Pediatric Cardiac Advance Directives: Early Intervention Palliative Care Conversations

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Harmon, Adam

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2021-05-14

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Congenital heart defects in the pediatric population are increasing in prevalence. As a result of these diagnoses, cardiac patients are at a higher risk of death, with or without surgical interventions. Patients and families need to be prepared for these adverse events and be educated on the potential interventions that could support symptom control and facilitate decision-making, when the patient nears end-of-life. The pediatric population is undereducated in the realm of advance directives and multiple barriers prevents these conversations. The purpose of this project is to start the conversation around advanced directives earlier and intervene during inpatient admissions at the age of 14 and older to provide education on advance directives, as the patient’s health declines. There were a total of ten eligible patients identified for this project and one patient completed the Advance Directive Toolkit that resulted in the creation of an advance directive. There was a 43% completion rate among registered nurses in the pre-post surveys and online education. Results showed that the project was successful in initiating the early palliative care conversations, however, there are still barriers to completing these conversations that include lack of education among nursing staff and families, lack of education materials for patients, and the fear of delivering “bad news” to patients and families.

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Creighton University

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Copyright is retained by the Author. A non-exclusive distribution right is granted to Creighton University

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