PETALING JAYA: Nine million children with only six specialists in the country – this is the sad reality of paediatric palliative care (PPC) in the country.
As terminally ill children and their families quietly endure with minimal support, the crisis is hiding in plain sight.
With just six trained specialists nationwide and rising demand, experts like Dr Lee Chee Chan are sounding the alarm for urgent reform and public awareness before more children slip through the cracks.
Dr Lee is the only PPC specialist in public healthcare until two others joined this month.
“Our resources are very much stretched thin,” he told The Star.
The World Health Organisation defines palliative care for children as “the active total care of the child’s body, mind and spirit ... also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease”.
The aim of palliative care for children is to ensure the child is comfortable and improve their quality of life.
Dr Lee said that benchmarks are based on healthcare needs and the nation is very much below the global standards with 9.13 million children under 18 to six specialists.
In the United States, he said that one full-time PPC physician is recommended per 100,000 children.
“For a population of one million children, this would mean needing about 10 physicians,” he said, adding that Malaysia has only one such specialist for 1.5 million children.
He said there are only 21 government hospitals in Malaysia where a paediatrician, along with a nurse, has received training as part of the National Training Programme for paediatric palliative care to provide a basic level of paediatric palliative care services.
“There are three children’s hospice centres in Malaysia – Jalan Kuching in Kuala Lumpur, Klang in Selangor and Sibu in Sarawak.
“Two more are coming up in Penang and Kota Kinabalu in Sabah in September,” he said, adding that to meet the world estimate of one specialist to 300,000 children, Malaysia would need about 4.5 times more physicians to achieve global average.
While countries like Australia and the United Kingdom focus on multidisciplinary teams and equitable access, Malaysia is lacking in that.
“We need to integrate paediatric palliative care into our health system and expand our workforce.
“Unlike adults, where 80% of hospice patients have cancer, only 20% do in children.
“The remaining 80% suffer from rare genetic diseases that affect multiple organs, demanding different and comprehensive support.
“This is why hospice care plays a vital role in supporting families.
“Without hospice services, many children remain in hospitals, risking infection. We provide essential equipment and training to caregivers, allowing children to go home and live as comfortably as possible,” he said.
Dr Lee, who is also president of the Malaysian Association of Paediatric Palliative Care (Mappac), pointed out a critical barrier to the development of PPC in Malaysia.
“The sub-specialty isn’t fully recognised by the National Specialist Register, and it limits interest among paediatricians and restricts resources,” he said.
Recognition requires two training centres with two specialists each, and the process of achieving full recognition involves fulfilling specific criteria set by the National Specialist Register.
“Recognition is essential for attracting more specialists and securing dedicated funding.
“Many still misunderstand this field, associating it solely with end-of-life scenarios.
“Our role is to improve quality of life, whether the child lives for months or years,” he added.
Mappac vice-president Dr Ng Su Fang said the association’s goal is to expand services to all hospitals and district clinics, ensuring comprehensive support across the country.
For the purpose of raising funds, she said a cycling event has been set for tomorrow to help the first children’s hospice in Sabah.
Covering 600km from Kudat to Kota Kinabalu, the event will see 17 cyclists from Malaysia, Hong Kong, Singapore and America cycling over six days.
“With RM200,000 needed annually, this initiative is crucial for establishing the hospice. A charity dinner will also encourage public donations,” said Dr Ng.
