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

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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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-022-01086-0.

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Author and article information

Contributors

Diah Martina: d.martina@erasmusmc.nl

Journal

Journal ID (nlm-ta): BMC Palliat Care

Journal ID (iso-abbrev): BMC Palliat Care

Title: BMC Palliative Care

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-684X

Publication date (Electronic): 22 November 2022

Publication date PMC-release: 22 November 2022

Publication date Collection: 2022

Volume: 21

Electronic Location Identifier: 204

Affiliations

[1 ]GRID grid.508717.c, ISNI 0000 0004 0637 3764, Department of Medical Oncology, , Erasmus MC Cancer Institute, University Medical Center Rotterdam, ; P.O. Box 2040, 3000 CA Rotterdam, the Netherlands

[2 ]GRID grid.5645.2, ISNI 000000040459992X, Department of Public Health, , Erasmus MC, University Medical Center Rotterdam, ; Rotterdam, the Netherlands

[3 ]GRID grid.9581.5, ISNI 0000000120191471, Division of Psychosomatic and Palliative Medicine, Department of Internal Medicine, , Faculty of Medicine Universitas Indonesia, ; Jakarta, Indonesia

[4 ]Cipto Mangunkusumo National General Hospital, Jakarta, Indonesia

[5 ]Sekolah Tinggi Ilmu Kesehatan Bethesda Yakkum, Yogyakarta, Indonesia

[6 ]Department of Neuro-Psychiatry, Dharmais National Cancer Center, Jakarta, Indonesia

[7 ]Department of Hematology and Medical Oncology, Dharmais National Cancer Center, Jakarta, Indonesia

[8 ]GRID grid.8570.a, ISNI 0000 0001 2152 4506, School of Nursing, Faculty of Medicine, Public Health and Nursing, , Universitas Gadjah Mada, ; Yogyakarta, Indonesia

Article

Publisher ID: 1086

DOI: 10.1186/s12904-022-01086-0

PMC ID: 9682799

PubMed ID: 36414948

SO-VID: 6ab85178-cf29-45f1-a0af-8d15a8a54e39

License:

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