Browse Items · Pediatric Palliative Care Library

"I Didn't Want My Baby to Pass, But I Didn't Want Him Suffering Either": Comparing Bereaved Parents' Narratives With Nursing End-of-Life Assessments in the Pediatric Intensive Care Unit

Little is known about how nursing care at the end of a child's life impacts long-term parental bereavement. We aimed to explain, contextualize, and examine comparisons between quantitative trends in children's end-of-life care and parents'…

[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,…

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…

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…

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…

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:…

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

Bereaved Parents' Perceptions of Infant Suffering in the NICU

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Baughcum AE, Fortney CA, Gerhardt CA, Infant, Intensive Care, Journal of Pain and Symptom Management, Keim MC, Moscato EL, Mothers, Neonatal, Neonatal Intensive Care Units, Newborn Infant, Nicu, Parents, Perception, Suffering, Winning AM

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…

Characteristics and outcomes of coronavirus disease 2019 (COVID-19) in critically ill pediatric patients admitted to the intensive care unit: A multicenter retrospective cohort study

BACKGROUND: Characteristics of critical Severe Acute Respiratory Syndrome-related Coronavirus 2 (SARS-CoV-2) infection in children is not well understood. This study described the clinical characteristics of children admitted to intensive care units…

Tags: 2020, Al-Otaibi AM, Aldaithan A, Alfraij A, Alghounaim M, Almazyad M, Almutairi M, Alshammari S, Alsharrah D, Bin Alamir AA, Children, Intensive Care, Journal of Infection and Public Health, Kamel AM, Macarambon JM, March 2021 List, Mortality, SARS-CoV-2

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…

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

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…

Defining palliative opportunities in pediatric patients with bone and soft tissue tumors

Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how…

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…

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

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

Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala

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…

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…

Factors associated with admission of children to an intensive care unit and readmission to hospital within 28 days of discharge: A population-based study

AIM: Hospital readmissions within 28 days are an important performance measurement of quality and safety of health care. The aims of this study were to examine the rates, trends and characteristics of paediatric intensive care unit admissions, and…

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

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…

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,…

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…

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

Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study

Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may…

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…

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

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…

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…

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

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…

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…

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…

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

Browse Items (68 total)