Comfort care, End-of-life care, Neonatal palliative care



  1. Chin, Susan Di Nonno PhD, RN, NNP-BC
  2. Paraszczuk, Ann Marie EdD, RNC-NIC, IBCLC
  3. Eckardt, Patricia PhD, RN, FAAN
  4. Bressler, Toby PhD, RN, OCN, FAAN


Purpose: Neonatal palliative care is widely endorsed as an essential aspect of neonatal intensive care unit (NICU) practice, yet inconsistencies in its use continue to exist. We examined neonatal nurses' perceptions of barriers and facilitators to palliative care in their NICU setting.


Study Design and Methods: A cross-sectional design using the Neonatal Palliative Care Attitude Scale (NiPCAS(TM)(C)) was administered using an online survey distributed to neonatal nurses through the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) and National Association of Neonatal Nurses (NANN). Parametric statistical analyses were conducted to explore relationships between unit policy and neonatal palliative care (NPC) education, and the nurses' perceptions.


Results: Ninety-nine of 1,800 AWHONN members who identified as NICU nurses completed the survey, representing a response rate of 5.5% and 101 of 4,000 NANN members who subscribe to the MYNANN message boards completed the survey, reflecting a 2.5% response rate. N = 200 surveys were completed with minimal data missing, resulting in a final sample of 200. Exploratory factor analysis yielded these subconstructs: Unit Culture, Resources, and Perceived Inappropriate Care. Barriers identified were Perceived Inappropriate Care and Societal Understanding of NPC. A positive correlation was noted for NiPCAS(TM)(C) scores and unit culture support (r(185) = .66, n = 187, p < .01), unit NPC policy (r(184) = .446, n = 186, p < .01), and NPC education (r(185) = .373, n = 187, p < .01).


Clinical Implications: Nurses who work in a NICU with an NPC policy and who have received palliative care education demonstrated more favorable attitudes toward NPC. Policy and educational programs are important strategies to promote high-quality care for high-risk infants and their families.


Article Content

Despite advances in neonatal care that have allowed for a marked reduction in infant deaths, a significant number of those born with specific conditions will not survive. Approximately 22,000 infant deaths occur annually, with more than 50% of them occurring in the neonatal period and in the neonatal intensive care unit (NICU) setting (Ely & Driscoll, 2019; Youngblut & Brooten, 2012). Neonatal palliative care (NPC) is a model of care that was developed in the 1980s to address growing ethical concerns in the media and health care literature about care of infants with life-limiting conditions and those at risk for long-term ill health (Duff & Campbell, 1976; Harrison, 1993; Stinson & Stinson, 1983; Whitfield et al., 1982).

Figure. No caption a... - Click to enlarge in new windowFigure. No caption available.

Neonatal palliative care is an integral aspect of the neonatal care delivery model that occurs concurrently along the curative trajectory, beginning with diagnosis of life-limiting, terminal, or uncertain conditions. Essential elements of a palliative care model include a multidisciplinary planned treatment approach and shared decision-making with the family. Curative treatment options are carefully considered and weighed alongside the benefits of a shift toward palliative treatments. Parents' preferences are integral to the decision-making process and are the overriding factor in determining the appropriateness of curative and palliative measures (Kain & Chin, 2020). Neonatal palliative care is an active and intentional process, ensuring that comfort measures and family support are provided from the point of admission, for all infants, regardless of diagnosis or prognosis.


Guidelines and position statements specific to NPC have existed for over 20 years (American Academy of Pediatrics, 2000; Carter & Bhatia, 2001; Catlin & Carter, 2002; NANN Board of Directors, 2015), yet less than 4% of children who meet the criteria for palliative care have documentation to demonstrate receiving palliative services (Keele et al., 2013). Lack of palliative care protocols has been associated with negative impacts on infants, their families, and multidisciplinary team members. Ineffective communication with parents and the NICU team about prognosis and end-of-life care planning is an added stressor for grieving families with long-term negative consequences (Branchett & Stretton, 2012; Currie et al., 2016; Orfali & Gordon, 2004; Penticuff & Arheart, 2005). Lack of palliative care education, NPC unit guidelines, and counseling support have been cited as sources of moral distress among neonatal nurses (Cavinder, 2014; Kain & Wilkinson, 2013; Lewis, 2017; Martin, 2013; Mendel, 2014; Samsel & Lechner, 2015). Neonatal intensive care unit nurses interact with infants and their families more frequently than any other team member, so they are uniquely positioned to influence families' end-of-life experiences with their infant and subsequent grieving (van der Geest et al., 2014).


