Appendix A The International Children’s Palliative Care Network (ICPCN) charter of rights for life-limited and life-threatened children

  1. 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.
  2. 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.
  3. The child’s parents or legal guardians shall be acknowledged as the primary care givers and recognised as full partners in all care and decisions involving their child.
  4. Every child shall be encouraged to participate in decisions affecting his or her care, according to age and understanding.
  5. 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.
  6. 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.
  7. The child and the family shall be given the opportunity to consult with a paediatric specialist with particular knowledge of the child’s condition where possible, and shall remain under the care of a paediatrician or doctor with paediatric knowledge and experience.
  8. The child and the family shall be entitled to a named and accessible key-worker whose task it is to build, coordinate and maintain appropriate support systems which should include a multidisciplinary care team and appropriate community resources.
  9. 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.
  10. 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.

Adapted from the ACT Charter
October 2008

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