Clinicians frequently worry that medications used to treat pain and suffering at the end of life might also hasten death. Intentionally hastening death, or euthanasia, is neither legal nor ethically appropriate in children. In this article, we…
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…
OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children…
BACKGROUND AND OBJECTIVES: Pediatric bioethics presumes that decisions should be taken in the child's best interest. If it's ambiguous whether a decision is in the child's interest, we defer to parents. Should parents be permitted to consider their…
For centuries, many physicians and parents assumed that it was ethically justifiable to lie to a dying child. The reasoning was clear. Because the lie would likely eliminate or prevent a concrete harm (the child's fear), and the lie is about a harm…
Parents generally have the right to make medical decisions for their children. This right can be challenged when the parents’ decision seems to go against the child’s interests. The toughest such decisions are for a child who will survive with…
In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert…
OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by…
BACKGROUND AND OBJECTIVES: There is increasing unmet need for solid organ donation. Alternative donor sources, such as donation after circulatory determination of death (DCDD), are needed. The objective of this study was to examine the impact of DCDD…
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…
BACKGROUND: After a child's death, parents may experience depression, posttraumatic stress disorder (PTSD), and increased risk for cancers, diabetes, psychiatric hospitalization, and suicide. Racial/ethnic differences are unknown. This longitudinal…
OBJECTIVE: To describe the incidence and outcomes of children with chronic respiratory failure secondary to severe bronchopulmonary dysplasia (BPD) on chronic positive pressure ventilation (PPV) via tracheostomy at home. METHODS: We retrospectively…
Respiratory outcomes of patients with bronchopulmonary dysplasia (BPD) range from no oxygen requirement to chronic respiratory failure. Outcomes of least severe types of BPD are well described. Limited data exist on outcomes of patients with…
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,…
BACKGROUND AND OBJECTIVES: Advance care planning (ACP) is increasingly regarded as the gold standard in the care of patients with life-limiting illnesses. Research has focused on adults, but ACP is also being practiced in pediatrics. We conducted a…
OBJECTIVES: Pain in children with cerebral palsy (CP) is underrecognized, undertreated, and negatively affects quality of life. Communication challenges and multiple pain etiologies complicate diagnosis and treatment. The primary objectives of this…
One of the most difficult decisions that doctors and parents must make is the decision to withdraw life-sustaining treatment. Doctors find it easier to withdraw treatments in situations where withdrawal will be rapidly fatal rather than in situations…
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their…
OBJECTIVE:: Timely, high quality communication with families is essential to family-centered decision-making. Quality communication is represented by widespread documentation of prognostic, goals-of-care conversations (PGOCC) in the pediatric…
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH…
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and…
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…
OBJECTIVE: Our goal was to determine which of 3 analgesics, acetaminophen, ibuprofen, or codeine, given as a single dose, provides the most efficacious analgesia for children presenting to the emergency department with pain from acute musculoskeletal…
OBJECTIVES: We sought to determine the clinical spectrum, survival, and long-term functional outcome of a cohort of pediatric patients with mitochondrial diseases and to identify prognostic factors. METHODS: Medical charts were reviewed for 73…
OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children's…
OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…
OBJECTIVE: The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of…
OBJECTIVE: The objective of this study was to document the frequency of pediatric resident experiences with end-of-life care for children and the educational context for these experiences, as well as to determine whether residents deem their…
OBJECTIVES: More than 500,000 adolescents with special health care needs age into adulthood each year in the United States, and there is growing recognition of the need for support of their transition to adult-oriented health care. Because of…
OBJECTIVE: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it…
Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven…
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in…
More than 25% of children survive to hospital discharge after in-hospital cardiac arrests, and 5% to 10% survive after out-of-hospital cardiac arrests. This review of pediatric cardiopulmonary resuscitation addresses the epidemiology of pediatric…