The Neonatal Palliative Care Attitude Scale (NiPCAS(TM)(C); Kain et al., 2009) is a validated instrument designed to measure neonatal nurses' perceptions of barriers and facilitators of palliative care in the NICU environment. It was first administered to Australian neonatal nurses working in a Level III NICU (N = 465). The original tool development (Kain et al.) exploratory factor analysis resulted in a three-factor model with Cronbach's [alpha] scores greater than .6 that identified the following barriers and facilitators: "The organization in which the nurse practices; Available resources to support a palliative model of care; and The technological imperatives and parental demands (p. e207)." This instrument was administered to nurses in a single-center NICU in Texas (n = 50; Wright et al., 2011); across four medical centers throughout Taiwan (n = 80; Chen et al., 2013); and in three NICUs in South Eastern Iran (n = 70; Forouzi et al., 2017). Common themes identified in these studies include the organization in which the nurse practices, inadequate staffing, lack of resources to support a palliative care model, less than adequate physical environment, lack of policy guidelines, lack of educational preparation, inability to express one's opinion, the technological imperative, and parental demands.


Wool (2015) conducted a cross-sectional survey exploring physician and advanced practice nurse perceptions in providing perinatal palliative care (PPC). Using a web-based design, the Perinatal Palliative Care Perceptions and Barriers Scale (PPCPBS) was completed by a total of 66 physicians and 146 advanced practice nurses in North America. Although physicians and advanced practice nurses share similar feelings of distress and helplessness when caring for families with a terminal diagnosis for their fetus, physicians were more confident in their ability to counsel patients than advanced practice nurses. Both reported a lack of societal support and understanding about PPC. Wool's study highlights the need to initiate palliative care planning prior to birth when a life-limiting prenatal diagnoses is identified.


A qualitative, phenomenological study (Kilcullen & Ireland, 2017) that explored neonatal nurses' perceptions of facilitators and barriers had findings consistent with previous quantitative studies. Semistructured interviews were conducted with eight nurses in an Australian level III NICU. Factors that supported palliative care practice included leadership, clinical knowledge, and morals, values and beliefs. Family support factors involved emotional support, communication, and practices within the unit. Barriers included a perceived lack of staff education, lack of privacy, and policy and procedure factors.


Although published policies, guidelines, and educational programs are widely available to support NPC integration in the NICU (Carter, 2018; Carter & Bhatia, 2001; Catlin et al., 2015; Catlin & Carter, 2002; Kain, 2017; Mancini et al., 2013), there is no research on the impact of these resources on nurses' perceptions of barriers to and facilitators of NPC. Nurses' perceptions have been studied in several countries (Chen et al., 2013; Forouzi et al., 2017; Kain et al., 2009; Wright et al., 2011), yet no published studies to date have examined NICU nurses' perceptions throughout the United States. A nationwide study can provide insights into the current status of NICU nurses' perspectives that can be used to develop practice changes to better support NPC.


The purpose of this study was to examine NICU nurses' perceptions of the barriers to and facilitators of palliative care. The relationship between nurse characteristics, unit policy, and NPC education on the nurses' perceptions was explored to determine the influence of these factors on nurses' perceptions of the barriers they encounter in providing NPC.


Study Design and Methods

A cross-sectional, descriptive correlational design was used to obtain data on NICU nurses throughout the United States. Neonatal intensive care unit nurses were recruited from the Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) and the National Association of Neonatal Nurses (NANN) organizations.


Instrument and Data Collection

The NiPCAS(TM)(C) (Kain et al., 2009) is a validated tool that was used with permission by the author to collect data on nurses' perceptions of the barriers to and facilitators of palliative care in NICU nursing. The demographic section of this tool was modified for this study so it would have relevance for this population of nurses. This section included items on NICU acuity level (II, III, IV), gender, age, length of NICU experience, current employment status, neonatal certification, highest level of education, role in current workplace setting, ethnicity or race, children status, geographic region of practice, and religious and spiritual identification. A visual analogue scale was used to elicit information about the role of unit culture in supporting palliative care. Questions on NPC education and NPC policy were included in the demographic section.


