Palliative care doctor Rachel Clarke’s new book is a powerful account of her experience of working in a hospice, how people approach the end of their lives, and the impact her father’s death from cancer has had on her work and life.
Dear Life is a memoir in which Rachel describes her journey from TV journalist negotiating with warlords in the Democratic Republic of Congo to her current role as a doctor at Katharine House Hospice in Oxfordshire, as well as a meditation on how we, as a society think about our final days.
Speaking on Hospice UK’s Dying Matters podcast, she explained that she decided to write the book because of the fear that exists around the subject of dying. “It felt very important to me to try and write about palliative medicine because although the one thing all of us knows is going to happen is the end of our life one day, nevertheless there’s an enormous amount of fear and taboo around the topic of death and dying.
“That’s understandable, it’s a daunting topic for anybody. But as a palliative care doctor I’ve seen in so many ways the unintended harm and suffering that can come from not talking openly and gently about our own mortality. I believed very strongly that in trying to explore these issues, and have a wider conversation about dying, perhaps I might be able to take away some of that suffering that really doesn’t need to be there.”
The book contains the moving stories of patients and their loved ones, such as Michael, “the man with the broken heart”, who, so concerned about leaving his wife who has dementia alone to the possible fate of being moved into a care home, neglects the fact that the chest wound where his pacemaker has been fitted has become painfully infected.
She also writes about helping to organise a wedding for a young bride with only two days’ notice, rushing through orders of flowers, cupcakes, fairy lights and a dress to ensure twentysomething Ellie gets the day she’s always dreamt of before succumbing to cancer; she eventually dies the next day in the arms of her new husband.
In Rachel’s first book, Your Life in My Hands, she spoke about working as a junior doctor for a health service at breaking point (she has been a vocal campaigner for the NHS since former Secretary of State for Health Jeremy Hunt planned to impose a 7 day week on junior doctors).
In Dear Life, her passionate stance on the importance of compassion and care in the face of the funding crisis is evident on every page, from describing the day-to-day of the hospice she currently works in (“when the staff knock up a fresh smoothie from blackberries and bananas, its preparation tells a tale of how much its recipient matters…You are worth it, you are worth it, you are worth it”) to decrying the lack of money given to healthcare and the palliative care sector.
“If there is one metric of a civilised society, it should be the compassion and care with which we treat each other as we die. That means ensuring nobody in Britain should ever die on a trolley in a hospital” she told Dying Matters.
“The current funding model for palliative medicine is staggeringly inappropriate. Most people assume that palliative medicine is predominantly NHS-funded. We’re all familiar with the phrase “cradle to grave” to describe NHS care, and if only that were the case.
“The vast majority of hospices in the UK are charities that receive only a tiny fraction of their funding from the NHS. My hospice, Katharine House Hospice, only receives a quarter of their funding from the NHS and that means they have to raise £3.5 million every year from voluntary donations to keep going. There is no other part of the NHS where our ability to keep providing our service depends on whether or not the local jumble sale earned enough money that weekend” she added.
“I think it is inhuman that the NHS and by extension the government is not properly funding palliative medicine. Most politicians will talk the talk about wanting everybody to have as much dignity and comfort at the end of their lives as possible, but why is that talk not being backed up by proper funding? It’s just madness that we are a rich society, and we are ostensibly a civilised society, yet we are not providing that NHS-funded care for people who are dying. I desperately wish that would change.”
Elsewhere the book is peppered with Rachel’s meditations on death and bereavement, including how the death of her father made her confront her own prejudices around people’s handling of their grief.
Dear Life is published tomorrow, January 30 2020 on Little Brown
Listen to Dr Rachel Clarke discussing her book and her personal experiences as a palliative care doctor on the Dying Matters podcast