Browse Items · Pediatric Palliative Care Library

Your child is dead

OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…

Worth a Try? Describing the Experiences of Families during the Course of Care in the Neonatal Intensive Care Unit When the Prognosis is Poor

OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…

Withholding nutrition from seriously ill newborn infants: a parent's perspective

Withdrawal of ventilatory support outside the intensive care unit: guidance for practice

OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…

Withdrawal of mechanical ventilation in pediatric and neonatal intensive care units

Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…

Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views

Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…

Why don't we talk?

2009

Tags: 2009, Archives Of Pediatrics & Adolescent Medicine, Backlog, Communication, Critical Illness, Emotions, Humans, Infant, Jones Jr MD, Journal Article, Neonatology/education, Newborn, Professional-family Relations

Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?

An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…

Tags: 2018, Attitude Of Health Personnel, Clinical Decision-Making/mt [Methods], Humans, Infant, Infant Care/mt [Methods], Infant Care/px [Psychology], Infant Care/st [Standards], July 2019 List, Neonatologists/px [psychology], Neonatologists/st [Standards], Netherlands/ep [Epidemiology], Newborn, Pediatrics, Scandinavian and Nordic Countries/ep [Epidemiology], Survival Rate/td [Trends], Verhagen A A E, Withholding Treatment/st [Standards]

Whom are we comforting? An analysis of comfort medications delivered to dying neonates

Where infants die: examination of place of death and hospice/home health care options in the state of Wisconsin

Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening…

Where do children with complex chronic conditions die? Patterns in Washington State, 1980-1998

OBJECTIVE: Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to…

Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic

OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…

Use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units

The purpose of this study was to assess the use of analgesic agents for invasive medical procedures in pediatric and neonatal intensive care units. The directors of 38 pediatric units and 31 neonatal units reported that analgesics were infrequently…

Unusual clinical presentations in four cases of Leigh disease, cytochrome C oxidase deficiency, and SURF1 gene mutations

Mutations in the SURF1 gene are the most frequent causes of Leigh disease with cytochrome c oxidase deficiency. We describe four children with novel SURF1 mutations and unusual features: three had prominent renal symptoms and one had ragged red…

Unilateral pediatric "do not attempt resuscitation" orders: the pros, the cons, and a proposed approach

A unilateral do not attempt resuscitation (DNAR) order is written by a physician without permission or assent from the patient or the patient's surrogate decision-maker. Potential justifications for the use of DNAR orders in pediatrics include the…

Tags: 2014, Backlog, Child, Ethics, Extremely Premature, Female, Gross I, Humans, Infant, Journal Article, Male, Medical, Mercurio MR, Murray PD, Newborn, Parental Consent, Pediatrics, Prognosis, Quality Of Life, Resuscitation Orders

Trisomy 18 in neonates: prenatal diagnosis, clinical features, therapeutic dilemmas and outcome

The study aimed to analyse the clinical courses of aggressively treated neonates with cytogenetically confirmed trisomy 18, with special attention focused on the efficiency of prenatal diagnostics, associated malformations, therapeutic dilemmas and…

Treatment of pain in pediatric oncology: a Swedish nationwide survey

Pain treatment is a crucial aspect in the care of children with cancer and there are many studies demonstrating inefficient pain treatment. In this study, questionnaires dealing with pain treatment of children with malignant diseases were sent to all…

Tracking neonatal nosocomial infection: the continuous quality improvement cycle

Neonatal nosocomial infection (NNI) is a major complication of neonatal care, increasing mortality, morbidity and the costs of healthcare. Management of NNI involves attention to many details of care, creating a culture of change within a neonatal…

Tags: 2011, Aydon L, Backlog, Biggs S, Cross Infection/epidemiology/prevention & control, Gill AW, Humans, Incidence, Infant, Infant Care/methods/organization & administration/standards, Infection Control/methods/organization & administration/standards, Jones C, Journal Article, Keil AD, Newborn, Quality Improvement/organization & administration/standards, The Journal Of Hospital Infection

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…

Thinking outside the box: prenatal care and the call for a prenatal advance directive

The role of the courts in disagreements over the care of seriously ill babies

Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.

