Distress for neonatal health care providers is often manifested as moral distress (Brandon, Ryan, Sloane, & Docherty, 2014; Hefferman & Heilig, 1999), defined as conflict between the health care action and a providers’ values. Source of moral distress among neonatal health care providers is associated with inappropriate use of aggressive care, providers lack of voice, and delays in transitioning to palliative care (Brandon et al., 2014). Provider moral distress affects the care of patients and palliative care programs may decrease moral distress (Brandon et al., 2014). Therefore, understanding providers’ views of palliative care and the factors that impact their agreement with withholding and withdrawing life-sustaining interventions is essential to informing decision making and decreasing provider moral distress.
Therefore, the purpose of this study was to describe changes in neonatal providers’ knowledge and comfort with integrated neonatal palliative care eight years after implementation. In addition, typologies of provider palliative and end-of-life decision-making and the relationship between the typologies and providers’ moral distress were explored.
Methods: The study design was a cross sectional survey before implementation and 8 years after implementation of neonatal palliative care program. An on-line survey was sent to all neonatal providers in a Level IV neonatal intensive care nursery in the southeastern U.S. The setting was the Intensive Care Nursery of Duke Children’s Hospital. The Birthing Center (BC) is a regional referral center with 3300 births per year and the Intensive Care Nursery (ICN) is a 67 bed level IV unit.
The goal of the Neonatal Palliative Care Program is to provide holistic, compassionate, supportive, coordinated, and consistent care to neonates with a life-threatening or terminal condition, and their families. The program is designed to serve families at any point from prenatal diagnosis throughout infancy and is based on four domains of neonatal palliative care: 1) infant and family needs including symptom management, psychosocial distress, spiritual issues, and family support, 2) ongoing reassessment and establishment of the infant’s care needs in collaboration with the parents, 3) coordination of infant care across care settings including transition to home and community, and 4) grief and bereavement support for families and providers (AAP, 2000; Carter and Bhatia, 2001). In addition, the program is committed to ongoing education regarding palliative care issues for both neonatal providers and families.
The program developed a number of products to facilitate comprehensive care for the patients and their families. The products developed included a Potential Candidates List, Palliative Care Protocol, a Palliative Care Order Set, a Nursing Palliative Plan of Care, a Medication list, a Family Conference Record, and an Infant Withdrawal of Care Protocol. In addition, a pamphlet was designed that can be provided to families, which gives an easily understood description of palliative care.
Survey measures included: 1) a demographic information; 2) an investigator developed measure of Neonatal Palliative Care (NPC) knowledge attitudes with a Likert scale; and 3) a provider moral distress scale developed by Corley and colleagues (Corley, Elswick, Gorman, & Clor, 2001) and modified by Hamric and colleagues (Hamric & Blackhall, 2007). The modifications were to adjust the questions to specific provider types (physicians, nurses, and others). Further modification to align with the NICU setting was completed with permission of Dr. Hamric.
All primary neonatal providers (RNs, NNPs, Neonatologists, Fellows, Social Work, Developmental Specialists, Unit Clerks) were emailed an invitation to complete an anonymous online Redcap survey. The link to the survey was active for one month, and the sample of providers received weekly emails reminding them to complete the questionnaire.
Results: 124 and 114 respondents completed the survey in 2007 and 2015 respectively for a 54% and 43% response rate. Mantel-Haenszel Chi-Square was used to evaluated provider knowledge and attitude differences before and after program implementation. Most respondents were nurses (79.8%). There were no significant differences in providers’ perceptions of their competence in providing NPC before and after program implantation. Providers’ perceived themselves to be either competent or extremely competent with providing comfort measures, managing pain and other symptoms (anxiety, gasping), recognizing impending death, and understanding the role of palliative care over 90%. However, talking with families about palliative care and dying was lower with about 70% of providers expressing competence. While providers generally felt they were competent at providing NPC the delivery of some aspects of NPC were viewed as more of a problem after program implementation. For example, reluctance of the health care team to discuss palliative and end-of-life care increased from around 50% before implementation to 85% 8 years after program implementation.
Latent class analyses were conducted around withholding or withdrawing 16 life-sustaining interventions. These interventions ranged from withholding or withdrawing nutrition and antibiotics to withholding or withdrawing mechanical ventilation and resuscitation. Three typologies of decision-making were present both before and after program implementation. Providers either mostly agree, mostly disagree, or had selective agreement with limiting or withdrawing life sustaining interventions. Moral distress scores were moderately high. Nurses had significantly higher total moral distress scores (mean=94.33; SD=52.74) than physicians (mean=59.70; SD=42.07. In ordinary square regression analyses providers’ moral distress predicted their decision making typology (p<0.001). Moral distress was highest among the providers in the mostly agree typology (median=116) and lowest in the mostly disagree (median=68) typology.
Conclusion: Providers knowledge and comfort with neonatal palliative care was generally good at both baseline and 8 years following program implementation while problems with implementation of specific intervention were viewed as more problematic. One possible explanation for this finding could be the greater awareness of importance of NPC and thus more concern or recognition that care was not consistently applied. This finding is consistent with our moderately high levels of provider moral distress. Provider moral distress over the use of certain interventions may impact the delivery of NPC and negatively impact the providers’ well-being. Institutional support for both parents and care providers is essential for effective delivery of NPC.