The Creation and Implementation of a Neonatal Palliative Care Toolkit

According to the March of Dimes (2020), the infant mortality rate in Salt Lake County, Utah was 5.4 per 1,000 live births, with 69% of these infant deaths occurring during the neonatal period. Advances in perinatal medicine have led to increased identification of fetuses with fatal or life-limiting conditions. Prenatal identification of such conditions allows parents to make informed decisions regarding continuing or terminating pregnancy. Although fatal or life-threatening conditions are rare, some parents choose to continue their pregnancy opting for palliative care following the delivery of their newborn. A large urban hospital in the Intermountain West with a Level III Newborn Intensive Care Unit (NICU) and high-risk Labor and Delivery (L&D) Unit lacked a perinatal Neonatal Palliative Care (NPC) pathway for the NICU and L&D Units to follow collaboratively. In addition, caregivers possessed suboptimal knowledge about neonatal end-of-life (EOL) care and the neonatal care team members had not received training about the EOL process or NPC but were expected to manage and provide this complex care. A quality improvement project was developed to create a NPC Toolkit to increase the education, confidence, and skill of neonatal caregivers regarding the provision of neonatal EOL and NPC. The Toolkit included a NPC Checklist, educational presentation related to the neonatal EOL process and NPC, and a Patient Tracking Form for the multi-disciplinary care team. Project participants completed pre-intervention surveys to gauge their confidence in recognizing EOL behaviors of neonates, their attitudes toward implementation of a NPC Toolkit, and their confidence regarding the provision of NPC for infants and their families. Simulation-based NPC scenarios were offered to neonatal caregivers to gather feedback about the NPC process and aid in the creation of the NPC Checklist. An educational presentation regarding neonatal EOL and NPC was created and presented to the neonatal care team. Post- intervention surveys were sent to the neonatal team to determine the effectiveness of the education and reassess their confidence in the provision of neonatal EOL and palliative care. 100% of participants (n=10) reported increased confidence in their recognition of neonatal EOL compared to only 50% (n=5) prior to implementation of the NPC Toolkit. 90% (n=9) of participants reported increased confidence in their provision of NPC post-implementation of the NPC Toolkit. 100% (n=10) of participants agreed that implementation of the NPC Toolkit was beneficial to their practice in providing NPC. Many neonatal care team participants reported increased confidence in their ability to recognize and address the physiologic and behavioral changes a neonate undergoes during the EOL process after the implementation of the NPC Toolkit. Participants also reported increased confidence in their ability to provide NPC to infants with life-limiting or fatal conditions. The NPC Toolkit is a valuable resource for neonatal care teams regarding the provision of evidence-based, collaborative, and consistent NPC for infants born with fatal or life-limiting conditions.

1 The Creation and Implementation of a Neonatal Palliative Care Toolkit Charise Warren, Ryan Bierer, and Jennifer Hamilton College of Nursing: The University of Utah NURS 7703: DNP Scholarly Project III May 5, 2023 2 Abstract Background: According to the March of Dimes (2020), the infant mortality rate in Salt Lake County, Utah was 5.4 per 1,000 live births, with 69% of these infant deaths occurring during the neonatal period. Advances in perinatal medicine have led to increased identification of fetuses with fatal or life-limiting conditions. Prenatal identification of such conditions allows parents to make informed decisions regarding continuing or terminating pregnancy. Although fatal or life-threatening conditions are rare, some parents choose to continue their pregnancy opting for palliative care following the delivery of their newborn. Local Problem: A large urban hospital in the Intermountain West with a Level III Newborn Intensive Care Unit (NICU) and high-risk Labor and Delivery (L&D) Unit lacked a perinatal Neonatal Palliative Care (NPC) pathway for the NICU and L&D Units to follow collaboratively. In addition, caregivers possessed suboptimal knowledge about neonatal end-of-life (EOL) care and the neonatal care team members had not received training about the EOL process or NPC but were expected to manage and provide this complex care. Methods: A quality improvement project was developed to create a NPC Toolkit to increase the education, confidence, and skill of neonatal caregivers regarding the provision of neonatal EOL and NPC. The Toolkit included a NPC Checklist, educational presentation related to the neonatal EOL process and NPC, and a Patient Tracking Form for the multi-disciplinary care team. Project participants completed pre-intervention surveys to gauge their confidence in recognizing EOL behaviors of neonates, their attitudes toward implementation of a NPC Toolkit, and their confidence regarding the provision of NPC for infants and their families. Simulation-based NPC scenarios were offered to neonatal caregivers to gather feedback about the NPC process and aid in the creation of the NPC Checklist. An educational presentation regarding neonatal EOL and NPC was created and presented to the neonatal care team. Postintervention surveys were sent to the neonatal team to determine the effectiveness of the education and reassess their confidence in the provision of neonatal EOL and palliative care. Results: 100% of participants (n=10) reported increased confidence in their recognition of neonatal EOL compared to only 50% (n=5) prior to implementation of the NPC Toolkit. 90% (n=9) of participants 3 reported increased confidence in their provision of NPC post-implementation of the NPC Toolkit. 100% (n=10) of participants agreed that implementation of the NPC Toolkit was beneficial to their practice in providing NPC. Conclusions: Many neonatal care team participants reported increased confidence in their ability to recognize and address the physiologic and behavioral changes a neonate undergoes during the EOL process after the implementation of the NPC Toolkit. Participants also reported increased confidence in their ability to provide NPC to infants with life-limiting or fatal conditions. The NPC Toolkit is a valuable resource for neonatal care teams regarding the provision of evidence-based, collaborative, and consistent NPC for infants born with fatal or life-limiting conditions. 