Newborn Care Curriculum: Palliative Care for the Newborn
procedures; adult; curriculum; education; feedback system; female; human; Infant Newborn; male; medical student; neonatal intensive care unit; neonatology; newborn; organization and management; palliative therapy; teaching
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more education on this topic. Thus, this learning module was designed to provide a concise, easy-to-use introduction to palliative care for the newborn. <br/>Method(s): This module was developed as part of the computer-based Newborn Care Curriculum to fill a gap in educational resources on perinatal palliative care. The primary tool in this learning module is a PowerPoint slide show with a script in the notes section. Using the presenter mode to view the PowerPoint slide show allows the learner to simultaneously view the slides and read the script for instruction. This module was tested by members of the pediatric hospitalist division at Children's National Health System in Washington, DC. Participants completed a pretest, posttest, and module evaluation. While tested as a self-study tool, the module may also be used in a small-group teaching setting. <br/>Result(s): The module was well received during the trial. The average posttest score was 96%, compared to pretest scores of 90%. Learners' comments were overwhelmingly positive, and constructive feedback has been addressed. <br/>Discussion(s): This module provides pediatric hospitalists and others who care for newborns with a well-received introduction to perinatal palliative care. The computer-based format of the module adds to its uniqueness and utility.
Anspacher M; Burd A; Stroh J; Conroy R
MedEdPORTAL
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.15766/mep_2374-8265.10639" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10639</a>
Butterflies and Ribbons: Supporting Families Experiencing Perinatal Loss in Multiple Gestation
palliative care; communication; neonatology; prematurity; nursing; Pregnancy; parental perspectives; medical education; twins; perinatal loss; Butterflies; multiple pregnancy; triplets
Introduction: In neonatology, multiple pregnancies are common. Unfortunately, it is not rare for one baby to die. Communication with parents in these circumstances has been demonstrated to be sub-optimal. Methods: Two educational programs were evaluated with pre- and post-course surveys, questionnaires administered to participants, and audits. Results: In the online Butterfly project (UK; n = 734 participants), all participants reported that the training exceeded or met their expectations, 97% reported they learned new skills, and 48% had already applied them. Participants expressed gratitude in their open-ended answers: "I feel a lot more confident in supporting parents in this situation". In the Ribbon project (workshop for neonatal clinicians, Quebec; n = 242), 97% were satisfied with the training and reported feeling more comfortable caring for bereaved parents. Knowledge improved pre-post training. Audits revealed that 100% of cases were identified on the incubator and the baby's/babies' admission card, all changed rooms after the death of their co-twin/triplet, and all had the name of their co-twin/triplet on the discharge summary. All clinicians (55) knew what the ribbon symbol meant when asked during surprise audits at the bedside. Conclusion: Different educational strategies to optimize communication with families after the perinatal loss of a co-twin are appreciated and have a positive impact.
Boutillier B; Embleton ND; Belanger S; Bigras-Mercier A; Larone Juneau A; Barrington KJ; Janvier A
Children (Basel)
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10081407" target="_blank" rel="noreferrer noopener">10.3390/children10081407</a>
The Pediatric Serious Illness Conversation Program: Understanding challenges and experiences for clinicians after advance care planning training
child; article; human; neonatology; palliative therapy; advance care planning; awareness; physician; medical education; comfort; social worker; skill; tertiary care center; conversation; thematic analysis; nurse; hospice care; Advance Care Planning
OBJECTIVES: To explore experiences of pediatric clinicians participating in a serious illness communication program (SICP) for advance care planning (ACP), examining how the SICP supports clinicians to improve their communication and the challenges of implementing new communication tools into clinical practice. <br/>METHOD(S): A qualitative description study using individual interviews with a diverse group of pediatric clinicians who participated in 2.5-hour SICP training workshops at pediatric tertiary hospitals. Discussions were transcribed, coded, and arranged into overarching themes. Thematic analysis was conducted using interpretive description methodology. <br/>RESULT(S): Fourteen clinicians from 2 Canadian pediatric tertiary hospital settings were interviewed, including nurses (36%), physicians (36%), and social workers (29%), from the fields of neonatology (36%), palliative care (29%), oncology (21%), and other pediatric specialties (14%). Key themes included specific benefits of SICP, with subthemes of connecting with families, increased confidence in ACP discussions, providing tools to improve communication, and enhanced self-awareness and self-reflection. A second theme of perceived challenges emerged, which included subthemes of not having the conversation guide readily accessible, divergent team communication practices, and particular features of the clinical environment which limited the possibility of engaging in ACP discussions with parents. SIGNIFICANCE OF RESULTS: A structured program to enhance serious illness communication supports clinicians to develop skills and tools to increase their confidence and comfort in conducting conversations about end-of-life issues. Addressing challenges of adopting the newly learned communication practices, by providing access to digital SICP tools and conducting SICP training for clinical teams may further support clinicians to engage in ACP.
