Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.
Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.
Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.
Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.
Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
In a commentary in the New England Journal of Medicine (NEJM) on a ruling of the Texas Supreme Court in Miller v. HCA, George Annas, the NEJM legal analyst, observed, “One bioethical issue is as intractable today as 30 years ago when the topic was first publicly discussed: the extent of parental authority to refuse life-sustaining medical treatment for an extremely premature infant”. The case involved the resuscitation of a 23-week 615 g infant over parental objections. It took years to resolve the case in the legal system. Nearly two decades later, we might inquire whether neonatologists and other critical care practitioners have greater comfort in dealing with the issue of parental objection?
BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child.
PURPOSE: This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community.*
METHODS/SEARCH STRATEGY: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia.
IMPLICATIONS FOR PRACTICE: Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families.
IMPLICATIONS FOR RESEARCH: Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s.
PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach.
METHODS: Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken.
FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management.
IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
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.
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care.
STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team.
RESULTS: From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction.
CONCLUSION: Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.
Background: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants.
Purpose: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital.
Methods: This was a retrospective medical record review.
Findings: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management.
Implications for Practice: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU.
Implications for Research: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.
The first case of novel coronavirus disease of 2019 (COVID-19) caused by severe acute respiratory syndrome–coronavirus 2 (SARS-CoV-2) was reported in November 2019. The rapid progression to a global pandemic of COVID-19 has had profound medical, social, and economic consequences. Pregnant women and newborns represent a vulnerable population. However, the precise impact of this novel virus on the fetus and neonate remains uncertain. Appropriate protection of health care workers and newly born infants during and after delivery by a COVID-19 mother is essential. There is some disagreement among expert organizations on an optimal approach based on resource availability, surge volume, and potential risk of transmission. The manuscript outlines the precautions and steps to be taken before, during, and after resuscitation of a newborn born to a COVID-19 mother, including three optional variations of current standards involving shared-decision making with parents for perinatal management, resuscitation of the newborn, disposition, nutrition, and postdischarge care. The availability of resources may also drive the application of these guidelines. More evidence and research are needed to assess the risk of vertical and horizontal transmission of SARS-CoV-2 and its impact on fetal and neonatal outcomes.
Whenever parents lose their child, it is an enormously emotionally stressful situation for the family, regardless of whether the child is a stillborn or dies later in life. The earlier this painful loss occurs, the more precious becomes every opportunity for the family to spend with their child, providing care as well as saying goodbye.
[Début de l'article]
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.
OBJECTIVE: To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.
METHOD: Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher's exact test.
RESULTS: When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use 'recommendations' or 'single-option' choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).
CONCLUSION: Aligning parents to the trajectory of the news about their baby's poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.
PRACTICE IMPLICATIONS: Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.
Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein.
MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire.
RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001.
CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.
Background: Death and dying care is an area with less attention in nursing. This even is evidenced as more challenging in some populations such as neonates. Neonatal intensive care unit (NICU) nurses should be aware of the quality of care they provide for dying neonates and their families to find the areas which need attention.
Objective: The aim of this study was to assess the psychometric features of the Quality of Dying and Death (QODD) questionnaire in NICU nurses in Tehran, the capital city of Iran.
Methods: This methodological study was conducted in 2017. For this purpose, using census method, 130 NICU nurses working in selected hospitals participated. After the backward-forward translation, based on the method proposed by the International Test Commission, the psychometric properties of the Persian QODD were examined through the assessment of the face, content and construct validity, internal consistency, and stability.
Results: Final Persian QODD's content and face validity were accepted through a qualitative method. In the confirmatory factor analysis, the original version of QODD was not confirmed. Subsequently, an exploratory factor analysis was carried out in which phrases were included in three dimensions (symptom control, preparation for death of neonate, and professional attention) that explained 75% of the variance. Cronbach's alpha values ranged from 0.82 to 0.88 for these three dimensions. The intraclass correlation coefficient (ICC) was ICC = 0.94 between two tests performed with a 2-week interval on twenty eligible nurses.
