Putting stories at the heart of healthcare
Cecil Helman was a South African-born GP who died in 2009 of motor neurone disease. He was also an anthropologist whose textbook, Culture, Health and Illness remains a key reference and teaching text for medical anthropology. His approach to medicine, and life, is summed up in the words of one of his obituaries:
For Cecil literature and art were as important as the science of medicine. He was fascinated by people, their cultural and ethnic backgrounds, the narratives of their illnesses, their interaction with practitioners, and the role of traditional healers in many different societies. As he said, to be an effective healer, a doctor needs to ‘understand the storyteller as well as the story’.
While his academic works has had a major influence on healthcare education and training, his most popular book was 2006’s Suburban Shaman a “mosaic of memories” of storytellers/patients and their stories, informed by his anthropological knowledge and approach. A posthumous sequel, An Amazing Murmur of the Heart, is a sort of sequel, in which Helman discusses the often-dehumanising process of medical education, during which the patient becomes something denatured, disconnected from their narrative. And in this book Helman identifies a new kind of doctor – the “technodoctor”:
Young Dr A, keen and intelligent, is an example of a new breed of doctor – the ones I call ‘techno-doctors’. He is an avid computer fan, as well as a physician. He likes nothing better than to sit in front of his computer screen, hour after hour, peering at it through his horn-rimmed spectacles, tap-tapping away at his keyboard. It’s a magic machine, for it contains within itself its own small, finite, rectangular world, a brightly coloured abstract landscape of signs and symbols. It seems to be a world that is much easier for Dr A to understand , and much easier for him to control, than the real world – one largely without ambiguity and emotion.
Helman further identifies that this attitude marks a further step along the road of reductionism and dehumanising in medical care:
Like many other doctors of his generation – though fortunately still only a minority – Dr A prefers to see people and their diseases mainly as digital data, which can be stored, analysed, and then, if necessary, transmitted – whether by internet, telephone or radio – from one computer to another. He is one of those helping to create a new type of patient, and a new type of patient’s body – one much less human and tangible than those cared for by his medical predecessors. It is one stage further than reducing the body down to a damaged heart valve, an enlarged spleen or a diseased pair of lungs. For this ‘post-human’ body is one that exists mainly in an abstract, immaterial form. It is a body that has become pure information.
I was reminded by Robert Wachter’s speech at the 2016 CCIO Network Summer School in Leeds, on unintended consequences in health IT. He gave the example of hospitals where doctors are no longer to be found on the wards interacting with patients and other staff, but in a room full of doctors on computers, interacting with the HER. The most stark illustration he used, however, was a child’s picture of a visit to the doctor, showing the doctor’s back turned to the child and her mother, tap-tapping away at the screen:
“A body that has become pure information” is how Helman describes the end process of the dehumanisation he decries. While I think the “technodoctor” is something of a straw man, Helman is certainly pointing to a genuine risk. “An Amazing Murmur of the Heart” is full of wisdom about the importance of connection, of physical touch, of attending to the story the patient brings, and the meaning of their symptoms for them. It would be a pity if this kind of rich, truly humanistic approach to medicine is somehow placed in opposition to the world of the “technodoctor.”
One way of avoiding the development of this false dichotomy into something tangible lies in Helman’s emphasis on the need to “understand the storyteller as well as the story.” What Helman doesn’t discuss in these passages is how paper-based information systems in healthcare can obscure the story and the storyteller in a welter of disjointed confusion. My own experience of paper notes is all too often wading through pages of confusing, if not illegible, notes, searching for something typewritten or printed. In this circumstance, the story the person is bringing to the encounter is utterly lost.
Initiatives like the EHR Personas allow for the conscientious, judicious use of narratives in planning and executing a major health IT change, one that could radically alter not only how healthcare is delivered but also how the personal story that is at the heart of all this activity is told.
Helman is, from the grave, issuing a warning, however, about what could go wrong. It is the same warning as that Bob Wachter gives with the child’s picture. It is fortunate that “narrative medicine” has become an academic subject in its own right, although perhaps this development indicates that something has been lost. In planning health IT interventions, we must ensure that the allow the story to be told and the storyteller to be heard. Let us focus on ensuring that the human stories that are the real stuff of every single clinical encounter are never lost, and that we turn our faces not to the screen but to those human stories.