Doherty M; Gujral P; Frenette M; Lusney N; van Breemen C
Palliative and Supportive Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951523000500" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000500</a>
Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020
England; neonatology; palliative therapy; Wales; article; England; female; human; infant; Infant Newborn; long term survival; major clinical study; male; morbidity; newborn; newborn care; Palliative Care; perinatal care; Wales
Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were mapped to categories within the British Association of Perinatal Medicine’s (BAPM) framework on palliative care. We extracted data from the National Neonatal Research Database on all babies born and admitted to neonatal units in England and Wales 2015–2020. Outcomes The number and proportion of babies meeting BAPM categories, their discharge outcomes and the characteristics of babies who died during neonatal care but did not fulfil any BAPM category. Results 12 123/574 954 (2.1%) babies met one or more BAPM category: 6239/12 123 (51%) conformed to BAPM category 4 (postnatal conditions with high risk of severe impairment), 3796 (31%) to category 2 (antenatal/postnatal diagnosis with high risk of significant morbidity or death), 1399 (12%) to category 3 (born at margin of viability) and 288 (2%) to category 1 (antenatal/postnatal diagnosis not compatible with long-term survival); 401 babies (3%) met criteria for multiple categories. 6814/12 123 (56%) were discharged home, 2385 (20%) were discharged to other settings and 2914 (24%) died before neonatal discharge. 3000/5914 (51%) babies who died during neonatal care did not conform to any BAPM category. Of these, 2630/3000 (88%) were born preterm. Conclusions At least 2% of babies admitted to neonatal units had palliative care needs according to existing BAPM categories; most survived to discharge. Of deaths, 51% were not captured by the BAPM categories; most were extremely preterm.
Harnden F; Lanoue J; Modi N; Uthaya SN; Battersby C
Archives of Disease in Childhood
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2022-325157" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-325157</a>
New insights in pediatrics in 2021: choices in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, haematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine
Communicable Diseases; Critical Care; Endocrinology; Genetics; Hematology; Immunology; Internal Medicine; Medical Allergy; Neonatology; Neurology; Nutrition; Palliative Care; Pediatrics Specialties; Respiratory Tract Diseases; Telemedicine
In this review, we report the developments across pediatric subspecialties that have been published in the Italian Journal of Pediatrics in 2021. We highlight advances in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, hematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine.
Caffarelli C; Santamaria F; Piro E; Basilicata S; Delle Cave V; Cipullo M; Bernasconi S; Corsello G
Italian Journal of Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s13052-022-01374-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-022-01374-8</a>
Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?
Conversations; Doctors; End-of-life; Neonatology; Parents; Shared Decision Making
INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines about end-of-life (EOL) MDM for neonates unify in their recommendation for shared decision-making (SDM) between doctors and parents. Yet, we do not know to what extent SDM is realized in neonatal practice. OBJECTIVE: We aim at examining to which extent SDM is implemented in the NICU setting. METHODS: By means of Qualitative Content Analysis, audio-recorded conversations between neonatologists and parents were analyzed. We used a framework by de Vos that was used to analyze similar conversations on the PICU. RESULTS: In total we analyzed 17 conversations with 23 parents of 12 NICU patients. SDM was adopted only to a small extent in neonatal EOL-MDM conversations. The extent of sharing decreased considerably over the stages of SDM. The neonatologists suggested finding a decision together with parents, while at the same time seeking parents' agreement for the intended decision to forgo life-sustaining treatment. CONCLUSIONS: Since SDM was only realized to a small extent in the NICU under study, we propose evaluating how parents in this unit experience the EOL-MDM process and whether they feel their involvement in the process acceptable and beneficial. If parents evaluate their involvement in the current approach beneficial, the need for implementation of SDM to the full extent, as suggested in the guidelines, may need to be critically re-assessed.
Schouten ES; Beyer MF; Flemmer AW; de Vos MA; Kuehlmeyer K
Frontiers in Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2022.897014" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.897014</a>
Moral equivalence theory in neonatology
Humans; Decision Making; Infant, Newborn; Withholding Treatment; Morals; Neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rationale behind ET, and provide an analysis of how ET relates to literature that describes neonatal mode of death and healthcare professional and parent attitudes towards end-of-life care. While ET may serve as an ethical tool to optimize resource allocation in theory, its clinical utility is limited given the complexity of end-of-life care decisions.
Lin M; Vitcov GG; Cummings CL
Seminars in Perinatology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.semperi.2021.151525" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151525</a>
Barriers and facilitators for parents in end-of-life decision-making for neonates at the Neonatal Intensive Care Unit: A qualitative study
decision making; emotional regulation; intensive care units; neonatal; Neonatology; parents; qualitative research
BACKGROUND: Mortality and end-of-life decision-making can occur in newborns, especially within the Neonatal Intensive Care Unit. For parents, participating in end-of-life decision-making is taxing. Knowledge is lacking on what support is helpful to parents during decision-making. AIM: To identify barriers and facilitators experienced by parents in making an end-of-life decision for their infant. DESIGN: Qualitative study using face-to-face semi-structured interviews. SETTING/PARTICIPANTS: We interviewed 23 parents with a child that died after an end-of-life decision at a Neonatal Intensive Care Unit between April and September 2018. RESULTS: Parents stated barriers and facilitators within 4 themes: 1. Clinical knowledge and prognosis; 2. Quality of information provision; 3. Emotion regulation; and 4. Psychosocial environment. Facilitators include knowing whether the prognosis includes long-term negative quality of life, knowing all treatment options, receiving information according to health literacy level, being able to process intense emotions, having experienced counseling and practical help. Barriers include a lack of general medical knowledge, being unprepared for a poor prognosis, having an uninformed psychologist. CONCLUSIONS: We found that clinical information and psychosocial support aid parents in decision-making. Information is best tailored to health literacy. Psychosocial support can be provided by experienced, informed counselors, social services and sibling support, distinguishing between verbal and non-verbal coping preferences, and calm, familiar architecture. Intense emotions may hinder absorption of clinical information, therefore interventions to aid emotion regulation and reduce cognitive load may be looked at in further research. Adjustment of the Situations, Opinions and Options, Parents, Information, Emotions framework based on our results can be evaluated.
