AHRQ Innovations Exchange | Pediatric Palliative Care Program Improves Communication, Reduces Patient Suffering, and Helps Parents Feel More Prepared for Child's End-of-Life Experience

Pediatric Palliative Care Program Improves Communication, Reduces Patient Suffering, and Helps Parents Feel More Prepared for Child's End-of-Life Experience

Snapshot
Summary
The Pediatric Advanced Care Team (PACT), a joint project of the Dana-Farber Cancer Institute and Children’s Hospital Boston, is a pediatric palliative care consultation service that addresses the physical, psychosocial, and spiritual needs of children with life-threatening illnesses and their families. PACT services focus on providing intensive symptom management as well as honest, complete, and sensitive communication with patients and families; other PACT activities include clinician education about, and development of institutional improvements in, palliative care. A retrospective cohort study found that PACT improved communication and documentation related to end-of-life care, helped ease patient suffering at the end of life, and helped parents feel more prepared for their child’s end-of-life experience.

See the Description section for new information about PACT's Interdisciplinary Pediatric Palliative Care Fellowship; the Staffing section for new staffing information; and the Results section for updated information about program growth as well as new family and provider satisfaction survey data (updated October 2009).

Evidence Rating
Moderate: The evidence consists of before-and-after comparisons of key outcomes, including levels of communication and documentation, parental perceptions of their child's suffering, and parental preparation for their child's end-of-life experience.

Developing Organizations
Children's Hospital Boston; Dana-Farber Cancer Institute

Date First Implemented
1997

Patient Population
Age > Newborn (0-1 month); Infant (1-23 months); Preschooler (2-5 years); Child (6-12 years); Adolescent (13-18 years); Geographic Location > City; Vulnerable Populations > Children; Intensive care unit patients; Terminally ill

What They Did
Problem Addressed
While adult patient populations have benefited from recent advances in pain management and palliative care, significant opportunities exist to improve palliative care for children.
Significant need for pediatric palliative care: More than 300,000 U.S. children are living with potentially fatal conditions and could benefit from palliative care; approximately 55,000 children die annually.1

Inadequate pediatric palliative care: Studies have found that children dying of cancer suffer from substantial pain, fatigue, and anxiety at the end of life and often die in an institution (despite preferring to be at home); in addition, communication with parents about the dying child's prognosis is often inadequate.2,3

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AHRQ Innovations Exchange | Pediatric Palliative Care Program Improves Communication, Reduces Patient Suffering, and Helps Parents Feel More Prepared for Child's End-of-Life Experience