Comfort and Conflict in Neonatal End-of-Life Care: A Mixed-Methods Study

Comfort and Conflict in Neonatal End-of-Life Care: A Mixed-Methods Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Article Comfort and Conflict in Neonatal End-of-Life Care: A Mixed-Methods Study Matthew Drago, Danielle Zamalin, Rachel Reed, Robert Green This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-9022627/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Objective To evaluate neonatal providers’ comfort with end-of-life care (EOLC) and perceived palliative care (PC) resources using a two-domain analytic framework. Study Design: Mixed-methods survey of nurses, physicians, advanced practice providers, and trainees in Level III and Level IV NICUs. Items were grouped into two domains: (1) comfort with participation in EOLC and (2) perceived PC resources and support. Multivariable hierarchical linear regression identified independent predictors of each domain, and free-text responses underwent inductive thematic analysis. Results Eighty-three clinicians responded. EOLC experience (p < 0.001) and prior EOLC training (p = 0.037) predicted higher comfort, whereas trainee status predicted lower comfort (p = 0.012) (R²=0.353). For perceived PC resources, provider role and NICU site were associated with higher scores (R²=0.130). Qualitative themes highlighted competency gaps, personal and interpersonal conflicts, variable team culture, and structural constraints. Conclusions Provider comfort in neonatal EOLC reflects experiential, educational, and system-level factors. Interventions must combine training with cultural and structural investment. Health sciences/Health care/Quality of life Health sciences/Health care/Paediatrics Neonatal End-of-Life Palliative Care Training Introduction Historically, most EOLC in the Neonatal Intensive Care Unit (NICU) occurred acutely due to critically-ill infants failing to respond to trials of intensive care early in their course. 1 Today, many families learn even before birth that their child has a life-limiting condition. As a result, perinatal palliative care has emerged to provide more holistic care for infants with uncertain futures. 2–6 However, many infants still die in the neonatal intensive care setting, with most NICU deaths now occurring after redirection or non-escalation of care later in the infants’ course. 7–11 Therefore, EOLC remains a critical and expanding competency for NICU providers. 12 Despite its importance, many struggle to develop confidence in providing EOLC. Programmatic PC consultations, trigger criteria, and standardized protocols have demonstrated improvements in communication, symptom management, and care coordination. 4 , 13 – 15 However, availability of guidelines and specialty PC services remains variable across centers. 12 While survey studies have identified barriers to PC implementation in certain provider groups, none have integrated quantitative predictors of provider comfort with qualitative exploration of team culture and system supports within the same framework. 16 We aimed to characterize neonatal providers’ perceptions of neonatal EOLC through qualitative and quantitative analysis of a survey targeting provider comfort with end-of-life care practices, perceived PC resources, and support in their unit. We hypothesize that perceptions of neonatal EOLC will vary amongst providers based on role and level of experience, and that responses will help identify how gaps may be addressed. Methods This is a single-center study of NICU medical providers at a level III and level IV NICU in the Mount Sinai Health System–Mount Sinai West (MSW) and Mount Sinai Hospital (MSH), respectively. Between 2022 and 2023, MSW had approximately 4,300–5,000 live births, with 2–5 NICU mortalities per year. During the same period, MSH had approximately 6,400–6,700 live births and 20–22 NICU mortalities yearly. At the time of the survey, neither hospital had sub-specialized Pediatric PC consultation support, and all PC was provided by the primary teams. At MSW this consisted of a Neonatal Bereavement Team composed of a neonatologist, pediatric hospitalists, NICU nurses, and a social worker who worked to standardize the approach to infant death in the unit via checklists and written guides. At MSH, the NICU clinical team was supported by a pediatric chaplain, social workers, and child life therapists. A bereavement committee at MSH provided additional resources to families who experienced the death of a child. MSH did not have written end-of-life care guidelines at the time of the survey. Between January and May 2024, an anonymous survey was sent electronically to NICU providers at both hospitals, including NICU nurses, advanced practice providers, pediatric residents, neonatal fellows, neonatal hospitalists and neonatologists. Responses were collected via REDCap, a secure electronic application for survey distribution. The survey introduction noted that respondents were providing consent to publish aggregate results through participation in the study. The research was deemed exempt by the Mount Sinai Institutional Review Board. The survey was designed based upon a literature review of neonatal PC. Questions were informed by multidisciplinary discussions amongst stakeholders from nursing, front line providers, and attending physicians within the target study population. It was tested for face validity by five NICU medical providers prior to distribution. The survey included 5-point Likert scale responses, 4-point quantitative responses, dichotomous responses, and free text entries and consisted of 41 questions (Supplement I). The first questions were related to provider characteristics, including NICU provider role, primary hospital, years of experience, and prior training in EOLC. The remaining questions targeted two domains: 1) comfort with participation in EOLC and 2) available PC resources and support. The survey questions in each domain are indicated in Supplement II. To assure the internal consistency of the survey, a reliability analysis was performed on these two domains which obtained Cronbach’s α coefficients of 0.719 and 0.825 respectively. A convenience sample size was used. Inductive thematic analysis was performed to identify and group recurring themes amongst free-text responses. Through an iterative process, three independent coders organized individual responses into categories and then independent overarching themes within the two targeted domains of comfort with participation in EOLC and available PC resources and support. Differences were resolved by consensus. Statistical Analysis Descriptive analysis was used to summarize the sample. Multivariable hierarchical linear regression models were then built to determine which provider characteristics, as independent variables, were associated with scores for each of the two domains described above, as the dependent variables or outcomes. 18 That is, the survey responses were divided into two groups (domains) thus defining two dependent variables or outcomes for each study subject as the average response to the survey questions in the respective domain. We then built a linear regression model for the average response for each of the two grouped variable averages as outcomes with the following independent candidate variables that were pre-selected based on conceptual relevance: years NICU experience, years at Mount Sinai, role (practitioner, nurse, trainee), NICU site, experience with EOLC, and having received specific training in EOLC. See Supplement III for details. Results Study Population Responses were collected from 83 clinicians (25% response rate): 61% from the level IV NICU and 36% from the level III NICU (Table 1 ). Among respondents, the majority (54%) were nurses, 22% were trainees including residents and neonatology fellows, and 10% were attending neonatologists. Nearly half of respondents (49%) had little experience, having worked in a NICU for 5 years or less. Most respondents (74%) stated they had no specific training in caring for dying infants, yet the majority (75%) had cared for infants receiving end-of-life care, with 20% having done so once or twice. Linear Regression Regression models were used to determine which characteristics independently contributed to our two domains of responses: “Comfort with Participating in EOLC” and “Available PC Resources and Support.” The data for the regression models are the average responses of the study subjects to the Likert scale questions (1–5 not collapsed) in each domain. The regression models are described separately. Comfort with Participating in EOLC The final model showed that providers with greater experience with EOLC (p < 0.001), being a trainee (p = 0.012), and having specific training in EOLC (p = 0.037) all impacted perceived comfort with participating in EOLC, with all other characteristics being not significant. The model equation had a mean score of 2.847 ± 0.159 (p < 0.001). Experience with EOLC resulted in stepwise increases in the score: no experience increased the score 0.228 ± 0.02; 1–2 years’ experience increased the score twice that much; 