End-Of-Life Discussions and Advance Care Planning for Children on Long-Term Assisted Ventilation with Life-Limiting Conditions

Abstract

Families of children with life-limiting conditions who are on long-term assisted ventilation need to undertake end-of-life advance care planning (ACP) in order to align their goals and values with the inevitability of their child's condition and the risks it entails. To discuss how best to conduct ACP in this population, we performed a retrospective analysis of end-of-life discussions involving our deceased ventilator-assisted patients between 1987 and 2009. A total of 34 (72 percent) of 47 study patients were the subject of these discussions; many discussions occurred after acute deterioration. They resulted in directives to forgo or limit interventions for 21 children (45 percent). We surmise that many families were hesitant to discuss end-of-life issues during periods of relative stability. By offering anticipatory guidance and encouraging contemplation of patients’ goals both in times of stability and during worsening illness, health care providers can better engage patients’ families in ACP. As the child's condition progresses, the emphasis can be recalibrated. How families respond to such encouragement can also serve as a gauge of their willingness to pursue ACP.

Keeping all options open: Parents’ approaches to advance care planning

“…Most decisions were made relatively late in the child's illness. Similar findings emerged from a review of medical records of children with a LLC and from interviews of caregivers of a child with cystic fibrosis, who recommended starting discussions about treatment options earlier . However, it is questionable whether the parents in our study would have welcomed earlier discussions, because even when ACP discussions were offered and held, most wished to keep their options open, and parents found it difficult to make decisions in advance of situations they still regarded as hypothetical.…”

The importance of advance care planning for children with chronic respiratory failure

“…Too often, we forego questions about the rituals, people, and environment that a family values at the time of death until an acute decline or cardiorespiratory arrest. This suggests we are missing opportunities to initiate these discussions during times of relative stability 10 …”

Decision‐making and future planning for children with life‐limiting conditions: a qualitative systematic review and thematic synthesis

“…;Gibson 2001;Jackson et al 2008;Dellon et al 2010;Edwards et al 2012;Noyes et al 2013) and may impact on perceived choice in the decision(Sharman et al 2005). Prognostic uncertainty also influences decisionmaking, making it more difficult(De Graves & Aranda 2005;Kirschen & Walter 2015).…”