The voices in this issue of the PDIA newsletter movingly describe the bereavement of both children and parents and the anguish of health care providers who must try to ease the suffering of the dying young and heal the grieving young. The dying child is an unimaginable trial and tribulation for parents and caregivers who find it impossible to comprehend the loss of someone who has barely lived. And so too often in our fight to save the child, which may be beyond our skills, we ignore the child’s pain, which we are quite capable of reducing.

Fortunately, more and more people are beginning to recognize this dilemma and to find ways to improve the end-of-life care of children. The story on page 7, "The Dying Child," reports on PDIA faculty scholars who are advancing programs for pediatric palliative care.

There are many noteworthy developments in the growing movement for pediatric palliative care. The Children’s Hospice International, working closely with HCFA and Congress, recently announced a $1 million federal appropriation for Children’s Hospice Demonstration Model Programs. The Program for All-inclusive Care for Children and their Families (PACC) will offer an opportunity to overcome existing roadblocks to appropriate care for children and their families, and will promote the provision of a continuum of care from diagnosis through bereavement.

Other foundations such as the Robert Wood Johnson Foundation are funding local and national initiatives in pediatric pain and palliative care. Grassroots organizations such as Partnership for Caring and Americans for the Better Care of the Dying are drawing attention to the special needs of children for appropriate palliative care.

These are all hopeful signs. We must persevere in bringing symptom control, psychosocial support, and palliative care into the routine care of the seriously ill child. There is no reason why children in our care should suffer needlessly as they lay dying.

A related story on page 8 reports on what New York State officials and medical schools throughout the state are doing to improve palliative care education so that health care providers learn how to properly care for the dying–children as well as adults.

Kathleen M. Foley, M.D.

PDIA Director

Read the newsletter (archived material)