Handbook of Children’s Palliative Care Malaysia

One day in February 2018, when I just came back from United Kingdom to Malaysia.

“Doctor, can you help a child with cancer who is in severe pain?” A patient’s mother asked me while I was in the ward. It turned out that the child was not even in the hospital, but at home. His home was in a rural area in Pahang, a neighbouring state. It would take at least 4 hours drive to reach his home. This child’s mother had earnestly asked for help through their parent support group.

I visited the child at his home one week later. He had a big tumour over his right thigh and had endured severe pain for the past 6 months. The pain caused great suffering to him and his whole family. Although he had been prescribed with oral morphine, the pain control had not been optimised. The family did not bring the child for further oncology follow up because they thought that the hospital could no longer offer any treatment for the child. There had not been any arrangements to engage the local community health team in the care for this child. A comprehensive assessment of the child’s biopsychosocial and spiritual needs was done. The pain medications were optimised and the family was referred to the nearby community health team to help with wound care.

“We didn’t realize that palliative care is available for children in Malaysia. My child is sleeping better now after you adjusted his medications. We feel better supported after the local community health team visited our home,” the child’s mother told me in tears.

This is just the one of many real life stories I encountered every day. The major challenge we face in this country is the lacking of awareness and understanding of paediatric palliative care (PPC) for both public and healthcare workers. Besides, there are insufficient supports of symptom management for children at home in the community (symptom management remained at hospital level only) and the training opportunity for hospital and community clinic staffs. In short, there is a major gap of transition care between hospital and community, especially for those children with life limiting disease.

An estimated 28 out of every 10 000 Malaysian children aged between 0-19 years will require paediatric palliative care (Connor, Downing & Marston 2017). Base on this need, we formed the National Paediatric Palliative Task Force Committee, supported by Medical Division of Ministry of Health Malaysia. The first completed task was the formation of National Palliative Care Policy and Strategic Plan 2019 -2030 with the partnership with adult palliative care colleagues. PPC was specified as one of the 7 major pillars in this policy, with three major areas targeted for development: hospital-based, transition care and community based PPC.

The idea to write a practical handbook for Malaysian healthcare providers was birthed to facilitate training throughout the country. The work was initiated via a workshop in 2019, where a group of diverse healthcare professionals came together to prepare an initial draft for the handbook. These included paediatricians, family medicine specialists, nurses, physiotherapist, occupational therapist, medical social worker, paediatric pharmacist, and clinical psychologist. They were assigned to write the chapters for four main modules: Introduction to Paediatric Palliative Care Concepts, Symptom Management, Transition Care and End of Life Care. This was followed by meticulous editing and reviewing over a year. The Association of Paediatric Palliative Medicine (APPM) has kindly provided us permission to include the APPM formulary into the handbook. The handbook was launched by the Ministry of Health Malaysia in April 2021, as a reference to support healthcare providers who worked with children with PPC needs. The handbook is freely available for download in PDF format ( https://www.moh.gov.my/index.php/database_stores/attach_download/681/72 ). A thousand hard copies of the handbook was printed as a contribution from Malaysian Association of Paediatric Palliative Care  (MAPPAC), to be distributed to major public hospitals and community health offices throughout the country.

This handbook will be used as a core teaching material for the next step of training for PPC in Malaysia. The inaugural National Training Programme for Paediatric Palliative Providers (NTP) will be held at the end of November 2021. This programme is targeted at doctors, nurses and allied health professionals from hospitals and community health clinics, to equip them with basic PPC skills required for providing at least level 2 PPC at their respective institutions. The programme will be conducted using lectures, case discussions, demonstrations and role play sessions over two days, followed by theory and practical skills assessment at the end of the training.

It is hoped that the handbook will achieve its objectives to support training efforts for healthcare providers and enable them to offer PPC for children when the need arises. We welcome your comments and suggestions for this handbook for further improvements in future editions.

Thank you

Dr Lee Chee Chan

Paediatric Palliative Paediatrician

Chief Editor of Handbook of Children’s Palliative Care Malaysia

Chief Trainer for National Training of Paediatric Palliative Provider Programme

President of Malaysian Association of Paediatric Palliative Care

Connor, S.R., Downing, J. & Marston, J. 2017. Estimating the Global Need for Palliative Care for Children: A Cross-sectional Analysis. Journal of Pain and Symptom Management 53(2): 171–177.