Searching for "the dying point:" providers' experiences with palliative care in pediatric acute care

Abstract

To improve care of children who die in acute care settings there is a need to develop a clearer understanding of the barriers to provision of palliative care. The purpose of this study was to describe the experiences and views of health care providers in giving care to children who have undergone intensive therapies for life-threatening illnesses. A qualitative, descriptive design was conducted in the intensive care nursery, pediatric intensive care unit, and pediatric blood and marrow transplant unit at a southeastern US medical center. Purposive sampling with variation on role, years of experience, ethnicity, and gender was used to select the 17 health care providers. Findings were organized into three broad categories: (a) Palliative Care as an Added Dimension in the Illness Trajectory, (b) Palliative Care Moves Away From Curative Treatment, and (c) Professional Issues. Relevant themes were identified within each category. Most participants viewed palliative care as a changed dimension of care that is instituted once it is known that a child is dying. Three challenges in employing palliative care to acutely ill infants and children were identified: (a) finding the true dying point, (b) making the transition to palliative care, and (c) turning care over to an outside palliative care team at a critical juncture of caring. Professional issues in providing palliative care included inadequate preparation and, especially for nurses, the crossing of professional boundaries. An integrated model of palliative care is needed that is initiated at diagnosis and allows for the bidirectional transitioning across the illness and treatment trajectories.