The unmet needs of palliative care among patients with non-malignant chronic illness in Indonesia: A phenomenology study

Abstract

Background: People with chronic illness tend to report multiple and complex symptoms that decrease their ability to meet their needs and quality of life (QoL). As an approach to address people with chronic illness, palliative care (PC) in Indonesia is still primarily focused on people with chronic malignancies. This results in that paradigm meaning the spectrum of palliative care is interpreted narrowly only for cancer or end-of-life (EOL) patients. Purpose: This study explores the experience and needs of patients diagnosed with non-malignant chronic illness toward their illness to identify the need for palliative care. Methods: Semi-structured interviews were conducted on seven patients with non-malignant chronic illness. An ECOG adaptation palliative patient score developed by Dr. Cipto Mangunkusumo National General Hospital (RSCM) was used to screen the participants. Only participants with a palliative score of four or higher (≥4) were interviewed. All data were recorded, transcribed, and analyzed using Colaizzi’s method. Results: There are six major interrelated themes with one sub-theme emerging from this qualitative study that uniquely match with the illness trajectory of non-malignant chronic patients. The themes are: (1) negative feelings that cannot be described at the time of diagnosis; (2) ignorance of the disease process (sub-theme: late realization that illness cannot be cured); (3) helplessness during the medication/treatment process; (4) shame of being a burden to family and surroundings; (5) limited access and support ; and (6) family and God as motivation and hope reinforcement to recover at the end of illness stage. Conclusion: People with non-malignant chronic illnesses complain of several challenges, which are not much different from those with cancer. Therefore, patients with non-malignant chronic illness also have a similar need for palliative care. A deeper and broader assessment of palliative care should also be implemented in patients with non-malignant chronic illness after the early diagnostic process