Introduction: The importance of Paediatric Palliative Care (PPC) is increasingly recognised worldwide, with the World Health Organzsation (WHO) and the American Academy of Pediatrics (AAP) endorsing the development and wide availability of PPC. When these children are in the terminal phase of their illness, PPC should be tailored to the different needs and desires of the child and the family, with the goal of providing the best possible quality of life (QOL) for the days that remain. Method: Malaysia has yet to develop a national PPC policy. In anticipation of this, as part of a needs based qualitative study, parents’ views were solicited, as to the unmet needs of their children during the terminal phases of their illness. A purposive sampling was conducted amongst fifteen parents of nine deceased children (ages 2-14 years, eight cancer, one Prader Willi Syndrome) who had received care in the Paediatric Department, Malacca General Hospital, a Malaysian government hospital. Two focus group discussions and three in-depth interviews were conducted, based on a semi-structured interview guideline. The interviews were audiotaped with permission and the tape recordings were transcribed verbatim. The data were managed and analysed by NVivo 9 software using a thematic analysis approach. Results: The frequently emerging themes were the strengths and weaknesses pertaining to the healthcare system, processes within palliative care. These were symptom control, closed communication and lack of support and anticipatory guidance as death approached. Conclusion: Dying Malaysian children and their families deserve to receive care that is more consistent with optimal palliative care.
Quality of Life ; child

Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be ‘Congenital malformations, deformations and chromosomal abnormalities’ 117 (37.1%), ‘Diseases of nervous system’ 76 (24.1%) and ‘Neoplasms’ 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with ‘Diseases of nervous system’ were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative.
Palliative Care