Browse Items · Pediatric Palliative Care Library

Medical assistance in dying: A paediatric perspective

The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition'…

Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review

BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from…

Tags: 2018, Adolescent, Beresford B, Booth A, Child, Consensus, Delphi Technique, Fraser L, Humans, Infant, January 2019 List, Maddison J, Newborn, Palliative Care, Palliative Medicine, Wright K

Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population

BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…

Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland

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…

Tags: 103-90-2 (paracetamol), 2018, Adolescent, Aebi C, Ansari M, Article, Baer R, Bergstraesser E, Bernet V, Bmc Pediatrics, Brazzola P, Bucher HU, Buder R, Cagnazzo S, Cardiology, Cause Of Death, Child, Child Care, Child Death, Cignacco E, Cohort Analysis, community care, Dinten B, Dorsaz A, Drug Use, Elmer F, Engberg S, Enriquez R, Eskola K, Fahrni-Nater P, Female, Finkbeiner G, Frey B, Frey U, Greiner J, Hassink RI, Health Care Utilization, Home Care, Hospital Admission, Human, Infant, Intensive Care Unit, invasive procedure, Keller S, Kretschmar O, Kroell J, Laubscher B, Leibundgut K, Length Of Stay, Life Sustaining Treatment, Major Clinical Study, Malaer R, Male, Medical Record Review, Meyer A, narcotic analgesic agent, Nelle M, Neonatology, Neuhaus T, Neurology, Newborn, Niggli F, October 2018 List, Oncology, Paracetamol, Perrenoud G, Pfammatter JP, Plecko B, Popovic MB, Ramelet AS, Resuscitation, Retrospective Study, Rupf D, Sennhauser F, September 2018 List, Stade C, Steinlin M, Stoffel L, Stuessi C, Switzerland, Terminal Care, Thomas K, Treatment Withdrawal, Von der Weid N, von Vigier R, Vonarburg C, Wagner B, Wernz B, Wieland J, Zimmermann K

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…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

End-of-life decisions and practices for very preterm infants in the Wallonia-Brussels Federation of Belgium

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…

Children's outcomes at 2-year follow-up after 4 years of structured multi-professional medical-ethical decision-making in a neonatal intensive care unit

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

Cultural and religious considerations in pediatric palliative care

OBJECTIVE: A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare.…

Memory making in neonatal end-of-life care

Background: Providing appropriate psychosocial care for parents experiencing the loss of a newborn is crucial. Currently, a number of practices are recommended in perinatal and neonatal palliative care guidelines that are designed to help families to…

Tags: 2018, conference abstract, Grounded Theory, Harms LK, health practitioner, Human, Infant, Interview, Journal of Paediatrics and Child Health, June 2018 List, Memory, Newborn, Nicholson PF, Terminal Care, Thornton RK

Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis

BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…

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…

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…

Parental assessment of comfort in newborns affected by lifelimiting conditions treated by a standardized neonatal comfort care program

Objective:To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program.Study Design:Participants were parents (n=35…

Brachytherapy in children with rhabdomyosarcomas of the nasolabial fold

BACKGROUND: Rhabdomyosarcomas (RMS) of the nasolabial fold can be difficult to manage surgically due to functional and cosmetic limitations. Therefore, brachytherapy (BT) has been proposed to improve local control while limiting the volume of…

AIMP1 deficiency presents as a cortical neurodegenerative disease with infantile onset

We report the second family with AIMP1 deficiency, due to a homozygous truncating AIMP1 (g.107248613 C > T) mutation. This female showed early-onset developmental arrest, intractable epileptic spasms, microcephaly, and a rapid clinical course leading…

Birth weight percentile and the risk of term perinatal death

OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…

Clinical and laboratory factors that predict death in very low birth weight infants presenting with late-onset sepsis

BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

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:…

Cultural explanations and clinical ethics: active euthanasia in neonatology

The authors have undertaken a study to explore the views in non-Western cultures about ending the lives of newborns with genetic defects. This study consists of including active euthanasia alongside withdrawal and withholding of treatment as…

Tags: 2014, Active, Ahmad A, Attitude, Backlog, Congenital Abnormalities, Euthanasia, Female, Hinduism, Humans, Infant, Islam, Journal Article, Journal of Medical Ethics, Male, Newborn, Students

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Perinatal palliative care: a developing specialty

Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on…

Tags: 2014, Argentina, Backlog, Decision Making, Doumic L, Humans, Infant, International Journal of Palliative Nursing, Journal Article, Kiman R, Newborn, Organizational Case Studies, Palliative Care, perinatology, Specialization

Bereavement support used by mothers in Ireland following the death of their child from a life-limiting condition

BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…

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

Childhood and adolescent cancer statistics, 2014

In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…

Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors

PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed…

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…

Postmortem computed tomography imaging in the investigation of nontraumatic death in infants and children

OBJECTIVE: To determine the accuracy of postmortem computed tomography (PMCT) for the assessment of causes in nontraumatic deaths in children. STUDY DESIGN: We enrolled cases of nontraumatic deaths of infants and children who underwent PMCT at a…

Tags: 2013, Autopsy, Backlog, Biomed Research International, Child, Death, Female, Humans, Ikeda S, Infant, Journal Article, Kaneko K, Kawasaki H, Kurokawa H, Male, Newborn, Noda Y, Ohashi A, Preschool, Tanigawa N, Tomography, Tsuji Shoji, X-Ray Computed, Yoshimura K

Differences in characteristics of dying children who receive and do not receive palliative care

OBJECTIVE: Comparing demographic and clinical characteristics associated with receipt of palliative care (PC) among children who died in children's hospitals to those who did not receive PC and understanding the trends in PC use. METHODS: This…

Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…

Tags: 2013, Adolescent, Backlog, Carter BS, Child, Fetus, Feudtner C, Friebert SE, Hood M, Hospice Care, Imaizumi S, Infant, Jewell J, Journal Article, Komatz K, Newborn, Palliative Care, Pediatric, Pediatrics, Young Adult

Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting…

Palliative care in neonatal neurology: robust support for infants, families and clinicians

Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care…

Early neurodevelopmental outcomes of extremely preterm infants

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…

Recruiting bereaved parents for research after infant death in the neonatal intensive care unit

Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their…

Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States

Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…

Good-parent beliefs of parents of seriously ill children

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

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