Piette V; Dombrecht L; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Laroche S; Cornette L; Bekaert E; Decoster P; Beernaert K; Cohen J
Palliative Medicine
2022
<a href="http://doi.org/10.1177/02692163221076365" target="_blank" rel="noreferrer noopener">10.1177/02692163221076365</a>
Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing
Digital health; IPDAS; Neonatology; Obstetrics; Patient decision aid; Prematurity; Shared decision making
BACKGROUND: In case of extreme premature delivery at 24 weeks of gestation, both early intensive care and palliative comfort care for the neonate are considered treatment options. Prenatal counseling, preferably using shared decision making, is needed to agree on the treatment option in case labor progresses. This article described the development of a digital decision aid (DA) to support pregnant women, partners and clinicians in prenatal counseling for imminent extreme premature labor. METHOD(S): This DA is developed following the International Patient Decision Aid Standards. The Dutch treatment guideline and the Dutch recommendations for prenatal counseling in extreme prematurity were used as basis. Development of the first prototype was done by expert clinicians and patients, further improvements were done after alpha testing with involved clinicians, patients and other experts (n=12), and beta testing with non-involved clinicians and patients (n=15). RESULT(S): The final version includes information, probabilities and figures depending on users' preferences. Furthermore, it elicits patient values and provides guidance to aid parents and professionals in making a decision for either early intensive care or palliative comfort care in threatening extreme premature delivery. CONCLUSION(S): A decision aid was developed to support prenatal counseling regarding the decision on early intensive care versus palliative comfort care in case of extreme premature delivery at 24 weeks gestation. It was well accepted by parents and healthcare professionals. Our multimedia, digital DA is openly available online to support prenatal counseling and personalized, shared decision-making in imminent extreme premature labor. Copyright © 2022. The Author(s).
van den Heuvel JFM; Hogeveen M; Lutke Holzik M; van Heijst AFJ; Bekker MN; Geurtzen R
BMC medical informatics and decision making
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12911-021-01735-z" target="_blank" rel="noreferrer noopener">10.1186/s12911-021-01735-z</a>
An ethical rationale for perinatal palliative care
end-of-life; Neonatology; Palliative Care; Ethics; Perinatal
Perinatal palliative care has grown out of both an historical necessity in attending to babies in the NICU that face difficult odds of survival, the increasing technology that may avail life-extending, yet technology-dependent, care, and the growth of fetal diagnostic and treatment centers. This review looks ta the history and ethical rationale for making available services from Pediatric and Perinatal Palliative Care to families in the prenatal and postnatal periods caring for a loved one with life-limiting circumstances.
Carter BS
Seminars in Perinatology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.semperi.2021.151526" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151526</a>
Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
ethics; neonatology; perinatal; preterm; resuscitation
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Archives of disease in childhood
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</a>
Potential Heart, Liver, and Kidney Donation after Circulatory Determination of Death in a Neonatal Intensive Care Unit
Donation after circulatory determination death; Neonatal end-of-life care; Neonatal organ donation; Potential organ donor
BACKGROUND: Pediatric organ donation after circulatory determination of death (DCD) has increased in recent years; however, there are few data reporting the number of neonatal potential DCD organ donors and no Canadian-specific reports. OBJECTIVE: The main objective of this study was to estimate the number of patients who may have become actual DCD organ donors from a single, tertiary neonatal intensive care unit (NICU) over 5 years. METHODS: We reviewed all medical charts of newborns ≥2.5 kg, who died in our center's NICU from January 2013 to December 2017. We determined how many could have become actual organ donors after brain death (DBD) or DCD based on 3 sets of organ-specific eligibility criteria defined as conservative, standard, and liberal. RESULTS: Of the 39 deceased patients, none met the criteria for DBD. Twenty-nine (75%) died after the withdrawal of life-sustaining therapies. According to the conservative criteria, 1 patient would have been eligible for kidneys and liver donation. Three patients met standard criteria for kidneys and 1 for liver. Eight patients would have been eligible donors for kidneys, 7 for liver, and 2 for heart according to liberal criteria. Only 2 patients were evaluated for DCD, and no organ donation was performed. CONCLUSIONS: While uncommon, we identified potential DCD organ donors in the NICU population for kidney, heart, and liver transplants. The substantial variability in the number of potential donors depending on the selected eligibility criteria emphasizes the need for a standardized definition adapted to local capacities.
Trottier A; Maitre G; Hébert A; Weiss MJ
Neonatology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1159/000517660" target="_blank" rel="noreferrer noopener">10.1159/000517660</a>
Improving Neonatal Intensive Care Unit Providers' Perceptions of Palliative Care through a Weekly Case-Based Discussion
neonatology; quality of life; end-of-life care; interdisciplinary; provider perspectives
Objective: The primary objective was to evaluate the efficacy of a weekly palliative care-guided, case-based discussion of high-risk infants on Neonatal Intensive Care Unit (NICU) physician (MD) and Advanced Practice Provider (APP) perceptions of pediatric palliative care (PPC). Study Design: The study setting was a level IV academic NICU in a United States midwestern children's hospital. A pre/post design was used to evaluate the effects of a weekly palliative care-guided, case-based discussion of high-risk infants on neonatology providers' (MD and APP) perspectives of palliative and end-of-life care in the NICU using a previously published survey instrument. Surveys were completed at baseline and after 12 months of implementation. Data was analyzed with a Wilcoxon Signed Rank test with significance set at p < 0.05. Results: Thirty-one providers (13 APPs and 18 MDs) completed both pre- and post-intervention surveys. Post-intervention, providers were more likely to endorse that they "are comfortable with PPC", "feel comfortable teaching PPC to trainees", "feel confident handling end-of-life care", "have time to discuss PPC", and "were satisfied with the transition to end-of-life care for their most recent patient". They also were more likely to report, "families' perception of burden is relevant when making ethical decisions", that "parents are involved in decisions regarding palliative care", and that their "institution is supportive of palliative care." (p-values < 0.05 for all). Conclusion: NICU provider perceptions of palliative care can be improved through the implementation of a case-based interdisciplinary conference that emphasizes palliative care domains in the context of Neonatal ICU care.
