Browse Items · Pediatric Palliative Care Library

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

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…

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…

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…

Parental Physical Proximity In End-of- Life Care In The Picu.

OBJECTIVE:
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay…

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

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…

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…

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…

Parent Perspectives Of Neonatal Intensive Care At The End-of-life

Highlights
•Parent experiences surrounding end-of-life care in the NICU were explored.
•The opportunity to be a parent was important regardless of the infant's prognosis.
•NICU nurses played a critical role in facilitating parenting.
•Living with…

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…

Storytelling In The Early Bereavement Period To Reduce Emotional Distress Among Surrogates Involved In A Decision To Limit Life Support In The Icu: A Pilot Feasibility Trial

OBJECTIVES:
Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative…

[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,…

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

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

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…

Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis

BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content…

Impact of child death on paediatric trainees

OBJECTIVE: To assess the prevalence of symptoms of acute stress reactions (ASR) and post-traumatic stress disorder (PTSD) in paediatric trainees following their involvement in child death. DESIGN: A survey designed to identify trainees' previous…

Ethical issues in the pediatric intensive care unit

Advanced technology and better scientific understanding of mechanisms of disease now permit intensive care personnel to extend life beyond what some patients and families consider reasonable, leading, in part, to the "patients' rights" movement and…

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…

Bacteraemia and antibiotic use in respiratory syncytial virus infections

AIMS: To examine the frequency of and risk factors for bacteraemia in children hospitalised with respiratory syncytial virus (RSV) infection; and to determine current use of antibiotics in hospitalised children with RSV infection. METHODS:…

Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients

OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical…

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

Home management of the dying NICU patient

Intensive aggressive medical therapy does not always result in cure. For some neonates it is a futile exercise that may prolong a short life of suffering. In this article, we will discuss the babies for whom aggressive therapy may not be appropriate,…

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…

Resource utilization and outcome in gravely ill intensive care unit patients with predicted in-hospital mortality rates of 95% or higher by APACHE III scores: the relationship with physician and family expectations

OBJECTIVE: To assess resource utilization and outcome in gravely ill patients admitted to an intensive care unit (ICU) and the potential association with health care workers' and family members' expectations. PATIENTS AND METHODS: We retrospectively…

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…

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…

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

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…

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

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

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

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

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…

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…

Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit

PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded…

Tags: 2018, April 2018 List, Bereavement, Butler AE, Child, Child Death, Copnell B, Grounded Theory, Hall H, Intensive Care, Intensive Care Units, Journal of Pediatric Nursing, Nurse, Only Child, Parent, Pediatric, Pediatric Intensive Care Unit, Relationship

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

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…

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…

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