Searching For “The Dying Point:” Providers’ Experiences with Palliative Care in Pediatric Acute Care
Sharron L. Docherty
Margaret S. Miles
Debra Brandon
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.
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