The ICPCN Charter sets out the International standard of support that is the right of all children living with life limiting or life threatening conditions and their families.
THE ICPCN CHARTER OF RIGHTS FOR LIFE LIMITED
AND LIFE THREATENED CHILDREN
- Every child should expect individualised, culturally and age appropriate palliative care as defined by the World Health Organization (WHO) . The specific needs of adolescents and young people shall be addressed and planned for.
- Palliative care for the child and family shall begin at the time of diagnosis and continue alongside any curative treatments throughout the child’s illness, during death and in bereavement. The aim of palliative care shall be to relieve suffering and promote quality of life.
- The child’s parents or legal guardians shall be acknowledged as the primary care givers and recognized as full partners in all care and decisions involving their child.
- Every child shall be encouraged to participate in decisions affecting his or her care, according to age and understanding.
- A sensitive but honest approach will be the basis of all communication with the child and the child’s family. They shall be treated with dignity and given privacy irrespective of physical or intellectual capacity.
- Every child or young person shall have access to education and wherever possible be provided with opportunities to play, access leisure opportunities, interact with siblings and friends and participate in normal childhood activities.
- Wherever possible, the child and the family should be given the opportunity to consult with a paediatric specialist with particular knowledge of the child’s condition and should remain under the care of a paediatrician or a doctor with paediatric knowledge and experience.
- The child and the family shall be entitled to a named and accessible key-worker whose task it is to build, co-ordinate and maintain appropriate support systems which should include a multi-disciplinary care team and appropriate community resources.
- The child’s home shall remain the centre of care whenever possible. Treatment outside of this home shall be in a child-centred environment by staff and volunteers trained in palliative care of children.
- Every child and family member, including siblings, shall receive culturally appropriate, clinical, emotional, psychosocial and spiritual support in order to meet their particular needs. Bereavement support for the child’s family shall be available for as long as it is required.
With acknowledgement to the ACT Charter
“Palliative care for children is the active, total care of the child’s body, mind and spirit, and also involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether 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 centres, and in children’s homes.”
World Health Organization 2002