Browse Items · Pediatric Palliative Care Library

Withholding and withdrawal of life-sustaining treatments for neonate in Japan: Are hospital practices associated with physicians' beliefs, practices, or perceived barriers?

OBJECTIVE: To describe the current status of withholding or withdrawal of life-sustaining interventions (LSI) for neonates in Japan and to identify physician- and institutional-related factors that may affect advance care planning (ACP) practices…

Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities

Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.

Improving Health Care Provider Communication in End-of-Life Decision-Making

Critical care providers are responsible for many aspects of patient care, primarily focusing on preserving life. However, nearly 40% of patients who are admitted to an adult critical care unit will not survive. Initiating a conversation about…

Tags: 2017, Aacn Advanced Critical Care, Akintade B, August 2017 List, Communication, Critically Ill, end-of-life, Family Meeting, Haut C, Intensive Care, Wilson T

Death in the neonatal intensive care unit: changing patterns of end of life care over two decades

BACKGROUND: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. OBJECTIVE: To document changes in the causes of death and its management over the last two…

End of life care in the setting of extreme prematurity - practical challenges and ethical controversies

While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely…

Tags: 2023, Bertaud S, Decision-making, End Of Life, Intensive Care, June 2022 List, Neonatal, Palliative Care, Premature infant, Seminars in Fetal and Neonatal Medicine, Terminal Care, Wilkinson DJ

Dying Later, Surviving Longer

Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population…

Tags: 2016, Archives of Disease in Childhood, Child, Children & Youth, Chronic Illnesses, Death, Decision Making, Demographics, Epidemiology, Ethics, Intensive Care, J Weitz, July 2016 List, Life, Mortality, Pain, Pediatrics, Wilkinson D

Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit

Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The…

From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to…

Tags: 2018, American Journal of Bioethics, Fiester A, Futility, Hope, Intensive Care, March 2018 List, Pediatrics, Weiss EM

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Using entrustable professional activities to assess graduation readiness in pediatric critical care

Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the…

Tags: 2018, Carraccio C, Child, Critical Care Medicine, Critically Ill Patient, Expectation, Female, Herman B, Human, Intensive Care, Male, March 2018 List, Mink R, Schwartz A, statistical analysis, Terminal Care, Turner D, Validity

Priorities for Nutrition Research in Pediatric Critical Care

BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be…

High incidence of pulmonary bacterial co-infection in children with severe respiratory syncytial virus (RSV) bronchiolitis

BACKGROUND: Respiratory syncytial virus (RSV) is the most common cause of viral lower respiratory tract infections (LRTI). Viral LRTI is a risk factor for bacterial superinfection, having an escalating incidence with increasing severity of…

Beta-endorphin concentration after administration of sucrose in preterm infants

BACKGROUND: Sucrose is an effective analgesic for procedural pain in preterm infants. It has been hypothesized that its analgesic effects are mediated by the release of endogenous opioid neurotransmitters such as beta-endorphin. OBJECTIVE: To…

Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study

Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are…

Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative

Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life…

Parental Involvement In Neonatal Critical Care Decision-making.

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care…

Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage

Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the…

Development and integration of a perinatal palliative care program at a tertiary care center

Purpose of study Advances in fetal medicine have increased referrals to tertiary perinatal care centers. NRP guidelines recommend that only neonates with anencephaly and less than. 400 grams are not to be resuscitated. In 2015, Oklahoma passed a law…

Modelling Neonatal Care Pathways For Babies Born Preterm: An Application Of Multistate Modelling.

Modelling length of stay in neonatal care is vital to inform service planning and the counselling of parents. Preterm babies, at the highest risk of mortality, can have long stays in neonatal care and require high resource use. Previous work has…

Loss in the NICU Sibling Matters

Siblings of patients that have lengthy stays in the neonatal intensive care unit (NICU) may be affected emotionally by their brother’s or sister’s condition, separation, or even death. In an effort to assess the effect of perinatal loss on siblings a…

Tags: 2013, American Journal of Hospice & Palliative Medicine, Backlog, Bereavement, Carter BS, Family, Intensive Care, Journal Article, Loss, Neonatal, Robinson E, Sandler CL, sibling bereavement, Siblings

Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?

