Advance care planning for patients with cancer and family caregivers in Indonesia: a qualitative study

Diah Martina*, Christina Yeni Kustanti, Rahajeng Dewantari, Noorwati Sutandyo, Rudi Putranto, Hamzah Shatri, Christantie Effendy, Agnes van der Heide, Carin C.D. van der Rijt, Judith A.C. Rietjens

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Background: Individuals’ willingness to engage in advance care planning is influenced by factors such as culture and religious beliefs. While most studies on advance care planning in Asia have been performed in high-income countries, Indonesia is a lower-middle-income country, with a majority of strongly collectivist and religiously devout inhabitants. We studied the perspectives of Indonesian patients with cancer and family caregivers regarding advance care planning by first exploring their experiences with medical information-disclosure, decision-making, and advance care planning and how these experiences influence their perspectives on advance care planning. Methods: We conducted semi-structured interviews among 16 patients with cancer and 15 family caregivers in a national cancer center in Jakarta and a tertiary academic general hospital in Yogyakarta. We performed an inductive thematic analysis using open, axial, and selective coding. The rigor of the study was enhanced by reflective journaling, dual coding, and investigator triangulation. Results: Twenty-six of 31 participants were younger than 60 years old, 20 were Muslim and Javanese, and 17 were college or university graduates. Four major themes emerged as important in advance care planning: (1) participants’ perceptions on the importance or harmfulness of cancer-related information, (2) the importance of communicating bad news sensitively (through empathetic, implicit, and mediated communication), (3) participants’ motives for participating in medical decision-making (decision-making seen as patients’ right or responsibility, or patients’ state of dependency on others), and (4) the complexities of future planning (e.g., due to its irrelevance to participants’ religious beliefs and/or their difficulties in seeing the relevance of future planning). Conclusions: Culturally sensitive approaches to advance care planning in Indonesia should address the importance of facilitating open communication between patients and their families, and the various perspectives on information provision, bad news communication, and decision-making. Advance care planning should focus on the exploration of patients’ values, rather than drafting treatment plans in advance.

Original languageEnglish
Article number204
JournalBMC Palliative Care
Volume21
Issue number1
DOIs
Publication statusPublished - 22 Nov 2022

Bibliographical note

Funding Information:
The author(s) disclose receipt of financial support for the research, authorship, and/or publication of this article from the Indonesia Endowment Fund for Education (Lembaga Pengelola Dana Pendidikan, LPDP) of the Indonesian Ministry of Finance [grant number 201711220412068]. This funding body had no role in the design and conduct of the study; in the collection, management, analysis, and interpretation of the data; in the preparation, review, or approval of the manuscript; or in the decision to submit the manuscript for publication.

Publisher Copyright:© 2022, The Author(s).

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