Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Reprinted with permission of the National Hospice and Palliative Care Organization (formerly National Hospice Organization) Alexandria VA. Contact Stephen Connor, PhD, at 703-243-5900 for permission to reprint. © Copyright 2000. All rights reserved. Developed by members of the NHPCO ChIPPS Work Group (Children's International Project on Palliative/Hospice Services). Final version is in: Children's International Project on Palliative/Hospice Services (ChIPPS). Compendium of Pediatric Palliative Care. Alexandria, VA: National Hospice and Palliative Care Organization, 2000, 3.

Palliative care principles can and should be applied to children with acute and curable conditions as well as those with incurable conditions. However, in this document the population being addressed is the population of children with conditions that are predicted to cause the child’s death prior to achieving adulthood.

Palliative care is defined as an "active, total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of the quality of life (QOL) for the child and support for the family and includes the management of distressing symptoms, provision of respite, and care through death and bereavement".¹ "The goal of palliative care is the best quality of life for patients and their families. Many aspects of palliative care are applicable early in the course of disease treatment".²

1. The sole admission criterion for palliative care programs is that the child is not predicted to survive to become an adult. Prognosis for short-term survival should not be required, as it interferes with the provision of critical support from the time of diagnosis.

2. Palliative/hospice services should be accessible to children and their families in a setting that is desired and/or appropriate to their needs, whether home, inpatient hospice, hospital or intensive care unit. Research seems to indicate that the home should generally be considered the preferred site of death as bereavement outcome is enhanced for family members who otherwise may have limited access to the child.

3. Care provided focuses on the relief of physical, social, psychological and existential or spiritual pain for the child and the family, whether they have chosen to continue with life-prolonging therapies or not.

4. Palliative care is not directed at foreshortening life. Symptom management is accomplished through means acceptable to the patient and the family.

5. Children and their families should have access to a team of caregivers, or at minimum a "keyworker" whose care is seamless, i.e., cares for them where they prefer to be.

6. The unit of care is the child and the family. Family is defined as the persons who provide physical, psychological, spiritual and social comfort to the child, regardless of genetic relationships.

7. Care is designed to enhance the quality of life for the child and family; the child and family must be included in designing the priorities for care after being given as much information as is desired regarding the disease and treatment options.

8. The care team recognizes the individuality of each child and his or her family, and upholds their values, wishes and beliefs unless significant harm is at hand.

9. Pediatric palliative care is optimally delivered by an interdisciplinary team with pediatric knowledge, generally including trained volunteers, social workers, nurses, physicians and spiritual counselors.

10. The palliative care team is available to the family 24 hours a day, 365 days a year.

11. The provision of respite, whether for a few hours or a few days at a time, is an essential service in palliative care.

12. Families should be able to refer themselves to a hospice/palliative care program.

13. Providing pediatric palliative care is difficult, though rewarding work. Direct caregivers must be provided formal or informal psychological support and supervision.

14. Regardless of cause of death, supportive and bereavement care should be provided to all those who are affected by the child’s death, for as long as they need it.

References

1. Association for Children with Life-threatening or Terminal Conditions and their Families, Royal College of Paediatrics and Child Health. A Guide to the Development of Children's Palliative Care Services. 1997.
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2. World Health Organization. Cancer Pain Relief and Palliative Care in Children. Geneva, Switzerland, 1998.
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