The Effect of Neonatal Intensive Care Nurses' Attitudes Towards Palliative Care on Death Anxiety and Burnout: An Analytic Cross-Sectional Study.

This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a children's hospital with Turkey's largest NICU bed capacity. The mean Neonatal Palliative Care Attitude Scale total score was 3.04 ± 0.78, and the mean scores of the organization, resources, and clinician subscales were 3.16 ± 0.86, 2.87 ± 0.80, and 3.10 ± 0.97, respectively. The participants' mean Death Anxiety Scale score was 57.65 ± 21.46, and the mean Burnout Inventory score was 39.21 ± 17.61. The organization subscale explained 17% of the variance in death anxiety, and the organization and resources subscales explained 31% of the variance in burnout. Neonatal intensive care nurses' palliative care attitudes are moderate; they face obstacles in providing and improving their attitudes in this field. The high level of obstacles increases nurses' death anxiety and burnout.

Implementing palliative care, based on family-centered care, in a highly complex neonatal unit

Abstract Objective: To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods: A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results: There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions: The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.

Perinatal palliative care: focus on comfort.

Providing comfort while a patient is living with a life-limiting condition or at end of life is the hallmark of palliative care regardless of the patient's age. In perinatal palliative care, the patient is unable to speak for themselves. In this manuscript we will present guidelines garnered from the 15-year experience of the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families along the perinatal journey. We will describe essential tools and strategies necessary to consider in assessing and providing comfort to infants facing a life-limiting diagnosis in utero, born at the cusp of viability or critically ill where the burden of care may outweigh the benefit.

Development of the Simplified Chinese version of neonatal palliative care attitude scale.

Background: The provision of palliative care for neonates who are not expected to survive has been slow in mainland China, and this model of care remains in its early stages. Evaluating nurses' attitudes toward neonatal palliative care (NPC) has the potential to provide valuable insight into barriers impeding NPC implementation. This study aimed to translate and adapt the traditional Chinese version of the Neonatal Palliative Care Attitude Scale (NiPCAS) into Simplified Chinese to assess its psychometric properties. Methods: The NiPCAS is a valid and reliable instrument to measure nurses' attitudes for evidence-based practice. To date, the scale has not been used largely in mainland China. With translation and cultural adaptation, the traditional Chinese version of the NiPCAS was developed into a Simplified Chinese version. Its reliability was tested using internal consistency and test-retest reliability, and its validity was measured using the content validity index and exploratory factor analysis. Results: A total of 595 neonatal nurses from mainland China were recruited. Twenty-six items in the scale were translated into Simplified Chinese. The scale demonstrated excellent reliability with a Cronbach's α coefficient of 0.87 and a test-retest reliability of 0.88. To support the Simplified Chinese version of NiPCAS, the scale content validity score was 0.98, and the exploratory factor analysis revealed five factors representing the conceptual dimensions of the scale. Conclusion: This study demonstrated the psychometric properties of the Simplified Chinese version of NiPCAS, validated its use as a viable tool for measuring neonatal nurses' attitudes toward NPC, and identified facilitators and barriers to NPC adoption. Our findings suggested supported clinical application in the context of mainland China. A confirmatory factor-analysis approach with a different sample of neonatal nurses is required for further testing of the instrument in the future.

Facilitators and Barriers Affecting Implementation of Neonatal Palliative Care by Nurses in Mainland China.

Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainland China. A simplified Chinese version of the Neonatal Palliative Care Attitude Scale was piloted, administered, and analyzed using survey methods. Nurses in neonatal intensive care units in mainland China regardless of experience in the field were invited to take part in. Over a five-month period in 2019, we surveyed neonatal nurses from 40 hospitals in five provinces of China. The response rate was 92.5% (N = 550). This study identified eight facilitators and four barriers to neonatal palliative care implementation. In terms of nurses' attitudes on providing palliative care, younger and older nurses were more positive, whereas middle-aged nurses were less so. Nurses' emotional wellbeing was rarely impacted by neonatal death. They considered neonatal palliative care, particularly pain management, to be just as important as curative treatment. Parents were invited to participate in decision-making by nurses. Nurses reported having access to professional counseling and talking about their concerns with other healthcare professionals. The following barriers to neonatal palliative care were identified in this study that were not observed in the original English version scale research in 2009: a lack of clinicians, time, clinical skills, systematic education, neonatal palliative care experience, and social acceptance. Future research is required to investigate each barrier in order to improve the implementation of neonatal palliative care in mainland China.

Perinatal Palliative Care in the Neonatal Intensive Care Unit.

With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.

Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China.

