Narrative medicine: back to the future of complete care

"Wherever the art of medicine is loved, there is also the love of humanity."

­Hippocrates, 400BC

There are tensions in our expectations of doctors, general practitioners in particular. On the one hand, they are expected to be across the rapidly advancing developments of biomedical science. On the other, they are expected to manage patient care holistically and humanistically. 

The breadth of expectation is captured in the biopsychosocial-spiritual (BPSS) healthcare model, which asks clinicians to consider the patient’s world view or spiritual belief system as part of their holistic care. In the BPSS model “spiritual” equates with a person’s sense of identity, meaning and purpose, whether religious or not.

Yet an understanding of what constitutes spiritual care may be limited for both doctors and patients. Western culture, of which medicine is a product, is highly secular. And spiritual literacy, outside of organised religion, is limited. The capacity for patients to articulate and doctors to understand the requirements of spiritual care is perhaps most acutely felt as bodily decline accelerates, in the elderly or the life-limited. 

Narrative medicine offers one practical means of attending to patients’ spiritual needs. Narrative medicine was introduced to the curriculum of the Medical School of the University of Melbourne in 2023 and seeks to draw together the knowledge of literature and medicine in medical education. Biography programs or life storytelling, where volunteers support patients in telling their stories, provide a practical example of the field in practice. 

"Narrative medicine is a commitment to understanding patients’ lives, caring for the caregivers, and giving voice to the suffering."

Dr Rita Charon, Columbia University College of Physicians and Surgeons, 2017

Raising awareness of the value of life storytelling, and considering tools for expanded engagement, may increase access to these programs, which have shown to be of great value to patients, families and doctors themselves.

The research underpinning narrative medicine

Several papers have re-examined the qualitative data gathered in 2023 doctoral research on the biography program at Eastern Palliative Care (EPC), Victoria. Thematic re-analysis of the data was undertaken, framed by narrative medicine and the BPSS model, and contextualised by reports of leading global health organisations (here, here, here, here).

EPC adopted the practice from New Zealand in 2006, where Dr Ivan Lichter had identified an unmet need in the late 1980s. He believed his patients’ physical and psychological needs could be met, but something deeper — a spiritual need — remained unaddressed. A program staffed by community volunteers, trained to elicit patients’ life stories, filled the gap. It was seen as integral, rather than adjunct, to complete care. Thematic analysis was undertaken, framed by narrative medicine and the BPSS model, and contextualised by reports of leading global health organisations.

49 volunteers, 46 family members and 9 patients (the small numbers reflecting proximity to end of life) answered questions about the impact of the program. The compelling statistic was that 80% of family members considered participation positive, the remaining 20% as neutral. While comments varied, the following are representative of their group:

• One volunteer said that talking with people “at a very vulnerable time of their lives” could elicit “the things that have given their lives meaning”, as well as prompt similar self-reflection in themself. 
• A family member felt the program “put everything into perspective about the life they had lived and relived … in a positive way”. 
• Perhaps most poignantly, a patient said that the process had revived a “floodgate” of “long forgotten memories” that were “wonderfully therapeutic” in their remembering and retelling.

The limitation of a single case study is clear. However the large number of participants acts as counterpoint. The concept of “limitation” is complicated and relates to how evidence is viewed within disciplines. This is different in the arts and in the sciences. A noted Australian historian, Tom Griffiths summarises the difference:

“The conventional scientific method separates causes from one another, it isolates each one and tests them individually in turn. Narrative, by contrast, carries multiple causes along together, it enacts connectivity. We need both methods.”

Sitting at the intersection of the arts and sciences, narrative medicine values “both methods”. 

Storytelling is integral to care

Patients’ access to programs now typically occurs after referral to palliative care, and is dependent on volunteer availability. Referring doctors are mostly unaware of the program. But the emergence of the BPSS model and narrative medicine make it timely to revisit Lichter’s vision of storytelling as integral to care. How might this well-established and regarded narrative practice be made more visible and accessible without adding to the burden of GPs? 

A new research proposal has been approved by the senior leadership of EPC and is currently awaiting ethics approval by Adelaide University’s Human Research Ethics Committee. I designed the initial research but this will be in close collaboration with the doctors as participant-researchers. The aim is to achieve a truly interdisciplinary perspective which has very practical outcomes for clinicians, patients and families. This reflects the same spirit with which Ivan Lichter introduced the programs decades ago while adding conceptual weight to their use in contemporary healthcare.

The extraordinary advances of biomedical science are an irrefutable public good. Rebalancing the physiological and the spiritual in healthcare is now a growing interest within medicine. The narrative medicine of life storytelling offers one practical means of doing so. Sharing responsibility and benefits of spiritual care between doctors, patients and families has the potential to expand that public good.

Elizabeth Summerfield has an MA (Research) and a PhD (Science) from the University of Melbourne. She researches and writes on systems thinking in  leadership and learning organisations.