4 The Creation and Implementation of a Neonatal Palliative Care Toolkit Problem Description Approximately 45,600 babies are born per year in Utah (March of Dimes, 2020). In Salt Lake County the infant mortality rate is 5.4 per 1,000 live births (March of Dimes, 2020). Roughly 69 percent of these infant deaths occurred during the neonatal period, or within the first 28-days of life (March of Dimes, 2020). The most common causes of death in this population include chromosomal abnormalities, congenital malformations, prematurity, and low-birth weight (March of Dimes, 2017). Advances in perinatal medicine over the last ten years have led to increased identification of fetuses with fatal or lifelimiting conditions (Ziegler and Kuebelbek, 2020). Often, these parents choose to continue their pregnancies, opting for a palliative care plan at delivery for their child (Ziegler & Kuebelbek, 2020). Although it does not occur frequently, neonatal death is unavoidable. A palliative care program, or pathway, is essential to optimize the quality of life and provide comfort-care to neonates with fatal or life-limiting conditions (Barbeyrac et al., 2021). It is crucial that the Labor and Delivery (L&D) Unit works collaboratively with the Neonatal Intensive Care Unit (NICU) to provide palliative care to this vulnerable population of infants. At a large, urban hospital with a Level III NICU in the Intermountain West, there is not an easily accessible or collaborative Neonatal Palliative Care (NPC) pathway for providers in these units to follow for the collaborative provision of family-centered palliative care after the birth of a neonate who has a fatal or life-limiting condition. The neonatal multidisciplinary care team at this facility do not receive formal training about the end-of-life (EOL) process or palliative care for neonates but are expected to manage and provide this care. Suboptimal knowledge of the neonatal EOL process and the provision of NPC can lead to anxiety, dissatisfaction, and overall lack of self-confidence when managing these patients (Kilcullen & Ireland, 2017). In addition, the lack of a clear NPC pathway leaves neonatal team members feeling overwhelmed and unsure of best practices when placed in a rare but critical EOL situation. There is a Neonatal Palliative Care Team available to support families and the healthcare team through the NPC process, but the team is not readily accessible at this facility, so their services are underutilized. This facility's L&D 5 Unit has a NPC plan, but the NICU does not. Informal feedback from the multidisciplinary team provided concern there is a general lack of staff knowledge about what resources are available to them to facilitate a “good death” through the provision of NPC. Available Knowledge The American College of Obstetricians and Gynecologists (ACOG), recommend that hospitals and neonatal care providers create collaborative perinatal NPC programs which include prenatal consultation once a fatal or life-limiting condition is identified; creation of a birth plan; access to neonatal or pediatric specialties as necessary; care during the prenatal, birth, and postnatal periods, in addition to bereavement services (Committee on Obstetric Practice, 2021). Currently, the facility under study does not offer an readily accessible or collaborative NPC pathway in the NICU and L&D Units to support the collaborative provision of palliative care after the birth of a neonate who has a fatal or life-limiting condition and their families. There is little to no education provided to the neonatal team, including Advanced Practice Providers (APPs), at this facility regarding the neonatal EOL process or the provision of NPC. According to Kilcullen and Ireland (2017), factors that negatively impact the adequate provision of NPC include lack of a clinical practice guideline (CPG), or pathway, for providers to follow and suboptimal provider knowledge about neonatal EOL care. The provision of NPC can be improved through early identification of neonates with fatal or life-limiting conditions, utilization of a palliative care pathway, and provider education about the neonatal EOL process (Humphrey et al., 2019; Kilcullen & Ireland, 2017). End-oflife care can be improved for patients when there is increased parent and staff satisfaction with the NPC process through the utilization of a clinical pathway, or checklist, to provide consistent, quality palliative care (Humphrey et al., 2019; Kilcullen & Ireland, 2017). All care team members who care for patients with life-threatening conditions should have basic palliative care skills (Marc-Aurele & English, 2017). The neonatal palliative care process can be improved through interventions such as simulation-based (SIM) sessions that allow for education and practice. McCoy et al. (2018), performed a study that revealed medical students who practiced 6 cardiopulmonary resuscitation (CPR) via hands-on simulation-based training followed the American Heart Association’s guidelines more accurately than those that completed traditional CPR training. Simulation-based training was utilized to allow the neonatal team members to practice their NPC skills prior to caring for dying patients. Additionally, SIM training was used to gather valuable feedback about the current NPC pathway, gather feedback about what the NPC Toolkit should include, increase adherence to the NPC pathway, improve confidence in the provision of palliative care, and improve care team member and the dying patients’ parent satisfaction with the EOL process. The utilization of SIM allowed the project lead to gather this information in a timely manner as occurrence of neonatal death at this facility are uncommon events. Rationale Kurt Lewin developed a 3-stage process, Lewin’s Model for Planned Change, to assist in peoples’ ability to adapt to change (Wojciechowski et al., 2016). The three stages of Lewin’s model consist of the Unfreezing Stage which includes the identification of a problem and the creation of problem awareness; the Changing Stage, which include assessing the barriers, supports, and benefits the change will bring; and the Refreezing Stage, which involves the acceptance and integration of the change (Wojciechowski et al., 2016). Lewin’s planned change theory was utilized to investigate the perinatal palliative care process