Conclusions: The Persian version of QODD has acceptable psychometric properties in nurses working with the neonatal population and can be used to investigate the NICU nurses' opinion on the QODD provided in NICU patients.
BACKGROUND: Diagnosis of perinatal anomalies is a stressful experience that can negatively affect mothers, families, health-care systems, and societies. Perinatal palliative care (PPC) is a new development in maternity services which focuses on emotional, spiritual, social, and symptom management and provides care for women and families with fetal anomaly diagnosis. Therefore, this study aimed to develop a service package for women with fetal anomaly diagnosis in socio-cultural context of Iran.
METHODS: This research is an exploratory mixed methods study with the qualitative-quantitative sequencing design that consists of four sequential phases. In the first phase, following a qualitative approach, the researcher will explore the needs and experiences of women with fetal anomaly diagnosis, their families, health care providers and policy-makers. At the second phase, based on the review of the literature, Program, guideline, service package and protocol for care of women and their families after perinatal anomaly diagnosis will be identified in other countries. In the third phase, recommendations from qualitative phase and literature review will be combined, the initial protocol of the palliative care service package for perinatal anomaly diagnosis will be identified and prioritized. In the fourth phase, the opinion of experts about this service package will be collected by using RAND/UCLA Appropriateness Method technique and the applicability of the service package's recommendations in clinical settings will be determined.
DISCUSSION: The results of this Mixed Methods study are expected response the needs and experiences of the women with perinatal anomaly diagnosis being met in the socio-cultural context of Iran and a service package for palliative care of these women developed.
OBJECTIVES: To describe and compare characteristics of care provided at the end of life for children with chronic complex conditions and neonates who died in an ICU with those who died outside an ICU.
DESIGN: Substudy of a nation-wide retrospective chart review.
SETTING: Thirteen hospitals, including 14 pediatric and neonatal ICUs, two long-term institutions, and 10 community-based organizations in the three language regions of Switzerland.
PATIENTS: One hundred forty-nine children (0-18 yr) who died in the years 2011 or 2012. Causes of death were related to cardiac, neurologic, oncological, or neonatal conditions.
MEASUREMENTS AND MAIN RESULTS: Demographic and clinical characteristics, therapeutic procedures, circumstances of death, and patterns of decisional processes were extracted from the medical charts. Ninety-three (62%) neonates (median age, 4 d) and children (median age, 23 mo) died in ICU, and 56 (38%) with a median age of 63 months outside ICU. Generally, ICU patients had more therapeutic and invasive procedures, compared with non-ICU patients. Changes in treatment plan in the last 4 weeks of life, such as do-not-resuscitate orders occurred in 40% of ICU patients and 25% of non-ICU patients (p < 0.001). In the ICU, when decision to withdraw life-sustaining treatment was made, time to death in children and newborns was 4:25 and 3:00, respectively. In institutions where it was available, involvement of specialized pediatric palliative care services was recorded in 15 ICU patients (43%) and in 18 non-ICU patients (78%) (p = 0.008).
CONCLUSIONS: This nation-wide study demonstrated that patients with a complex chronic condition who die in ICU, compared with those who die outside ICU, are characterized by fast changing care situations, including when to withdraw life-sustaining treatment. This highlights the importance of early effective communication and shared decision making among clinicians and families.
