woman named Ellie with incurable breast cancer, the day room in the hospice decorated with fairy lights and rose petals by staff and a tower of iced white cupcakes. She died the following day in her new husband’s arms, still wearing her wedding gown.
‘For me, a “good day” at work is when I know I have helped someone die with their comfort and dignity intact. But even more rewarding are the days when I’ve helped a patient live. If I can help create an environment where they and their family feel supported and can create final, beautiful memories together, that’s the reward for me.
‘Of course, there are days when I get home and simply weep, clutching a large glass of wine. The emotional toll of this job is very real. I remember caring for a young mother in her 20s dying decades before she should, her husband and family decimated by their grief. How could I not feel distressed – as a wife, a mother, a human being, too? But I knew I had a job to do, to make her final days as dignified and peaceful as possible, so I focused hard on burying my sadness.
‘The day I stop feeling that sadness, or needing to cry privately at home or even with one of my colleagues in a quiet corner of the hospice grounds, is the day I should no longer do this job. There is no shame in responding to desperately heartbreaking situations. The team around me are so important for support because while I’ll talk to my husband sometimes about a particularly hard day, I try not to because it’s so difficult for non-medics to grasp what I face every day.’
Rachel was a ‘mature’ convert to medicine after studying politics, philosophy and economics at Oxford University then embarking on a decade-long career as a TV producer/director, making hard-hitting current affairs documentaries for Channel 4.
‘I grew up in a medical household: my dad was a GP and my mum, Dorothy, a nurse. I was good at science and there was an expectation I’d follow in the family tradition, but I worried that wanting to make Dad proud wasn’t the right reason to do it. I graduated from Oxford in 1993 and became a journalist, travelling the world making documentaries.’
By 2000, however, Rachel’s fast-paced, highly stressful job had left her profoundly depressed and suicidal. ‘I had poured myself into my work and become totally consumed by it. The job was incredibly pressurised and ruthless, but also seductive and addictive, and I lost myself to it. I became someone unreliable with no time or energy for normal life. I missed my own mother’s graduation from the Open University.
‘Work ate away at me until I felt totally hollow. I knew I had to get out,’ she remembers. ‘There had always been this niggling voice in my mind that I’d made the wrong decision, taken the wrong path – that if I’d become a doctor it would have given me the meaning I craved and felt was lacking from my journalism career. My depression also made me feel worthless and I suppose I saw medicine as a way of redeeming myself and becoming someone “better”. It was a way of finding a point to my life again.’
After studying for A-level chemistry and biology alongside her TV job, in 2003 29-year-old Rachel joined other freshers, most of them ten years her junior, at University College London’s medical school. ‘Sitting in the front row of the lecture theatre on day one, I knew this was what I was meant to do,’ says Rachel.
As a student she spent just one day on a palliative care ward and another half day with a specialist nurse. ‘It’s incredible that such a tiny amount of time was devoted to how patients die, considering everyone will do so. Historically, it’s been a bizarre quirk of medical school that the overwhelming majority of teaching is devoted to how to “fix” things or cure illness, with the small matter of how we care for our patients when their illness is unfixable being almost entirely neglected,’ she says. ‘This is beginning to change but it’s still nowhere near enough in my opinion.
‘However, death and dying aren’t confined to hospices, and the more time I spent on wards during my degree, the more I saw how this was often mismanaged or that important conversations weren’t had with people. All patients are vulnerable, but particularly dying ones, and I saw how they could be overlooked because staff were so busy. I believed they deserved more.’
It was a deeply personal experience, though, that would truly plant the seed of Rachel’s future career in palliative medicine. In 2005, weeks before she was due to marry her husband Dave, his mother Pat was diagnosed with cancer and septicaemia, dying just days later. Rachel spent the final night of Pat’s life at her bedside and, guided by her father over the phone, insisted the hospital’s palliative care team attend.
‘I was a student at the time. All I knew was theory and science; I had no practical experience. I remember the trauma and sheer desperation of watching someone die, wanting to help but not knowing what to do. I witnessed the palliative care team put the patient, not the disease, centre stage and it really was a defining moment for me. They gave her drugs to take away the pain and fear quickly and calmly, and transformed a death of distress into one of peace. I knew I wanted to be a doctor who could do that for people.’
Rachel qualified as a doctor in 2009, having taken a year out of her studies to have her first child, and worked across a spectrum of disciplines ranging from paediatrics and emergency medicine to cardiology, before making the decision in 2016 to dedicate her career to palliative care.
Tragically, it wouldn’t be long before the devastation of incurable illness was to pass from her professional to her personal life. After her father’s diagnosis in September 2016, he undertook chemotherapy and surgery – but when it became clear he wouldn’t survive, he decided to stop treatment.
Rachel says her job was a mixed blessing as her father faced his death. ‘I knew exactly and precisely what he was going to experience, and how he might die, and I wished I didn’t. It only exacerbated my distress. At the same time, it gave me a way of helping Dad. I couldn’t treat him but I could navigate the system, and how he coped was talking with me in great detail about his symptoms and prognosis. My job gave him a sense of confidence and reassurance.
‘It was hard, though. There were times, when we would have conversations on the phone late at night, I had to stop being Rachel the daughter and have the same sort of conversation I’d have with a patient. Then, when we’d said goodnight and I’d hung up, I would collapse in a heap on the sofa and weep uncontrollably, deranged with grief. But I knew I’d helped him by having that conversation.’
Mark died at home, having been nursed by Dorothy, Rachel and her siblings Sarah and Nick. ‘I’ve seen scores of people die, but I wasn’t there for Dad’s death and I have no regrets about that. It was just him and Mum, in bed together, and I love that. It’s an extraordinary image I’ll hold in my heart for ever, especially as I have patients who have no one with them but hospice staff at the end. My dad died overwhelmed with love.’
Walking beside death every day, as well as her own experiences of losing loved ones, Rachel believes has taught her some important life lessons. ‘I’m acutely conscious of how finite everything that truly matters is. I know how lucky I am to be 47 and healthy; I’ve seen teenagers die. I am fiercely determined about making the most of all the experiences I’m fortunate enough to have.
‘I’ve discovered how much stronger, kinder and more remarkable human beings are than I ever thought possible. Every day I see people conduct themselves with such courage and dignity, it blows me away.
‘But the greatest lesson I’ve learnt is about love. I see it at its purest and most tenacious – when everything else has been stripped away it is all that is left and all that matters. Witnessing that, I’ve learnt that at the darkest time of our life, what’s most important are the bonds we have formed with others. I can give morphine to a patient but often the most important drug they need doesn’t come from a syringe, it comes from the hearts of the people surrounding them. When people ask me how I do my job, and how I cope, I tell them I work every day surrounded by love.’
Dr Rachel Clarke’s book Dear Life: A Doctor’s Story of Love and Loss is published by Little, Brown, price £16.99. To order a copy for £13.59 (a 20 per cent discount), with free p&p, until 2 March, call 01603 648155 or go to mailshop.co.uk