between the L&D Unit and the Level III NICU in a large urban hospital that currently does not have an adequate collaborative perinatal NPC pathway in place. Utilization of this planned change model provides a framework to assist the team of neonatal care providers who work in the NICU, and L&D Units navigate the collaborative provision of palliative care for neonates born with fatal or life-limiting conditions (Figure 1). To allow the development and implementation of this change process, neonatal care team members will need to be motivated to learn about the neonatal EOL process and participate in a novel workflow process change regarding neonatal palliative care in the L&D Unit. This project will likely improve practice consistency between the NICU and L&D in providing quality NPC. Sustainability 7 of this new collaborative NPC process was reinforced by ongoing education, continual assessment of provider’s educational needs, and compliance with following the NPC Checklist. Specific Aims The goal of this quality improvement project was to revise and improve the perinatal palliative care process, through the creation of a NPC Toolkit, to be utilized by Level III NICU and L&D clinicians for the provision of consistent, collaborative, quality EOL care for neonates born with life-limiting or fatal conditions. Methods Context This quality improvement project was completed within a high-risk L&D Unit and Level III NICU at an urban hospital in the Intermountain West. Together, these units provide approximately 130 providers, including Neonatologists, Obstetricians, Certified Nurse-Midwives, Neonatal Nurse Practitioners (NNPs), Pharmacists, and Registered nurses (RN). The population includes infants of all gestational ages from diverse economic and racial backgrounds born with fatal or life-limiting conditions and their families who require collaborative palliative care after birth. The project lead for this quality improvement project is this student and RN working in the NICU. Other members of the team for this DNP project included a palliative care expert, NICU Nurse Manager, L&D Nurse Manager, NNP Lead, Charge Nurse Lead, Pharmacist Lead, and the NICU Medical Director. The project participants include L&D Charge nurses, NICU Charge nurses, NNPs, NICU Pharmacists, and Neonatologists. The main problem discovered during this quality improvement project was inadequate EOL care and team member support through the perinatal palliative care process in the L&D unit for neonates born with fatal or life-limiting conditions and their families. Intervention(s) Phase One The first phase of this project was to identify and assess the current attitudes, education level, and practices regarding neonatal EOL and perinatal palliative care for infants born with fatal or life-limiting 8 conditions among NICU charge nurses, L&D Charge nurses, NNPs, NICU Pharmacists, and Neonatologists. A pre-intervention survey using a three-point Likert scale was created through an electronic encrypted survey tool and distributed via email to these providers (Appendix A). A paper copy was also distributed to some team members due to their preference and the results were uploaded into a secure database. Phase Two The second phase was to increase staff comfort and confidence with the NPC process by holding simulation (SIM) sessions organized and presented by the project lead. Infants who are born with lifelimiting or fatal conditions and require NPC are a low-frequency event at this facility. These NPC SIM sessions allowed NICU and L&D care team members to practice the current NPC process for the provision of EOL care for the patient and family through a simulated neonatal EOL and palliative care scenario. The goal of these SIM sessions was to increase neonatal team knowledge, skill, and confidence regarding the neonatal EOL process and the provision of collaborative palliative care through hands-on experience. Each SIM session was a Plan-Do-Study-Act (PDSA) cycle to assess the usability and feasibility regarding the current NPC process at this facility and to collect suggestions for improvement of the new process, with 5 cycles being completed. The five (5) PDSA cycles were completed with data evaluation by the project team lead and NPC expert (Appendix B). Phase Three Phase three was to increase staff knowledge and awareness about NPC and EOL through the evaluation of the pre-intervention survey results, then providing education to the providers via an electronic slide presentation which was distributed through the facility’s educational delivery system (Appendix C). The presentation included information about the neonatal EOL process, the importance of NPC, and introduced the finalized NPC Checklist (Appendix D). A NPC Checklist was created and placed into clear sheet protectors for each section of the L&D Unit and the NICU for provider quickreference of the improved NPC process. An NPC Patient Tracking Form was also created to keep important information about the infant and family who will require NPC (Appendix E). This form will 9 allow the multidisciplinary team to deliver a concise, accurate, and consistent report about the patient and family from shift-to-shift. Phase Four The fourth phase included reviewing the data gathered through simulation-based NPC sessions, revision of the NPC Toolkit to address needs, the provision of education about the Toolkit, and a postintervention survey. The post-intervention survey was created through an electronic encrypted survey tool and distributed via email to providers (Appendix F). This 9-question survey was left open for two weeks after the slide presentation was distributed. The unique ID that each participant provided upon beginning the pre-intervention survey facilitated the pairing of data with the post-intervention survey. The postintervention survey allowed for the evaluation of the NPC Toolkit (NPC Checklist, NPC education, NPC Patient Tracking Form) and its impact on staff comfort and confidence in the neonatal EOL process and the provision of palliative care. To increase the usability, adjustments to the collaborative NPC process and Toolkit were made based on the feedback/data from the NPC SIMs and post-intervention survey. Study of the Interventions The pre- and post-intervention surveys used in this project were created specifically for this project. Surveys were created by the project lead and an expert EOL care provider and piloted on a small group of NNPs and RNs before the surveys were administered