Allen JD; Shukla R; Baker R; Slaven JE; Moody K
Palliative Medicine Reports
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/pmr.2020.0121" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0121</a>
Fifteen-minute consultation: How to approach the withdrawal of neonatal intensive care
palliative care; neonatology; psychology; genetics
Withdrawal of life-sustaining support on the neonatal unit presents a set of unique challenges specific in this age group of patients. This article aims to provide an overview of the key factors that should be considered during this process. It explores the practicalities of care delivery that reflects the psychological impact of undergoing end-of-life care on parents and team members. It will also highlight the role of clinical genetics that can be used to understand the underlying disease pathology and therefore can be a valuable tool in the difficult decision-making process.
Premadeva I; Gardham A; Faller A; Selkirk L
Archives of Disease in Childhood: Education and Practice Edition
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2021-321667" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-321667</a>
Measuring communication quality in the Neonatal Intensive Care Unit
communication; communication quality; neonatal intensive care unit; neonatology; nicu; pediatric palliative care
BACKGROUND: High quality communication between providers and parents of seriously ill neonatal patients is vital and yet poorly understood. Feudtner summarized five challenges and seven priorities to the study and advancement of pediatric palliative care. Improvement of communication is a priority, while lack of specification and measurement of outcomes relevant to the pediatric population remains a challenge. Specifically, measurement of communication quality in pediatrics, and especially neonatology, is problematic. METHODS: We conducted a focused review of this topic which we hope will serve to support further research. We reviewed the current literature in Pubmed and searched the Palliative Care Research Cooperative (PCRC) instrument library. RESULTS: We found five validated instruments which met our criteria, relied on patient or surrogate report, and were developed to measure quality of communication and/or satisfaction with communication with adult patients or their surrogates. Our Pubmed search yielded 249 unique results, only two of which met our inclusion criteria. CONCLUSION: We conclude that development and exhaustive testing of a validated, comprehensive measure of communication quality for the neonatal population is needed. Without such a measure, it will be difficult to advance the field and achieve high quality prognostic communication for the parents of seriously ill babies. IMPACT: Measurement of communication quality in pediatrics, and especially neonatology, is problematic, understudied, and yet critical to the advancement of the field. There has not been an overview of existing measures of communication quality in the NICU published, nor has there been a comprehensive discussion of this important topic. Our paper provides such an overview and initiates such a discussion. We present a narrative review of existing measures of communication quality in the NICU in order to highlight the need for further study.
Guttmann KF; Orfali K; Kelley AS
Pediatric Research
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1038/s41390-021-01522-6" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01522-6</a>
Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals
ethics; neonatology; palliative care; preterm neonate; resuscitation
BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently revised national Framework for Practice from the British Association of Perinatal Medicine. METHODS: The online survey requested participants indicate the lowest gestation at which they would be willing to offer active treatment and the highest gestation at which they would withhold active treatment of an EPI at parental request (their lower and upper thresholds). Relative risks were used to compare respondents' views based on profession and neonatal unit designation. Further questions explored respondents' conceptual understanding of viability. RESULTS: 336 respondents included 167 consultants, 127 registrars/fellows and 42 advanced neonatal nurse practitioners (ANNPs). Respondents reported a median grey zone for neonatal resuscitation between 22(+1) and 24(+0) weeks' gestation. Registrars/fellows were more likely to select a lower threshold at 22(+0) weeks compared with consultants (Relative Risk (RR)=1.37 (95% CI 1.07 to 1.74)) and ANNPs (RR=2.68 (95% CI 1.42 to 5.06)). Those working in neonatal intensive care units compared with other units were also more likely to offer active treatment at 22(+0) weeks (RR=1.86 (95% CI 1.18 to 2.94)). Most participants understood a fetus/newborn to be 'viable' if it was possible to survive, regardless of disability, with medical interventions accessible to the treating team. CONCLUSION: Compared with previous studies, we found a shift in the reported lower threshold for resuscitation in the UK, with greater acceptance of active treatment for infants <23 weeks' gestation.
Di Stefano LM; Wood K; Mactier H; Bates SE; Wilkinson D
Archives of Disease in Childhood - Fetal and Neonatal Edition
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2020-321273" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-321273</a>
Neonatal and perinatal palliative care pathway: A tertiary neonatal unit approach
palliative care; neonatology; perinatal; bereavement; care pathway
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units have specialist PC clinicians or teams, and such units will benefit from a well-planned perinatal PC pathway. In this article, we discuss a tertiary neonatal unit perinatal care pathway which provides guidance from the point of diagnosis and establishment of eligibility of a baby for PC through to care after death and bereavement support for families. Planning PC with families which encourages family-centred and individualised approach is also discussed. Copyright © 2021 BMJ Publishing Group. All rights reserved.
