Background Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. This study reviewed the paediatric palliative care program in Hong Kong (HK).
Objectives Reviewed the characteristics and service need of children receiving PPC in a regional hospital in HK.
Methods This is a retrospective chart review. All children aged less than 18 years old receiving PPC at a regional hospital in HK from 2015 to 2020 were included.
Results Fifty-eight children received PPC service in the study period. Eight cases were referred for bereavement support after death and were excluded. A total of 50 children (M : F = 24 : 26) were enrolled. Median age of referral to PPC service was 8 years 9 months. Average duration of follow up was 1 year 4 months (median 9 months). Underlying diseases included neurological diseases n=20 (40%), congenital malformations and chromosomal anomalies n=10 (20%), neoplasms n=10 (20%), endocrine and metabolic conditions n=7 (14%), perinatal conditions n=2 (4%) and external causes of morbidity n=1 (2%). Sources of referral included intensivists (32%), general paediatricians (30%), oncologists (14%), neonatologists (12%), neurologists (8%), endocrinologists (2%) and respirologists (2%).
Thirty-nine patients (78%) resided in the community (home 48%, residential schools 30%). Majority of children (60.8%) had high medical needs during their daily care, including wheelchair-bound n=34 (66.7%), gastrostomy feeding n=17 (33.3%), nasogastric tube-feeding n=8 (15.7%), non-invasive ventilatory support n=13 (25.5%) and tracheostomy with ventilatory support n=5 (9.8%).
Advanced care plan (ACP) was discussed with 25 (50%) families. Among the 18 cases who died while receiving PPC, Do-Not Attempt Cardiopulmonary Resuscitation (DNACPR) was discussed with 15 (83.3%) of them. DNACPR had been discussed with 37.5% of the surviving cases. Median time from referral to death varied with the diseases: neoplasms (19 days), neurological conditions (54 days), congenital malformations and chromosomal anomalies (65 days), endocrine and metabolic conditions (174 days), external causes of morbidity (424 days). Forty-five percent of children passed away in the general paediatric wards (38.9%), Accident and Emergency Department (5.6%) while the remaining children passed away in the Intensive Care Units (44.4% in Paediatric ICU, 11.1% in Neonatal ICU). No patient died at home. Pain control medications were given during end-of-life period in 30.8% of cases.
Conclusions This review showed majority of children on palliative care stayed at home or residential schools and had high medical needs. Community support to these families was important. The time from referral to death was short. Advanced Care Plan was discussed with only half of the families. Less than one-third of patients received pain control at end-of-life. Paediatric palliative care service is under-developed and has to be largely promoted in Hong Kong.
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