to the NICU and L&D Unit team members. The observed outcomes include all responses gathered via the pre-intervention surveys, in-person feedback during simulation-based usage of the current NPC process, as well as responses gathered via the post-intervention survey to evaluate whether the NPC Checklist will be utilized throughout the neonatal EOL and palliative care process. No other projects or initiatives related to palliative care were active during the time of project implementation. Measures The pre-intervention survey was created to investigate concepts such as staff confidence regarding the neonatal EOL process, staff confidence regarding the provision of neonatal NPC, gaps in 10 knowledge related to the neonatal EOL and palliative care, staff desire for a palliative care Toolkit to lead them through the NPC process, as well as the perceived support for the provision of EOL care of neonates. There were twelve questions on the pre-intervention survey which include: two regarding demographics; two addressing the gap in knowledge and lack of education about the neonatal EOL and palliative care process; four to assess provider comfort and support regarding the neonatal EOL and palliative care process; three regarding NPC resources; and one gauging interest in SIM participation. The survey required each question to be answered prior to submission as a method to confirm accuracy and completeness. Survey participation was optional, and participants provided an unique ID so their preintervention survey could be paired with their post-intervention survey. Simulation-based NPC sessions which included a NICU Charge nurse, L&D Charge nurse, NNP, and Neonatologist were utilized as PDSA cycles to gather feedback from participants about the current NPC process. This feedback directed the creation of the NPC Checklist which guides team members through the NPC process to improve the patient experience at this facility. SIM session feedback was also utilized to increase the usability of the newly created NPC Checklist to implement a collaborative and improved NPC process. Participation in the simulation-based training was optional, providers could optout at any time. An electronic slide show featuring education about neonatal EOL and NPC, including introduction to the NPC Toolkit, was created, and disseminated to neonatal team members via the facility’s education system. The post-intervention survey was created to follow-up the concepts investigated by the preintervention survey. The goal of the post-intervention survey was to assess whether the creation and implementation of the NPC Toolkit was effective in increasing care team member awareness of the NPC process, increasing their confidence and skill regarding the provision of neonatal EOL and NPC at this facility. There were ten questions on the post-intervention survey which include: two regarding demographics; two addressing the gap in knowledge and lack of education about the neonatal EOL and palliative care process; three to assess provider comfort and support regarding the neonatal EOL and 11 palliative care process; and three regarding NPC resources. The survey required each question to be answered prior to submission as a method to confirm accuracy and completeness. Survey participation was optional, and participants provided an unique ID so their post-intervention survey could be paired with their pre-intervention survey. Analysis Based on the pre- and post-intervention survey responses, descriptive statistics were generated and reviewed. Most of the data collected was qualitative in nature. This data allowed for exploration of ideas and themes and assisted in explaining quantitative results regarding neonatal EOL and palliative care. A Wilcoxon-Signed Rank Test was utilized to identify factors that are associated with providers being able to follow a NPC process at this facility, provider perception about EOL education, and provider confidence in their provision of NPC. Information gathered via simulation-based sessions preintervention were analyzed and utilized in the creation of the NPC Checklist. Ethical Considerations There were no potential conflicts of interest or competing interests identified for this DNP project. This project is considered a quality-improvement project, therefore not subject to Institutional Review Board (IRB) oversite, according to the University of Utah and Intermountain Healthcare. The electronic data was kept in an encrypted database. Paper data was secured by the project lead and destroyed after data was entered into an encrypted database. Results Phase One, Pre-Intervention Survey Results An electronic survey was sent to all NICU Charge Nurses, L&D Charge Nurses, NNPs, NICU Pharmacists, and Neonatologists via email. A total of approximately 130 surveys were sent out. This 12question survey was left open for one week. Some paper surveys were distributed to providers and collected over the same period; the results were uploaded into a secure database. 40 participants (30%) completed the pre-intervention survey. A unique identification was utilized to pair the pre-intervention survey answers with the post-intervention survey answers. Only 10 participants (25%) answered the pre- 12 and post-intervention survey, so these were the results evaluated for this scholarly project. The survey responses were grouped by demographic variables, provider attitudes about and confidence in the provision of Neonatal EOL and palliative care, and a needs assessment for a Toolkit to guide care team members through the NPC and EOL process. The sample population demographic variables include the following (Table 1): 40 percent (n=4) were NICU Charge Nurses, zero percent (n=0) were L&D Charge Nurses, 30 percent (n=3) were NNPs, 20 percent (n=2) were NICU Pharmacists, and 10 percent (n=1) were Neonatologists. Most respondents were in their role for greater than six years (70%, n=7). 