Neonatal staff and advanced practice nurses' perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants.

BACKGROUND: Parents need compassionate care when an infant dies. Nurses can provide such care and possibly facilitate grieving, yet often have inadequate preparation in bereavement/end-of-life care. OBJECTIVE: To describe neonatal nurses' perceptions of bereavement/end-of-life care of families of critically ill and/or dying infants. METHODS: A cross-sectional, descriptive, correlational mailed survey design was used. The 55-item Bereavement End-of-Life Attitudes About Care: Neonatal Nurses Scale containing 4 sections (comfort, roles, involvement, and demographics) was mailed to 240 hospitals in the United States. RESULTS: The final response rate was 52% (190 completed data sets from 125 hospitals). Respondents were comfortable with many aspects of bereavement/end-of-life care. Comfort and roles scores correlated significantly with number of years as a neonatal intensive care nurse. Respondents agreed about many important aspects of their roles with patients' families, especially the importance of providing daily support to the families. Most respondents identified caring for a dying infant, the actual death of an infant, and language or cultural differences as influential factors in the level of their involvement with families. CONCLUSIONS: Education on bereavement/end-of-life care could affect nurses' comfort with caring for families of critically ill and/or dying infants. Additional education on cultural competence would be helpful. Educators must promote the inclusion of content on bereavement/end-of-life care in nursing curricula. Finally, researchers must focus more attention on factors that promote and inhibit bereavement/end-of-life care of families of critically ill and/or dying infants.

Communicating end-of-life preferences.

The purpose of this survey was to explore how adults communicate their end-of-life preferences. Face-to-face interviews were conducted with 119 community-dwelling adults who had previously engaged in conversations about their end-of-life preferences. Factors that made it easier to initiate the discussion included having personal experience with illness or death (24.4%), being straightforward (24.4%), or having someone else facilitate the discussion (11.8%). Most described vague end-of-life preferences such as not wanting any machines (41.2%) or heroics (34.5%). Although 22.7% reported using a living will to make their preferences clear, only 5.9% mentioned repeating or reinforcing their preferences. In all, 21% had discussed their end-of-life preferences with their physicians. These findings show discussions about end-of-life preferences frequently lack the clarity and detail needed by significant others and health care providers to honor the preferences. Routine dialogue with health care providers and significant others about end-of-life preferences might provide greater clarity and comfort.