Objective: This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system.
Methods: Anonymous validated surveys were sent electronically to inpatient nursing unit distribution lists (n = 1315). Reminders were sent through e-mail twice over a two-month data collection period.
Results: Response rate was 20.9% (275/1315) with 45.2% of responses from critical care units and 21.6% from hematology/oncology units. Of the participants, 58.2% (n = 160) had ≥10 years nursing experience, 58.5% (n = 161) had one to five patients die in the past 12 months, and 50.2% (n = 138) had one to five patients receiving subspecialty pediatric palliative care in the past year. Approximately one-half of the participants reported 3 of 26 barriers listed on the study survey as frequently or almost always occurring, including (1) family preference for more life-sustaining treatment than staff (n = 177, 64.8%), (2) family not ready to acknowledge incurable condition (n = 175, 64.1%), and (3) parent discomfort with possibility of hastening death (n = 146, 53.7%). Study findings were similar between 2002 and 2017, particularly in the extremes of the most and least commonly cited barriers.
Conclusions: Barriers to palliative care for hospitalized children persist and commonly include perceptions that families deny, prefer, or have discomfort with forgoing life-sustaining treatments. Increasingly, studies have shown that families can be simultaneously hopeful and aware of their child's worsening health. Further palliative care education and research about these barriers and their impacts are necessary to support seriously ill children and their families.
Keywords: barriers; pediatric end-of-life care; pediatric palliative care; uncertain prognosis.