Tags: 2017, British Journal Of Nursing, December 2017 List, Experimental Therapy, Griffith R, Hospitalized Child, Human, Infant, Legislation And Jurisprudence, Long Term Care, Newborn, Terminal Care, Treatment Outcome, United Kingdom

The relationship between grief adjustment and continuing bonds for parents who have lost a child

This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study…

The natural history of Niemann-Pick disease type C in the UK

Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…

The natural history of medium-chain acyl CoA dehydrogenase deficiency in the Netherlands: clinical presentation and outcome

OBJECTIVES: To describe the clinical presentation and long-term follow-up of a large cohort of patients with medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. STUDY DESIGN: A nationwide, retrospective analysis of clinical presentation and…

The Groningen protocol--euthanasia in severely ill newborns

2005

Tags: 2005, Backlog, Death and Euthanasia, Euthanasia/ethics/legislation & jurisprudence, Humans, Infant, Intensive Care/ethics/legislation & jurisprudence, Journal Article, Netherlands, Newborn, Practice Guidelines, Prognosis, Sauer PJ, The New England Journal Of Medicine, Third-Party Consent/legislation & jurisprudence, Verhagen E

The ethics of withholding/withdrawing nutrition in the newborn

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures…

The emerging issue of euthanasia

2005

Tags: 2005, Adolescent, Archives Of Pediatrics & Adolescent Medicine, Backlog, Child, Decision Making, Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Netherlands, Newborn, Pediatrics/statistics & numerical data, Preschool, Siden HB, Terminal Care

The Effects of Chronic Disease on Ambulatory Care–Sensitive Hospitalizations for Children or Youth

Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research…

The death of a twin

Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…

Tags: 1995, Adolescent, Adult, Backlog, Bryan EM, Child, Child Psychology, Counseling, Death, Female, Fetal Death, Grief, Guilt, Humans, Infant, Journal Article, Male, Newborn, Palliative Medicine, Parent-child Relations, Preschool, sibling bereavement, Social Support, Twins

The clinical spectrum of mitochondrial disease in 75 pediatric patients

The clinical presentation of mitochondrial disorders in childhood is highly variable causing difficulties in diagnosis and management. We assessed records of 75 children (48 male, 27 female) with a biochemically and/or molecularly established…

The clinical and demographic characteristics of nonneuronopathic Gaucher disease in 887 children at diagnosis

OBJECTIVE: To describe the clinical and demographic characteristics of nonneuronopathic Gaucher disease (GD) in children at the time of diagnosis. DESIGN: Longitudinal observational database of the International Collaborative Gaucher Group Gaucher…

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

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…

Task force 1: the changing profile of congenital heart disease in adult life

Talking with parents about end-of-life decisions for their children

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to…

Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity

CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether…

Tags: 2012, Anderson PJ, Apnea/drug therapy, Asztalos EV, Backlog, Barrington KJ, Blindness/epidemiology/etiology/prevention & control, Caffeine/adverse effects/therapeutic use, Central Nervous System Stimulants/adverse effects/therapeutic use, Cerebral Palsy/epidemiology, Child, Child Development, Cognition Disorders/epidemiology/etiology/prevention & control, Davis PG, Deafness/epidemiology/etiology/prevention & control, Developmental Disabilities/epidemiology/etiology/prevention & control, Dewey D, Doyle LW, Female, Follow-up Studies, Grunau RE, Humans, Incidence, Infant, JAMA, Journal Article, Male, Moddemann D, N2N, Newborn, Odds Ratio, Ohlsson A, Premature, Preschool, Roberts RS, Schmidt B, Solimano A, Survival Analysis, Tin W, Treatment Outcome, Trial Investigators Caffeine for Apnea of Prematurity (CAP), Very Low Birth Weight

Survival in trisomy 13 and trisomy 18 cases ascertained from population based registers.

Survey on Neonatal End-of-Life Comfort Care Guidelines Across America

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

Summary proceedings from the neonatal pain-control group

Recent advances in neurobiology and clinical medicine have established that the fetus and newborn may experience acute, established, and chronic pain. They respond to such noxious stimuli by a series of complex biochemical, physiologic, and…

Studies on nutrition in severely neurologically disabled children in an institution

Severe neurological handicaps in children are frequently accompanied by growth retardation. We have studied 13 severely neurologically impaired children in an institution to see if their poor growth was related to a low intake of energy and…

Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73)…

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