3–5 years’ experience increased the score three times that number; greater than five years’ experience increased the score four times that number or 0.912. Providers who reported receiving specific training in EOLC had higher mean scores by 0.285 ± 0.134. Trainees had less comfort as indicated by a decrease in score of 0.373 ± 0.144 compared to nurses and practitioners. This model accounted for 35.3% of the variation in EOLC engagement scores (R 2 = 0.353.) Available Palliative Care Resources and Support The regression model had a mean score of 3.126 ± 0.107 (p < 0.001) for questions assessing perceived PC resources and support. Practitioners (neonatologists, pediatricians, and nurse practitioners) were more likely to report adequate PC resources and support (score in model increase 0.374 ± 0.200, p = 0.066) compared to staff nurses, residents, and neonatology fellows. Providers of care at our system’s Level 3 NICU were more likely to report adequate resources than those at the Level 4 academic medical center. No other variables were significant. This model accounted for 13% of the variation in PC resources scores (R 2 = 0.130) Qualitative Analysis Free-text responses underwent inductive thematic analysis and generated eight analytic themes across the two target domains (Table 2 ). In the first domain, providers described that discomfort with participating in EOLC stemmed not only from competency gaps in both communication and symptom management skills, but also from PC culture and team alignment in the NICU. Providers described difficulty finding a shared understanding of the concurrent roles of intensive and PC. They noted interpersonal conflicts (between family and staff or amongst providers) such as cultural or religious beliefs that contributed to this lack of a unifying goal. Lastly, providers shared internal conflicts (experienced by individuals) that caused discomfort when participating in EOLC. These conflicts arose not only from their own personal beliefs and biases but also competing demands. Responding to other urgent patient needs prevented providers from feeling they could fully participate in EOLC. In the second domain, perceived available PC resources and supports themes reflected incongruous team structure and resources for effective PC. For example, providers described how they were able to bond with families over the duration of a shift, but then noted lack of day-to-day continuity with rotating providers. This was seen as an opportunity for specialty PC to not only lend expertise in EOLC, but also a layer of continuity in addition to the primary team. EOLC was seen as a continuum and not a discrete event in the NICU. Thus, it was important for respondents to provide family-centered continuity across the dying process. Lastly, after a death occurs in the NICU, staff noted the need for processes to support staff recovery through debriefing EOLC. This created a sense of teamwork, acknowledgement of comfort as a goal, and was seen as an opportunity to learn for those who were not intimately involved in EOLC . Discussion Despite gains in implementing PC in the NICU, continued improvement in care quality and institutional investment requires additional data on current neonatal PC practices, training, and resources. 18 , 19 While separate qualitative or quantitative studies have previously focused on perceptions of PC for individual provider groups or trainees our study is the first to apply a mixed-methods approach to study these groups together. 15 , 20 – 23 As predicted, provider role and experience were significant variables, but how these and other variables impacted perceived comfort with participation in EOLC vs perceived PC resources and supports varied. Our qualitative analysis adds needed context to the complexity of issues that underly variations we identified in each domain. Our first domain explored comfort with participation in EOLC both in regard to provider skills and interaction with families and other staff. Looking at individual responses within this domain, respondents had the least comfort overall guiding families through withdrawal of life-sustaining therapies or communicating about the dying process. This correlates with the importance of trainee status and prior training in EOLC on average domain scores and confirms that educational interventions to bridge competency gaps are needed. However, qualitative themes also called for interventions to strengthen team cohesion around a shared goal at EOL. This shared vision must allow for diverse team and family beliefs, while also accounting for the emotional strain EOLC causes in a busy NICU setting. This may partially explain why previously reported educational interventions have had mixed success in meeting PC learning objectives. 24 – 26 This domain also included questions regarding feeling excluded from goals of care conversations, or unable to share personal opinions on EOLC. This may account for the significance that experience level played in this domain. This is consistent with the Arzuaga et al study of pediatric trainees. While we demonstrated a stepwise increase in comfort with gained experience, Arzuaga et al found that comfort with EOLC skills sometimes lagged behind gaining experience in those aspects of care. 21 In our qualitative analysis, respondents described internal conflicts felt while participating in EOLC, suggesting that addressing emotional, moral and spiritual distress could help prevent this lag. Experienced providers serve as essential role models for trainees in how to conduct EOLC. While attending neonatologists in our study reported high comfort in performing EOLC themselves, this self-report has been previously shown to not always translate into using best practices. 27 In addition to maintaining their own skillsets, attendings should also consider how to better incorporate trainees, nurses, and less experienced providers into EOLC. While we did not directly observe how care teams divided EOLC work in the NICU, one can hypothesize that the most difficult conversations with families may be reserved for smaller, more intimate conversations with the most experienced providers out of reverence for families. While including the larger NICU team, including trainees, in these conversations may not always be practical or appropriate, providers that lead them should listen to our respondents call for more team debriefs. This consideration for team cohesion may not only improve training and confidence, but address both personal and inter-personal conflicts that arise in EOLC. 18 , 20 , 23 , 28 , 29 For example, inclusive interdisciplinary care may allow more staff to process their feelings, morals and opinions on EOLC, reducing moral distress. 28 , 30 Our respondents also noted the importance of these processes for recovery after participating in PC, such as time for reflection on positives achieved through PC, despite a patient having a poor outcome. This may lessen burnout, which our respondents noted was a result of staffing constraints and competing demands that prevented them from fulfilling their duty to be present with families and patients at end of life. Within the second domain we explored if providers felt they had adequate time, resources and guidelines for performing PC in their unit. Despite respondents from the Level IV unit (where more deaths occur) reporting more EOLC experience and specific training, providers at the Level III unit perceived greater PC resources and support. Differences between provider groups were also found, but level of experience and prior training were not significant variables in this domain. These findings suggest that beyond experience and training, neonatal units would benefit from specific recommendations for staffing ratios to appropriately support staff when caring for infants who require EOLC. Such recommendations are currently lacking from the AAP’s and ACOG’s current Guidelines for Perinatal Care . 31 These guidelines also lack recommendations for multidisciplinary personnel trained in PC, and physical space suitable to provide that care that are needed to align with the AAP’s Guidance for Pediatric End-of-Life Care .” 18,31 Many respondents also noted a lack of pediatric subspecialty PC support, which is not unique to our health system. 32 , 33 While respondents noted the obvious expertise that specialty PC providers would bring to difficult cases, they also felt they could unburden NICU staff by maintaining a PC focus without competing ICU demands. The addition of specialty PC, however, is not a silver bullet to resolve the many issues that remain with integration of PC in the NICU. Our study importantly identified a desire by NICU providers to continue to play a central role in primary neonatal PC. Thus, hospital systems both with and without PC subspecialists should incorporate simulations, guidelines, and order-sets for primary neonatal teams, as these have been shown to improve important PC practices in other settings. 