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.
Methods: 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.
Results: 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: 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.
BACKGROUND: The death of a child is regarded as one of the most devastating events for a family. Families are reliant on nurses to not only provide end-of-life care but also to support and care for grieving families in a way that is sensitive to their cultural and religious needs and preferences.
AIMS: The aim of this study was to explore the perceived impact and influence of cultural diversity on how neonatal and paediatric intensive care nurses care for Muslim families before and after the death of infants/children.
DESIGN: A qualitative descriptive approach was used in this study, conducted in Saudi Arabia.
METHODS: Semi-structured interviews were used to gather data from a convenience sample of registered nurses working in neonatal and paediatric intensive care, with experience in providing end-of-life care. Interviews were conducted between July and November, 2018. Interviews were audio-recorded and transcribed for analysis.
RESULTS: Thirteen registered nurses participated; all were born overseas, identified with various faiths and spoke English in the workplace. A respect for diversity and care of the family was prioritized yet impacted by communication challenges. Caring and respect was demonstrated by facilitating important cultural and religious practices important in the Muslim faith. Self-care was identified as important, transcending the culturally diverse nature of the nursing workforce.
CONCLUSIONS: Significant challenges exist for a culturally diverse nursing workforce in providing care to a Saudi Muslim population of infants/children and families, before and after a death. Their overriding commitment to respect for others, and an openness to cultural diversity and difference, aided in overcoming the inherent challenges in providing culturally sensitive end-of-life care that meets the needs of Muslim families. These findings provide valuable insights for intensive care clinicians in other countries to address challenges associated with cultural diversity.
Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex, race/ethnicity, whether the child saw their sibling in the NICU/PICU/ED, and attended the sibling's funeral.
STUDY DESIGN: Children in 71 families were recruited for this longitudinal study from 4 children's hospitals and 14 other Florida hospitals. Children rated anxiety (Spence Children's Anxiety Scale) and depression (Children's Depression Inventory); parents rated child behaviors (Child Behavior Checklist) and reported school performance (detentions, suspensions, requested parent-teacher meetings) at 2, 4, 6, and 13 months post-sibling death. Analyses included repeated measures-ANOVA, t-tests, and 1-way ANOVA.
RESULTS: In total, 132 children and 96 parents participated. More children were female (58%), black (50%), and school-age (72%). Of the children, 43% had elevated anxiety and 6% had elevated depression over 13 months post-sibling death. Child-rated anxiety was higher for girls and black vs white children. Child-rated anxiety and depression were lower if they saw their sibling in the NICU/PICU/ED before and/or after the death, and/or attended the funeral. Teens were more withdrawn than school-age children at all time points. Children who did not see their deceased sibling in the NICU/PICU/ED after death had more requests for parent-teacher conferences.
CONCLUSIONS: Children's anxiety was more common than depression, especially in girls and black children. Children who saw their siblings in the NICU/PICU/ED before/after death and/or attended funeral services had lower anxiety and depression over the first 13 months after sibling death.
OBJECTIVE: A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents' and healthcare professionals' (HCPs) experiences.
DESIGN: A retrospective qualitative study.
SETTING: Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice.
PATIENTS: Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.
MAIN OUTCOMES AND MEASURES: Parents' and HCPs' views and experiences of discussions about OTD.
RESULTS: 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents' assumptions about health of organs (when donation is not discussed).
CONCLUSIONS: The findings add new knowledge about parents' assumptions about the value of their child's organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.
PURPOSE: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations.
DESIGN AND METHODS: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death.
RESULTS: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture.
CONCLUSIONS: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers.
PRACTICE IMPLICATIONS: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.
