Unveiling narrative medicine in palliative care

“With narrative competence, physicians can reach and join their patients in illness, acknowledge their own personal journeys through medicine, acknowledge kinship with and obligations to other health professionals, and initiate a consequential discourse with the public about health care.” (1).

This approach offers an exceptional opportunity in the context of palliative care, to demonstrate that “reading between the lines” goes far beyond the importance of personal attention. The potential of narrative medicine in palliative care offers theoretically sound and teachable clinical skills, as well as opportunities to improve the well-being of medical staff, patients and carers (2).

Everyone has a story and is a story. By taking an interest in individual experience, suffering can be recognized and honored without necessarily alleviating it (3). This tangibly ‘real’ contact, even if not consciously perceived as ‘narrative’, may be one of the reasons why working in palliative care is so enriching.

Narrative medicine is part of the medical humanities and concerned with the importance of narratives and stories in medical spaces. Founded in New York in 2000 by internist Rita Charon, narrative medicine is inspired by aspects of the humanities such as literature, philosophy, poetry, art, and social science theories. This emerging transdisciplinary field of research simultaneously addresses structural inequalities and social justice in health care (4-8).

The emphasis on stories and narratives can be found in the concepts of various scholars. Sartre emphasized the importance of stories in our lives when he said: “A man is always a teller of stories, he lives surrounded by his own stories and those of other people, he sees everything that happens to him in terms of these stories.” (9). Stories are our necessary means of encountering one another.

Sociologist Arthur Frank also sees listening as a moral obligation: “One of our most difficult duties as human beings is to listen to the voices of those who suffer. The voices of the ill are easy to ignore, because these voices are often faltering in tone and mixed in message, particularly in their spoken form before some editor has rendered them fit for reading by the healthy. These voices bespeak conditions of embodiment that most of us would rather forget our own vulnerability to. Listening is hard, but it is also a fundamental moral act” (10).

In oncology and palliative care in particular, where patients are grappling with central questions of life and identity and seeking answers to deal with their changed reality and future prospects, it is particularly important and valuable to be witnessed.

This special series on narrative medicine in palliative care delves into the profound intersection of storytelling and healthcare, exploring how narratives shape the experiences of patients, caregivers and clinicians in palliative care.

Our journey begins with Andrea Praschinger’s illuminating exploration of the role of medical comics in both medical education and palliative care. Using creative and visually engaging materials, Praschinger demonstrates how storytelling can transcend traditional educational methods to foster empathy and understanding (11).

Continuing the journey, Gudrun Kreye takes us into the heart of home care visits, where the patient’s world intersects with the demands of medicine. Through the lens of a compelling case study, Kreye reveals the special charm and unique challenges of providing palliative care in the intimate setting of a patient’s home, where each visit unfolds as its own story (12).

Craig D. Blinderman invites us to consider the power of narrative therapy in palliative care practice. Blinderman illuminates the transformative potential of narrative therapy and offers insights into how narrative therapy conversations can serve as healing agents in the face of serious illness and end-of-life challenges (13).

Katharina Edtstadler explores the particular role of storytelling in palliative care and offers a nuanced approach to different narratives from a literary studies point of view. Edtstadler reflects on the role of patients’ narratives, stories of clinicians, and existing literary texts that deal with death, dying and the experience of severe illness (14).

Finally, Kitta et al. confront us with the realities of death and dying within carceral systems. In their pilot study, the authors explore the social responsibility of medicine in caring for the terminally ill in prison, drawing on interviews of palliative care physicians who work within the confines of prison walls (15).

As we embark on this journey through the tapestry of narrative medicine in palliative care, we invite you to engage deeply with each article, to embrace the stories within and to explore the power of narrative medicine.

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Narrative Medicine in Palliative Care”. The article did not undergo external peer review.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-76/coif). The series “Narrative Medicine in Palliative Care” was commissioned by the editorial office without any sponsorship or funding. A.K. and E.K.M. served the unpaid Guest Editors of the series. E.K.M. also serves as an unpaid editorial board member of Annals of Palliative Medicine from February 2024 to January 2026. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Charon R, DasGupta S. Narrative medicine, or a sense of story. Lit Med 2011;29:vii-xiii. [Crossref] [PubMed]
2. Laskow T, Small L, Wu DS. Narrative Interventions in the Palliative Care Setting: A Scoping Review. J Pain Symptom Manage 2019;58:696-706. [Crossref] [PubMed]
3. Stanley P, Hurst M. Narrative palliative care: a method for building empathy. J Soc Work End Life Palliat Care 2011;7:39-55. [Crossref] [PubMed]
4. Charon R. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press; 2008.
5. Charon, Rita, DasGupta S, Hermann N, et al. The Principles and Practice of Narrative Medicine. New York: Oxford University Press; 2017.
6. Charon R. The patient-physician relationship. Narrative medicine: a model for empathy, reflection, profession, and trust. JAMA 2001;286:1897-902. [Crossref] [PubMed]
7. DasGupta S. Narrative humility. Lancet 2008;371:980-1. [Crossref] [PubMed]
8. Metzl JM, Hansen H. Structural competency: theorizing a new medical engagement with stigma and inequality. Soc Sci Med 2014;103:126-33. [Crossref] [PubMed]
9. Bruner J. Life as Narrative. Social Research. JSTOR 2004;71:691-710. [Crossref]
10. Kleinman A. The Wounded Storyteller. Body, Illness and Ethics. Chicago: The University of Chicago Press; 1995.
11. Praschinger A. Medical comic in medical education and palliative care. Ann Palliat Med 2024;13:187-9. [Crossref] [PubMed]
12. Kreye G. The patient living with the deer: the special charm of home care visits in palliative care described in a case report. Ann Palliat Med 2023;12:1463-8. [Crossref] [PubMed]
13. Blinderman CD. Considering narrative therapy in palliative care practice. Ann Palliat Med 2023;12:1475-9. [Crossref] [PubMed]
14. Edtstadler K. Storytelling & the unspeakable: narratives in/about palliative care. Ann Palliat Med 2024;13:452-7. [Crossref] [PubMed]
15. Kitta A, Wippel A, Ecker F, et al. On dying alone in prison and the social responsibility of medicine: a pilot interview study of physicians caring for terminally ill incarcerated patients in Austria and the United States. Ann Palliat Med 2024;13:62-72. [Crossref] [PubMed]

Anna Kitta

Eva Katharina Masel