0 to 2 years of experience was the second largest group (30%, n=3). The pre-intervention data from the survey indicated that 60% (n=6) of participants did not know there was a NPC process to follow at this facility (Table 2). The results also showed that 50% (n=5) did not feel adequately educated regarding the provision of EOL care at this facility (Table 3). The preintervention survey results indicated that 50 percent (n=5) of participants did not feel confident in their skill addressing the behavioral and physiologic responses of the neonate during the EOL process (Table 4). Results showed that 50 percent (n=5) were non-confident in their role regarding the provision of NPC (Table 5). The pre-intervention survey also found 90% (n=9) thought that a NPC Toolkit which included a NPC Checklist, NPC education module, and the NPC Patient Tracking Form would be a benefit to their practice (Table 6). Phase Two, Simulation-Based NPC Session Results A total of five PDSA cycles were completed via simulation-based NPC sessions (Appendix B). The feedback received from participants during the simulation sessions was utilized to create the NPC Toolkit, particularly the NPC Checklist. SIM Session One The results included feedback that the NICU Charge nurse would like the infant’s diagnosis added to the NPC Tracking Form which led to the document being updated prior to the following SIM session. Participants also requested that the location of the Palliative Care Note and/or NPC Delivery Plan 13 in the mother’s electronic health record be included in the checklist. Based on this feedback, that information was included on the final NPC Checklist under the “At Admission” section. SIM Session Two The results included the NICU Charge nurse being introduced to the family by the L&D nurse as part of the collaborative NPC team. This resulted in the participant “mother” expressing that it made her feel like “NICU was part of the team who would care for her infant after delivery” which provided her with comfort and lessened her anxiety about the after-delivery care of her infant. The introduction of the NICU nurse as part of the NPC team was added to the final NPC Checklist under the “At Admission” section. SIM Session Three The session included a NICU Charge nurse request that the L&D nurse alert them shortly prior to or immediately after the infant delivers so they can be ready to provide comfort care and comfort medications when appropriate. This information was added to the NPC Checklist under “At Delivery.” SIM Session Four During the initial review of the NPC Delivery Plan, the L&D nurse would explain to the parents which comfort medications and care were available to the mother and her infant. This resulted in the participant “mother” expressing that she was “appreciative of the information” and “less stressed” about the after-delivery comfort care options that were available. SIM Session Five The NNP and Neonatologist would appreciate a copy of the NPC Patient Tracking Form after the NICU Charge nurse filled it out. As a result, this task was included in the final NPC Checklist under the “At Admission” section. This SIM session also resulted in the NICU Charge nurse suggesting that the nurse provide comfort care for the patient and family check-in at least every 30 minutes or at an interval agreed upon by the family and L&D nurse. This task was added to the finalized NPC Checklist under the “After Delivery” section because of this feedback. Participants of the NPC SIM sessions expressed gratitude at the opportunity to practice the NPC process and reported that they had an increase in 14 confidence regarding the provision of NPC after learning about the process and completing the SIM session. Phase Three, Post-Intervention Survey Results The NPC Toolkit was created and distributed, along with education about neonatal EOL and palliative care, via an electronic slide presentation sent through this facility’s education system. Also, a post-intervention survey was sent to all care team members. Ten team members answered the postintervention survey. The post-intervention data from the survey indicated that 90% (n=9) of participants are now aware that there is a NPC process to follow at this facility (Table 2). The Wilcoxon-Signed Rank Test was utilized and found that these results are statistically significant (p= 0.04). Ninety percent (n=9) of providers reported that they feel they received adequate education about NPC at this facility postimplementation of the NPC Toolkit (Table 3). This finding was statistically significant (p=0.01) per the Wilcoxon-Signed Rank Test. The results also show that 100% (n=10) of participants feel confident in their skill addressing the physiologic/behavioral responses of the neonate during EOL postimplementation of the NPC Toolkit (Table 4). Ninety percent (n=9) of participants reported that they feel more confident in their role regarding the provision of NPC (Table 5). 100% (n=10) reported that the creation and implementation of the NPC Toolkit is a benefit to their practice (Table 6). Discussion Summary A Neonatal Palliative Care Pathway for the L&D was available prior to this project. However, the project found that the existing NPC pathway was not available to providers until after the infant was born and admitted because of its location in the newborn's electronic health record. This defeated the purpose of having a NPC pathway because it was not available to lead neonatal caregivers through the EOL process due to it being inaccessible until after the infant’s birth. In addition, the investigation found that no NPC was available in the NICU. Key findings of this project reveal that educational needs are present for neonatal care providers regarding neonatal EOL and the NPC process at this facility. No L&D Charge nurses completed the post- 15 intervention survey, so it is unknown whether they also have educational needs related to neonatal EOL and the NPC process. This project revealed obvious gaps in knowledge regarding neonatal EOL care and the NPC process at this facility. By providing education through an electronic slide show presentation, SIM scenarios, and through the creation of the NPC Checklist, the confidence level of the care team members increased regarding their comfort with the neonatal EOL process and their provision of NPC. It was not a surprise that providing a NPC Toolkit to neonatal team members would increase their comfort and confidence in the neonatal EOL and NPC process. Authors Kilcullen and Ireland (2017), found that providing education about neonatal EOL/NPC, providing a procedure for palliative care, and providing adequate staff support, removed barriers to the provision of quality NPC. Additional studies have shown that providing staff with EOL education and a NPC pathway to follow results in increased staff confidence in the process and a better EOL experience for patients and families (Barbeyrac et al., 2021; Humphrey et al., 2019). These findings are in-line with the findings of this project. Neonatal palliative care SIM scenarios were performed with