What impedes timely pediatric palliative care consults? A preliminary report


What impedes timely pediatric palliative care consults? A preliminary report


Marell P; Gupta S; Goloff N; Sherva K






child; conference abstract; education; female; human; major clinical study; male; medical staff; narrative; nurse; Palliative therapy; pediatric patient; quality of life; responsibility; terminal care


Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient and family. Studies have shown that despite the benefits of PPC, many patients do not benefit from timely consultation (Morita et al.). Little, however, is known about the reasons for this. Objective: The purpose of this QI project was to identify barriers to PPC to inform an intervention aimed at increasing timely consultations at our hospital. Methods: Our team surveyed members of the inter-professional healthcare team as well as patients/families to assess attitudes, knowledge, and barriers related to PPC. In addition, parents gave narrative feedback at a hospital parent advisory board meeting. Results: Survey of healthcare workers (n = 243) showed that nurses had the smallest percentage of very favorable opinions toward PPC (64%), with the NICU (65%) and the ED (57%) as the units reporting lowest in that category. Nurses also had the lowest percentage of “good” or “excellent” understanding of PPC (27%), with the NICU (29%) and the ED (29%) again reporting lowest in that category. Attitude was positively correlated with knowledge (figure 1): 93% of respondents who rated their understanding as excellent had a very favorable opinion of PPC. The top barriers to PPC consultation were not knowing whose responsibility it was to order a consultation (24%) and worry about undermining parental hope (19%). More than half (68%) of respondents indicated that they ask permission of the patient/family before ordering a PPC consultation. Respondents reported that PPC consultations generally occurred when curative interventions were no longer possible (37%) and during end-of-life care (24%). Survey of patients/families (n = 33) showed that only 30% had a confident understanding of PPC services and 55% had received information regarding PPC from medical staff. Seventy percent had a favorable view of PPC while 21% needed more information to form an opinion. Comments from the parent advisory board indicated that lack of information regarding PPC is the major barrier for PPC utilization for patients/families. Conclusions and future directions: These results indicate that attitudes toward PPC and lack of education regarding PPC are the most common barriers to timely PPC consultations. As well, lack of information is likely a major contributing factor to unfavorable attitudes. Our intervention will aim to improve knowledge about and thus attitudes toward PPC. With each intervention we will complete a Plan-Do-Study-Act (PDSA) cycle and evaluate its success in increasing timely PPC consultations, with the ultimate goal of improving quality of life and goal-oriented care for our pediatric patients.


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Marell P; Gupta S; Goloff N; Sherva K, “What impedes timely pediatric palliative care consults? A preliminary report,” Pediatric Palliative Care Library, accessed September 27, 2023, https://pedpalascnetlibrary.omeka.net/items/show/17006.