The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients.…

Tags: 2018, Agosto C, Benini F, Brugnaro L, Home, Hospice, Intensive Care, Journal of Pediatric Intensive Care, July 2018 List, life-limiting disease, long-term ventilation, Mechanical Ventilation, Outcomes, Pediatric Palliative Care, Pediatrics, Rusalen F

[end-of-life In Specialized Medical Pediatrics Department: A French National Survey]

AIMS: In France, most of children die in the hospital. This national survey aimed to achieve better understanding of end-of life care in specialized medical pediatrics departments for children facing the end-of-life, identify the available resources,…

Always a burden? Healthcare providers' perspectives on moral distress

BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…

Moral distress within neonatal and paediatric intensive care units: a systematic review

OBJECTIVE: To review the literature on moral distress experienced by nursing and medical professionals within neonatal intensive care units (NICUs) and paediatric intensive care units (PICUs). DESIGN: Pubmed, EBSCO (Academic Search Complete, CINAHL…

Tags: 2016, Archives of Disease in Childhood, Backlog, Davis PG, Decision Making, Ethics, Gillam L, Intensive Care, Janvier A, Journal Article, Moral Distress, Palliative Care, Prentice T

Is It Taking Longer To Die In Paediatric Intensive Care In England And Wales?

Abstract
INTRODUCTION:
All-cause infant and childhood mortality has decreased in the UK over the last 30 years. Advances in paediatric critical care have increased survival in paediatric intensive care units (PICUs) but may have affected how and when…

In What Circumstances Will A Neonatologist Decide A Patient Is Not A Resuscitation Candidate?

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.

Study design An…

Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?

Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the…

Intensive care: because we can or because we should?

2018-01

Tags: 2018, Archives of Disease in Childhood, Intensive Care, March 2018 List, Mortality, Palliative Care, Pearson GA

Characteristics of family conferences at the bedside versus the conference room in pediatric critical care

OBJECTIVE: To compare characteristics of family conferences at the bedside vs. the conference room in the PICU. DESIGN: Single-site, cohort survey study. SETTING: Thirty-three bed academic PICU in an urban setting. PARTICIPANTS: Ten PICU physicians…

Junior versus senior physicians for informing families of intensive care unit patients

To compare the effectiveness of information delivered to family members of critically ill patients by junior and senior physicians, we performed a prospective randomized multicenter trial in 11 French intensive care units. Patients (n = 220) were…

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It

Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily…

Tags: 2020, Cortezzo DE, Decision-making, End-of-life Care, ethical confrontation, February List 2023, Frontiers in Pediatrics, Intensive Care, Medical Futility, Mills M, Moral Distress, Neonatal, neonatal intensive care, periviability

Death and bereavement in a paediatric intensive care unit: parental perceptions of staff support

OBJECTIVES: To determine which staff behaviours and interventions were helpful to a family who had a child die in the intensive care unit (ICU) and which behaviours could be improved. METHODS: Families whose child died six to 18 months earlier were…

Tags: 2003, Backlog, Bereavement, Death, Grief, Intensive Care, Journal Article, Macnab AJ, Northway T, Paediatrics & Child Health, Parents, Ryall K, Scott D, Staff, Straw G, Support

Screening Criteria Improve Access To Palliative Care In The Picu.

OBJECTIVES:
To test the ability of palliative care screening criteria to improve access to palliative care services in the PICU and examine the association between palliative care team involvement and ICU and hospital length of…

Pediatric Ethics And Communication Excellence (peace) Rounds: Decreasing Moral Distress And Patient Length Of Stay In The Picu

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We…

Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation

Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large…

A Descriptive Report Of End-of-life Care Practices Occurring In Two Neonatal Intensive Care Units

BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and…

Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit

Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest,…

Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service

BACKGROUND: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. OBJECTIVE(S): (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a…

Neonatal Death In The Emergency Department: When End-of-life Care Is Needed At The Beginning Of Life

The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these…

Tags: 2016, Clinical Pediatric Emergency Medicine, Emergency Department, Emergency Medical Care, Fetuses, Hospitals, Intensive Care, Jessica T Fry, Mortality, Natalia Henner, Neonatal Bereavement, Neonatal Death, Newborn Babies, November 2016 List, Palliative Care, Stillbirth

Implementing music therapy in a Norwegian neonatal intensive care unit

BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and…

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