OBJECTIVES: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. METHODS: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal intensive care units from 2 children's hospitals and 3 medical centers in China. MEASUREMENTS: The translated modified version of the Neonatal Palliative Care Attitude Scale was used to survey neonatal clinicians' attitudes and beliefs regarding neonatal palliative care. RESULTS: Findings highlight 4 facilitators and 5 barriers among participating clinicians. Participants gave contradictory responses regarding the relative importance of curative treatment versus palliative care in the NICU. Negatively traumatic feelings, cultural issues and moral distress may impact this contradictory response and discourage clinicians from providing neonatal palliative care. Additionally, neonatologists and nurses held differing attitudes on several topics (p < 0.05). CONCLUSION: Further research should address strategies to improve knowledge and attitudes and relieve moral distress in NICU clinicians. Neonatal clinicians providing neonatal palliative care should receive regular palliative care training addressing culture-specific issues and communication skills. PRACTICE IMPLICATIONS: Study findings will be beneficial to inform clinical education and practice. Regular interdisciplinary team training is needed to enhance support for palliative care and decrease clinicians' moral distress during end-of-life care.

A study on the status quo and influencing factors of neonatal palliative care attitude among NICU nurses / 中国实用护理杂志

Objective:To understand the status quo of neonatal palliative care attitude of nurses in neonatal intensive care unit (NICU) and analyze the influencing factors, in order to provide reference and direction for hospital management to improve the neonatal palliative care attitude of NICU nurses.Methods:A total of 237 NICU nurses in 9 hospitals in Shijiazhuang, Hebei Province were selected by cluster sampling method from November to December 2021, and the questionnaire was conducted using General Data Survey, Neonatal Palliative Care Attitude Scale (NiPCAS), the Jefferson Scale of Empathy (JSE) and Coping with Death Scale (CDS). And analyze the results.Results:The total score of the NICU nurses′ neonatal palliative care attitude was 89.35 ± 18.86. The average score of each dimension from high to low was belief, work experience, resources, organization, and obstacle; and the total score of neonatal palliative care attitude was positively correlated with empathy ability ( r=0.653, P<0.01) and death coping ability ( r=0.597, P<0.01), in addition the factor of barrier was negatively correlated with empathy and death coping ability ( r=-0.602, -0.526, both P<0.01) Multiple linear regression analysis showed that educational background, whether nursing dying infants, frequency of attending hospice nursing education in hospitals, empathy ability and death coping ability were the influencing factors of neonatal palliative care attitude, which could explain 47.3% of the total variation. Conclusions:NICU nurses′ neonatal palliative care attitude was generally at a moderate level, and affected by five factors such as education. It is suggested that hospital management should provide to improve empathy ability and death response ability as the premise of personalized, diversified education training support, multiple ways, multi-level improve its empathy ability and death coping ability, improve neonatal palliative care attitude, and then improve the quality of nursing service.

Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training.

Objective: The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. Study Design: A cross-sectional survey mixed-method design was used to obtain data from an interdisciplinary team of professionals one year after attending a PNPC training course. A questionnaire with 32 QIs queried participants about self-reported implementation of PNPC and that of their colleagues. Descriptive and frequency data were analyzed to measure the implementation of PNPC QIs. Qualitative data were examined using content analysis. Results: Response rate was 34 of 76 (44.7%). Half of the QIs are implemented in clinical settings by course attendees more than 90% of the time, and 15 QIs are implemented between 70 and 89.9%. Colleagues within the same healthcare system applied palliative care practices less frequently than those who attended the training course. When asked if quality indicators were "always" implemented by colleagues, the average difference in scores was 36% lower. Qualitative analyses resulted in three themes that addressed changes in clinical practice, and four themes that summarized barriers in practice. Conclusion: There is high frequency of implementation of QIs by professionals who attended an evidence based PNPC training course. PNPC is implemented by the colleagues of attendees, but with less frequency. Attending evidence-based education increases clinicians' opportunities to translate quality PNPC care into clinical settings.

Limits of therapeutic intervention in a tertiary neonatal intensive care unit in patients with major congenital anomalies in Brazil.

AIM: Major congenital anomalies are an important cause of death in the neonatal intensive care unit (NICU). Therapeutic interventions and the suspension of those already in place often raise ethical dilemmas in neonatal care. METHODS: We analysed treatments-such as ventilatory support, vasoactive drugs, antibiotics, sedation/or analgesia, central venous access and other invasive procedures-offered up to 48 h before death to all newborns with major congenital anomalies over a 3-year period in a NICU in Brazil. We also gathered information contained in medical records concerning conversations with the families and decisions to limit therapeutic interventions. RESULTS: We enrolled 74 newborns who were hospitalised from 1 January 2015 to 31 December 2017. A total of 81.1% had central venous access, 74.3% were on ventilatory support, 56.8% received antibiotics and 43.2% used some sedative/analgesic drugs in their final moments. Conversations were registered in medical records in 76% of cases, and 46% of the families chose therapeutic intervention limits. Those who chose to limit therapeutic interventions asked for less exposure to vasoactive drugs (P = 0.003) and antibiotics (P = 0.003), as well as fewer invasive procedures (P = 0.046). There was no change in ventilatory support (P = 0.66), and palliative extubation was not performed for any patient. CONCLUSIONS: The therapeutic intervention was mainly characterised by maintenance of the current treatment when a terminal situation was identified with no introduction of new treatments that could increase suffering. The families' approach proved to be essential for making difficult decisions in the NICU.