We aim to clarify the efficacy of early palliative balloon pulmonary valvuloplasty (BPV) in neonates and young infants (< 60 days) with tetralogy of Fallot (TOF). We performed palliative BPV in 31 subjects, regardless of the presence of cyanosis, with Z score of the pulmonary valve diameter (PVD) less than - 2.00. Primary and secondary endpoints were to avoid early surgical interventions for subjects within 6 months of age and to undergo the pulmonary valve-sparing procedure at corrective surgery, respectively. We studied factors associated with these outcomes among them. BPV was performed at 19 days (14–33) of age and with a weight of 3.34 kg (3.02–3.65). Systemic oxygen saturation, Z score of the PVD, and pulmonary arterial index (PAI) were 87% (81–91), - 3.56 (- 4.15 to - 2.62), and 128 mm2/m2 (102–157), respectively. There were 16 and 13 subjects who avoided early surgical interventions and transannular repair, respectively. At the primary endpoint, there was no significant difference in age, weight, systemic oxygen saturation, and Z score of the PVD and PAI between the groups. However, there was a significant difference in the infundibular morphology (severe: mild-to-moderate, 8:8 vs 13:2, P = 0.029) between the groups. We performed prophylactic BPV within 30 days after birth in 7 acyanotic TOF patients with severe infundibular obstruction, among whom 5 avoided early surgical intervention. At the secondary endpoint, there were no significant difference in weight, systemic oxygen saturation, but in sex, age at BPV, and Z score of the PVD. Early palliative BPV prevented early surgical intervention in half of the neonates and young infants with TOF, which depended upon the degree of infundibular obstruction. However, early palliative BPV did not contribute to avoid transanular patch right-ventricular outflow repair among them.
The neonatal period from birth to less than or equal to 28 days is one of increased risk of death. Congenital anomalies and prematurity are 2 of the most common risk factors for death at this early age. Many of these neonates will die in an intensive care unit, some with full resuscitative efforts being undertaken despite the understanding that these actions are highly unlikely to yield an outcome different from death. Palliative care allows curative therapies to be provided alongside supportive techniques such as enhanced family communication, attention to spirituality and the psychosocial health of the family, management of symptoms other than those specific to the underlying disease process, and enhancing comfort. The American Academy of Pediatrics has set forth recommendations related to pediatric palliative care for the various pediatric subspecialties; however, much of the focus is on disease processes and curing or mitigating various illnesses. Given the high preponderance of death in the neonatal period, neonatal-perinatal medicine training programs should be tasked with generating formal palliative care training. Such training should be geared to providing better care for neonatal patients with a life-limiting or life-altering illness, and better equipping future neonatologists with the tools needed to provide truly comprehensive care for their sickest patients at risk for death and disability. This article serves to review the concept of palliative care in neonates, discuss the paucity of formal education in palliative care, explore the general trend in palliative care education, review various ways in which palliative care education can be formalized, and define metrics of a successful educational program.
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.
BACKGROUND: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.
PURPOSE: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.
SEARCH STRATEGY: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.
FINDINGS: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.
IMPLICATIONS FOR PRACTICE: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.
IMPLICATIONS FOR RESEARCH: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
BACKGROUND: While women in the Deep South area of the United States have higher rates of maternal and infant mortality, palliative and supportive care programs are lacking. Additionally, few studies have detailed referral triggers that are specific to the mother, infant, or pregnancy for inclusion in perinatal and neonatal palliative and supportive care programs.
PURPOSE: The purpose of this retrospective, descriptive study was to examine the sociodemographic factors and referral triggers for perinatal-neonatal palliative and supportive care services for women enrolled in a newly developed perinatal-neonatal palliative and supportive care program.
METHODS: Data were collected from medical records of 135 women enrolled in the program. Triggers for referral to the program were classified as fetal, maternal, or prenatal complications.
RESULTS: A diverse sample of women were enrolled in the program. Most infants survived to birth and discharge from the hospital. Two-thirds of referrals were related to infant complications and 34% were for multiple complications (fetal, maternal, and/or prenatal). Triggers for referral to the program were not related to sociodemographic characteristics of women.
IMPLICATIONS FOR PRACTICE: A comprehensive list of triggers that include maternal and prenatal complications, in addition to infant complications, may ensure at-risk women and infants, are enrolled in perinatal-neonatal palliative and supportive care programs early in pregnancy, regardless of sociodemographic factors.
IMPLICATIONS FOR RESEARCH: Prospective research on the effectiveness of perinatal-neonatal palliative and supportive care programs in diverse populations of women is needed. This includes the examination of family health outcomes and provider perspectives.