Akyempon AN; Aladangady N
BMJ Paediatrics Open
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjpo-2020-000820" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2020-000820</a>
Survival and causes of death in extremely preterm infants in the Netherlands
Mortality; Neonatology
OBJECTIVE: In the Netherlands, the threshold for offering active treatment for spontaneous birth was lowered from 25(+0) to 24(+0) weeks' gestation in 2010. This study aimed to evaluate the impact of guideline implementation on survival and causes and timing of death in the years following implementation. DESIGN: National cohort study, using data from the Netherlands Perinatal Registry. PATIENTS: The study population included all 3312 stillborn and live born infants with a gestational age (GA) between 24(0/7) and 26(6/7) weeks born between January 2011 and December 2017. Infants with the same GA born between January 2007 and December 2009 (N=1400) were used as the reference group. MAIN OUTCOME MEASURES: Survival to discharge, as well as cause and timing of death. RESULTS: After guideline implementation, there was a significant increase in neonatal intensive care unit (NICU) admission rate for live born infants born at 24 weeks' GA (27%-69%, p<0.001), resulting in increased survival to discharge in 24-week live born infants (13%-34%, p<0.001). Top three causes of in-hospital mortality were necrotising enterocolitis (28%), respiratory distress syndrome (19%) and intraventricular haemorrhage (17%). A significant decrease in cause of death either complicated or caused by respiratory insufficiency was seen over time (34% in 2011-2014 to 23% in 2015-2017, p=0.006). CONCLUSIONS: Implementation of the 2010 guideline resulted as expected in increased NICU admissions rate and postnatal survival of infants born at 24 weeks' GA. In the years after implementation, a shift in cause of death was seen from respiratory insufficiency towards necrotising enterocolitis and sepsis.
van Beek PE; Groenendaal F; Broeders L; Dijk PH; Dijkman KP; van den Dungen FAM; van Heijst AFJ; van Hillegersberg JL; Kornelisse RF; Onland W; Schuerman F; van Westering-Kroon E; Witlox RSGM; Andriessen P
Archives of Disease in Childhood. Fetal and Neonatal Edition
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2020-318978" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-318978</a>
Withholding or withdrawing life-sustaining treatment in extremely low gestational age neonates
ethics; neonatology; palliative care; race and health
OBJECTIVE: To identify sociodemographic and clinical factors associated with withholding or withdrawing life-sustaining treatment (WWLST) for extremely low gestational age neonates. DESIGN: Observational study of prospectively collected registry data from 19 National Institute of Child Health and Human Development Neonatal Research Network centres on neonates born at 22-28 weeks gestation who died >12hours through 120 days of age during 2011-2016. Sociodemographic and clinical factors were compared between infants who died following WWLST and without WWLST. RESULT(S): Of 1168 deaths, 67.1% occurred following WWLST. Withdrawal of assisted ventilation (97.4%) was the primary modality. WWLST rates were inversely proportional to gestational age. Life-sustaining treatment was withheld or withdrawn more often for non-Hispanic white infants than for non-Hispanic black infants (72.7% vs 60.4%; 95%CI 1.00 to 1.92) or Hispanic infants (72.7% vs 67.2%; 95%CI 1.32 to 3.72). WWLST rates varied across centres (38.6-92.6%; p<0.001). The centre with the highest rate had adjusted odds 4.89 times greater than the average (95%CI 1.18 to 20.18). The adjusted odds of WWLST were higher for infants with necrotiing enterocolitis (OR 1.77, 95%CI 1.21 to 2.59) and severe brain injury (OR 1.98, 95%CI 1.44 to 2.74). CONCLUSION(S): Among infants who died, WWLST rates varied widely across centres and were associated with gestational age, race, ethnicity, necrotiing enterocolitis, and severe brain injury. Further exploration is needed into how race, centre, and approaches to care of infants with necrotiing enterocolitis and severe brain injury influence WWLST. Copyright © Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.
Dworetz AR; Natarajan G; Langer J; Kinlaw K; James JR; Bidegain M; Das A; Poindexter B; Bell EF; Cotten CM; Kirpalani H; Shankaran S; Stoll BJ
Archives of disease in childhood. Fetal and neonatal edition.
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2020-318855" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2020-318855</a>
Possibilities and challenges of perinatal hospice-palliative care. [Hungarian]
hospice palliative care; neonatology; perinatal loss; perinatal period
Perinatal hospice care is a special form of paediatric palliative care, with a focus on prenatally diagnosed malformation, providing physical, psychological and mental support with a holistic approach for the families. Our aim was to analyse how perinatal hospice-palliative care can be implemented and what opportunities it may provide on the basis of available professional guidelines. We introduce study and analysis of the professional guidelines and protocols, mainly from Anglo-Saxon countries, and describe some examples of best practices. Perinatal hospice is a specially demanding care regarding professional and personal challenges. Standardised guidelines based on consensus can serve as starting points, describing proper care and its conditions. Moreover, they can facilitate communication and coordinative processes between the collaborating specialists. Challenging conditions and possible solutions to them can be identified during supportive formative courses. Continuous formation means competency development in palliative care as well as in adequate communication. Copyright © 2020 Akademiai Kiado Rt.. All rights reserved.
Eva Z; Katalin H
Orvosi Hetilap
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1556/650.2020.31636" target="_blank" rel="noreferrer noopener">10.1556/650.2020.31636</a>
Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents
Artificial Nutrition; End of Life; Ethics/Bioethics; Futility; Hospice; Medical Ethics; Neonatal-Perinatal Medicine; Neonatology; Palliative Care; Palliative Medicine; Pediatrics; Terminal Care
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and end-of-life domains, they continue to report the need for additional training. To address these concerns, we developed an interactive and reflective palliative care and medical ethics curriculum including sessions focusing on ethical dilemmas at the beginning and end of life. Methods: This module includes a trio of case-based, small-group discussions on artificial nutrition and hydration, futility, and ethical considerations in neonatology. Content was developed based on a needs assessment, input from local experts, and previously published material. Trainees completed assessments of comfort and understanding before and after each session. Results: The module was attended and assessed by an average of 27 trainees per session, including residents and medical students. Knowledge of ethical considerations improved after individual sessions, with 86% of trainees reporting understanding ethical considerations involved in the decision to withdraw or withhold medically provided nutrition and hydration and 67% of trainees reporting understanding the use of the term futility. Trainee comfort in providing counseling or recommendations regarding specific ethical issues demonstrated a trend toward improvement but did not reach statistical significance. Discussion: We successfully implemented this innovative module, which increased trainees' comfort with end-of-life care and ethical conflicts. Future studies should focus on the trainees' ability to implement these skills in clinical practice.
