A Review on Paediatric Palliative Care Program in Tuen Mun Hospital

Abstract Description

Authors (including presenting author) :

Lee TYH(1), Man SS(1), Kwong CH(1), Li CH(1)

Affiliation :

(1)Department of Paediatrics & Adolescent Medicine, Tuen Mun Hospital, Hong Kong

Introduction :

Paediatric palliative care (PPC) focuses on the enhancement of quality of life for children with life-limiting diseases and support to their families. A PPC program was set up in Tuen Mun Hospital in 2015 and provided multidisciplinary services to children with malignant or non-malignant diseases.

Objectives :

This is a review on the characteristics and service needs of children of the PPC program.

Methodology :

This is a retrospective chart review. All children aged less than 18 years old receiving PPC at Tuen Mun Hospital from 2015 to 2020 were included.

Result & Outcome :

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. Median duration of follow up was 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%).
Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR) was carried out in 83.3% (n=15) of the 18 cases who passed away during the study period. DNACPR was agreed by 37.5% of the surviving cases. Median time from referral to death varied with diseases: neoplasms (19 days), neurological conditions (1 month 24 days), congenital malformations and chromosomal anomalies (2 months 5 days), endocrine and metabolic conditions (5 months 24 days), external causes of morbidity (14 months 4 days). The two children suffering from perinatal conditions were still surviving.
Nine children (50%) passed away in the Intensive Care Units (7 in Pediatric ICU, 2 in Neonatal ICU). Of these cases, 8 (88.9%) of them were ICU patients at the time of referral to PPC. For non-ICU patients, 8 (88.9%) of them passed away in the general wards. The remaining case died unexpectedly at home. There was no planned home death in our cohort.

Conclusion: This review was the first study focusing on paediatric palliative care program for both oncology and non-oncology paediatric patients in the Hospital Authority. It showed that PPC service supported majority of children with complex chronic medical conditions to be looked after at home or residential schools despite their high medical needs. DNACPR wishes were fulfilled in over 80% of the death cases, and close to 90% of non-ICU patients passed away peacefully in the general wards. Paediatric palliative care service has to be largely promoted in Hong Kong.