The second section of the tool contains 26 attitude questions that use a 5-point Likert-type scale to collect responses. The response scale is coded as follows: 1 = strongly disagree, 2 = somewhat disagree, 3 = unsure (neutral), 4 = somewhat agree, 5 = strongly agree (Chin, 2020, pp. 116-129).


Approval was obtained from the Principal Investigator's affiliated college institutional review board. After receiving permission from the organizations, an invitation was distributed to NICU nurses from their memberships to participate in the study by completing the survey using the web link provided. The AWHONN invitation was distributed via email to members listed as NICU nurses and was sent with one reminder, 2 weeks from the original email, as per the organizations policy for survey distribution. The survey invitation was posted on NANN's message boards and included in their enewsletter. A raffle drawing of five, $50.00 Amazon gift cards was offered as a token gesture of appreciation and incentive to participate. The study was limited to registered nurses working in the NICU with a minimum of 1 year of experience in the United States.


Descriptive and inferential statistics were used in the data analysis via SPSS v 25. Exploratory factor analysis and Cronbach's [alpha] were conducted on the data to determine the constructs and reliability and validity of the instrument for the new population of nurses studied. Based on suggested methods to determine an adequate sample size for exploratory factor analysis (Beavers et al., 2013), it was estimated a sample size of 200 would fall within the ranges recommended. A Kaiser-Meyer-Olkin Measure of Sampling Adequacy and Bartlett's Test of Sphericity was conducted to confirm the sampling adequacy of the responses.


Correlations were performed with the total NiPCAS(TM)(C) score and the Visual Analogue Scale item. This question was included as an additional measure to evaluate the strength of the total NiPCAS(TM)(C) score in measuring nurses' perception of palliative care practice in their NICU environment and was worded as follows: "On a scale of 1-10, please indicate how strongly you feel that the culture of your unit supports palliative care," with higher numbers reflecting a greater amount of support. Correlations and independent t-test analyses were performed to examine the relationship between end-of-life education with total NiPCAS(TM)(C) score and for the relationship between NPC unit policy and guidelines with the total NiPCAS(TM)(C) score. T-tests and ANOVAs were conducted to examine the association with selected demographics and the NiPCAS(TM)(C).



Data collection occurred from September 18 through December 14, 2019. Ninety-nine of 1,800 AWHONN members who identified as NICU nurses completed the survey, representing a response rate of 5.5% and 101 of 4,000 NANN members who subscribe to the MYNANN message boards completed the survey, reflecting a 2.5% response rate. N = 200 surveys were completed with minimal data missing, resulting in a final sample of 200. Although the AWHONN response rate of 5.5% is consistent with reported web-based survey response rates (Dillman et al., 2009), the NANN response rate was lower. This may be related to method of survey distribution used by NANN whereby members needed to be subscribed to the message board service and take an additional step to go to the message board to complete the survey.


Due to listwise deletions in SPSS, items with missing data were automatically omitted for calculations for NiPCAS(TM)(C) total and individual item scores. This resulted in a sufficient final sample size for inference (n = 187) from analyses performed to answer the research questions (independent sample t-tests, ANOVAs, and correlations).


Demographic data for participant characteristics are listed in Table 1. Participants were most women (97.5%); 64.5% (n = 129) reporting to be >=41 years of age. Sample age is representative of average age of 50 for U.S. registered nurses (U.S Department of Health and Human Services, 2019). The majority of the participants in this sample (91%) identified as White non-Hispanic. This is disproportionately higher when compared with the U.S Department of Health and Human Services (2019) racial demographic distribution of the registered nurse workforce breakdown of White non-Hispanic 73.3%, Black non-Hispanic 7.8%, Asian non-Hispanic 5.2%, and Hispanic Latino/Spanish 10.2%.

Table 1 - Click to enlarge in new windowTABLE 1. PARTICIPANT CHARACTERISTICS

Most nurses work in a Level III acuity NICU (n = 178, 89%), have >15 years of NICU experience (n = 102, 51%), work full-time (n = 156, 78%), and work in direct patient care as a registered nurse (n = 103, 51%). The majority reported having a certification in their specialty (n = 119, 59.5%) with highest level of education to be bachelor, masters, or doctoral degrees (51.5%, 34%, and 16.8%, respectively). Educational preparation was higher than reported by the U.S. Department of Health and Human Services (2019). No significant differences were noted with nurse characteristics and total NiPCAS(TM)(C) scores.