En évoluant depuis les années 1980, la réanimation néonatale moderne a réduit de façon importante la morbi-mortalité des nouveau-nés prématurés. Cela a fait naître un ensemble de situations questionnantes en sauvant des vies au prix de séquelles parfois lourdes. Les pratiques des néonatologistes ont évolué allant de "l’arrêt de vie" à l’accompagnement du patient et de sa famille dans le cadre des soins palliatifs. Cette évolution a été ponctuée de plusieurs avis du Comité consultatif national d’éthique pour les sciences de la vie et de la santé (CCNE ; avis nos 63, 65 et 121) parlant d’abord "d’exception d’euthanasie" puis de grave transgression. Les études Épipage 1 et 2 ont influencé le CCNE en montrant par un suivi longitudinal une nette amélioration de la morbi-mortalité tous termes confondus sur les dernières décennies. Dans le même temps, les lois de 2002 et de 2005 relatives aux droits des malades et à la fin de vie étaient votées. Il persiste des situations difficiles, surtout dans les cas d’arrêt de nutrition et d’hydratation artificielles, le corps de l’enfant mourant de dénutrition semblant une vision insoutenable. Certains auteurs légitiment une "sédation terminale" systématique, concomitante de l’arrêt de la nutrition et de l’hydratation pour « limiter les souffrances ». D’autres parlent de "réparer une erreur de réanimation" pour les enfants vivants grâce à la réanimation. Ils pensent pouvoir "défaire" les choses et différencient ainsi une vie "naturelle" d’une vie "artificielle". Cela légitime la conduite d’une étude pour comprendre sur quels arguments sont prises les décisions de fin de vie en réanimation néonatale.
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.
OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years.
STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997.
RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes.
CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.
Ces dernières années, les soins palliatifs en maternité se sont beaucoup développés. Cela est dû à lâ€™évolution du cadre législatif, de la médecine et des demandes de nombreux parents, face à un diagnostic létal durant la grossesse, de poursuivre celle-ci et dâ€™accompagner leur enfant à la naissance. En parallèle, la prise en charge, en réanimation néonatale, de lâ€™extrême prématurité, sâ€™est grandement améliorée. Différentes situations peuvent être concernées par la mise en place de soins palliatifs en maternité. Cet accompagnement spécifique comprend des enjeux importants.
BACKGROUND: End-of-life (EOL) care in neonatal intensive care units (NICUs) can vary depending on religious beliefs of health care providers and families as well as the sociocultural environment. Although guidelines exist for EOL care in NICUs, most are based on Western studies, and little is known about such care in Asian countries, which have different religious and social background.
OBJECTIVE: This review synthesized empirical research to reveal the state of the science on infant EOL care in Asian countries.
DESIGN: This was an integrative review.
SETTING/SUBJECTS: Data were collected from studies identified in CINAHL, Embase, PsycINFO, and PubMed. The search was limited to current empirical studies involving infant EOL care in Asian countries and published in English between 2007 and 2016.
RESULTS: Of 286 studies initially identified, 11 empirical studies conducted in Hong Kong, India, Israel, Japan, Mongolia, Taiwan, and Turkey were included in the review. Four themes were captured: factors influencing decision making, trends in decision making, practical aspects of EOL care, and health care providers' preparation. In most NICUs, health care providers controlled decisions regarding use of life-sustaining treatment, with parents participating in decision making no more than 60% of the time. Although care decisions were gradually changing from "do everything" for patient survival to a more palliative approach, comfort care at the EOL was chosen no more than 63% of the time.
CONCLUSION: While infant EOL care practice and research vary by country, few articles address these matters in Asia. This integrative review characterizes infant EOL care in Asia and explores cultural influences on such care.
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals in Jordan, completed internationally accepted questionnaires. Most physicians (75%) were supportive of using life-sustaining interventions, irrespective of the severity of the newborns' prognosis and the potential burden of the neonates' disabilities on their families. The general attitude of the physicians (59-88%) was against making decisions that limit life support at EOL; even those infants with what are, in fact, untreatable and disabling medical conditions (56-88%). Most physicians (77%) indicated that ethics committees should be involved in EOL decision-making based on requests from parents, physicians, or both. The results of this study indicate strong pro-life attitudes among the physicians whose role is to take care of infants in Jordan. The results also emphasize the need for (1) the creation of clear EOL-focused regulations and guidelines, (2) the establishment of special ethical committees to inform and assist healthcare providers' efforts during EOL care, and (3) raised awareness and competencies regarding EOL and ethical decision-making among physicians taking care of newborns in Jordan's intensive care units.