34 – 36 In addition to making unit-specific resources, further study is warranted to assess parental perspectives. Units that implement PC education or clinical practice guidelines should also implement quality improvement initiatives to track not only whether those interventions maintain improvements in PC over time, but if alignment in unit culture and attitudes correlates with those improvements. 37 By nature of being a survey, our study is bound by several limitations. First, it was conducted within a single healthcare system. However, conducting our survey at both a Level III and Level IV NICU make our results more generalizable. Second, survey studies may result in self-selection bias where those with an interest in, or concern with, delivery of PC are more likely to respond and report shortcomings in current practice. Similarly, new trainees may mistakenly overestimate deficiencies in their training due to limited exposure and experience, while experienced providers may overstate comfort. Thus, direct assessment of provider expertise for both trainees and educators is necessary to ensure quality in PC education. While EOLC is a significant domain of PC, we recognize that it is only one component and further research should consider how improving all domains of holistic PC impacts EOLC. Finally, while the overall survey response rate was low, as is typical for voluntary, survey-based studies, the quantitative and qualitative findings remain significant. Neonatal EOLC is a core competency for neonatal providers. Our findings show that discomfort with EOLC is not simply a matter of insufficient knowledge, but reflects a combination of limited experiential learning, competing clinical demands, variable team culture, and inconsistent system supports. Providers across roles expressed a clear desire to participate meaningfully in primary PC, yet many feel underprepared or constrained by structural and cultural factors within the NICU environment. These results suggest that improving neonatal EOLC will require more than isolated educational interventions; it will require deliberate efforts to foster interdisciplinary inclusion, normalize PC as part of routine NICU care, and create systems that allow providers the time, support, and psychological safety needed to engage fully in this work. As survival of medically complex infants continues to improve, so will the need for longitudinal palliative involvement. NICUs must invest not only in training, but in culture and infrastructure to sustain high-quality, family-centered EOLC. Doing so has the potential to improve experiences for infants, families, and the clinicians who care for them. Abbreviations Neonatal Intensive Care Unit (NICU), Palliative Care (PC), End-of-Life Care (EOLC), Mount Sinai West (MSW), Mount Sinai Hospital (MSH). Declarations Conflict of Interest Disclosures (includes financial disclosures): The authors have no conflicts of interest to disclose. Funding/Support: No funding was secured for this study. References Meadow W. Epidemiology, economics, and ethics in the NICU: reflections from 30 years of neonatology practice. J Pediatr Gastroenterol Nutr. 2007;45(suppl 3):S215–S217. Carter BS. Pediatric Palliative Care in Infants and Neonates. Children. 2018;5(2):21. Parravicini E. Neonatal palliative care. Curr Opin Pediatr. 2017;29(2):135–140. Humphrey L, Schlegel A, Seabrook R, Maclead R. 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Demographics of Survey Respondents % Participants (n = 83) Hospital Site Mount Sinai Hospital (MSH) Mount Sinai West (MSW) Unknown 62 (51) 36 (30) 2 (2) Position Attending Neonatologist Attending Pediatrician Neonatology Fellow Pediatrics Resident Advanced Practice Provider (APP) Nurse Unknown 10 (8) 7 (6) 1 (1) 21 (17) 2 (2) 54 (45) 5 (4) Experience in any NICU (yrs) 10 Unknown 16 (13) 34 (28) 17 (14) 30 (25) 3 (3) Experience in Mount Sinai NICU (yrs) 10 Unknown Experience providing EOLC No, never Yes, 1-5 times Yes, >5 times Specific training in EOLC No Yes 22 (18) 42 (35) 13 (11) 19 (16) 4 (3) 25.3 (21) 40 (33) 35 (29) 74 (61) 26 (21) Characteristics of survey respondents Table 2: Qualitative thematic analysis of free-text responses. Themes were generated through inductive analysis by three independent coders. Differences were resolved by consensus. Domain 1: Participation in EOLC Theme Categories Example Quotations Competency Gaps in Primary PC · EOL courses, trainings and algorithms · Symptom management · Communication · Need to understand the physiologic process of EOL “Palliative care can be peaceful and beautiful in the right environment. Education and support that is specific to these situations could help providers and nurses.” “Educating members of staff in pain management. Attendings/staff being aware that just because a patient is unable to move they can still feel pain.” PC Culture and Team Alignment · Importance of team cohesion · Need for a shared goal · Acknowledge/understand patient/family/staff distress · Promoting comfort · Acceptance of differing opinions “It is especially hard when the medical team seem to be ‘trying everything’, even very painful interventions with little hope of success.” “Palliative care and intensive care should not be mutually exclusive but it feels like it is here.” “Providers should be more agreeable to each other with the plan of care.” Interpersonal (Family-Team and Inter-Team) Conflicts in PC · Differing beliefs about uncertain prognosis · Different religious beliefs · Different cultural beliefs “I think death is so hard on the family, but the baby is our patient who we should advocate for. But at the same time it is the family who can speak that we develop a relationship with.” “It is difficult when parents have [a] different belief system [than] mine and when they are still angry or bitter with everything happening [with] the baby.” “Religious differences- not all physicians seem on board [with] this, these beliefs are often shot down by some providers.” Internal Conflicts in PC · Moral distress · Spiritual concerns · Personal bias · Competing demands “I am constantly being barraged with calls and messages about other patients. I cannot be present mentally in a goals of care meeting if I am being asked to also take care of a dozen other patients at the time.” “Morally I have a hard time reconciling parental wishes with what I may feel is best as a provider.” Domain 2: Available End-of-life Care Resources and Supports Theme Categories Quotations Incongruous Team Structure and Resources for Effective PC · Staffing limitations · Fear of burnout. “I think continuity is nice, but our shifts being so long there is typically enough time for a parent to become comfortable with the nurse for the day. I think… parents understand that it cannot be the same nurse every day” “Although continuity of care is important it can become quite emotionally taxing on the team.” Opportunities for Specialty PC Support · Additional expertise in difficult cases · Unburdening of staff · Resources to families “I think the lack of providers with training in this area leads to us spinning our wheels and unwilling to try new things.” “A palliative care service could support with this [moral] distress by recommending specific symptom management plans and by performing emotional labor with families that residents and APP’s don't have time for.” Family-Centered Continuity Across the Dying Process · Desire for primary NICU team to be present for families to build rapport · Recognition that end-of-life is not a singular event but a process. · Multidisciplinary support is required before, during, and after a NICU death. “The staff who has been taking care of baby and had established good rapport with the family should be there.” “There needs to be a dedicated palliative care service that establishes relationships with families prior to them dying and remains available throughout their hospitalization.” “It feels like families are whisked away after their babies die, when they probably need more support.” “Spiritual support needs to be a part of a proactive palliative care consult for every NICU baby with a high risk of morbidity and mortality.” Processes Supporting Staff Recovery · Teamwork · Opportunity to debrief · Reflecting on achieving the goal of easing patient/family suffering. “Knowing they are no longer suffering.” “Assurance/comfort from co-nurses that you did what you need to do in the best way you can and there are things that are beyond control” “Having debriefs with the NICU/peds staff.” Additional Declarations There is NO conflict of interest to disclose. Supplementary Files SupplementII.docx Supplement II SupplementI.pdf Supplement I SupplementIII.docx Supplement III Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-9022627","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Article","associatedPublications":[],"authors":[{"id":601597150,"identity":"c61884fa-228e-43ef-9e3c-630d69817b0c","order_by":0,"name":"Matthew Drago","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA7klEQVRIiWNgGAWjYJACZjB5AERUQIV48GtgbEZoOUOyFsY2IrTotp8//rig4jAD3+3Dj198nLfNXn7aAcYHb9twazE7k8zYPOPMYQbJc2lmljO33U7ccDuB2XAuPi0HgFp4224zGJxhMDPm3XY7wUA6gU2aF5+W84+BWv6BtLB/M+adc9tefnYC+2+8Wm6AbGkAaeExfgxkMDbcTmBjxq/lseFsnmP/eSTP8JQxzjgG8ktis+Scc/gclvjgM09NmhzfGfbNHz7UgByWfPDDmzLcWmAAFBFsEhA2YwNh9VDA/IFopaNgFIyCUTCiAAB7b1dZJuiC8wAAAABJRU5ErkJggg==","orcid":"https://orcid.org/0000-0001-8562-8929","institution":"Ichan