Goals of Care Rated by Parents of Children Receiving Pediatric Palliative Care: A Cohort Study Over Two Years (RP409)

Abstract

Outcomes 1. Illustrate the value of assessing the importance that parents of children with serious illness place on several goals of care 2. Argue for respectful and routine reassessment of parents’ goals of care for their children with serious illness Importance How parents with children receiving pediatric palliative care (PPC) prioritize goals of care and how their priorities change over time are not known. Objective(s) To determine parental prioritization of goals of care and patterns of change over time. Method(s) Multicenter cohort study with data collected at 0, 2, 6, 12, 18, and 24 months from parents of patients, birth to 30 years of age, receiving PPC services from 7 PPC programs based at children’s hospitals. Using discrete choice experiment methodology, parents scored the relative importance of five preselected goals of care (quality of life, health, comfort, disease modification, and life extension). Importance scores for each goal could range from 0 (lowest) to 100 (highest). Results 664 parents of 589 patients reported on goals of care. Median patient age was 4.2 years, and 73% were White. At baseline, parents rated quality of life as the most important goal (mean score 30.7), followed by health (25.6), comfort (21.8), disease modification (12.1), and life extension (9.9). Over the 2-year follow-up period, quality of life became more highly rated at each follow-up by 0.12 points (95% CI 0.08, 0.16), while the importance rating of life extension dropped by –0.12 (95% CI –0.17, –0.07); the importance scores of other goals did not change. When a parent gave the five goals similar importance scores at one point in time, at a subsequent time point they were more likely to reshuffle their prioritization of goals to a greater degree (P < .001). Conclusion(s) Parents with children receiving PPC placed the highest value on quality of life and the second highest on health. When they have less clear goal prioritization, future goal prioritization was more likely to change to a greater degree. Impact These findings highlight the importance of quality of life and health, and they argue for respectfully reassessing goals of care with parents over time to guide appropriate clinical intervention.