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

Children's Hospital and Health Center
Children's Program of San Diego Hospice and Children's Hospital San Diego
David Sine, MD, FAAP, BSN, RN, Medical Director
3020 Children's Way, MC 5064
San Diego, California 92122
www.chsd.org/body.cfm?id=35&action=detail&ref=48

The Children's Program is a joint endeavor between San Diego Hospice and Children's Hospital of San Diego. It began in 1997, after San Diego Hospice had been informally providing its services to the Children's Hospital for more than 10 years. The program functions on a referral/consult basis and conjoins the palliative medicine strength of a well-known state-of-the-art hospice with the pediatric expertise of a Children's Hospital. Parts of the program are housed at both sites.

The program's strength lies in its ability to be flexible in meeting the needs of the children and families in its care. This has resulted in parent-driven and parent/child-focused innovative programs of care. Two such programs that grew out of direct need are the Early Intervention Program (EIP), a program that reaches out to parents who have been informed that their unborn child has a life-limiting illness, and the Compassionate Extubation Program, which gives families the choice to take their ventilated child home or to a home-like environment, to die among family and friends.

Families involved with the Children's Program are supported throughout the child's illness and following death or "graduation" from the program. Children who graduate are often referred to the Reach Program for medically fragile children, run by nurse practitioners who conduct home visits and supervised by the same physicians as provide hospice care. Both San Diego Hospice and the Children's Hospital have bereavement programs, which are slightly different from one another yet complementary, and which thereby allow the families more choice.

The two facilities are focused on developing measurable and replicable aspects of the program, including tools to measure the effectiveness of these interventions. In addition, the leadership of the Children's Program are among seven children's hospital teams participating in the Initiative for Pediatric Palliative Care (IPPC), a family-centered, pediatric palliative care project led by Education Development Center (EDC), in partnership with the National Association of Children's Hospitals and Related Institutions, the Society of Pediatric Nurses, and the New York Academy of Medicine.

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