Exploratory Factor Analysis

The NiPCAS(TM)(C) is a 26-item Likert-type scale instrument with previously established validity and reliability (Kain et al., 2009). Exploratory factor analysis and reliability testing was conducted to arrive at a model that would be appropriate with this new sample of nurses. Relevant items were reverse-coded so that higher scores represented the more positive end of the measure and all items responses were in the same direction of agreement.


Exploratory factor analysis using the Principal Axis Factor technique and varimax rotation resulted in a final three-factor model that retained 10 of the 26 items. Items included in factors 1, 2, and 3 demonstrated conceptual cohesion and an overall acceptable Cronbach's alpha value ([alpha] = .77). The following subconstructs with respective Cronbach's values were identified based on the thematic content of each item within the factor loadings. Factor One subscale items related to the unit cultural norms regarding palliative care practices and was thus labeled as the "Unit Culture" subscale ([alpha] = .81). Factor Two subscale items related to the resources available to support the delivery of palliative care practices and were labeled as the "Resources" subscale ([alpha] = .75). Factor Three subscale items related to the concept of "Perceived Inappropriate Care" and was likewise labeled with this name ([alpha] = .47).


Similar items within the Resources subscale were "My unit is adequately staffed to care for dying babies" and their families had a factor loading of .874, but the item "When a baby dies in my unit, I have sufficient time to spend with the family" had a factor loading of .583 and mean score of 3.6 out of 5, only marginally identifying this item as a facilitator to NPC. The two items within the Perceived Inappropriate Care subscale are "In my Unit, the staff go beyond what they feel comfortable with in using technological life support" and "In my Unit, staff are asked by parents to continue life-extending care beyond what they feel is right."


Barriers and Facilitators to NPC

Mean scores for the NiPCAS(TM)(C) instrument items were evaluated to identify barriers and facilitators to NPC. The 5-point Likert scale items range from 1 (strongly disagree) to 5 (strongly agree). Items scoring above 3 were identified as facilitators and those scoring below 3 were identified as barriers to palliative care. In addition to mean and standard error of the mean calculations, 95% Confidence Intervals were calculated to establish whether an item was defined as a barrier or facilitator; those considered neither were removed from the analysis. Items identified as facilitators corresponded with the Unit Culture and Resources subscales and may thus indicate a more favorable trend toward integration of palliative care practices that include a multidisciplinary approach, inclusion of families in the plan of care, and provision of resources that allow nurses to better provide NPC practices. Barriers identified corresponded with the Perceived Inappropriate Care subscale and also with 2 items related to a lack of societal understanding of the nature of NPC.


Culture Support, Unit Policy, and Education Findings

Significant findings were noted when comparing the unit NPC policy and palliative care education demographic items and the instrument scores. A positive correlation was noted between the total NiPCAS(TM)(C) score and unit NPC policy variable, r(184) = .446, n = 186, p < .01, along with independent samples t-tests demonstrating significantly higher NiPCAS(TM)(C) scores t(184) = 6.7, p < .001 for those respondents that reported having a unit NPC policy. A positive correlation was noted between the total NiPCAS(TM)(C) score and those who reported receiving palliative care education, r(185) = .373, n = 187, p < .01, and independent samples t-test demonstrated significantly higher NiPCAS(TM)(C) scores t(185) = 5.4, p < .001 for those who reported they received palliative care education. A positive correlation was noted between the Visual Analogue Scale item on Unit Culture and the total NiPCAS(TM)(C) score, r(185) = .66, n = 187, p < .01, with a higher NiPCAS(TM)(C) score indicating positive unit culture support for palliative care practice among this sample of nurses.


Eighty-seven nurses responded yes to having a unit NPC policy and 99 responded as either "no" or "unsure." An open-ended response was included to answer the research question "What are the NICU policies identified by nurses that impact on delivery of palliative care?" Thirty-two nurses (16%) provided information on their NPC unit policy. Data were examined for themes and grouped into the following categories: Palliative Care Program with a Website Identified (n = 5), Unit Policy-No Published Guideline Identified (n = 23), and Unit Policy-Published Guideline Identified (n = 4).



