Dr Rachel Clarke worked as a television documentary-maker before deciding – as a GP’s daughter, this was always on the cards – to study medicine. She now specialises in palliative care, partly because it is centred on the patient rather than on any disease. It is impossible to overstate the qualities that make Clarke a first-rate doctor: sympathetic intelligence, kindness, a sense of humour. And she is one of those crucial people who will not settle for second best.
She champions her patients and turns a critical eye on the politicians failing the NHS. A regular hell-raiser on Twitter, she works at Katharine House, a hospice in Oxfordshire. Her first bestselling book, Your Life in My Hands, was about junior doctors (she got involved in the government dispute). Her new memoir, Dear Life, is about how the end of life can be best approached. It is an important, moving and unexpectedly uplifting book and doubles as a farewell to her father, whose death from cancer, in 2017, brought her professional life into new focus.
Has working at a hospice changed your attitude to dying?
Working close to death has shaped my relationship with life. We all know we are a spark, a little flash in the pan and will be obliterated before we know it. We know that, we ignore it, we live our life in spite of it. We squander this incredibly precious commodity – the time slipping through our fingers – from the moment we are born. The most powerful thing I come away from the hospice with every single day is the realisation that every moment matters. Genuinely, I couldn’t give a damn about wrinkles or middle age or putting on weight or my first grey hairs or reading specs – these are reasons to celebrate. I am so lucky I have them.
Your father, a GP, inspired you – what was memorable about him?
I always had that feeling of him as a colossus I could turn to, no matter what the problem. When he was four or five weeks away from death and very frail, he saw how filthy my car windscreen was when I’d driven to see him and – apologies because it might make me cry – all of a sudden, our roles flipped. I’d been caring for him. But he said: “Rachel – how can you see out of that?” And I said: “I don’t really do cars – my husband does.” And he said: “For God’s sake, you’re a woman in your 40s.” And he insisted on getting out a plastic container of screen-wash and a little funnel because, being Dad, all these things were meticulously arranged. He was so frail, he could hardly lift the bonnet and pour in the detergent. It took him 20 minutes. Yet he was being the colossus again. And I had this childish involuntary pang: I don’t want to lose that in my life. It is two years since his death and he is always there in my head but it’s rare to allow myself to think about him because it’s too painful. Isn’t it incredible how enduring the pain of losing someone you love is?
And this gave you a new take on your work in the hospice?
I needed that education about grief as a human being and as a doctor. Medical students are spat out into a world where people are dying – facing things beyond their experience. It is hard. They should be offered counselling but aren’t. Fledgling doctors-to-be learn the job of being a doctor is to rise above emotions. Talking about this issue should be part of medical education. Some doctors disapprove of what they see as a fluffy trend but it is not soft to confront this, it is the hardest thing to do – to find the strength to be detached while maintaining your humanity.
So you need professional detachment and empathy?
There is a moment in the book when I talk about seeing a toddler being successfully resuscitated. I came away in awe of the fact that this dead child had been resurrected by this crack team, moving like a machine – it was phenomenal. I’d been crying on the sidelines and, watching them, felt a sudden desire to be machine-like because I could see how the ordinary emotions of an untrained person could stop a life being saved. Yet empathy is also essential. In our digital age, listening can seem a rebellious and subversive act.
Did working in TV give you anything you could take into medicine?
Enormously so. The heart of good journalism and the heart of good medicine is in some way the same. They are both fundamentally about relationships with people and listening to and respecting people’s stories. So the human story is the heart of journalism. It is not the facts and figures. The facts and figures come to life to a reader through the story – that is what makes them care. And equally, in medicine, in every conceivable way, the human story matters.
As well as being drawn to the patient-centred aspect of palliative care, does the hard medicine also appeal?
Palliative medicine is an opportunity to practise the kind of medicine that should be universal. Isn’t it interesting that you have to be a child or actively dying in the UK to be at the centre of a medical world? I do also love the pathophysiology, the interface of hard science. In palliative care, you’re often caring for patients whose body systems are failing – their physiology is deranged, which makes the challenges of pain management much more complicated.
You talk about a “failure of nerve” in the medical profession about dying…
Commentators say the problem is that death is taboo. My experience is different. Doctors’ failure of nerve is not about them shrinking from a fearful topic, it is that they don’t want to hurt patients and their families.
I interviewed Dame Cicely Saunders [founder of the hospice movement] not long before her death and she assured me the quality of palliative care meant nobody need die in pain.
That age of paternalistic medicine is long gone and rightly so. Doctors and palliative physicians need to acknowledge that patients sometimes die with tremendous suffering. That might be because their care is wrong – their suffering is often unnecessary. But occasionally – far less frequently than people imagine – even the best palliative medicine cannot take away pain. There are aspects of suffering beyond palliation. I can help your pain with morphine but if you are spasming with grief that your children are going to grow up without their mother, I cannot palliate that. If you love someone, you are opening yourself up to inordinate pain when faced with the prospect of losing them.
You offer no view on assisted dying…
I’m not flinching from this incredibly important debate but my relationship with my patients has to come first. I would not wish to have a platform about assisted dying that made patients fearful that it was something I had in mind for them.
What are your thoughts on Boris Johnson’s promises of billions for the NHS?
Since he became leader, pretty much everything Boris Johnson has said about the NHS has been a broken promise. The biggest and most outrageous lie is that his government is delivering record, historic NHS funding. This is absolute codswallop. If you look at the NHS since 1948, the average annual increase in expenditure is around 4%. Under the Blair/Brown governments, it was a whopping 6%. Over the past nine years of Conservative governments, the annual increase has been just over 1%. It has been the most catastrophic funding squeeze the NHS has ever known. Now, the amount Boris Johnson is promising – which he dishonestly pretends is historic – is 3.4%, lower than the NHS average since 1948. He repeats this with impunity and is not challenged by the opposition or the media.
How much worse have things got since you started practising?
I’ve been a doctor for 10 years. When I started, the NHS was the recipient of the 6% funding and things were so different. Now everything is falling apart in the most catastrophic way. How, in a rich, civilised country, can patients die on a trolley in a corridor or in a lift? I’ve always been the kind of person who wanted to take a stand against bullying, neglect and the abuse of vulnerable people. Dying patients have no voice, they don’t attract celebrity support. Yet if you were to choose one metric of a civilised society, wouldn’t it be the compassion with which we treat each other as we die?
What in palliative care needs most urgently to change?
The little-known, outrageous funding situation. People assume palliative care is NHS-funded – like any other part of medicine. But it is only between 25% and 33% of palliative medicine that is NHS-funded – the rest comes from charities. My hospice gets a quarter of its funding from the NHS and has to find the rest from donations. Katharine House needs to raise £3.5m a year to care for the dying patients of Oxfordshire. How can it be that dying patients, desperately in need, are not receiving adequate NHS funded care? There is no other part of medicine where our ability to provide good care depends on how much the jumble sale raised on Saturday. Hospices, including some for children, are having to close. It is astonishing. I don’t understand how Boris Johnson can allow this to continue. We’re abandoning terminally ill patients in their droves in a country that allegedly provides cradle-to-grave care.
• Dear Life is published by Little Brown (£16.99). To order a copy go to guardianbookshop.com. Free UK p&p over £15
