Paediatric Palliative Care Team
Tuen Mun Hospital

Seamless palliative care makes kids’ lives complete

Each year, public hospitals in Hong Kong register around 250 deaths of patients under 18. Established with the mission to serve these unfortunate children, Tuen Mun Hospital Paediatric Palliative Care (PPC) Team believes that children with life‑threatening illnesses have full rights to live with their loved ones and enjoy a peaceful and dignified last journey.” The team strives to provide holistic care with seamless collaboration of the patient’s home, school and hospital.

Over 70% of paediatric patients who need palliative care service are non‑cancer patients. Most of them suffer from neurological, cardiac, respiratory or genetic diseases. Comprising members from different disciplines namely doctors, nurses, clinical psychologists, medical social workers, physiotherapists, occupational therapists, dietitians and speech therapists, the multidisciplinary PPC Team also works with Children’s Palliative Care Foundation to provide holistic palliative home care for patients and families, addressing their needs and choices.

Dr Li Chak‑ho, team leader and Consultant of Paediatrics and Adolescent Medicine Department explains the approach adopted by the team. “Since home and school are children’s favourite places, we adopt the approach of home‑school-hospital collaboration so as to achieve seamless care for sick kids. Our first patient, Wing (pseudonym), who has cerebellar atrophy, is an example. Wing was frequently sent to hospital due to seizure or chest infection and admitted to intensive care unit in several episodes. As Wing’s mother did not trust the special school, she stopped Wing from going to school and took care of her at home. She was exhausted looking after the girl. The PPC team decided to mediate and met with the school staff and the family. They communicated and agreed on the goal of care and emergency care plan. Finally, Wing attended school regularly and her mother became a volunteer at school to share her experience and help other parents.

Children with complex medical conditions require multidisciplinary management. To alleviate hassles of commuting, the PPC team collaborates with different specialities so that consultation and assessment can be arranged on the same day. Collaboration with the Children’s Palliative Care Foundation provides the team with 24‑hour home care support such as symptom relief and emotional support.

Taking into consideration factors such as disease prognosis, benefits and burdens of treatment, values and preferences of the patient, the team and family will discuss advance care plan together, such as the preference on tube feeding, intravenous or subcutaneous infusion, antibiotic treatment, use of non‑invasive positive pressure ventilation, and decision on ‘Do-Not-Attempt Cardiopulmonary Resuscitation’. “This is a sensitive topic, but since we have already established rapport and mutual trust with the parents, they understand that the medical team is doing the best for the kid. Usually, we have a smooth discussion,” says Advanced Practice Nurse Kwong Choi‑ha.

With the opening of Hong Kong Children’s Hospital, the team is delighted to see paediatric palliative care services in HA reorganised into a coordinated service network and benefit all patients and parents in need. They also hope that paediatric palliative care service can be extended to all paediatric departments in HA hospitals.