Trends in Palliative Care Research 2021; Issue #05

Commentary by Laurie Lee, Pediatric ICU Nurse Practitioner, clinician scientist and director of the Alberta Children’s Hospital PICU Research Program

Feature Article:

Parsons, E., & Darlington, A. S. (2021). Parents’ perspectives on conflict in paediatric healthcare: A scoping review. Archives of Disease in Childhood, (no pagination).

View the Issue #5 Citation List in the Library

View a PDF of the Issue #5 Citation List

This is an important and insightful paper that deepens our knowledge and understanding of the perspective of parents on conflict during end of life decision making in the pediatric intensive care unit. With more main stream media coverage of these types of conflict, this topic is relevant and timely. Very little is understood about the factors that lead to these conflicts and how best to prevent and manage them. In the recent decades, the care of critically ill children has improved and our ability to support failing organs has advanced. With these advancements have come increasingly difficult decisions around continuation and cessation of life sustaining therapies. Conflict around these decision can often arise both within the healthcare team and between the healthcare team and the family. This conflict has significant impact on the patient, their family and those providing care at the end of their life.  This scoping review identified a paucity of literature exploring the parental view. Using a sound methodology and a thorough literature search they identified 10 papers that included parental views on conflict during end of life decision making in pediatric critical care. Though this was not the primary objective of any of these papers, which is a limitation of this review, some important themes were identified.

The authors summarize the themes identified in the literature and the implications they have for how we can structure our interactions and communications with parents to avoid and mitigate these conflicts. The themes identified included communication breakdown, trust, suffering, perceptions of best interest, disagreements about treatment, spirituality, perceptions of decision making, and positive influence of disagreements. Communication breakdown and trust aligned well with previous literature on conflict from the viewpoint of healthcare professionals, however an important insight identified by the authors was the negative impact of lack of continuity of care on the ability for parents to trust their caregivers. There were also two studies that identified a history of having to “fight” for their child building an adversarial foundation for parents of children with intellectual disabilities. Recognition of this history is important to guide healthcare professionals in having these discussions moving forward. Another important theme was that of suffering and the identification that parent and healthcare professionals’ assessment of suffering did not often align and that this was a source of conflict. In disagreements about treatment a key finding in this study was that parents are guided more by their own observations than by the information provided to them by healthcare professionals. This is in part because of their inability to retain this information due to exhaustion, stress and trauma. This review of the differing perspective of parents can help inform communication and relationship building with parents in an effort to prevent and mitigate conflict.

Parsons and Darlington provide a thorough review of the current scope of literature on this topic and provide practical applications of what is known. However, given the absence of any studies for which this important topic was the primary objective and the small number of participants in each study it is unclear how generalizable this data is. What is demonstrated is that the parental view and that of the healthcare professional do not always align and this is an important contributor to conflict during end of life decision making. More research is needed in order for us to understand the view of parents as well as how we can adapt our communication and therapeutic relationship to better support families in making these difficult decisions. Through a better understanding of the parental view point, perhaps we can prevent and mitigate these conflicts that we know are so very distressing to the patient, family and healthcare team.