School of Medicine at Mount Sainai Hospital","correspondingAuthor":true,"prefix":"","firstName":"Matthew","middleName":"","lastName":"Drago","suffix":""},{"id":601597151,"identity":"30e10415-4d25-4f2f-8d66-86076a6dcf07","order_by":1,"name":"Danielle Zamalin","email":"","orcid":"","institution":"Children's National Hospital","correspondingAuthor":false,"prefix":"","firstName":"Danielle","middleName":"","lastName":"Zamalin","suffix":""},{"id":601597152,"identity":"959389a3-c73b-401c-9428-1b069af259b8","order_by":2,"name":"Rachel Reed","email":"","orcid":"https://orcid.org/0000-0003-4202-1400","institution":"Mount Sinai Health System","correspondingAuthor":false,"prefix":"","firstName":"Rachel","middleName":"","lastName":"Reed","suffix":""},{"id":601597153,"identity":"438b575e-c230-4b8d-a07c-b4854b571550","order_by":3,"name":"Robert Green","email":"","orcid":"https://orcid.org/0000-0003-0588-3722","institution":"Mount Sinai School of Medicine","correspondingAuthor":false,"prefix":"","firstName":"Robert","middleName":"","lastName":"Green","suffix":""}],"badges":[],"createdAt":"2026-03-03 17:21:47","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-9022627/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-9022627/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":108804068,"identity":"3efa2400-f865-4823-a903-be53c313fbbb","added_by":"auto","created_at":"2026-05-08 15:15:17","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":274683,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9022627/v1/379a0446-5f67-4853-b54f-04997bc4b5cd.pdf"},{"id":104428710,"identity":"c3a3e39b-b164-4afa-8e5c-05c6a8890c11","added_by":"auto","created_at":"2026-03-11 15:12:26","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":15735,"visible":true,"origin":"","legend":"Supplement II","description":"","filename":"SupplementII.docx","url":"https://assets-eu.researchsquare.com/files/rs-9022627/v1/1e83c41331615e180eea03ef.docx"},{"id":104428661,"identity":"fd21c1be-f8ad-4514-ac2c-960336f6f238","added_by":"auto","created_at":"2026-03-11 15:12:22","extension":"pdf","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":48293,"visible":true,"origin":"","legend":"Supplement I","description":"","filename":"SupplementI.pdf","url":"https://assets-eu.researchsquare.com/files/rs-9022627/v1/1797828f6d3a2ba00120b695.pdf"},{"id":104428719,"identity":"6f137d46-4ae0-48e4-94de-3ca7a475d7f7","added_by":"auto","created_at":"2026-03-11 15:12:32","extension":"docx","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":14857,"visible":true,"origin":"","legend":"Supplement III","description":"","filename":"SupplementIII.docx","url":"https://assets-eu.researchsquare.com/files/rs-9022627/v1/dfc872766ab4b6fff8a6a6ea.docx"}],"financialInterests":"There is \u003cb\u003eNO\u003c/b\u003e conflict of interest to disclose.","formattedTitle":"Comfort and Conflict in Neonatal End-of-Life Care: A Mixed-Methods Study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eHistorically, most EOLC in the Neonatal Intensive Care Unit (NICU) occurred acutely due to critically-ill infants failing to respond to trials of intensive care early in their course.\u003csup\u003e\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u003c/sup\u003e Today, many families learn even before birth that their child has a life-limiting condition. As a result, perinatal palliative care has emerged to provide more holistic care for infants with uncertain futures. \u003csup\u003e2\u0026ndash;6\u003c/sup\u003e However, many infants still die in the neonatal intensive care setting, with most NICU deaths now occurring after redirection or non-escalation of care later in the infants\u0026rsquo; course. \u003csup\u003e7\u0026ndash;11\u003c/sup\u003e Therefore, EOLC remains a critical and expanding competency for NICU providers.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eDespite its importance, many struggle to develop confidence in providing EOLC. Programmatic PC consultations, trigger criteria, and standardized protocols have demonstrated improvements in communication, symptom management, and care coordination.\u003csup\u003e\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan additionalcitationids=\"CR14\" citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e\u003c/sup\u003e However, availability of guidelines and specialty PC services remains variable across centers.\u003csup\u003e\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u003c/sup\u003e While survey studies have identified barriers to PC implementation in certain provider groups, none have integrated quantitative predictors of provider comfort with qualitative exploration of team culture and system supports within the same framework.\u003csup\u003e\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003e We aimed to characterize neonatal providers\u0026rsquo; perceptions of neonatal EOLC through qualitative and quantitative analysis of a survey targeting provider comfort with end-of-life care practices, perceived PC resources, and support in their unit. We hypothesize that perceptions of neonatal EOLC will vary amongst providers based on role and level of experience, and that responses will help identify how gaps may be addressed.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eThis is a single-center study of NICU medical providers at a level III and level IV NICU in the Mount Sinai Health System\u0026ndash;Mount Sinai West (MSW) and Mount Sinai Hospital (MSH), respectively. Between 2022 and 2023, MSW had approximately 4,300\u0026ndash;5,000 live births, with 2\u0026ndash;5 NICU mortalities per year. During the same period, MSH had approximately 6,400\u0026ndash;6,700 live births and 20\u0026ndash;22 NICU mortalities yearly.\u003c/p\u003e \u003cp\u003eAt the time of the survey, neither hospital had sub-specialized Pediatric PC consultation support, and all PC was provided by the primary teams. At MSW this consisted of a Neonatal Bereavement Team composed of a neonatologist, pediatric hospitalists, NICU nurses, and a social worker who worked to standardize the approach to infant death in the unit via checklists and written guides. At MSH, the NICU clinical team was supported by a pediatric chaplain, social workers, and child life therapists. A bereavement committee at MSH provided additional resources to families who experienced the death of a child. MSH did not have written end-of-life care guidelines at the time of the survey.\u003c/p\u003e \u003cp\u003eBetween January and May 2024, an anonymous survey was sent electronically to NICU providers at both hospitals, including NICU nurses, advanced practice providers, pediatric residents, neonatal fellows, neonatal hospitalists and neonatologists. Responses were collected via REDCap, a secure electronic application for survey distribution. The survey introduction noted that respondents were providing consent to publish aggregate results through participation in the study. The research was deemed exempt by the Mount Sinai Institutional Review Board.\u003c/p\u003e \u003cp\u003eThe survey was designed based upon a literature review of neonatal PC. Questions were informed by multidisciplinary discussions amongst stakeholders from nursing, front line providers, and attending physicians within the target study population. It was tested for face validity by five NICU medical providers prior to distribution.\u003c/p\u003e \u003cp\u003eThe survey included 5-point Likert scale responses, 4-point quantitative responses, dichotomous responses, and free text entries and consisted of 41 questions (Supplement I). The first questions were related to provider characteristics, including NICU provider role, primary hospital, years of experience, and prior training in EOLC. The remaining questions targeted two domains: 1) comfort with participation in EOLC and 2) available PC resources and support. The survey questions in each domain are indicated in Supplement II. To assure the internal consistency of the survey, a reliability analysis was performed on these two domains which obtained Cronbach\u0026rsquo;s α coefficients of 0.719 and 0.825 respectively. A convenience sample size was used. Inductive thematic analysis was performed to identify and group recurring themes amongst free-text responses. Through an iterative process, three independent coders organized individual responses into categories and then independent overarching themes within the two targeted domains of comfort with participation in EOLC and available PC resources and support. Differences were resolved by consensus.\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStatistical Analysis\u003c/h2\u003e \u003cp\u003eDescriptive analysis was used to summarize the sample. Multivariable hierarchical linear regression models were then built to determine which provider characteristics, as independent variables, were associated with scores for each of the two domains described above, as the dependent variables or outcomes.