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To realise the potential of biography programs, doctors at the frontline of delivering life-limiting diagnoses need to understand the vital role of spiritual care for these patients.
Biography programs are now a feature of many palliative care organisations in Australia. They are offered as a complementary service, typically coordinated by managers of the organisations’ voluntary programs. Volunteers are trained to visit patients at home, residential facilities, hospices or hospitals to listen and record the life stories they wish to tell. Over several hour-long meetings volunteers record, write, edit and rewrite using patients’ feedback. The tangible outcome is a printed story for the patient and their loved ones. The intangible outcome is the opportunity for patients to recall the depth and richness of their personal journey, to affirm identity, meaning and purpose in their lives by revisiting their previous selves through the lens and learning of experience.
Biography, or life story, programs were imported to Australia from New Zealand in the early 2000s as part of the comprehensive care of those with life-limiting diagnoses. They had been introduced in NZ in the 1990s by Dr Ivan Lichter, who believed that finding “meaning” for these patients was crucial, in addition to the physical and psychological care they were given. While programs are now offered around the country, they now often occupy a peripheral position in care and are dependent upon a volunteer workforce.
The spiritual element of care
The spiritual element of care, to which Dr Lichter alluded, has begun to be widely acknowledged in medicine as of growing importance. It is now part of the biopsychosocial-spiritual model of healthcare. This comprehensive model also implies a need to understand the role that humanities, including narrative, can play in the delivery of care.
A challenge for valuing biography programs in comprehensive care is the still contested place of the spiritual in care, and the humanities in medical education. This is slowly changing. For example, narrative medicine, a sub-field of the medical humanities, was introduced as an elective to the medical curriculum at the University of Melbourne in 2023. However, this gradual shift in the associated knowledge of the spiritual and the humanities within medicine ignores the greater value biography programs could play right now in the spiritual care of the life-limited.
I learned of the existence of both biography programs and narrative medicine after caring for my parents and a close friend following their life-limiting diagnoses. It was evident that myself and the medical professionals lacked a language and process to acknowledge the spiritual or existential component of care. The “conversations and stories” about dying and death that the Lancet Commission on the value of death identified as needing to be restored were absent. In my mother’s case, she and I stumbled accidentally into brief conversations about meaning and purpose — the spiritual — in her life. These were moments that, in the midst of the fear and sadness of her last weeks, elicited for both of us moments of joy.
Ironically, I had been trained in historical narrative and used biography in my research. But I hadn’t realised its healing potential in care. Following Mum’s death I learned of the biography program and of narrative medicine. The latter uses the insights of patient and clinician narrative to enhance the physical and psychological care of both. Biography programs, as Dr Lichter intuitively understood, are implicitly underpinned by the philosophy and practice of narrative medicine.
Recognising value of narrative medicine
I used the insights of narrative medicine to reconstruct those accidental moments of spiritual care through storytelling that Mum and I had stumbled across, in the words of the Lancet Commissioners, to “radically reimagine” the last two years of her life had we had that knowledge at the time. The purpose of my paper was to highlight one family’s experience. But this obviously requires further research to substantiate the value of biographical narrative more broadly.
Karly Edgar’s doctoral thesis on Eastern Palliative Care’s Biography Program in Victoria contains raw data on the impact of the program on patients, families, staff and volunteer biographers. Together with interested physicians, we have begun to re-interpret the data framed by the biopsychosocial-spiritual model in light of the continuing medical debates on the spiritual in care and its study through the humanities. The aim is to raise the awareness and value of biography programs in the comprehensive care of those facing life-limited diagnoses, and to contribute empirical data to those debates.
Biography programs occupy a peripheral rather than central role in the care of the life-limited. Their sustainability is contingent upon a volunteer workforce. And learning of their existence can be accidental or too late. To realise the potential of these programs, doctors at the frontline of delivering life-limiting diagnoses need to know of them and understand the vital role of spiritual care for these patients. This, in turn, requires an appreciation of the humanities in general and narrative in particular. This is true for treating physicians, allied health professionals and patients and their families alike. Further empirical research, framed by the current debates in the medical literature, could contribute to the practical reasons for including the humanities in medical training. Translated for clinicians and the general public, it could help communicate the re-imagining the Lancet Commission seeks, especially if it was accompanied by educational resources tailored to the variety of audiences involved in care of the life-limited.
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.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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