To isolate the threshold point in which the goal of care for an infant with life-limiting conditions transitions from curative efforts to purely palliative care.
Descriptive Web-based survey of 285 neonatal physicians and nurses who had participated in care of dying infants.
Researcher-developed tool measured multiple palliative care concepts related to transition to purely palliative care, such as identification of infants for whom purely palliative care should be offered; physician and nurse satisfaction with and barriers to the transition process; physiological factors that indicated that the infant was ready for transition to purely palliative care; publication knowledge to guide palliative care; and factors influencing decision making.
The study aim was to identify the physiology involved in coming to the end of life and indicating a transition need for palliative care. But although the respondents were able to identify physiological factors or lethal conditions leading to a transition to purely palliative care, they stated that these factors were not how the goals of care were established. Respondents (96%) stated that parental agreement was the determinant to palliative care transition, and, regardless of neonatal physiological condition, without agreement, curative technological efforts continued. Respondents felt that more education on the palliative care process for both staff and families was necessary to move dignified end-of-life care forward.
Parents must be our partners when the burden of care to the infant is greater than the benefit. Suggestions to assist both parents and providers are offered.
Although this study is based on end-of-life decision making for newborns, the findings may resonate to nurses who care for dying patients of any age group, with any diagnosis, cared for in any type of medical-surgical or critical care unit. The findings describe the American concept of patient and family autonomy and problems that have arisen from the implementation of autonomy in end-of-life decision making regarding withholding/withdrawing therapies that provide artificial life support.