Paediatric palliative care (PPC) is a new development in Hong Kong. Hospital Authority set up the first PPC service at Hong Kong Children’s Hospital in 2019, with a designated team of doctor, nurses and social worker. Children with cancer is the major target group at the current phase of PPC development. There are many non-cancer conditions also require PPC service, severe cardiac and renal diseases are also included in the current service. In children, there are special groups of life-limiting conditions (LLC) which happen mainly in children, such as severe inborn error of metabolism, neurodegenerative disease and neuromuscular diseases. In western countries, the non-cancer conditions actually constitute more than 70% of the PPC workload. These LLC may continue for many months or years, and some may also survive beyond childhood with the advances in technological support, such as Duchene Muscular Dystrophy. The service model of PPC is family-centred, and parents are particularly important as the carers and also the sole decision makers for young children. Adolescent patients with life-threatening and LLC should be involved in the decision making which sometimes may be very challenging. PPC team must establish good relationship with the parents, and sometimes the grandparents who are the main carers. While some children with LLC stay mainly in the community, either at home or special residential schools/centres. The staff at special centres are now providing specialized care to these children, some may be on assisted non-invasive ventilator support, on gastrostomy feed and may need frequent suction of excessive secretion. Regular physiotherapy and occupational therapy is very important to children with multiple disability. The psychosocial burden of parents with children receiving PPC needs extra support by social workers and NGOs. A child receiving PPC service is having a long journey which requires support from medical, nursing, allied health, special school workers and NGOs. As some children on PPC now survive into adulthood, transitional care with input from adult PC is urgently needed.
