Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors’ and parents’ roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents’ experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process.

A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed.

Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child’s condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people’s actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention.

A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician’s support for parents as they care for their child.

Despite growing recognition of the importance of communication with children with life-limiting illnesses and their families, there has been limited research that includes the child's perspective. The purpose of the current study was to identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.

This qualitative study reports on the first 20 parent and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9-21 years) with a poor prognosis (physician reported likely <20% chance of survival beyond 3 years) from two children's hospitals and one pediatric hospice in Los Angeles, California. Perspectives on physician communication were elicited from children's and parents' individual narratives, recorded, coded, and analyzed using qualitative grounded theory methodology.

Both children and parents identified five domains of physician communication deemed to be highly salient and influential in quality of care. These included relationship building, demonstration of effort and competence, information exchange, availability, and appropriate level of child and parent involvement. Parents identified coordination of care as another important communication domain. The characteristics of physicians that were deemed most harmful to satisfying communication included having a disrespectful or arrogant attitude, not establishing a relationship with the family, breaking bad news in an insensitive manner, withholding information from parents and losing their trust, and changing a treatment course without preparing the patient and family.

The six positive communication domains are areas for clinicians to recognize and monitor in communicating with children and families in the pediatric palliative care setting. Knowledge of the qualities of communication that are satisfying to and valued by children and their parents have the potential to lead to more effective communication around the difficult decisions faced by physicians, parents, and children with life-threatening conditions.