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u003c/sup\u003e That is, the survey responses were divided into two groups (domains) thus defining two dependent variables or outcomes for each study subject as the average response to the survey questions in the respective domain. We then built a linear regression model for the average response for each of the two grouped variable averages as outcomes with the following independent candidate variables that were pre-selected based on conceptual relevance: years NICU experience, years at Mount Sinai, role (practitioner, nurse, trainee), NICU site, experience with EOLC, and having received specific training in EOLC. See Supplement III for details.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStudy Population\u003c/h2\u003e \u003cp\u003eResponses were collected from 83 clinicians (25% response rate): 61% from the level IV NICU and 36% from the level III NICU (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Among respondents, the majority (54%) were nurses, 22% were trainees including residents and neonatology fellows, and 10% were attending neonatologists. Nearly half of respondents (49%) had little experience, having worked in a NICU for 5 years or less. Most respondents (74%) stated they had no specific training in caring for dying infants, yet the majority (75%) had cared for infants receiving end-of-life care, with 20% having done so once or twice.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eLinear Regression\u003c/h3\u003e\n\u003cp\u003eRegression models were used to determine which characteristics independently contributed to our two domains of responses: \u0026ldquo;Comfort with Participating in EOLC\u0026rdquo; and \u0026ldquo;Available PC Resources and Support.\u0026rdquo; The data for the regression models are the average responses of the study subjects to the Likert scale questions (1\u0026ndash;5 not collapsed) in each domain. The regression models are described separately.\u003c/p\u003e\n\u003ch3\u003eComfort with Participating in EOLC\u003c/h3\u003e\n\u003cp\u003eThe final model showed that providers with greater experience with EOLC (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001), being a trainee (p\u0026thinsp;=\u0026thinsp;0.012), and having specific training in EOLC (p\u0026thinsp;=\u0026thinsp;0.037) all impacted perceived comfort with participating in EOLC, with all other characteristics being not significant. The model equation had a mean score of 2.847\u0026thinsp;\u0026plusmn;\u0026thinsp;0.159 (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001). Experience with EOLC resulted in stepwise increases in the score: no experience increased the score 0.228\u0026thinsp;\u0026plusmn;\u0026thinsp;0.02; 1\u0026ndash;2 years\u0026rsquo; experience increased the score twice that much; 3\u0026ndash;5 years\u0026rsquo; experience increased the score three times that number; greater than five years\u0026rsquo; experience increased the score four times that number or 0.912. Providers who reported receiving specific training in EOLC had higher mean scores by 0.285\u0026thinsp;\u0026plusmn;\u0026thinsp;0.134. Trainees had less comfort as indicated by a decrease in score of 0.373\u0026thinsp;\u0026plusmn;\u0026thinsp;0.144 compared to nurses and practitioners. This model accounted for 35.3% of the variation in EOLC engagement scores (R\u003csup\u003e2\u003c/sup\u003e\u0026thinsp;=\u0026thinsp;0.353.)\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eAvailable Palliative Care Resources and Support\u003c/h2\u003e \u003cp\u003eThe regression model had a mean score of 3.126\u0026thinsp;\u0026plusmn;\u0026thinsp;0.107 (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001) for questions assessing perceived PC resources and support. Practitioners (neonatologists, pediatricians, and nurse practitioners) were more likely to report adequate PC resources and support (score in model increase 0.374\u0026thinsp;\u0026plusmn;\u0026thinsp;0.200, p\u0026thinsp;=\u0026thinsp;0.066) compared to staff nurses, residents, and neonatology fellows. Providers of care at our system\u0026rsquo;s Level 3 NICU were more likely to report adequate resources than those at the Level 4 academic medical center. No other variables were significant. This model accounted for 13% of the variation in PC resources scores (R\u003csup\u003e2\u003c/sup\u003e\u0026thinsp;=\u0026thinsp;0.130)\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eQualitative Analysis\u003c/h3\u003e\n\u003cp\u003eFree-text responses underwent inductive thematic analysis and generated eight analytic themes across the two target domains (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). In the first domain, providers described that discomfort with participating in EOLC stemmed not only from competency gaps in both communication and symptom management skills, but also from PC culture and team alignment in the NICU. Providers described difficulty finding a shared understanding of the concurrent roles of intensive and PC. They noted interpersonal conflicts (between family and staff or amongst providers) such as cultural or religious beliefs that contributed to this lack of a unifying goal. Lastly, providers shared internal conflicts (experienced by individuals) that caused discomfort when participating in EOLC. These conflicts arose not only from their own personal beliefs and biases but also competing demands. Responding to other urgent patient needs prevented providers from feeling they could fully participate in EOLC.\u003c/p\u003e \u003cp\u003eIn the second domain, perceived available PC resources and supports themes reflected incongruous team structure and resources for effective PC. For example, providers described how they were able to bond with families over the duration of a shift, but then noted lack of day-to-day continuity with rotating providers. This was seen as an opportunity for specialty PC to not only lend expertise in EOLC, but also a layer of continuity in addition to the primary team. EOLC was seen as a continuum and not a discrete event in the NICU. Thus, it was important for respondents to provide family-centered continuity across the dying process. Lastly, after a death occurs in the NICU, staff noted the need for processes to support staff recovery through debriefing EOLC. This created a sense of teamwork, acknowledgement of comfort as a goal, and was seen as an opportunity to learn for those who were not intimately involved in EOLC .\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eDespite gains in implementing PC in the NICU, continued improvement in care quality and institutional investment requires additional data on current neonatal PC practices, training, and resources.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e,\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u003c/sup\u003e While separate qualitative or quantitative studies have previously focused on perceptions of PC for individual provider groups or trainees our study is the first to apply a mixed-methods approach to study these groups together.\u003csup\u003e\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e,\u003cspan additionalcitationids=\"CR21 CR22\" citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u003c/sup\u003e As predicted, provider role and experience were significant variables, but how these and other variables impacted perceived comfort with participation in EOLC vs perceived PC resources and supports varied. Our qualitative analysis adds needed context to the complexity of issues that underly variations we identified in each domain.\u003c/p\u003e \u003cp\u003eOur first domain explored comfort with participation in EOLC both in regard to provider skills and interaction with families and other staff. Looking at individual responses within this domain, respondents had the least comfort overall guiding families through withdrawal of life-sustaining therapies or communicating about the dying process. This correlates with the importance of trainee status and prior training in EOLC on average domain scores and confirms that educational interventions to bridge competency gaps are needed. However, qualitative themes also called for interventions to strengthen team cohesion around a shared goal at EOL. This shared vision must allow for diverse team and family beliefs, while also accounting for the emotional strain EOLC causes in a busy NICU setting. This may partially explain why previously reported educational interventions have had mixed success in meeting PC learning objectives.\u003csup\u003e\u003cspan additionalcitationids=\"CR25\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eThis domain also included questions regarding feeling excluded from goals of care conversations, or unable to share personal opinions on EOLC. This may account for the significance that experience level played in this domain. This is consistent with the Arzuaga et al study of pediatric trainees. While we demonstrated a stepwise increase in comfort with gained experience, Arzuaga et al found that comfort with EOLC skills sometimes lagged behind gaining experience in those aspects of care.