BACKGROUND: Nurses working in the neonatal intensive care unit (NICU) who care for dying infants and their families say they do not necessarily have the expertise or the specific training to provide quality end-of-life-care (EOLC).
PURPOSE: The purpose of this review was to critically appraise the existing qualitative literature regarding nurses' experiences when caring for infants during end of life in the NICU and to identify barriers and enablers to provide quality EOLC.
SEARCH STRATEGY: A literature search was conducted using CINAHL and OVID databases. Studies that explored nurses' experiences when caring for infants who were dying or when lifesaving care was withdrawn were retrieved and 15 studies were thematically analyzed.
RESULTS: Five major themes emerged: advocating for the dying infant, building close relationships with the family, providing an appropriate care environment, nurses' emotional responses to dying or death, and professional inadequacy in EOLC.
IMPLICATIONS FOR PRACTICE: Nurses face multiple challenges when providing EOLC including moral dilemmas and feelings of professional inadequacy. Avoidance was a common strategy used by nurses to cope with the stress associated with EOLC. Managers can foster quality EOLC by implementing education sessions about infant mortality, EOLC, advocacy, team communication, and self-care practices.
IMPLICATIONS FOR RESEARCH: Research could evaluate the effectiveness of EOLC education sessions to build nurses' competence and confidence in advocacy and EOLC clinical skills.
INTRODUCTION: After the death of a child during pregnancy, birth or in the neonatal period, parents often experience feelings of guilt, disenfranchisement, feelings of betrayal by one's own body and envy of others. Such bereavement results in high rates of distress: psychologically, emotionally, physiologically and existentially. These data are collected using a national, longitudinal cohort to assess grief in mothers and their partners after the death of a child during pregnancy, birth or in the neonatal period. Our aim is to achieve a general description of grief, emotional health, and existential values after pregnancy or perinatal death in a Danish population.
METHODS AND ANALYSIS: The cohort comprises mothers and their partners in Denmark who lost a child during pregnancy from gestational week 14, during birth or in the neonatal period (4 weeks post partum). We began data collection in 2015 and plan to continue until 2024. The aim is to include 5000 participants by 2024, generating the largest cohort in the field to date. Parents are invited to participate at the time of hospital discharge or via the Patient Associations homepage. Data are collected using web-based questionnaires distributed at 1-2, 7 and 13 months after the loss. Sociodemographic and obstetric variables are collected. Validated psychometric measures covering attachment, continuing bonds, post-traumatic stress, prolonged grief, perinatal grief and existential values were chosen to reach our aim.
ETHICS AND DISSEMINATION: The study was approved by The Danish National Data Protection Agency (no. 18/15684, 7 October 2014). The results will be disseminated in peer-reviewed and professional journals as well as in layman magazines, lectures and radio broadcasts.
Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions. In this paper, we first systematically review existing guidelines relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision-making around resuscitation of newborns and withdrawal of treatment in humanitarian settings.
Background: Heterotaxy is a condition of abnormal lateralization of organs across the body's left-right axis, causing multiple congenital malformations. The anatomic manifestations of heterotaxy syndrome generally follow one of two patterns, referred to as right atrial isomerism (with two similar right atria and duplication of right-sided features of multiple organs) and left atrial isomerism (with two similar left atria and duplication of left-sided features of multiple organs). Cardiac surgical intervention for patients with heterotaxy syndrome depends on ventricular physiology and circulatory balance. For patients with single-ventricle physiology, a Fontan operation, which directs systemic venous return to the pulmonary arteries, is the definitive intervention. Prior to a Fontan operation, many patients require one or more palliative surgeries (eg, a Blalock-Taussig-Thomas shunt or bidirectional Glenn/Kawashima procedure) to prepare them for definitive correction.
