Katie Hillary, Renea Beckstrand, PhD, Ann Rogerson, RN, Beth Luthy, DNP, and Janelle Macintosh, PhD
Introduction
Neonatal end-of-life (EOL) care supports a peaceful and dignified death for the infant as well as provision of loving support to the family (National Association of Neonatal Nurses, 2010). Infant mortality in the U.S. is 6.05 infant deaths per 1,000 births (MacDorman, Hoyert, & Matthews, 2013). Due to this infant mortality rate, Neonatal Intensive Care Unit (NICU) nurses need to understand how to provide EOL care to patients and families. NICU nurses who care for dying infants are faced with unique EOL care obstacles and challenges. EOL nursing care for infants not only includes the patient, but also the family. In order to be able to provide best care for patients and families nurses need to understand and overcome obstacles that inhibit EOL care and learn and incorporate supportive behaviors into EOL care. A study by Wright, Prasun, and Hilgenberg (2011) found that obstacles to providing EOL care for NICU nurses continue to exist. Two of these obstacles include an inability to express opinions about palliative care and the lack of EOL education (Wright et al., 2011). Understanding what barriers exist is important so as to better educate and help NICU nurses overcome obstacles in providing quality EOL care.
Methodology
This study was a quantitative random sample of NICU nurses who were also members of the National Association of Neonatal Nurses (NANN). After obtaining approval from the university institutional review board, a mailing list of the NANN’s membership was purchased. NICU nurses were mailed the National Survey of NICU Nurses’ Perceptions of End-of-Life Care questionnaire, which included a Likert items rated on a scale from 0 – 5 as well as demographic and open-ended questions. The variety of items allows for a deeper understanding of NICU nurses’ experiences with end-of-life care.
Results
Of the 1058 questionnaires mailed in the national survey, a total of 234 surveys were returned. With a response rate of 26%, the sample size was adequate to proceed. The demographics from the national survey resulted in seven male respondents and 224 female respondents ranging in age from 24 to 67 years. Respondents ranged from 1-45 years of RN experience and 1-42 years of NICU experience with the majority having earned a bachelor’s degree in nursing. The respondents work a mean of 34 hours a week in hospitals with about 46 beds. In this sample of NICU nurses, individuals had cared for 30 dying patients. After reviewing the responses from the national NICU survey, the highest rated obstacle was families not being ready to acknowledge their infant had an incurable condition. In addition, other obstacles related to family preparation were ranked as difficult challenges to providing EOL care. These other obstacles include: parental discomfort in withdrawing ventilation, conflict among family members in having disagreements about whether to continue or stop aggressive treatment, as well as one parent being ready to “let go” before the other parent. The highest rated supportive behaviors from the national NICU survey included behaviors that helped families cope with the death. Caring for the family was consistently ranked as the highest supportive behaviors. Some of these supportive behaviors include allowing family member adequate time to be alone with the infant after he or she died, as well as allowing the parents to hold the infant while life support was being discontinued. Other supportive factors were having family members accept that the infant was dying, providing continuity of care such as primary care nurses, and having a unit specifically designed so the family could have a place to grieve in private.
Discussion
The responses from the NICU nurses associated with the NANN provided great insights to the obstacles and supportive behaviors present when providing end-of-life care in the NICU. The common themes that we found in this study include family grief, communication, ethical dilemmas, education, and patient centered care. Grief is a considerable obstacle to overcome, often parents of dying infants experience denial as well as anger. By utilizing supportive behaviors NICU nurses can help families work through their grief and anger as well as provide better EOL care. Communication can be both an obstacle and a supportive behavior. As families and providers work to better understand the infant’s condition and treatments, parents can make the best decision for their individual child. Often a lack of communication can lead to unnecessary or even unwanted treatments or confusion about the prospective health outcomes. Good communication between doctors, nurses as well as families can help parents in their decisions regarding treatments, outcomes, and search for support. Ineffective communication can also lead various ethical dilemmas in the NICU. Dilemmas such as whether to pursue aggressive treatments can be common in the NICU and communicating viewpoints and priorities of the families and treatment team can lead to better decisions and support to families. In addition to better communication, providing education regarding treatments and outcomes can better help families make the right decision for their infant. Education for nurses in providing EOL care as well as for parents in what to expect can improve emotional support provided as well as understanding. Finally, patient-centered care leads to better overall communication, wellbeing, and patient and family satisfaction. As NICU nurses focus on the needs of their patients and families rather than personal opinions better outcomes can be achieved.
Conclusion
Providing neonatal EOL care that is peaceful and dignified for the infant as well as providing loving support to the family is a difficult task. There are many obstacles that NICU nurses face as they provide EOL care for infants and family members. However, understanding what obstacles are most common as well as the supportive behaviors that can positively influence EOL care can lead to a more positive EOL care experience. As more research is preformed exploring other facets and perspectives of EOL care, nurses, practitioners, and families can provide and receive the best possible care and support during times of trial. Using the findings in this research, as well as in other similar studies can lead to better EOL care and EOL care teaching. This will allow nurses to be better prepared to face the ethical dilemmas and other challenges that surround EOL care.