"Percorso Giacomo": An Italian Innovative Service of Perinatal Palliative Care.

The perspective proposed by this article will focus on perinatal palliative care as a strategy for improving the quality of life of neonates with life-limiting conditions when extending the patient's life is no longer the goal of care. This manuscript reports the creation of an innovative program of perinatal palliative care called "Percorso Giacomo" (Giacomo's Pathway) at Sant'Orsola Hospital in Bologna, Italy in 2013. Key features include interdisciplinary collaboration between professionals from obstetrics, neonatology and other specialties aiming to reach the most detailed fetal and neonatal diagnosis and prognosis; communication and engagement with the family to discuss goals of care and prepare a birthing plan that follows the family's desires and expectations; and personalized care to achieve comfort for each newborn and support for families according to their social, cultural, and religious backgrounds.

The Neonatal Comfort Care Program: Origin and Growth Over 10 Years.

The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.

End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms.

One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).

Perceptions of Neonatal Palliative Care: Similarities and Differences between Medical and Nursing Staff in a Level IV Neonatal Intensive Care Unit.

Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort. Objective: To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives. Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%. Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions. Results: Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics. Conclusions: Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers.

Neonatal Palliative Care for Complicated Cardiac Anomalies: A 10-Year Experience of an Interdisciplinary Program at a Large Tertiary Cardiac Center.

OBJECTIVES: To report the outcomes of a Neonatal Palliative Care (NPC) Program at a large tertiary cardiac center caring for a subset of fetuses and neonates with life-limiting cardiac diagnoses or cardiac diagnoses with medical comorbidities leading to adverse prognoses. STUDY DESIGN: The Neonatal Comfort Care Program at New York-Presbyterian Morgan Stanley Children's Hospital/Columbia University Medical Center is an interdisciplinary team that offers the option of NPC to neonates prenatally diagnosed with life-limiting conditions, including single ventricle (SV) congenital heart disease (CHD) or less severe forms of CHD complicated by multiorgan dysfunction or genetic syndromes. RESULTS: From 2008 to 2017, the Neonatal Comfort Care Program cared for 75 fetuses or neonates including 29 with isolated SV CHD, 36 with CHD and multiorgan dysfunction and/or severe genetic abnormalities, and 10 neonates with a prenatal diagnosis of isolated CHD and postnatal diagnoses of severe conditions who were initially in intensive care before transitioning to NPC because of a poor prognosis. CONCLUSIONS: At New York-Presbyterian Morgan Stanley Children's Hospital/Columbia University Medical Center, a large tertiary cardiac center, 13.5% of parents of fetuses or neonates with isolated SV CHD opted for NPC. Twenty-six of 29 newborns with SV CHD treated with NPC died. Of the remaining, 2 neonates with mixing lesions are alive at 3 and 5 years of age, and 1 neonate was initially treated with NPC and then pursued surgical palliation. These results suggest that NPC is a reasonable choice for neonates with SV CHD.

Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care.

BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This study evaluated the factors associated with the confidence and comfort levels of neonatal clinicians providing neonatal palliative care. METHODS: A cross-sectional survey and questionnaire were used to investigate the confidence and comfort levels of neonatal clinicians regarding neonatal palliative care. RESULTS: Research subjects included 154 neonatal clinicians. Clinicians' confidence in providing neonatal palliative care was significantly impacted by age, marital status, years of professional experience (p < 0.05), and prior palliative care training. Comfort levels were significantly impacted by educational degree, marital status, and years of working experience. Clinicians with a supportive workplace reported increases in both professional confidence (r = 0.286, p < 0.001) and personal comfort (r = 0.521, p < 0.001). CONCLUSION: Research reveals the importance of neonatal palliative education and suggests further development of interdisciplinary neonatal palliative care teams to improve clinicians' professional confidence and personal comfort.

Neonatal pain management.

Pain management in the neonatal ICU remains challenging for many clinicians and in many complex care circumstances. The authors review general pain management principles and address the use of pain scales, non-pharmacologic management, and various agents that may be useful in general neonatal practice, procedurally, or at the end of life. Chronic pain and neonatal abstinence are also noted.