Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease.

DESIGN: Cross-sectional multicenter survey study of bereaved parents.

SETTING: Two tertiary care pediatric hospitals.

SUBJECTS: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact.

INTERVENTION: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites.

MEASUREMENTS AND MAIN RESULTS: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0-30 d). According to parents, 47% of children suffered "a great deal," "a lot," or "somewhat" during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as "poor" or "fair." Most parents (84%) described the quality of care delivered as "very good" or "excellent."

CONCLUSIONS: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.