Background: Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of mortality throughout their lifespan, particularly in their first year of life. The early involvement of pediatric palliative care (PPC) for children with SV physiology allows PPC providers to establish a relationship with the family and provide continuity throughout their journey. The intense care needed for these children and families predicates the need for PPC consults to be routine; however, medical staff are reluctant to broach the concept of PPC to families because of the association with end-of-life care. Purpose: The purpose of this article is to describe a quality improvement project of early integration of PPC with single ventricle (SV) patients, resources needed, challenges associated with assimilating this specialty into the standard of care, and recommendations for future practice. Methods: The SV and PPC teams collaborated to expand the support given to SV families. Education was undertaken with cardiology and PPC providers to understand the goal of consistent PPC consults initiated at birth for SV patients. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by close monitoring and requesting consult orders from the front-line providers. Results: PPC consultation increased significantly throughout the project period to reach nearly 100% adherence for PPC consults by cardiology providers shortly following admission. In addition, mean days to consult decreased dramatically over the 24 month project period to a current average of four days into the patient’s hospitalization; this data suggests more consults were being placed routinely versus following an acute event. Data indicates that patients are being followed by the PPC at an earlier age in their SV journey, which allows for more opportunity to provide meaningful support for these patients and families. More information is needed to identify the impact of PPC consultation as data presented in this paper is reflective of adherence to routine consultation as a new standard of care, not on the impact of the quality of care provided during their index hospitalization. Conclusion: The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a relationship with the family and provide continuity throughout their journey in a proactive manner rather than reactive. The development of the collaboration of the SV team and the PPCT may function as a basis for continued integration of pediatric palliative care into other chronic illnesses as the standard of care. The concept of pediatric palliative care should no longer be identified as being for those that have given up hope, but instead for those who seek an improved quality of life.
Early Integration of Palliative Care in Single Ventricle Families: A Quality Improvement Project for Enhanced Family Support
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Jo Ann Davis, Amy M. Garee, Alice Bass; Early Integration of Palliative Care in Single Ventricle Families: A Quality Improvement Project for Enhanced Family Support. Pediatrics July 2020; 146 (1_MeetingAbstract): 223–226. 10.1542/peds.146.1MA3.223
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