Nurses responsible for caring for pediatric patients during end-of-life care find themselves in any number of ethical dilemmas as they attempt to balance providing care, educating family and patients spanning a large developmental spectrum, working collaboratively with extensive medical teams, ensuring proper therapy and bereavement services for parents and siblings, as well as advocating for the voices of their patients who do not yet have legal authority to make decisions regarding their care. These issues are multifaceted and require considerations from multiple disciplines if proper assessment of potential barriers to patient advocacy is desired. This thesis explored the barriers perceived by nurses’ caring for pediatric patients during end-of-life at Maine Medical Center and Eastern Maine Medical Center. A survey was sent to 121 nurses’ on the pediatric floors and PICUs at these two institutions with a response rate of 36.7%. This study identified the top five barriers at MMC which included parents/guardians not ready to acknowledge their child has in incurable disease, physicians not initiating a discussion with family or patient on forgoing life sustaining treatments, physicians who are overly optimistic to the family about the child surviving, continuing life saving measures in a child with a poor prognosis due to real or imagined threat of future legal action by the family, and family members not understanding what lifesaving measures means. The top four barriers at EMMC included parents/guardians not ready to acknowledge their child has in incurable disease, the nurses’ workload being too heavy to adequately care for the dying child and grieving family, one parent is ready to “let go” before the other parent is ready, and continuing painful treatments or procedures when the patient has expressed interest in stopping. This thesis aims to highlight the barriers to pediatric patient advocacy during end-of-life care perceived by nurses’ with hopes for further research to identify solutions to these barriers.
Layla, Eaton J., "Nurses' Perceptions of Barriers to Pediatric Patient Advocacy in End-of-Life Care" (2015). Honors College. 208.