Case Report: We present the case of a term female neonate who was transferred to our pediatric cardiovascular intensive care unit for management of suspected congenital cardiac disease. Echocardiography confirmed the diagnosis of heterotaxy syndrome with left atrial isomerism, an interrupted inferior vena cava with azygos continuation, and a hypoplastic left ventricle with single-ventricle physiology. At 11 months of age, she underwent a Kawashima procedure with subtotal pulmonary artery ligation. She tolerated the procedure well and is anticipated to remain stable for the near future, possibly without the need for further cardiac surgery.
Conclusion: Patients with heterotaxy syndrome have congenital malformations in several organ systems, requiring lifelong coordination of care among health providers across multiple disciplines.
PURPOSE: We describe the frequency and timing of withdrawal of life-support (WLS) in moderate or severe hypoxic-ischemic encephalopathy (HIE) and examine its associations with medical and sociodemographic factors.
PROCEDURES: We undertook a secondary data analysis of a prospective multicenter data registry of regional level IV Neonatal Intensive Care Units participating in the Children's Hospitals Neonatal Database. Infants =36 weeks gestational age with HIE admitted to a Children's Hospitals Neonatal Database Neonatal Intensive Care Unit between 2010 and 2016, who underwent therapeutic hypothermia were categorized as (1) infants who died following WLST and (2) survivors with severe HIE (requiring tube feedings at discharge).
RESULTS: Death occurred in 267/1,925 (14%) infants with HIE, 87.6% following WLS. Compared to infants with WLS (n = 234), the survived severe group (n = 74) had more public insurance (73% vs 39.3%, P = 0.00001), lower household income ($37,020 vs $41,733, P = 0.006) and fewer [20.3% vs 35.0%, P = 0.0212] were from the South. Among infants with WLS, electroencephalogram was performed within 24 hours in 75% and was severely abnormal in 64% cases; corresponding rates for MRI were 43% and 17%, respectively. Private insurance was independently associated with WLS, after adjustment for HIE severity and center.
CONCLUSIONS: In a multicenter cohort of infants with HIE, WLS occurred frequently and was associated with sociodemographic factors. The rationale for decision-making for WLS in HIE require further exploration.
Purpose: To explore factors predicting neonatal nurses' attitude towards end-of-life decisions in neonates, and to describe the nurses' viewpoints on end-of-life decisions; barriers to end-of-life decision making; parents', nurses', and ethical committees' involvement in the process of end-of-life decision making; and who should regulate end-of-life decisions regarding neonates.
Design and Methods: A cross-sectional descriptive correlational design was applied. Sample included 279 neonatal nurses working in 24 neonatal intensive care units across Jordan. Data were collected using internationally-accepted questionnaires. Descriptive and inferential statistics were applied in data analysis.
Results: Most nurses perceived that everything possible should be done to ensure a neonate's survival, even when they suffer severe prognosis (80%) and irrespective of the burden of the child's disability on the family (75%). Almost all nurses (96%) were against administering drugs with the purpose of ending the neonate's life and 63% were against continuing current treatment without adding others. The nurses' perceived effect of end-of-life decisions on their everyday life, and the importance of religious values to the nurses' personal lives, significantly predicted pro-life attitude scores. According to 80% of the nurses, legal constraints were the most significant barriers to end-of-life decision making. The majority of nurses (84%) indicated that non-religious bodies should establish end-of-life regulations for neonates.
Conclusion: Generally, nurses' attitude was supportive of life saving decisions at end-of-life, regardless of the survival odds and the probable health outcomes of the neonates.
Practice Implications: Neonates' end-of-life care, and parents' bereavement care, should be standard practices in every NICU, worldwide.
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.