Purpose: This paper presents the components of a pediatric palliative care demonstration program
implemented in Seattle during the period 1999–2001. It reports findings from the evaluation
of quality of life and family satisfaction among enrolled participants. The program
was designed to enhance patient–provider communication using the Decision-making Tool
(DMT) and experimented with comanagement by clinicians and insurers to support decisionmaking
in advanced serious pediatric illness.
Design: The project design consisted of ethical decision-making, provider education, and
flexible administration of health benefits through co-case management between insurers and
care providers. The evaluation study design is a nonexperimental pretest, posttest design comparison
of pediatric quality of life and family satisfaction at program entry with repeated
measures at 3 months postprogram entry. Quality of life was measured with parent proxy reports
of health-related quality of life using the PedsQL™ Version 4.0, and family satisfaction
was measured with a 31-item self-administered questionnaire designed by project staff.
Results: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the
program over a 2-year period. Parents consented to participate in the evaluation study. Thirtyone
specific diagnoses were represented in the patient population; 34% were some form of
cancer. Improvements in health-related quality of life over baseline were observed for 21
matched pairs available for analysis in each domain of health-related quality of life; positive
changes in reports of emotional well-being were statistically significant. Improvements over
baseline in 14 of 31 family satisfaction items were statistically significant.
Conclusions: Pediatric palliative care services that focus on effective communication, decision
support, and co-case management with insurers can improve aspects of quality of life
and family satisfaction.
