Identifying Attitudes, Knowledge Gaps, and Barriers to Providing Neonatal Palliative Care in a Level IV NICU

Purpose: A significant number of newborns are affected by life-limiting or life-threatening conditions, many due to congenital malformations and extreme prematurity. Despite advances in the medical care of these critically ill newborns, a number of these infants ultimately do not survive. Providing comfort as well as end-of-life care is essential in the care of these infants. Currently, there are no neonatal palliative care guidelines within our neonatal intensive care unit (NICU). A multidisciplinary neonatal palliative care committee was established to assess the need for neonatal palliative care guidelines within our level IV, 54 bed NICU, as well as to identify gaps in knowledge and barriers to implementation of neonatal palliative care. Methods: An adapted Neonatal Palliative Care Attitude Scale (NiPCAS) was distributed electronically to all NICU medical and nursing staff. The anonymous survey consisted of 31 questions with answers in the form of a five point Likert scale. NiPCAS has been previously used and validated with neonatal nurses. Results: The overall response rate was 63% with a total of 165 surveys completed. The majority of respondents agree that palliative care is important in the NICU and have experience providing palliative care to infants. Survey results reveal discrepancies in how respondents define and implement palliative care. Barriers to palliative care practices include differences in beliefs between members of the care team, feeling that families are not informed of palliative care options, not having enough support or time to meet the needs of dying babies or their families, and the absence of unit guidelines to assist in the delivery of palliative care within our unit. Additionally, palliative care education is deemed necessary in neonatal nursing and medical education (98%) but only 39% of respondents have received education on supporting and communicating with parents of dying children. Conclusion: The majority of respondents agree that providing neonatal palliative care is important in the NICU environment. Many differences in attitudes about palliative care as well as barriers to its implementation were identified. Understanding these attitudes towards palliative care and identifying these barriers will inform future efforts to improve the education and implementation of palliative care guidelines in our NICU.