Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review.

ABSTRACT

PROBLEM: Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). ELIGIBILITY CRITERIA The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008. SAMPLE Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients. RESULTS: Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a 'good parent' to a child at EOL in the way they see fit than HCP recommendations or 'medical facts'. Parents need HCPs to treat them as allies, communicate well, and be trustworthy. CONCLUSIONS: Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature. IMPLICATIONS Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication.