Exploring the disease experience and supportive care for people with very severe chronic obstructive pulmonary disease in Malaysia: a multiperspective qualitative study.

Background: In Malaysia, palliative services are almost non-existent for those with severe organ failure such as chronic obstructive pulmonary disease (COPD). Access to palliative care services and awareness among the public and healthcare professionals remain low. While recognised as important in high income settings, the literature on palliative care for non-malignant disease is relatively uncommon in low- and middle-income countries, and none considered the multicultural setting of Malaysia. We aimed to explore the views and experiences of patients, healthcare providers (HCPs) and policymakers about their experience of very severe COPD and palliative care. Methods: We undertook in-depth qualitative interviews with patients with very severe COPD, HCPs working in respiratory, palliative care, and primary care medicine, and health policymakers in Kuala Lumpur, Malaysia. Interviews followed a topic guide, were audio-recorded, transcribed verbatim, and analysed using a thematic analysis approach. Results: We conducted 22 in-depth interviews with patients (n = 11), and physicians working in respiratory (n = 4), palliative care (n = 4) and primary care (n = 3) medicine. Four main themes emerged. First, there was poor understanding regarding severe, potentially life-limiting COPD and the need for palliative care. Second, patients were suffering from the severe physical, emotional, and psychosocial impact of the disease. Third, there was a lack of accessible, compassionate, holistic, and coordinated care. Finally, cultural issues such as religious norms, spirituality, community, and power hierarchies influenced patient care and acceptance of their condition. Conclusions: The Malaysian healthcare system is responding poorly to the needs of patients with very severe COPD. Raising awareness of these needs is the first step, but there needs to be a major change within the system if the care of this hidden neglected population is to be improved.