\u003csup\u003e\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u003c/sup\u003e In our qualitative analysis, respondents described internal conflicts felt while participating in EOLC, suggesting that addressing emotional, moral and spiritual distress could help prevent this lag.\u003c/p\u003e \u003cp\u003eExperienced providers serve as essential role models for trainees in how to conduct EOLC. While attending neonatologists in our study reported high comfort in performing EOLC themselves, this self-report has been previously shown to not always translate into using best practices.\u003csup\u003e\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u003c/sup\u003e In addition to maintaining their own skillsets, attendings should also consider how to better incorporate trainees, nurses, and less experienced providers into EOLC. While we did not directly observe how care teams divided EOLC work in the NICU, one can hypothesize that the most difficult conversations with families may be reserved for smaller, more intimate conversations with the most experienced providers out of reverence for families. While including the larger NICU team, including trainees, in these conversations may not always be practical or appropriate, providers that lead them should listen to our respondents call for more team debriefs.\u003c/p\u003e \u003cp\u003eThis consideration for team cohesion may not only improve training and confidence, but address both personal and inter-personal conflicts that arise in EOLC.\u003csup\u003e\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e,\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e,\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e,\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e,\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u003c/sup\u003e For example, inclusive interdisciplinary care may allow more staff to process their feelings, morals and opinions on EOLC, reducing moral distress.\u003csup\u003e\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e,\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e\u003c/sup\u003e Our respondents also noted the importance of these processes for recovery after participating in PC, such as time for reflection on positives achieved through PC, despite a patient having a poor outcome. This may lessen burnout, which our respondents noted was a result of staffing constraints and competing demands that prevented them from fulfilling their duty to be present with families and patients at end of life.\u003c/p\u003e \u003cp\u003e Within the second domain we explored if providers felt they had adequate time, resources and guidelines for performing PC in their unit. Despite respondents from the Level IV unit (where more deaths occur) reporting more EOLC experience and specific training, providers at the Level III unit perceived greater PC resources and support. Differences between provider groups were also found, but level of experience and prior training were not significant variables in this domain. These findings suggest that beyond experience and training, neonatal units would benefit from specific recommendations for staffing ratios to appropriately support staff when caring for infants who require EOLC. Such recommendations are currently lacking from the AAP\u0026rsquo;s and ACOG\u0026rsquo;s current \u003cem\u003eGuidelines for Perinatal Care\u003c/em\u003e.\u003csup\u003e\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u003c/sup\u003e These guidelines also lack recommendations for multidisciplinary personnel trained in PC, and physical space suitable to provide that care that are needed to align with the AAP\u0026rsquo;s \u003cem\u003eGuidance for Pediatric End-of-Life Care\u003c/em\u003e.\u0026rdquo;\u003csup\u003e18,31\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eMany respondents also noted a lack of pediatric subspecialty PC support, which is not unique to our health system.\u003csup\u003e\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e,\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u003c/sup\u003e While respondents noted the obvious expertise that specialty PC providers would bring to difficult cases, they also felt they could unburden NICU staff by maintaining a PC focus without competing ICU demands. The addition of specialty PC, however, is not a silver bullet to resolve the many issues that remain with integration of PC in the NICU. Our study importantly identified a desire by NICU providers to continue to play a central role in primary neonatal PC. Thus, hospital systems both with and without PC subspecialists should incorporate simulations, guidelines, and order-sets for primary neonatal teams, as these have been shown to improve important PC practices in other settings.\u003csup\u003e\u003cspan additionalcitationids=\"CR35\" citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eIn addition to making unit-specific resources, further study is warranted to assess parental perspectives. Units that implement PC education or clinical practice guidelines should also implement quality improvement initiatives to track not only whether those interventions maintain improvements in PC over time, but if alignment in unit culture and attitudes correlates with those improvements.\u003csup\u003e\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eBy nature of being a survey, our study is bound by several limitations. First, it was conducted within a single healthcare system. However, conducting our survey at both a Level III and Level IV NICU make our results more generalizable. Second, survey studies may result in self-selection bias where those with an interest in, or concern with, delivery of PC are more likely to respond and report shortcomings in current practice. Similarly, new trainees may mistakenly overestimate deficiencies in their training due to limited exposure and experience, while experienced providers may overstate comfort. Thus, direct assessment of provider expertise for both trainees and educators is necessary to ensure quality in PC education. While EOLC is a significant domain of PC, we recognize that it is only one component and further research should consider how improving all domains of holistic PC impacts EOLC. Finally, while the overall survey response rate was low, as is typical for voluntary, survey-based studies, the quantitative and qualitative findings remain significant.\u003c/p\u003e \u003cp\u003eNeonatal EOLC is a core competency for neonatal providers. Our findings show that discomfort with EOLC is not simply a matter of insufficient knowledge, but reflects a combination of limited experiential learning, competing clinical demands, variable team culture, and inconsistent system supports. Providers across roles expressed a clear desire to participate meaningfully in primary PC, yet many feel underprepared or constrained by structural and cultural factors within the NICU environment. These results suggest that improving neonatal EOLC will require more than isolated educational interventions; it will require deliberate efforts to foster interdisciplinary inclusion, normalize PC as part of routine NICU care, and create systems that allow providers the time, support, and psychological safety needed to engage fully in this work. As survival of medically complex infants continues to improve, so will the need for longitudinal palliative involvement. NICUs must invest not only in training, but in culture and infrastructure to sustain high-quality, family-centered EOLC. Doing so has the potential to improve experiences for infants, families, and the clinicians who care for them.\u003c/p\u003e "},{"header":"Abbreviations","content":"\u003cp\u003eNeonatal Intensive Care Unit (NICU), Palliative Care (PC), End-of-Life Care (EOLC), Mount Sinai West (MSW), Mount Sinai Hospital (MSH).\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eConflict of Interest Disclosures (includes financial disclosures):\u0026nbsp;\u003c/strong\u003eThe authors have no conflicts of interest to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding/Support:\u0026nbsp;\u003c/strong\u003eNo funding was secured for this study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMeadow W. Epidemiology, economics, and ethics in the NICU: reflections from 30 years of neonatology practice. 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Perspect Med Educ. 2015;4(1):25\u0026ndash;32.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWraight CL, Eickhoff JC, McAdams RM. Gaps in Palliative Care Education among Neonatology Fellowship Trainees. Palliat Med Rep. 2021;2(1):212\u0026ndash;217.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHenner N, Boss RD. Neonatologist training in communication and palliative care. Semin Perinatol. 2017;41(2):106\u0026ndash;110.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHarris LL, Placencia FX, Arnold JL, et al. A Structured End-of-Life Curriculum for Neonatal-Perinatal Postdoctoral Fellows. Am J Hosp Palliat Care. 2015;32(3):253\u0026ndash;61.