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…
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…
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…
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…
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…
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…
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:…
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…
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…
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…
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…
OBJECTIVE: Report on survival to discharge of children in a combined paediatric/neonatal intensive care unit (PNICU). DESIGN AND SETTING: Retrospective cross-sectional record review. PARTICIPANTS: All children (medical and surgical patients) admitted…
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,…
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…
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…
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…
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and…
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,…
(1) To explore attitudes and beliefs of neonatal nurses toward nursing care for dying neonates; (2) to estimate the influence of neonatal nurses' personal and professional characteristics on their attitudes towards end-of life care for dying infants.…
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…
AIM: Perinatal deaths occurring outside the neonatal intensive care unit (NICU) are rarely recorded in outcome studies, despite having a direct impact on perinatal statistics. Our aim was to investigate the timing and modes of perinatal deaths that…
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…
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…
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…
OBJECTIVE:
To determine the causes and process of death in neonates in Canada.
DESIGN:
Prospective observational study.
SETTING:
Nineteen tertiary level neonatal units in Canada.
PARTICIPANTS:
942 neonatal deaths (215 full-term and 727…
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…
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…
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…
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…
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,…
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous…
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.…
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…
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…
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…
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…
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…
Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.
