Scared of palliative : perspectives on palliative care from pediatric nurses caring for children with progressive life shortening illnesses on acute care units

Abstract

Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the number of children with PLSIs who require long-term management of their disease condition in hospital is steadily increasing. Accordingly, pediatric nurses on general hospital units frequently care for children with PLSIs and are intensely engagedin controlling pain and managing complex symptoms such as respiratory support, feeding issues, and seizure management. Despite pediatric nurses carrying out the essential aspects of palliative care, specifically pain and symptom management, they typically do not identify their practice as being influenced by the tenets of palliative care and even described feeling “scared of palliative. ” Methods: Qualitative data was collected through individual interviews with pediatric acute care nurses, the transcripts of which were analyzed according to the interpretive methodology of philosophical hermeneutics. Results: Participants revealed a limited understanding of the scope and breath of pediatric palliative care. Participants avoided using the language of palliative care in their discussion of their work with children with PLSIs. When they did use the language of palliative care, it was taken up in the sense of end-of-life care: “she was made palliative that day. ” Furthermore, participants often deferred to the palliative care consult team when asked about how they understood the role of palliative care in their practice. Conclusions: Nurses working with children with PLSIs and their families could benefit from support and empowerment in their work through an integrative and creative approach with the palliative care consult team. This would include involvement of acute care nurses in decision making conversations and the implementation of an Advanced Practice Nursing role to work as a liaison between the consult team and bedside nurses.