Herbst L A; deSante-Bertkau J
MedEdPORTAL
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.15766/mep_2374-8265.10895" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10895</a>
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
Adult; Age Factors; Clinical Competence; confidence and comfort; Cross-Sectional Studies; Educational Status; Female; Humans; Male; Marital Status; neonatal palliative care; neonatal professional; neonatology; Palliative Care; Self Concept; Social Support; Surveys and Questionnaires; Taiwan
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.
Peng N H; Liu H F; Wang T M; Chang Y C; Lee H Y; Liang H F
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.0102" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0102</a>
Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
communication; neonatology; parental perspectives; parents; resuscitation
BACKGROUND AND OBJECTIVES: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives. METHODS: Clinicians from different backgrounds participated in a standardized, videotaped, simulated neonatal resuscitation in the presence of parent actors. The infant remained pulseless; participants communicated with the parent actors before, during, and after discontinuing resuscitation. Twenty-one evaluators with varying expertise (including 6 bereaved parents) viewed the videos. They were asked to score clinician-parent communication and identify the top communicators. In open-ended questions, they were asked to describe 3 aspects that were well done and 3 that were not. Answers to open-ended questions were coded for easily reproducible behaviors. All the videos were then independently reviewed to evaluate whether these behaviors were present. RESULTS: Thirty-one participants' videos were examined by 21 evaluators (651 evaluations). Parents and actors agreed with clinicians 81% of the time about what constituted optimal communication. Good communicators were more likely to introduce themselves, use the infant's name, acknowledge parental presence, prepare the parents (for the resuscitation, then death), stop resuscitation without asking parents, clearly mention death, provide or enable proximity (clinician-parent, infant-parent, clinician-infant, mother-father), sit down, decrease guilt, permit silence, and have knowledge about procedures after death. Consistently, clinicians who displayed such behaviors had evaluations >9 out of 10 and were all ranked top 10 communicators. CONCLUSIONS: During a neonatal end-of-life scenario, many simple behaviors, identified by parents and providers, can optimize clinician-parent communication.
Lizotte M H; Barrington K J; Sultan S; Pennaforte T; Moussa A; Lachance C; Sureau M; Zao Y; Janvier A
Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2019-1925" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-1925</a>
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
52315-07-8 (cypermethrin); 65731-84-2 (cypermethrin); 66841-24-5 (cypermethrin); 67375-30-8 (cypermethrin); bereavement support; child; clinical article; clinician; conference abstract; confidentiality; content analysis; controlled study; cypermethrin; death; evaluation research; female; filter; follow up; human; information center; intensive care; interview; male; neonatology; nesting; palliative therapy; pediatrics; psycho-oncology; questionnaire; research ethics; writing
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe partnership communication with bereaved families.
Bourque C J; Cardinal G; Dumont E; Sultan S
Journal of Pain and Symptom Management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.286" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.286</a>
Decision-making at the limit of viability: The Austrian neonatal choice context
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Stanak M; Hawlik K
BMC Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</a>
Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?
Neonatology; Humans; Burnout Professional; Attitude of Health Personnel; Patient Participation; Morals; Stress Psychological; Decision-making; Decision Making/ethics; Clinical ethics; End-of-life issues; Patient Care/ethics; Physicians/ethics/psychology; Professional-professional relationship
When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare providers. Yet an appreciation of how particular disciplines, including physicians, come to be "constrained" in their actions is still lacking. This paper will examine how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration.
Prentice TM; Gillam L
Journal of bioethical inquiry
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s11673-018-9847-8" target="_blank" rel="noreferrer noopener">10.1007/s11673-018-9847-8</a>
Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey
end-of-life care; palliative care; pediatrics; neonatology; Sma
OBJECTIVE:: This study aims to assess the experiences and wishes of parents of children with severe spinal muscular atrophy regarding information and decision-making throughout the course of the illness. STUDY DESIGN:: A full population survey, conducted in 2015, among parents of children with severe spinal muscular atrophy who were born in Denmark between January 1, 2003, and December 31, 2013. We used a study-specific questionnaire with items about experiences and wishes concerning the provision of information about diagnosis, treatment, and end-of-life care. RESULTS:: Among the 47 parents that were identified, 34 parents of 21 children participated. Eleven of them were nonbereaved and 23 were bereaved parents. All parents stated that health care staff did not take any decisions without informing them. A proportion of parents indicated that they were not informed about what spinal muscular atrophy entails (32%), possible treatment options (18%), or the fact that their child would have a short life (26%) or that death was imminent (57%). Most of the bereaved parents who had wishes concerning how and where their child would pass away had their wishes fulfilled. CONCLUSIONS:: The study showed that health care staff did not take treatment decisions without parents being informed. However, there is room for improvement concerning information about what spinal muscular atrophy entails, treatment options, and prognosis. Possibilities of palliative care and advance care planning should be investigated for these parents, their child, and health care staff.