an NNP, L&D Charge Nurse, NICU Charge Nurse, and a Neonatologist which provided informal feedback about the strengths and weaknesses of the current NPC pathway in addition to suggestions from staff to create the NPC Checklist. Increased levels of provider confidence and the creation of a NPC Toolkit which includes a NPC Checklist should dramatically improve the EOL care that neonates and their families receive. A strength of this project was the multidisciplinary approach, involving multiple units within the hospital. This project was beneficial in increasing team member confidence and skill regarding the neonatal EOL and NPC process through the creation of the NPC Toolkit. This Toolkit educated the staff about the neonatal EOL process, provided a NPC Checklist to guide them through the process, and provided an Multidisciplinary Care NPC Patient Tracking Form which allowed for a concise and accurate report for NPC patients from shift-to-shift. Additional time and NPC patients will be necessary to determine if implementation of the NPC Provider Toolkit was beneficial in aiding staff to provide consistent, complete, and quality EOL care to neonatal patients and their families. 16 Interpretation The benefit of having a palliative care clinical guideline, or pathway, to follow have been welldocumented. It has been shown that providers have increased confidence in their knowledge regarding the provision of NPC when they have received adequate education on the subject (Humphrey et al., 2019). The survey results indicate increased confidence in the participants’ provision of neonatal EOL and NPC after implementation of the NPC Toolkit and educational slide show. According to authors Barbeyrac et al. (2021), clinicians have increased confidence in their skill regarding the provision of NPC when they have a pathway to follow. This project’s survey results showed increased provider confidence in their ability to provide neonatal EOL care and NPC after implementation of the NPC Toolkit, which included the NPC Checklist. Additionally, more consistent, and higher quality palliative care is provided to patients when there is a pathway for clinicians to follow regarding the PC process (Humphrey et al., 2019). Although many articles show that having a PC pathway in place and providing education about the EOL process to caregivers is essential, this facility did not provide education or have a NPC pathway that was accessible to the NICU and L&D staff. This led to feelings of inadequacy by staff regarding the EOL process and the provision of NPC. Based on survey results, the providers at this facility have increased confidence in their provision of neonatal EOL and palliative care after the implementation of the NPC Toolkit. Improving the NPC process resulted in increased confidence by neonatal care providers regarding the provision of neonatal EOL and NPC which should ultimately lead to an improved EOL experience for patients and their families. The financial costs associated with this project were minimal and were mainly related to the printing of the NPC Checklist. The SIM sessions occurred on a volunteer basis, so no wages were utilized to complete them. Time costs were extensive, 125 hours by the project lead, for simulation development, survey management, education development, document creation, and data analysis; however, the time costs were deemed reasonable because they resulted in increased provider confidence and skill regarding neonatal EOL and NPC. 17 Limitations Limitations to this project include the fact that neonates delivering with fatal or life-limiting conditions is a rare event at this facility. This led to no opportunity to use the NPC for actual patients. NPC SIM sessions were required to gather the information to create the Toolkit, particularly the NPC Checklist. Another limitation included the time constraints for implementing the project. For example, there were interventions such as adding a staff notification to the mother’s electronic health record identifying her pregnancy as a NPC delivery that could not be implemented within the project timeframe. Participation rates for team members who answered both the pre- and post-intervention surveys were quite low, and no L&D staff answered both surveys. Conclusions Findings from this project indicate that the neonatal caregiver participants support the provision of an NPC Toolkit to guide them through the neonatal EOL and NPC process. This project confirms the need for ongoing education for staff about the NPC process, explaining the benefit of providing quality, consistent palliative care to improve the EOL experience for patients and families. The importance of providing a clear and comprehensive pathway to provide NPC will assist in assuring that staff confidence and competence in this process. This NPC Toolkit will likely ensure that NICU and L&D care team members are more confident in their assessment skills and are more comfortable offering palliative care to patients with fatal or life-limiting conditions. This project should be expanded into the NICU which does not have a palliative care program. Education, SIM training, and the NPC Toolkit should be provided to all NICU staff to improve their knowledge and skills regarding neonatal EOL and NPC. 18 Acknowledgements I would like to acknowledge the efforts of Ryann Bierer, MD, Jennifer Hamilton DNP, APRN, CPNP-PC, Kim Friddle, Ph.D., APRN, NNP-BC. As content expert, project chair, and specialty-track director, they each provided excellent guidance, advice, and mentorship. 19 References Barbeyrac, C., Roth, P., Noël, C., Anselem, O., Gaudin, A., Roumegoux, C., Azcona, B., Castel, C., Noret, M., Letamendia, E., Stirnemann, J., Ville, Y., Lapillonne, A., Viallard, M., Kermorvant‐Duchemin, E., Boize, P., Parat, S., Dugelay, F., Stern, R., . . . Ernault, P. (2021, November 8). The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study. BJOG: An International Journal of Obstetrics &Amp; Gynaecology, 129(5), 752–759. https://doi.org/10.1111/14710528.16976 Committee on Obstetric Practice. (2021, September). Perinatal Palliative Care. American College of Obstetricians and Gynecologists. Retrieved September 28, 2022, from https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2019/09/perinatalpalliative-care Humphrey, L., Schlegel, A., Seabrook, R., & McClead, R. (2019). Trigger Criteria to Increase Appropriate Palliative Care Consultation in the Neonatal Intensive Care Unit. Pediatric Quality & Safety, 4(1), e129. https://doi.org/10.1097/pq9.0000000000000129 Kilcullen, M., & Ireland, S. (2017). Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care, 16(1). https://doi.org/10.1186/s12904-017-0202-3 Marc-Aurele, K. L., & English, N. K. (2017, March). Primary palliative care in neonatal intensive care. Seminars in Perinatology, 41(2), 133–139. https://doi.org/10.1053/j.semperi.2016.11.005 March of Dimes Foundation (2017). Neonatal Death. Peristats March of Dimes. https://www.marchofdimes.org/complications/neonatal-death.aspx March of Dimes Foundation (2020). Mortality and Morbidity. Peristats March of Dimes. https://www.marchofdimes.org/peristats/data?top=6&lev=1&stop=106&reg=99&sreg=49&creg= 49035&obj=1&slev=6 20 March of Dimes Foundation (2021). 2021 March of Dimes Report Card for Utah. Peristats March of Dimes. https://www.marchofdimes.org/peristats/tools/reportcard.aspx?reg=49 McCoy, E., Rahman, A., Rendon, J., Anderson, C., Langdorf, M., Lotfipour, S., & Chakravarthy, B. (2018, December 12). Randomized Controlled Trial of Simulation vs. Standard Training for Teaching Medical Students High-quality Cardiopulmonary Resuscitation. Western Journal of Emergency Medicine, 20(1), 15–22. https://doi.org/10.5811/westjem.2018.11.39040 Rowley, O. Denise (2022). Prevention of hypothermia at delivery in infants born preterm, at 28 to 34 weeks gestation, through implementation of a clinical-workflow process [Unpublished manuscript]. College of Nursing, University of Utah. Wojciechowski, E., Pearsall, T., Murphy, P., & French, E. (2016). A Case Review: Integrating Lewin’s Theory with Lean’s System Approach for Change. OJIN: The Online Journal of Issues in Nursing, 21(2). https://doi.org/10.3912/ojin.vol21no02man04 Ziegler, T. R., & Kuebelbeck, A. (2020). Close to Home. Advances in Neonatal Care, 20(3), 196–203. https://doi.org/10.1097/anc.0000000000000732 21 Table 1 Demographics of survey participants Pre. N=10 (%) Post. N=10 (%) Professional Experience (Years) 0-2 3-5 3 (30%) 0 (0.0%) 3 (30%) 0 (0.0%) 6-10 >10 2 (20%) 5 (50%) 2 (20%) 5 (50%) Professional Role NICU Charge RN L&D Charge RN NNP/APP Neonatologist Pharmacist 4 (40%) 0 (0.0%) 3 (30%) 1 (10%) 2 (20%) 4 (40%) 0 (0.0%) 3 (30%) 1 (10%) 2 (20%) 22 Table 2 There is a NPC Process at IMED for NICU and L&D. Agree Neutral Disagree Pre. N=10 (%) Post. N=10 (%) 1 (10%) 3 (30%) 6 (60%) 8 (80%) 1 (10%) 1 (10%) Result 1 - Z-value. The value of z is-2.0386. The p-value is .04136. The result is significant at p < .05. Result 2 - W-value. The value of W is 7.5. The critical value for W at N = 10 (p < .05) is 8. The result is significant at p < .05. 23 Table 3 Pre. N=10 (%) Post. N=10 (%) Agree 1 (10%) 9 (90%) Neutral 4 (40%) 1 (10%) Disagree 5 (50%) 0 (0.0%) I received adequate education regarding the NPC process at IMED Result 1 - Z-value. The value of z is-2.4973. The p-value is .01242. The result is significant at p < .05. Result 2 - W-value. The value of W is 3. The critical value for W at N = 10 (p < .05) is 8. The result is significant at p < .05. 24 Table 4 I am confident in my skills in addressing the physiologic/behavioral responses of the neonate during the EOL process. Strongly Agree Agree Neutral Disagree Strongly Disagree Pre. n=10 (%) Post. n=10 (%) 0 (0.0%) 2 (20%) 4 (40%) 5 (50%) 0 (0.0%) 8 (80%) 2 (20%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 25 Table 5 I am confident in my skills regarding the provision of NPC in L&D at IMED. Strongly Agree Agree Neutral Disagree Strongly Disagree Pre. n=10 (%) Post. n=10 (%) 0 (0.0%) 10 (100%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 9 (90%) 0 (0.0%) 1 (10%) 0 (0.0%) 0 (0.0%) 26 Table 6 It is beneficial for me to have a checklist that IDs the process for collaborative NPC at IMED, including how to access the NPC consult note/delivery plan. Strongly Agree Agree Neutral Disagree Strongly Disagree Pre. n=10 (%) Post. n=10 (%) 0 (0.0%) 9 (90%) 1 (10%) 0 (0.0%) 0 (0.0%) 9 (90%) 1 (10%) 0 (0.0%) 0 (0.0%) 0 (0.0%) 27 Figure 1 28 Appendix A 29 30 31 Appendix B PDSA Cycle Summary for NPC SIM Sessions Test Cycle 1 Test Description Test Population Location of Test Duration Executed By Test Results Action (Adapt, Adopt, Abandon) Test Description Test Population Location of Test Duration Executed By Test Results Action (Adapt, Adopt, Abandon) Renal Agenesis, 28-week, Induction L&D RN, NICU RN, Neo, NNP, “Mother” IMED L&D Delivery Room 1 Hour C Warren, SNP 1-Staff can’t access current NPC pathway in EMR (in infant chart, accessible post-delivery). 2- + Pop-up notification in Mother’s EMR that this will be a NPC delivery (alert RN to look up NPC delivery plan from Rainbow Kids) 3- + infant diagnosis to NPC Tracking Form for NICU Providers 4- + where to find the NPC Note/Delivery Plan in Mother’s EMR 1-Adapt: Incorporate current pathway into NPC Provider Checklist 2-Adapt: Work on making this happen (won’t be prior to end of project. 3- Adopt: + infant diagnosis to NPC Tracking form for NICU Providers 4- Adopt: + location of NPC Note/Delivery Plan in Mother’s EMR to NPC Provider Checklist under “At Admission” section. Test Cycle 2 Anencephaly, 30-week, Induction L&D RN, NICU RN, Neo, NNP, “Mother” IMED L&D Delivery Room 1 Hour C. Warren, SNP 1- Have L&D RN introduce the NICU RN and review post-delivery comfort care plan with family. 1-Adopt: + L&D RN introduction of NICU RN to the NPC Provider Checklist under “At Admission” section. 32 Test Description Test Population Location of Test Duration Executed By Test Results Action (Adapt, Adopt, Abandon) Test Description Test Population Location of Test Duration Executed By Test Results Action (Adapt, Adopt, Abandon) Test Description Test Population Location of Test Duration Executed By Test Results Action (Adapt, Adopt, Abandon) Test Cycle 3 Hypoplastic L Heart, 27-weeks, Pre-term Labor L&D RN, NICU RN, Neo, NNP, “Mother” IMED L&D Delivery Room 1 Hour C. Warren, SNP 1-NICU requests that L&D call when infant about to deliver or is newly delivered so they can be available for comfort care/meds. 1-Adopt: + L&D RN call NICU RN shortly prior to or after infant delivery to “At Delivery” section of NPC Provider Checklist Test Cycle 4 Prune Belly Syndrome, 32-weeks, Pre-term Labor L&D RN, NICU RN, Neo, NNP, “Mother” IMED L&D Delivery Room 1 Hour C. Warren, SNP 1-Suggestion to have Pharmacist participate in SIM if possible. 