There are several limitations to our study. Despite a sufficient sample to conduct data analyses, survey response was lower than expected. Factors such as timing of survey during fall holidays and survey fatigue may have contributed to the low response rate. The gift card raffle incentive may not have been considered a worthwhile compensation for those considering participation. Other strategies such as recruitment from social media platforms may have yielded a larger sample. Likely recruiting from professional membership organizations contributed to the homogenous sample of a highly educated, certified, and more experienced group of nurses. As nurses disproportionately identified as White when compared with the U.S. Department of Health and Human Services (2019) national nursing workforce demographics, this further limits the generalizability of the results to non-White nurses. Alternative sampling strategies such as recruitment from targeted NICUs and social media platforms may enhance recruitment to include a broader representation of nurses from more diverse educational, racial, and experiential backgrounds.


Clinical Nursing Implications

Our findings demonstrate importance for NICUs to have a standardized NPC program that includes articulation of the nurses' role, a multidisciplinary approach, parental involvement in decision making, and evidence-based policy and educational support. Given the breadth of educational preparation and experience of the participants, it is surprising that the majority of respondents in the study either did not know or did not have a unit policy in their NICU. This finding may reflect continued challenges with integrating standardized palliative care practices alongside the curative trajectory and focus of the NICU setting.


Prior studies using the NiPCAS(TM)(C) instrument (Chen et al., 2013; Forouzi et al., 2017; Kain et al., 2009; Wright et al., 2011) identified similar barriers such as perceived inappropriate care and societal understanding of NPC. These findings are consistent with Wool (2015) on physician and advanced practice nurses' barriers about lack of societal understanding of PPC, indicating that the NICU team members continue to share this common experience. Factors such as engaging in difficult conversations with families and the inherently curative culture of the NICU, may contribute the ongoing challenges with successful integration of NPC evidence-based practices.


The Perceived Inappropriate Care instrument questions related to nurses' feelings of discomfort over providing care that they felt was not appropriate. What is comfortable and appropriate in terms of curative treatments for one nurse, may be inappropriate for another. Future research expanding upon the subjective nature of perceived inappropriate care would provide additional insights into nurse's perceptions on delivering curative treatments for newborns with a life-limiting or uncertain diagnosis.


Because nurses are part of our society, implicit values and cultural norms may contribute to the challenges they face in providing palliative care occurring alongside curative treatments in the ICU environment. Clearly outlined policy will help in better understanding the concurrent approach and the notion that these two treatment modalities can coexist. Policy development aimed at educating the public on the nature of palliative care and education that includes how nurses can communicate with compassion and transparency with parents are important strategies to best support nurses in their practice.


Our study has important implications for nurse leaders and organizations. There is minimal evidence on nurse staffing and support of nurses' opinions as facilitators to NPC. Issues such as nurse staffing, NICU environmental design, and education for the clinical nurses are important factors that nurse leaders need to understand and advocate for so that nurses can be best supported to provide high-quality care. Nurses in direct-care roles should have counseling services that include self-care strategies to help manage workplace stressors associated with caring for critically ill and dying infants. When nurses are provided with the emotional support and the skills to care for their own well-being, they are better positioned to function as engaged and effective professionals.


Neonatal palliative care education is an essential aspect of a palliative care program. The End-of-Life Nursing Education Consortium (ELNEC, 2019) Pediatric and Perinatal Palliative Care curriculum, and Resolve Through Sharing(R) Bereavement Training (Resolve Through Sharing, 2019) are two nationally recognized educational programs that are available in both conference and online formats. The ELNEC program is structured upon identified domains of palliative care and includes a separate module on perinatal- and neonatal-specific content (ELNEC; Ferrell et al., 2020). Neonatal textbooks and publications such as Catlin & Carter's NPC protocol (2002) provide additional resources for nurses to incorporate specific palliative care strategies in the NICU. Nurse leaders and organizational support of educational offerings will support nursing practice shape underlying unit-based cultural assumptions about importance of NPC.




* Nurses who work in NICUs that support palliative care practice report more favorable perceptions of their palliative care practice.


* Palliative care education such as the End-of-Life Nursing Consortium (ELNEC) and Resolve Through Sharing are important to support NICU nursing palliative care delivery.


* Palliative care policy and guidelines are important tools to support NICU nursing palliative care delivery.


* Societal misconceptions regarding palliative care are a common barrier that NICU nurses encounter. Continued policy development to educate the public on palliative care benefits and standards are needed to promote high-quality care for high-risk infants and their families.


* Unit resources that include staffing, time spent with families, and optimal physical environment are important factors that allow nurses to provide high-quality end-of-life care for patients and their families.


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