The kindness of strangersBMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a1993 (Published 08 October 2008) Cite this as: BMJ 2008;337:a1993
- Eileen Palmer, medical director, West Cumbria Hospice at Home, Workington
My father died 30 years ago, at the age of 56. His GP had prescribed him dosulepin for a number of months, muttering something about “male menopause.” After a chest x ray showed something looking like a mountain snowstorm, he was belatedly admitted to a hospital many miles and many hours away from his home in the Cumbrian mountains. The snowstorm was disseminated adenocarcinoma from an unknown primary. It had also drifted into his liver.
I was in the first weeks of a first preregistration house officer post on the professorial surgical unit at a well known teaching hospital. The doctor who bleeped me was possibly a year further on in his career. “What do you think he’ll want us to do?” he asked me after telling me the biopsy results. “Do you think we should tell him?”
As a third year medical student I had been inspired by the simple humanity and kindness of the professor of surgery I was now working for. The world literature on what would 10 years later become the specialty of palliative medicine was on the bookshelf in my bedroom in the doctors’ residence. I had a handful of paperback books by early pioneers such as John Hinton and Richard Lamerton, alongside papers on early symptom control by Cecily Saunders and Mary Baines from St Christopher’s Hospice in London. I had no training in advanced communication skills, breaking bad news, or the ethics of truth telling. Tools such as preferred priorities of care or the Liverpool care pathway would take another generation to appear.
My response was immediate, and it related to nothing I had been taught. “Yes,” I said. “He’ll want to know, and my mother will want to be with him. And they will want him home.”
Which was exactly what happened. He died within six weeks of his diagnosis, at home, in the flat above the furniture shop where he had worked. My work colleagues sent me home too. My senior registrar phoned me each day, ostensibly for advice on what colour bottles to put the blood samples in, but mostly out of kindness. An invisible web of kindness spun rapidly across the mountain village. A district nurse called each day. People I can no longer name collected prescriptions, dropped in shopping, sat with him, found taped books and music when he could no longer read, were kind to my mother, helped my younger siblings. My father’s symptom control was haphazard. The GP left some “Brompton cocktail.” Dad tried it twice but hated it. When his breathing became too laboured I held his hand and talked him through walks we had shared in the hills he loved above Coniston. He closed his eyes and he relaxed. Two nights before his death his five children stood around his bed, singing songs he taught us as children: It’s a long road to freedom and then Amazing grace. On his last night I read him poetry. “To the mountain tops way up high, take my hand, love, by and by, We’ll need the stars to guide us by, Come away now.”
Later the GP called and gave him an injection of diamorphine. He left a spare in the kitchen cupboard. “You can give it if he needs it,” he said. Thankfully he did not.
He died the next morning, falling into death as he tried to get out of bed to use the commode. My mother helped the nurse to lay him out in his best suit, while his children sang softly again, almost keening: “It’s a long road to freedom.” Mum put the poem on his wreath.
A year later I was among strangers in another mountain village in the Swiss Alps. My life partner and soulmate had fallen into death while climbing the north face of the Matterhorn. Again, an invisible, untaught web of kindness and generosity was spun. This time it was from complete strangers. It extended from the police officers who had earlier come to break the news to me in England through to the Swiss mountain guides, the hotelier, the police, the undertaker, the gravedigger, and the visiting English chaplain who exchanged his skiing holiday for a funeral service. Each day I was invited to sit with the coffin for as long as I needed. When I asked for photos of how he had been found, they gave them to me without flinching. When I needed to know more about what had happened and how, strangers would stop what they were doing and quietly, patiently, kindly answer what they could and find the necessary person or interpreter to answer what they could not. When, after a gap of 25 years, I returned, both he and I were still remembered and still known by name. This mountain village sees 70-100 untimely deaths each year.
My grandmother was the uneducated and illiterate wife of a retired railwayman. She experienced a couple of grand mal fits in her 70s. A benign brain tumour was diagnosed. A pioneering surgeon decided to resect this, with no method for closing the skull defect. She spent the last year of her life in an NHS hospital, bedbound and aphasic. I recall visiting her. Tears rolled continuously down her cheeks for the whole time I was there. She died 25 years ago, on a ward that smelt of urine.
Yesterday I returned from a collaborative event of the strategic health authority and the National Council for Palliative Care to explore the developments hoped for from the new national end of life strategy and Ara Darzi’s review of the NHS. Measurable outcomes will become central to commissioning. As I drove back up the motorway, towards the mountains and the county where my father died, I reflected on what sort of outcomes might be truly meaningful. I could think of only two: “Did I hear what really matters most for this person right now?” and “Was I kind?”
Wise decision making and kindness are not mentioned in postgraduate medical curriculums yet are the very root of good clinical practice. Over-reliance on e-learning, competency frameworks, and tick box training may risk us losing that which is most valuable and most remembered in living and dying. Kindness is genuinely transformative but not easily measured. Training young doctors in awareness and compassion may involve reaching outside the electronic portfolio and bringing in the medical humanities, narratives, and other new approaches. The University of Rochester in New York state and McGill University in Montreal have recently introduced training programmes for physicians in mindfulness, a range of practices derived from Buddhist teachings that purposefully develop awareness, attentiveness, and qualities of wisdom and kindness.
Death calls on our basic humanity. These mountain villages 30 years ago contained something precious that the doctors of today would do well to look to.
Cite this as: BMJ 2008;337:a1993