COMPLEMENTARY OR DIVERGENT? ACUTE AND LONG-TERM HEALTHCARE PROVIDERS BELIEFS ABOUT PEDIATRIC PALLIATIVE CARE

Abstract

BACKGROUND: Continuity of care in pediatric palliative care (PPC) is complex, especially when critical care providers become involved during acute unexpected health events. OBJECTIVE(S): To explore and compare acute care and long-term care providers opinions about PPC. DESIGN/METHODS: A qualitative study was conducted from January to October 2016. Six semi-structured focus groups were held with naturally occurring interdisciplinary carers from pediatric emergency department (ED), pediatric palliative care, pediatric complex care and pediatric intensive care unit (PICU). Themes emerged with open-ended questions and discussions. Verbatim transcription and thematic analysis were performed with NVivo software. RESULT(S): Fifty-eight participants were enrolled. Figure 1 describes culture specific to each group. Definitions of PPC were overall similar: to provide active complementary care early in the illness trajectory, focusing on caring for the child as a whole and establishing trustful relationships with families. Healthcare providers expected families experiences to follow a linear path, ultimately leading to discussions about end-of-life goals and withholding of aggressive therapies. Each group emphasised their own struggles discussing goals of care (GOC). The inevitability of having to validate previous desires during acute health events was recognised across all groups. However, most acute care providers reported frustrations and discomfort when having to introduce discussions about GOC for the first time in a patients life. Long-term care teams suggested that rapid clinical judgments on patients quality of life by acute care teams are hard to receive by families. Two approaches of PPC were suggested: some healthcare providers hoped to have a full-time designated specialised team to manage patients, while others suggested PPC is a transversal approach to patient care, which should be provided by all. CONCLUSION(S): PPC is well recognized and understood by healthcare providers from different specialties. Acute care providers often encounter PPC patients at their worse; continuity of care and quality of interactions with families are challenged by their lack of knowledge about family values and previous discussions on GOC.(Fig 6).