The narratological approach in accompanying people towards the end of life: the experience of "Teatro DiLetto"
Main Article Content
Keywords
narratological approach, narrative medicine, bioethics, palliative care, end of life, symptom management, end-of-life communication, end-of-life education, theatre-therapy
Abstract
Background: The care of patients in the terminal phase of their lives requires a broader approach that encompasses emotional, psychological, relational, and spiritual support for the person.
Methodology: This paper describes the "TeatroDiLetto", a project aimed at exploring the possibility, for terminally ill patients, to express their experiences, stories, and emotions through various artistic forms, with the aim of promoting their emotional and psychological wellbeing and a better quality of care.
The project involved three Italian associations dealing with healthcare support and a multidisciplinary group composed of: doctors, bioethicists, psychologists, therapists, and theatre actors. Training sessions were organised for the operators involved in the project, and individual interviews were conducted with all participants, before and after the artistic experience.
Results and Discussion: Preliminary results suggest that the valorisation of patients' narratives, life stories, memories, and wishes can have a significant impact on their well-being and on the quality of the operators' professional performance, while fostering that sense of community and sharing among all those involved, which is the basis of any authentic care support process as well.
Conclusions: Healthcare professionals should be prepared to interact with different humanities professionals, so that they might collaborate in the realisation of a personalised care project that is attentive to: the specific history of each subject, cultivating constant dialogue between knowledges, and drawing on a multiple and interactive panorama of competences.
References
2. Chambers RL, Pask S, Higginson IJ, Barclay S, Murtagh FEM, Sleeman K. Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis. AMRC Open Res 2023; 4:19.
3. Price DM, Strodtman LK, Montagnini M, Smith HM, Ghosh B. Health Professionals Perceived Concerns and Challenges in Providing Palliative and End-of-Life Care: A Qualitative Analysis. Am J Hosp Palliat Care. 2019; 36(4):308–15.
4. Coelho A, Roberto M S, Barros L, Barbosa A. Family Caregiver’s Anticipatory Grief-Clinical Interview: Psychometric Characteristics and Scoring Pattern. Illn Crisis Loss 2022; 30(2):294–319.
5. Alencar DC, Carvalho AT, Macedo RL, Amorim AMNE, Martins AKL, Gouveia MTO. Feelings of nurses who work with cancer patients in terminal phase. Rev Fun Care 2017; 9(4):1015–20.
6. Patuzzo S, De Stefano F, Ciliberti R. The Italian code of medical deontology. Historical, ethical and legal issues. Acta Biomed 2018; 89(2):157–64.
7. Ciliberti R, Gulino M, Gorini I. New Italian law about end of life: Self-determination and shared care pathway. [La nuova normativa italiana sul fine vita: L’autodeterminazione e la condivisione del percorso di cura]. Recenti Prog Med 2018; 109(5):267–71.
8. Busch IM, Moretti F, Travaini G, Wu AW, Rimondini M. Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review. Patient 2019; 12(5):461–74.
9. Schofield G, Dittborn M, Huxtable R, Brangan E, Selman LE. Real-world ethics in palliative care: A systematic review of the ethical challenges reported by specialist palliative care practitioners in their clinical practice. Palliat Med 2021; 35(2):315–34.
10. Reigada C, Hermida-Romero S, Tabera A, Acilu A, Sandgren A. et al. Combining interdisciplinarity and creative design - A powerful strategy to increase palliative care awareness within a university community. Think Skills Creat 2022; 46:101179.
11. Haufe M, Leget C, Potma M, et al. BMJ Supportive & Palliative Care 2020; 0:1–11.
12. Miroslav S. Mindfulness in Palliative Care - the Healing Effect of the Present Moment. Klin Onkol 2020; (Supp.2):138–40.
13. Lewis B. Narrative Medicine and Contemplative Care at the End of Life. J Relig Health 2016; 55(1):309–24.
14. Rudnik A, Sobczak K. The importance of narrative medicine in palliative care. Palliat Med Pract 2021; 15(1):64–9.
15. Kvåle K, Haugen DF, Synnes O. Patients' illness narratives-From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory. Cancer Rep (Hoboken) 2020; 3(2):e1227.
16. Alfano L. Scaletti FR. Le parole che nascondono. Varazze: La Redancia; 2000
17. Park S, Song H. The Art Therapy Experiences of Patients and Their Family Members in Hospice Palliative Care. J Hosp Palliat Care 2020; 23:183–97.
18. Potash JS, Ho AHY, Chan F, Wang XL, Cheng C. Can art therapy reduce death anxiety and burnout in end-of-life care workers? A quasi-experimental study. Int J Palliat Nurs 2014; 20:233–40.
19. Rodeyns J, Joson A, Smets T, De Backer F. The meaning of art in palliative care from the end users' perspective. Arts Health 2022; 14(2):204–16.
20. Baczewska B, Block B, Kropornicka B, Niedzielski A, Malm M, Łukasiewicz J, Wojciechowska K, Poleszak W, Zwolak A, Makara-Studzińska M. Hope of Recovery in Patients in the Terminal Phase of Cancer under Palliative and Hospice Care in Poland. Biomed Res Int 2020; 2020:7529718.
21. Lanocha N. Lessons in Stories: Why narrative medicine has a role in pediatric palliative care training. Children (Basel) 2021; 8(5):321.
22. Milota MM, van Thiel GJMW, van Delden JJM. Narrative medicine as a medical education tool: A systematic review. MedTeach 2019; 41(7):802–10.
23. Wesley T, Hamer D, Karam G. Implementing a Narrative Medicine Curriculum During the Internship Year: An Internal Medicine Residency Program Experience. Perm J 2018; 22:17–187.
24. Jorm C, Roberts C. Using Complexity Theory to Guide Medical School Evaluations. Acad Med 2018; 93(3):399–405.
25. Woodruff JN. Accounting for complexity in medical education: a model of adaptive behaviour in medicine. Med Educ 2019; 53(9):861–73.
26. Horden P. Music as medicine: The history of music therapy since antiquity. London: Routledge; 2017.
27. Gorini I, Iorio S, Ciliberti R, Licata M, Armocida G. Olive oil in pharmacological and cosmetic traditions. J Cosmet Dermatol 2019; 18(5):1575–9.
28. Ben-Noun L. Medical effects of cosmetics. Beer-Sheva: B.N. Publication House; 2016.
29. Jones P. Drama as therapy: Theatre as living. London: Psychology Press; 1996.
30. Charon R. Narrative Medicine. Honoring the stories of illness. Oxford: Oxford University Press; 2023.