Beernaert K; Lovgren M; Jeppesen J; Werlauff U; Rahbek J; Sejersen T; Kreicbergs U
Journal of Child Neurology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0883073818822900" target="_blank" rel="noreferrer noopener"> 10.1177/0883073818822900</a>
Palliative care in a tertiary neonatal intensive care unit: a 10-year review
palliation; neonatal; end-of-life; palliative; neonatology; integrative
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision to redirect care, the means of symptom control and the provision of psychosocial supports. METHODS: A retrospective review of all 166 deaths of NICU-affiliated patients during a 10- year epoch. Medical notes were reviewed, and the provision and type of, or barriers to, effective palliative care was defined. RESULTS: Extreme prematurity accounted for 71/145 (49%) of deaths with relatively high proportions of Maori 17/71 (25%) and Pacific Islanders 9/71 (13%). Almost all eligible infants received some form of palliation. Transition from curative to palliative care was refused by the family in a single case. Median time from decision to redirect care until first recorded action was 80 min, and median time from action until death was 60 min. The majority of infants received some form of comfort cares, (128/166) most commonly morphine (94/128, 73%). Three infants had documented seizure activity or respiratory distress but did not receive any pharmacological intervention. Psychosocial supports were offered in 98/145 (67%) of cases, but only 71/145 (49%) of families were formally offered an opportunity to discuss the infant's clinical course after their death. CONCLUSIONS: Clinical documentation of care plans was often incomplete, potentially leading to inconsistent delivery of care, increased risk of symptom breakthrough and/or inadequate psychosocial supports for family. Formal individualised palliative care plans are under development to standardise documentation and improve therapeutic and psychosocial interventions available to the infant and their family.
Ng SKF; Keenan N; Swart S; Berry MJ
BMJ Supportive & Palliative
2018
<a href="http://doi.org/10.1136/bmjspcare-2018-001538" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001538</a>
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Infant Newborn; Humans; Parents; Intensive Care Units Neonatal; Neonatology; Family-centered care; Neonatal intensive care unit; Patient-centered research; Peer-to-peer support; Resource parents; Intensive Care Neonatal/standards; Neonatology/standards; Quality of Health Care/standards
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.
Bourque CJ; Dahan S; Mantha G; Robson K; Reichherzer M; Janvier A
Seminars in Fetal and Neonatal Medicine
2018
<a href="http://doi.org/10.1016/j.siny.2017.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2017.10.005</a>
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Superdock AK;Barfield RC;Brandon DH;Docherty SL
BMC Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</a>
Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</a>
End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium
Brussels Capital Region; prematurity; Wallonia; article; clinical practice; female; gestational age; human; infant; major clinical study; male; neonatologist; neonatology; newborn; palliative therapy; perinatal period; qualitative research; questionnaire; terminal care; uncertainty
Background: Very preterm birth (24 to < 32 week's gestation) is a major public health issue due to its prevalence, the clinical and ethical questions it raises and the associated costs. It raises two major clinical and ethical dilemma: (i) during the perinatal period, whether or not to actively manage a baby born very prematurely and (ii) during the postnatal period, whether or not to continue a curative treatment plan initiated at birth. The Wallonia-Brussels Federation in Belgium counts 11 neonatal intensive care units. Methods: An inventory of key practices was compiled on the basis of an online questionnaire that was sent to the 65 neonatologists working in these units. The questionnaire investigated care-related decisions and practices during the antenatal, perinatal and postnatal periods, as well as personal opinions on the possibility of standardising and/or legislating for end-of-life decisions and practices. The participation rate was 89% (n = 58). Results: The results show a high level of homogeneity pointing to overall agreement on the main principles governing curative practice and the gestational age that can be actively managed given the current state of knowledge. There was, however, greater diversity regarding principles governing the transition to end-of-life care, as well as opinions about the need for a common protocol or law to govern such practices. Conclusion: Our results reflect the uncertainty inherent in the complex and diverse situations that are encountered in this extreme area of clinical practice, and call for qualitative research and expert debates to further document and make recommendations for best practices regarding several "gray zones" of end-of-life care in neonatology, so that high quality palliative care may be granted to all neonates concerned with end-of-life decisions.Copyright © 2018 The Author(s).
Aujoulat I; Henrard S; Charon A; Johansson AB; Langhendries JP; Mostaert A; Vermeylen D; Verellen G; Maton P; Van Overmeire B; Kalenga M; Broux I; Henrion E; Dussart A; Muller MF; Cavatorta E; Marechal Y; Vanden ES; Lecart C; Haumont D; Van Herreweghe I; Vlieghe V; Debauche C; Flausch M; Sepulchre B
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-018-1168-x" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1168-x</a>
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Emotions; Communication; Neonatology; empathy; cardiopulmonary resuscitation; gestational age; NICU; bronchopulmonary dysplasia; CPR; end of life decisions; Extreme prematurity; extremely low-gestational-age infants; Family Centered Care; Life-sustaining interventions; necrotizing enterocolitis; Personalized medicine; Withhold and withdraw intensive care
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
2014-02
Janvier A; Barrington K; Farlow B
Seminars In Perinatology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/j.semperi.2013.07.007" target="_blank" rel="noreferrer">10.1053/j.semperi.2013.07.007</a>
Managing palliation in the neonatal unit
Neonatology; end of life; infant
2014-09
Uthaya S; Mancini A; Beardsley C; Wood D; Ranmal R; Modi N
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/archdischild-2013-305845" target="_blank" rel="noreferrer">10.1136/archdischild-2013-305845</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
End-of-life decision making in Taiwan: healthcare practice is rooted in local culture and laws that should be adjusted to patients' best interests
Female; Humans; Male; Terminal Care; decision making; Attitude of Health Personnel; Medical Staff; Attitude to Death; Resuscitation Orders; Neonatology; Nursing Staff; Hospital
The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.
