How do you live when you know you are dying? How do you cherish the moments you have left as they slip through your fingers like water?
A hospice, you might imagine, is a place overwhelmed by the torment of time running out. And yet, as an NHS palliative care doctor, I am often amazed by our patients’ capacity to savour the present with a passion and intensity that put my casual, half-focused days to shame.
This summer, a young woman arrived from a cancer centre where, for three long months, she had not felt fresh air. Now she was arriving at our hospice to die. As the paramedics opened the ambulance doors, the last thing I expected her to do was smile. But, as the late evening sunshine poured like gold onto her face, her joy at its touch was irresistible. “Could you just wait here a moment?” she asked the paramedics as they prepared to wheel her inside. We transferred her bed not inside the building, but outside, straight into the hospice garden, where she basked, eyes closed, face tilted sunwards, wearing a smile of pure radiance. Fear can accompany a patient to the hospice, but hers was a state of exaltation.
When cure is no longer an option, every moment counts. But sometimes, a patient cannot enjoy the present out of anguish at the thought of being lost to their loved ones. This is a pain no amount of morphine can palliate, yet an unlikely form of medicine – art – might just help. Hospice art and music therapists often work with patients to help them create what could be termed a legacy – words, songs, fragments, pictures – through which they live on.
Loss and legacy are potent ideas in palliative care. Recently, an award-winning book whose ambition is to reverse the loss, in childrens’ lives, of the most basic words for nature, has sparked in our hospice a curious form of palliative care. Robert Macfarlane and Jackie Morris’ life-affirming work, The Lost Words, seeks to conjure back to life the names and magic of living creatures like “otters”, “kingfishers”, “conkers” and “wrens” – even as these words are dropped from the Oxford Junior Dictionary because of their lack of use by today’s children, and replaced in the dictionary by “attachment”, “broadband” and “voice-mail”.
At the other extreme of life, the book has inspired some of our terminally ill patients to sit a little less fearfully with their own mortality. Diane Finch was inspired by the book shortly after discovering her metastatic breast cancer had spread to her brain. “There’s much talk of being ‘in the moment’, making sure you don’t stress out over tiny things that don’t matter – and yes, cancer is undeniably a life lesson,” she told me. Her eyes twinkled. “There’s nothing like a diagnosis of secondary breast cancer to pull you up short when you’re stressing about having too many dishes to do, for example.”
But after her whole brain radiotherapy, Diane felt as though, “something had dropped out, as if everything I said needed to be saved. It was all running away from me.” She started frantically typing up her every thought and feeling before they, and she, were lost to her family forever. One day, arrested by the simple joy of listening to a blackbird singing outside her desk, she worked with our music therapist to write her own song, one that, in her words, “allayed that fear that everything was going to disappear, to be lost forever.” The act of creation brought her peace.
Later that summer, I would sit among Diane’s friends and family as this song – her own Lost Words – was played at her funeral. We heard her voice ring out as truly and exultantly as a blackbird’s itself, and we were spellbound.
I looked across the faces around me, at the tears and smiles, pain muddled with delight, and then outside, through the crematorium windows, across fields of wheat so abundant before harvest. And I thought of Philip Larkin’s poem, “An Arundel Tomb”, whose famous last line has endured since 1956:
“What will survive of us is love.”
Thank you so much, everyone who joined Robert Macfarlane, Jackie Morris and me at Oxford’s Sheldonian Theatre on Friday 23rd November for an incredible evening of talk, poetry, painting, music and celebration of life, love and the nowness of nature. We raised over £5000 towards Sobell House Hospice’s Lost Words fund.