Paediatric palliative care in Malaysia: Survey of knowledge base and barriers to referral

Abstract

BackgroundPaediatric palliative care in Malaysia is underdeveloped, but there is recent increasing awareness and interest in this speciality. In September 2012, the Health Minister of Malaysia launched an initiative to support a nationwide provision of this service.AimThis study aims to explore the knowledge and practice of healthcare providers and their barriers to referral for palliative care prior to development of a nationwide service.DesignSelf-administered questionnaire survey.ParticipantsHospital-based paediatricians and paediatric nurses.ResultsThere were 292 participants (69 paediatricians). The majority (92.7%) were females and the median age for the paediatricians and nurses was 37 years (range 27–60) and 31 years (range 21–58), respectively. General paediatrics was the predominant speciality of the respondents (61.3%) and 59.3% had more than 5 years paediatric experience. Of the 28.8% of the responders who thought they have basic palliative care knowledge, 40.5% believed morphine used in palliative care is addictive, 34.9% thought palliative care hastens death, and 44.3% were neutral or agreed that palliative care is associated with euthanasia. Over a quarter of all respondents (28.2%) professed to be confident in providing palliative care and 30.1% were confident in providing bereavement support. Of the 29% paediatricians confident in providing palliative care, less than half were confident of controlling pain or dyspnoea at end-of-life. The most common perceived barrier to referral by paediatricians (79.4%) was the lack of accessible palliative care services.ConclusionThere is a lack of knowledge and understanding of palliative care among healthcare providers. Focused training and supportive policies are necessary to develop this service in Malaysia.