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

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.

Advance care planning in oncology: a scoping review and some recommendations

“…Several predisposing, not easily modifiable, factors and barriers related to ACP uptake in the cancer care context were identified. Recent studies highlighted the roles of cultural, and religious factors and the need to consider minority groups’ preferences when assessing the appropriateness of ACP [16,18–22]. These findings are in line with those of a recent review of ACP uptake among older adults with cancer [13 ▪▪ ].…”

“…Thirty-eight studies [15–52] and three reviews were identified [6 ▪ ,8 ▪▪ ,13 ▪▪ ]. Studies were heterogeneous in terms of cancer care contexts, population size and characteristics, research designs, and assessment methods (Table 1).…”

“…Factors associated with ACP communication were allocated to five categories (based on ACP uptake [13 ▪▪ ] and communication in healthcare [14] models): ACP uptake-predisposing factors and barriers [15–23], ACP uptake-enabling factors and barriers [15,18,24,25,26 ▪ ,27–29], perceived need for ACP communication and barriers [15], ACP communication–enabling factors and barriers [17,18,23,25,26 ▪ ,30–38], and willingness to communicate about ACP [23,30–32]. Fourteen articles that were not included in these categories are reported in Table 1.…”

Cancer Survivors' Experiences With and Preferences for Medical Information Disclosure and Advance Care Planning: An Online Survey Among Indonesian Cancer Support Groups

“…Our study showed that three quarters of the participants wished to be informed about their illness by their physicians rather than by family caregivers. Whereas family caregivers in a previous study considered mediated information provision to be a sensitive way of delivering bad news, 17 the majority of cancer survivors in the current study preferred information provision not to be mediated. A minority wished to be informed about their estimated life expectancies.…”

“…First, D.M., J.A.C.R., C.C.D.v.d.R., and A.v.d.H. developed a questionnaire (Data Supplement) on the basis of previous systematic reviews on ACP in Asia, 2 , 3 qualitative studies in Indonesia, 6 , 17 and a cross-sectional survey of the Dutch general population. 18 The questionnaire was translated from English into Bahasa, the main Indonesian language.…”