2013-06
Tang Siew Tzuh
Journal Of Medical Ethics
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1136/medethics-2012-100760" target="_blank" rel="noreferrer">10.1136/medethics-2012-100760</a>
Early neurodevelopmental outcomes of extremely preterm infants
Biomedical Research; Infant; neonatology; Adhd; Brain/embryology/ physiopathology; cerebral palsy; Developmental Disabilities/etiology/ physiopathology; Diseases/ physiopathology; Extremely Premature/growth & development/physiology/psychology; Fetal Organ Maturity; Humans; infant; intellectual impairment; intraventricular hemorrhage; Nervous System Diseases/etiology/ physiopathology; neurodevelopment; neurodevelopmental outcomes; Newborn; Premature; preterm birth; Risk Factors; sensory impairment; Survival Rate/trends; Very Low Birth Weight/growth & development/physiology/psychology; white matter injury
Infants born at extreme preterm gestation are at risk for both death and disability. Although rates of survival have improved for this population, and some evidence suggests a trend toward decreased neuromotor impairment over the past decades, a significant improvement in overall early neurodevelopmental outcome has not yet been realized. This review will examine the rates and types of neurodevelopmental impairment seen after extremely preterm birth, including neurosensory, motor, cognitive, and behavioral outcomes. We focus on early outcomes in the first 18-36 months of life, as the majority of large neonatal studies examining neurodevelopmental outcomes stop at this age. However, this early age is clearly just a first glimpse into lifetime outcomes; the neurodevelopmental effects of extreme prematurity may last through school age, adolescence, and beyond. Importantly, prematurity appears to be an independent risk factor for adverse development, but this population demonstrates considerable variability in the types and severity of impairments. Understanding both the nature and prevalence of neurodevelopmental impairment among extremely preterm infants is important because it can lead to targeted interventions that in turn may lead to improved outcomes.
2016-12
Rogers EE; Hintz SR
Seminars In Perinatology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1053/j.semperi.2016.09.002" target="_blank" rel="noreferrer">10.1053/j.semperi.2016.09.002</a>
Palliative care in neonatology: French neonatologists' practice
cohort; ethics; neonatal-period; Neonatology; Palliative Care; prematurity
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their practical implementation in NICU. Methods. - This cross-sectional prospective study was performed by an online survey. Pediatricians from French level III maternity wards were selected. Data collected concerned the general characteristics of the participants as well as their personal awareness of palliative reflection. Five clinical cases explored processes of discussion and decision in palliative care, as well as their implementation. Results. - Seventy-one practitioners responded on 65 level III NICUs. Ten percent were trained in palliative medicine and 17% had this project. The palliative care team was invited in less than a third of the multidisciplinary meetings, although most responders acknowledged its usefulness in accompanying children, their families or caregivers. Parents' weight in the final decision was important for the responders but less than that of doctors. It concerned parents' vision on disability. For palliative care in the delivery room, 13% did not use any medication. Others mostly used the umbilical vein. Midwives more often took responsibility of palliative care in the delivery rooms. Conclusions. - Neonatologists expert in palliative care are still too few in level III centers. Palliative teams are not yet involved in patient's regular care. Practices in palliative care in France are still quite dependent on the center, especially regarding medications. This study underlines the importance of interventions training neonatologists in the field of palliative medicine. (c) 2017 Elsevier Masson SAS. All rights reserved.
2017-12
Martini P; Alluin R; Vieux R
Medecine Palliative
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.medpal.2017.08.008" target="_blank" rel="noreferrer">10.1016/j.medpal.2017.08.008</a>
Fragile lives with fragile rights: Justice for babies born at the limit of viability
end-of-life decision-making; gestational age policies; justice; Neonatology
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial.
2018-01
Hendriks MJ; Lantos JD
Bioethics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/bioe.12428" target="_blank" rel="noreferrer">10.1111/bioe.12428</a>
Experience with neonatal palliative care consultation at the Medical College of Wisconsin-Children's Hospital of Wisconsin
Humans; infant; Intensive Care Units; Palliative Care; Hospitals; Wisconsin; Neonatology; Neonatal; Pediatric; referral and consultation; Newborn; retrospective studies
At Children's Hospital of Wisconsin there is a pediatric palliative care consultation service that serves a diverse patient population, including infants. However, the value of a palliative care consultation for infants has not been well evaluated. We performed a retrospective, case series, descriptive chart review of infants in our neonatal intensive care unit (NICU) who received palliative care consults between January 1996 and June 1998. We specifically looked at their diagnoses, the timing of consults, reasons that consultations were ordered, what recommendations were made, and the subsequent outcomes. During the series period there were 898 admissions to the NICU, 51 neonatal deaths, and 12 neonatal palliative care consultations. The diagnostic categories for those with a palliative care referral included prematurity, lethal anomalies, and catastrophic or overwhelming illness. Reasons for the consultations were organization of home hospice, facilitation of medical options, such as do-not-resuscitate (DNR) orders and treatment withdrawal, facilitation of comfort measures, and grief/loss issues. Recommendations that the palliative care staff made fell into four categories: advance directive planning, the optimal environment for supporting neonatal death, comfort and medical care, and psychosocial support. This series is a description of what a palliative care service can offer for terminally ill infants in an NICU. We speculate that such consults can more consistently and comprehensively provide appropriate end-of-life care for these patients and their families.
2001
Leuthner SR; Pierucci R
Journal Of Palliative Medicine
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/109662101300051960" target="_blank" rel="noreferrer">10.1089/109662101300051960</a>