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBrock KE, Cohen HJ, Sourkes BM, et al. Training Pediatric Fellows in Palliative Care: A Pilot Comparison of Simulation Training and Didactic Education. J Palliat Med. 2017;20(10):1074\u0026ndash;1084.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRenton K, Quinton H, Mayer, AT. Educational impact of paediatric palliative simulation study days. BMJ Support Palliat Care. 2017;7(1):88\u0026ndash;93\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSanderson A, Hall AM, Wolfe J. Advance Care Discussions: Clinician Preparedness and Practices. J Pain Symptom Manage. 2016;51(3):520\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePrentice T, Janvier A, Gillam L, et al. Moral distress within neonatal and paediatric intensive care units: a systematic review. Arch Dis Child. 2016;101(8):701\u0026ndash;708.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJames R. Perinatal Palliative Care. Obstet Gynecol. 2020;135(6):1484.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCavinder C. The relationship between providing neonatal palliative care and nurses\u0026rsquo; moral distress: an integrative review. Adv Neonatal Care. 2014;14(5):322\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAmerican Academy of Pediatrics \u0026amp; American College of Obstetricians and Gynecologists. Guidelines for perinatal care. 8th ed. American Academy of Pediatrics; The American College of Obstetricians and Gynecologists; Elk Grove Village, IL: Wshington DC: 2017.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFeudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children\u0026rsquo;s hospitals: A cross-Sectional national survey. Pediatrics. 2013;132(6):1063\u0026ndash;70.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWilkinson D, Bertaud S, Mancini A, et al. Recognising Uncertainty: an integrated framework for palliative care in perinatal medicine. Arch Dis Child Fetal Neonatal Ed. 2025;110(3):236\u0026ndash;244\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHammond J, Wool C, Parravicini E. Assessment of Healthcare Professionals\u0026rsquo; Self-Perceived Competence in Perinatal/Neonatal Palliative Care After a 3-Day Training Course. Front Pediatr. 2020;8:571335.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYounge N, Smith PB, Goldberg RN, et al. Impact of a Palliative Care Program on End-of-life Care in a Neonatal Intensive Care Unit. J Perinatol. 2015;35(3):218\u0026ndash;22.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eForman KR, Thompson-Branch A. Educational perspectives: Palliative care education in neonatal-perinatal medicine fellowship. Neoreviews. 2020;21(2):e72\u0026ndash;e79.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLofgren H, Lentin S, Dimatteo A, Pasquale E, Salant J, Tiwari P. A multidisciplinary quality improvement initiative to improve neonatal end-of-life care in a level IV NICU. BMC Palliative Care. (2025); 24:286.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003eTable 1. Demographics of Survey Respondents\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"371\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 211px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u003cstrong\u003e% \u0026nbsp; \u0026nbsp; Participants\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e(n = 83)\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 211px;\"\u003e\n \u003cp\u003eHospital Site\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Mount Sinai Hospital (MSH)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Mount Sinai West (MSW)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Unknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e62 (51)\u003c/p\u003e\n \u003cp\u003e36 (30)\u003c/p\u003e\n \u003cp\u003e2 (2)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 211px;\"\u003e\n \u003cp\u003ePosition\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Attending Neonatologist\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Attending Pediatrician\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Neonatology Fellow\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Pediatrics Resident\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Advanced Practice Provider (APP)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Nurse\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Unknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e10 (8)\u003c/p\u003e\n \u003cp\u003e7 (6)\u003c/p\u003e\n \u003cp\u003e1 (1)\u003c/p\u003e\n \u003cp\u003e21 (17)\u003c/p\u003e\n \u003cp\u003e2 (2)\u003c/p\u003e\n \u003cp\u003e54 (45)\u003c/p\u003e\n \u003cp\u003e5 (4)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 211px;\"\u003e\n \u003cp\u003eExperience in any NICU (yrs)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026lt; 1\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;1 - 5\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;5 - 10\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026gt; 10\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Unknown\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e16 (13)\u003c/p\u003e\n \u003cp\u003e34 (28)\u003c/p\u003e\n \u003cp\u003e17 (14)\u003c/p\u003e\n \u003cp\u003e30 (25)\u003c/p\u003e\n \u003cp\u003e3 (3)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 211px;\"\u003e\n \u003cp\u003eExperience in Mount Sinai NICU (yrs)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026lt; 1\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;1 - 5\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;5 - 10\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026gt; 10\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Unknown\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eExperience providing EOLC\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No, never\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes, 1-5 times\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes, \u0026gt;5 times\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003eSpecific training in EOLC\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;No\u003c/p\u003e\n \u003cp\u003e\u0026nbsp; \u0026nbsp; \u0026nbsp;Yes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 160px;\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e22 (18)\u003c/p\u003e\n \u003cp\u003e42 (35)\u003c/p\u003e\n \u003cp\u003e13 (11)\u003c/p\u003e\n \u003cp\u003e19 (16)\u003c/p\u003e\n \u003cp\u003e4 (3)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e25.3 (21)\u003c/p\u003e\n \u003cp\u003e40 (33)\u003c/p\u003e\n \u003cp\u003e35 (29)\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e74 (61)\u003c/p\u003e\n \u003cp\u003e26 (21)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eCharacteristics of survey respondents\u003c/p\u003e\n\n\u003cp\u003e\u003cstrong\u003eTable 2:\u003c/strong\u003e Qualitative thematic analysis of free-text responses. Themes were generated through inductive analysis by three independent coders. Differences were resolved by consensus.\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"633\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 633px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDomain 1: Participation in EOLC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTheme\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategories\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eExample Quotations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCompetency Gaps in Primary PC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eEOL courses, trainings and algorithms\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eSymptom management\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eCommunication\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eNeed to understand the physiologic process of EOL\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;Palliative care can be peaceful and beautiful in the right environment. Education and support that is specific to these situations could help providers and nurses.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Educating members of staff in pain management. Attendings/staff being aware that just because a patient is unable to move they can still feel pain.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003ePC Culture and Team Alignment\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eImportance of team cohesion\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eNeed for a shared goal\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eAcknowledge/understand patient/family/staff distress\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003ePromoting comfort\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eAcceptance of differing opinions\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;It is especially hard when the medical team seem to be \u0026lsquo;trying everything\u0026rsquo;, even very painful interventions with little hope of success.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Palliative care and intensive care should not be mutually exclusive but it feels like it is here.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Providers should be more agreeable to each other with the plan of care.