Helping parents prepare for their child's end of life: A retrospective survey of cancer‐bereaved parents

Abstract

BackgroundMost parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end‐of‐life communication and guidance for parents.MethodsCaregivers of a child who died from cancer were invited to complete a 46‐item survey through a closed social media (Facebook) group (“Parents who lost children to cancer”). In four months’ time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi‐square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.ResultsApproximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.ConclusionsThrough quantitative and open‐ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.

Longitudinal understanding of prognosis among adolescents with cancer

“…Furthermore, the majority of parents reported discussing prognosis with their child, with most parents reporting numerical discussion of prognosis. Our results suggest that, similar to parents, 20,21 adolescents fill gaps in their knowledge through alternate sources, with many deriving their understanding of prognosis from parents, other medical staff, personal research, or family or friends. Thus, adolescents frequently desire prognosis information, 9,11,12 but their needs are often unmet, which may influence personal goals of care 6 …”

“…Parents may be overly optimistic to protect their children, to reflect their hopes rather than their expectations, or because of a belief that their child is the exception 6,22 . Taken together, it seems that parents’ and oncologists’ expectations of treatment success may occasionally diverge from the expectations of their adolescent child, perhaps complicating decision‐making, particularly for adolescents with advanced cancer 6,21,23 …”

“…Together, these findings suggest that parents of adolescents might serve as gatekeepers of prognosis information 22 —parents who have communicated openly about prognosis with the oncologist may facilitate a more realistic understanding for their child. Yet, parents may feel unprepared to address their child's informational needs, particularly when the child has a poor prognosis, 21 and require support from healthcare providers to facilitate honest, developmentally appropriate communication with their child. Notably, the survey items used may not capture the nuances of complex conversations about prognosis.…”

Neonatal End-of-Life Symptom Management

“…They feel more prepared for the death, have less grief, and are more satisfied with the care their child received ( 2 , 52 – 54 ). One study of 131 bereaved caregivers of children who died of cancer revealed that they did not feel prepared for the medical needs of their child as they approached death ( 55 ). Parent who felt unprepared for the changes at the time of death perceived their child suffered more.…”

Supporting “good parent” beliefs with communication: Where do we go next?

“…In recent issues of Pediatric Blood and Cancer , two important articles further demonstrate this link between communication, decision making, and “good parenting” beliefs. In the first article, Wiener and colleagues 4 surveyed 131 bereaved caregivers of children with cancer. The authors examined how well prepared these parents felt to respond to their child's medical problems and emotional needs at the end of life.…”