2-Suggestion for L&D RN to explain comfort medications and care to family during admission process, possibly when introducing NICU RN as part of NPC team or during the review of the NPC Delivery Plan. 1-Pharmacist unable to attend SIM d/t workload 2-Adopt: “Mother” felt “less stressed” and “appreciative” of information about comfort care/meds. Have L&D RN explain these options with the review of the NPC Delivery Plan. Test Cycle 5 Trisomy 18m 28-weeks, Induction L&D RN, NICU RN, Neo, NNP, “Mother” IMED L&D Delivery Room 1 Hour C. Warren, SNP 1-NNP requested a copy of the NICU Tracking Form for NICU Providers be given to the NNP Lead & Neo after the NICU Charge RN completes the form. 2-NICU RN requests interval for checking on infant/family while providing comfort care/medications 1-Adopt: NICU Charge RN to copy NICU Provider Tracking Form for the NNP Lead & Neo after it is filled out. + to “At Admission” section of NPC Checklist. 2-Adopt: After discussion with NPC expert (& Neo), decided NICU RN checking on infant/family every 30-minutes (more or less depending on family wishes) for comfort care/meds. + to “After Delivery” section of Checklist 33 Appendix C Educational Slide Presentation 34 35 36 37 38 39 40 41 Appendix D Neonatal Palliative Care Provider Checklist At Admission   L&D Nurse will: o Locate Palliative Care Note/Delivery Plan in Mother’s I-Centra chart (In I-Centra: Menu, Documents, then find Palliative Care Consult) o Review the delivery plan with parents to confirm or clarify details.  If not available, create a birth plan with parents. **Please utilize the Hospital Interpretation Service or the Interpretation I-Pad for families whose native language is not English** o Photocopy and share PC Consult/Delivery Plan with all teams (OB/MFM, NICU, Mother/Baby Nurse, WBN staff, Pediatrician, Social Work). o Invite and introduce the NICU Charge Nurse (NNP, Neonatologist if available) as part of the PC team that will provide comfort care and medication for the infant after delivery. o Have parents contact the photographer if one has been identified and is available. Contact the spiritual support person, or others as requested by parents. NICU Charge Nurse will: o Fill out the Palliative Care Tracking Form for NICU Providers (found in NICU Charge Nurse drawer) and provide copies to NNP Lead and Neonatologist. o Review plan for comfort medications with NICU Pharmacist  COMFORT MEDICATIONS  Morphine: 0.15 mg/kg/dose sublingual or 0.1 mg/kg/dose IV every 15-30 minutes as needed for pain or respiratory distress.  Ativan: 0.05 mg/kg/dose sublingual or IV every 15-30 minutes as needed for agitation or seizure activity.  Versed: 0.1 mg/kg/dose intranasally every 15 minutes as needed for agitation or seizure activity. At Delivery  L&D Nurse will: o Determine who will be present for delivery: family/support persons identified by parents, NICU Nurse for comfort care/medications, Respiratory Therapist for suctioning/blow-by O2. Please LIMIT staff to only those with essential roles. o Per parent request: place infant directly skin-to-skin, or dry, swaddle, and place hat. o Inform NICU Charge Support Nurse of delivery if comfort medications/care is expected. o When imminent death is expected, anticipate gasping/agonal breathing. Educate parents about gasping/agonal breathing prior to infant’s delivery. Have sublingual dosing of Morphine available for infant. 42   o Memory Making: Do parents want pictures, handprints and footprints, lock of hair, infant’s hospital band? o Consider having a post-death debriefing for all involved and interested staff. NICU Pharmacist will: o Ensure that comfort medication is available to the L&D and/or the NICU Nurse (Comfort medications are located in main L&D Accudose, near the Charge Nurse desk) NICU Nurse will: o Provide sublingual dosing of Morphine when imminent death is expected. After Delivery    The L&D Nurse will: o When infant has a stable heart rate and is breathing, discuss goals with parents. Inform NICU Support Nurse of delivery if not done previously. o If imminent death expected, assure that doses of Morphine and Ativan (Lorazepam), and Versed (Midazolam) are readily available with the infant whether in L&D, Mother-Baby Unit, or Nursery. o Transfer Mother with infant to post-partum at the appropriate time where palliative care will be continued. The NICU Nurse will: o Inform the NNP Lead, the Neonatologist, and the NICU Pharmacist of the infant’s birth. o Check in with family and monitor vital signs for infant every 30 minutes or at an interval agreed upon by the family, L&D staff. o Provide comfort care and medications for infant as needed. The NNP will: o Admit the infant using the Newly Delivered-Palliative Care-Limited Power Plan (in I-Centra: Menu, Quick Orders, Admission/Transition/Discharge, Newly DeliveredPalliative Care-Limited (NICU, Neonate, Newborn)). o *Not initiate standing Well Newborn Admission orders as this has interventions the family may not want to pursue, instead these interventions should be individually ordered (e.g., Vitamin K, Hepatitis B Vaccine, routine lab work, etc.). If baby survives to discharge home:  The Pediatrician/Well-Newborn Team will: o If home NG feeds are requested by parents, order equipment, arrange teaching. If infant will not discharge home with NG feedings, reassure parents and offer oral care for infant. o If home Oxygen is requested by parents, order equipment, arrange teaching. If the infant will not discharge home with Oxygen, prepare parents for the normal dying process of the infant. 43 Resources      Case Management: Makes referrals to home hospice based on insurance, coordinates home equipment with hospice. Pediatrician: Writes orders for discharge, medication doses (see above), home equipment as needed, POLST form. Pharmacist: If infant is expected to need comfort medication, please order, and fill for several doses each of Morphine and Ativan to be available until hospice pharmacy can provide further medications. Social Work: Provides emotional support and education on grief, loss, and perinatal mood/anxiety disorders. Provides family with available resources in community, including support groups. Hospice: Meets infant and family at their home, orders medications, orders equipment/supplies, are available for questions. Further Resources    Rainbow Kids Palliative Care (M-F 9AM-5PM) Intermountain Hospice CNS Hospice [phone] [phone] [phone]  EAP (Employee Assistance Program) available to Intermountain Health Employees free of charge: [phone] or [phone]  https://Intermountainhealth.sharepoint.com/sites/EmployeeAssistance Program 44 Appendix E NPC Tracking Form 45 Appendix F Post-intervention Survey 46