Paediatric palliative care around the world: Malaysia

Abstract

The evolution of paediatric palliative care in Malaysia has followed a distinct trajectory compared to adult palliative care. While adult palliative care was well-established by the mid-1990s, paediatric palliative care was still then largely ad hoc, with individual paediatricians and NGOs taking on the responsibility. Despite progress over the last decade, challenges persist. There is a shortage of trained paediatricians in this subspecialty, and financial constraints hinder progress. Decision-making in paediatric palliative care is also influenced by cultural values, religious beliefs, and societal norms. Parents are steered by cultural practices and the guidance of elder family members in a setting of communitarian traditions that are prevalent in Asian cultures. Discussions about end-of-life matters are hampered by cultural taboos. Additionally, the hierarchical medical culture, where doctors are seen as authoritative, hinder patients, including parents, from taking an active role in decision-making. The paper exemplifies these complexities through a case study, where the family's hopes and concerns were overlooked in a hectic and hurried hospital environment. The narrative calls for a compassionate, collaborative ecosystem that bridges cultural gaps and embraces shared decision-making in paediatric palliative care. It emphasizes the need to harmonize palliative care with societal values, involving healthcare providers, families, and the community. However, recognizing individual preferences and avoiding cultural assumptions are crucial. Healthcare professionals must develop skills in cultural diversity, delivering distressing news with compassion, and effectively communicate to involve families in decision-making, all while respecting their beliefs and values.