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInterpersonal (Family-Team and\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eInter-Team)\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003eConflicts in PC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eDiffering beliefs about uncertain prognosis\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eDifferent religious beliefs\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eDifferent cultural beliefs\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;I think death is so hard on the family, but the baby is our patient who we should advocate for. But at the same time it is the family who can speak that we develop a relationship with.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;It is difficult when parents have [a] different belief system [than] mine and when they are still angry or bitter with everything happening [with] the baby.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Religious differences- not all physicians seem on board [with] this, these beliefs are often shot down by some providers.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 108px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eInternal Conflicts in PC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 199px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eMoral distress\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eSpiritual concerns\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003ePersonal bias\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eCompeting demands\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;I am constantly being barraged with calls and messages about other patients. I cannot be present mentally in a goals of care meeting if I am being asked to also take care of a dozen other patients at the time.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Morally I have a hard time reconciling parental wishes with what I may feel is best as a provider.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"636\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"3\" valign=\"top\" style=\"width: 636px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eDomain 2: Available End-of-life Care Resources and Supports\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eTheme\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eCategories\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eQuotations\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eIncongruous Team Structure and Resources for Effective PC\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eStaffing limitations\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eFear of burnout.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;I think continuity is nice, but our shifts being so long there is typically enough time for a parent to become comfortable with the nurse for the day. I think\u0026hellip; parents understand that it cannot be the same nurse every day\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Although continuity of care is important it can become quite emotionally taxing on the team.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eOpportunities for Specialty PC Support\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eAdditional expertise in difficult cases\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eUnburdening of staff\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eResources to families\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;I think the lack of providers with training in this area leads to us spinning our wheels and unwilling to try new things.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;A palliative care service could support with this [moral] distress by recommending specific symptom management plans and by performing emotional labor with families that residents and APP\u0026rsquo;s don\u0026apos;t have time for.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eFamily-Centered Continuity Across the Dying Process\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eDesire for\u003c/em\u003e \u003cem\u003eprimary NICU team to be present for families to build rapport\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eRecognition that end-of-life is not a singular event but a process.\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eMultidisciplinary support is required before, during, and after a NICU death.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;The staff who has been taking care of baby and had established good rapport with the family should be there.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;There needs to be a dedicated palliative care service that establishes relationships with families prior to them dying and remains available throughout their hospitalization.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;It feels like families are whisked away after their babies die, when they probably need more support.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Spiritual support needs to be a part of a proactive palliative care consult for every NICU baby with a high risk of morbidity and mortality.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\" style=\"width: 122px;\"\u003e\n \u003cp\u003e\u003cstrong\u003eProcesses Supporting Staff Recovery\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003e\u003cstrong\u003e\u003cu\u003e\u0026nbsp;\u003c/u\u003e\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 187px;\"\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eTeamwork\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eOpportunity to debrief\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u0026middot; \u003cem\u003eReflecting on achieving the goal of easing patient/family suffering.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\" style=\"width: 326px;\"\u003e\n \u003cp\u003e\u0026ldquo;Knowing they are no longer suffering.\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Assurance/comfort from co-nurses that you did what you need to do in the best way you can and there are things that are beyond control\u0026rdquo;\u003c/p\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;Having debriefs with the NICU/peds staff.\u0026rdquo;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Neonatal End-of-Life, Palliative Care, Training","lastPublishedDoi":"10.21203/rs.3.rs-9022627/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-9022627/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eObjective\u003c/h2\u003e \u003cp\u003eTo evaluate neonatal providers\u0026rsquo; comfort with end-of-life care (EOLC) and perceived palliative care (PC) resources using a two-domain analytic framework.\u003c/p\u003e\u003ch2\u003eStudy Design:\u003c/h2\u003e \u003cp\u003eMixed-methods survey of nurses, physicians, advanced practice providers, and trainees in Level III and Level IV NICUs. Items were grouped into two domains: (1) comfort with participation in EOLC and (2) perceived PC resources and support. Multivariable hierarchical linear regression identified independent predictors of each domain, and free-text responses underwent inductive thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eEighty-three clinicians responded. EOLC experience (p\u0026thinsp;\u0026lt;\u0026thinsp;0.001) and prior EOLC training (p\u0026thinsp;=\u0026thinsp;0.037) predicted higher comfort, whereas trainee status predicted lower comfort (p\u0026thinsp;=\u0026thinsp;0.012) (R\u0026sup2;=0.353). For perceived PC resources, provider role and NICU site were associated with higher scores (R\u0026sup2;=0.130). Qualitative themes highlighted competency gaps, personal and interpersonal conflicts, variable team culture, and structural constraints.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eProvider comfort in neonatal EOLC reflects experiential, educational, and system-level factors. Interventions must combine training with cultural and structural investment.\u003c/p\u003e","manuscriptTitle":"Comfort and Conflict in Neonatal End-of-Life Care: A Mixed-Methods Study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-03-11 15:10:33","doi":"10.21203/rs.3.rs-9022627/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"6f9e1c66-7ed4-455c-9d77-df96d0c36552","owner":[],"postedDate":"March 11th, 2026","published":true,"recentEditorialEvents":[{"type":"decision","content":"Reject after peer review","date":"2026-05-05T16:25:24+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"This content is not available.","date":"2026-05-01T17:30:08+00:00","index":2,"fulltext":"This content is not available."}],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":64021615,"name":"Health sciences/Health care/Quality of life"},{"id":64021616,"name":"Health sciences/Health care/Paediatrics"}],"tags":[],"updatedAt":"2026-05-05T16:35:11+00:00","versionOfRecord":[],"versionCreatedAt":"2026-03-11 15:10:33","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-9022627","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-9022627","identity":"rs-9022627","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}