A charter for the rights of the dying child

The 3 May issue of The Lancet reports that a group of professionals working with children affected by life limiting conditions in Italy have developed a charter for dying children. The project has been supported and promoted by the Maruzza Lefebvre D’Ovidio Foundation with the goal to develop a document that could be applied in any clinical situation or circumstance.

The article describes the four steps taken by authors Franca Benini, Roberta Vecchi and Marcello Orzalesi to develop this document. This has involved an extensive literature review, drafting, revision and integration of comments and feedback before approval.

The authors took into consideration how devastating an event the death of a child is for all involved which sometimes results in the people closest to the child not being willing to accept or recognise that death is a reality. 

The charter proposes ten fundamental rights for children who are approaching the end of their lives, each with a series of duties.

The rights of the dying child—the Trieste Charter proposal

1. To be considered a person until death irrespective of age, location, illness, and care setting
2. To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care
3. To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand
4. To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death
5. To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account
6. To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices
7. To have a social and relational life suitable to his or her age, illness, and expectations
8. To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness
9. To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family
10. To have access to child-specific palliative-care programmes that avoid futile or excessively burdensome practices and therapeutic abandonment

The authors feel strongly that the charter will have achieved its purpose when every individual caring for a dying child is capable of staying near the child until the last moments of his or her life, prepared to accept his or her death, ensuring both respect and dignity.

Click here to read the full article.