Keywords

goals of care, hospice, nursing, palliative care, pediatrics, socioecological model

 

Authors

  1. Grier, Kimberlee BSN, RN, CHPPN, CHPN
  2. Koch, Amie DNP, FNP-C, RN, ACHPN
  3. Docherty, Sharron PhD, PNP, RN

Abstract

The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality of life, end of life) with an understanding of the multilayered external influences that affect patient/parent decision making. A 5-layer model is presented that describes facilitators to conversations about quality goals of care and advance directives. Each year, complex health conditions (a) affect approximately 500 000 children in the United States, 8600 of whom meet current palliative care criteria, and (b) account for over 7 million child deaths globally. Nurses can use knowledge of the unique values and culture of families with children who have complex health conditions to support them by providing high quality, ongoing goals-of-care conversations, especially if their access to pediatric palliative care is limited.