This Association is formed based on the need of providing a platform for health care providers, parents and volunteers to actively involving themselves in providing total care to all children and family who are facing the life-limiting* and life- threatening** illness in Malaysia, following the recommendation by the World Health Organization (WHO) 1998 of the definition of Paediatric Palliative Care (PPC) :
- Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.
- It begins when the illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
- Health providers must evaluate and alleviate a child’s physical, psychological and social distress.
- Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
- It can be provided in tertiary care facilities, in community health centers and even in children’s homes.
II. This Association will play the important role of collaborating with any paediatricians/physicians/volunteers that are providing paediatric palliative care in either government or private hospital; or non-government organization (NGO) or community health settings in whole Malaysia in term of four aspects:
- Advocacy - To increase public awareness on the importance of good symptom care, parental supports and end of life care for the children.
- Training and Education - Provide the frameworks of paediatric palliative training and education programmes, design the content of the training programme and the supervision of the training, as well as draft and advocate the policy, formulary and clinical guideline writing based on the needs of the society.
- Clinical Services - To form a role model of clinical service team (cultivate the evident-based practice). This will correlate and link with other paediatric palliative 2 teams in other centres in order to improve the quality of life for the suffering children and their family members; as well as promoting good partnership with other multidisciplinary team members, including parents, in decision making and work for the best interest of the children with life-limiting disease. This would include good symptom control and total care for their psychology, spiritual and social health.
- Research and Audit - To form a research team to further promote the improvement on care to the children with life limiting disease, as well as to understand the needs of services development through demographic data collection and to collaborate with other health centres for multi-centre research programmes.