Care Goals and Decisions for Children Referred to a Pediatric Palliative Care Program

Abstract

To describe goals of care for children with complex, life-limiting conditions and to assess the variables that may influence these goals. Goals of care were elicited from the parents and children with complex, life-limiting conditions during initial palliative care consultation. Data abstracted included: diagnoses, demographics, time from diagnosis until initial palliative care consult, spirituality status, resuscitative status, and disposition at discharge. Goals of care were categorized into one of four quality-of-life domains: 1) physical health and independence, 2) psychological and spiritual, 3) social, and 4) environment. Summary statistics were prepared and comparisons were made between the four categories of goals. Descriptive statistics were utilized to explore potential associations with a decision to pursue full medical support. One hundred and forty goals of care were obtained from 50 patients/parents. The median patient age was 4.6 years. Thirty-seven patients had significant cognitive delay/impairment. Neuromuscular disorders accounted for more than half of the diagnoses. Forty-nine patients identified at least one goal pertaining to physical health and independence. This was significantly more than any other category (p < 0.0001). Thirty-three of the 50 patients (66%) opted for full medical support at the time of initial consult. Children with complex, life-limiting conditions and their families referred to a palliative care service commonly verbalize goals related to health maintenance and independence. Anticipating this expectation may foster communication and improve patient care.