Browse Items · Pediatric Palliative Care Library

Palliative Care After Neonatal Intensive Care: Contributions Of Leonetti Law And Remaining Challenges

Tags: 2017, April 2017 List, Archives de Pediatrie, Artificial Feeding, Astruc D, Brain Damage, Climate, Clinical Practice, Clinical Study, Cojean N, Decision Making, Dillenseger L, Drug Withdrawal, Dying, Emotion, Escande B, Ethics, Health Promotion, Human, Human Dignity, Hydration, Kuhn P, Life Sustaining Treatment, Medical Decision Making, Medical Ethics, Medical Practice, Neonatology, Newborn, Newborn Intensive Care, Palliative Therapy, Patient Right, Perinatal Care, Perinatal Nursing, Quality Of Life, Short Survey, Survival, Terminal Care, Treatment Withdrawal, Zores C

Late Effects of Treatment and Palliative Care

Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high…

Tags: 147-94-4 (cytarabine), 154-93-8 (carmustine), 15475-56-6 (methotrexate), 15663-27-1 (cisplatin), 2017, 26035-31-4 (cisplatin), 59-05-2 (methotrexate), 69-74-9 (cytarabine), 7413-34-5 (methotrexate), 96081-74-2 (cisplatin), Advance Care Planning, Appetite Disorder, Banerjee A, Bone Density, Brain Tumor, Carmustine, Central Nervous System Tumor, Chang E, Childhood Cancer Survivor, Cisplatin, Constipation, Corticosteroid, Cytarabine, Diarrhea, Dyspnea, Endocrine Disease, Fatigue, Genetic Polymorphism, Goldsby R, Health Care Quality, Human, Incidence, Medical Decision Making, Medulloblastoma, Methotrexate, Morbidity, Mortality Rate, Mueller S, Nausea And Vomiting, Neuroectoderm Tumor, Neuropathic Pain, Neuropsychological Test, November 2017 List, Pain Assessment, Palliative Therapy, Patient Care, Pediatric Oncology, Phase 1 Clinical Trial (topic), Priority Journal, Psychosocial Disorder, Quality Of Life, Questionnaire, Radiation Injury, Respiration Depression, Seizure, Signal Transduction, Spasticity

Who Will Speak for Me? Disparities in Palliative Care Research with "unbefriended" Adolescents Living with HIV/AIDS

Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…

Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States

Using a treatment-tradeoff method to elicit preferences for the treatment of locally advanced non-small-cell lung cancer

The study was designed to evaluate a treatment-tradeoff method for its potential in helping lung cancer patients make treatment decisions. A treatment-tradeoff interview was conducted to determine how patients weighed potential survival benefits…

Assessing preferences about the DNR order: does it depend on how you ask?

Despite increasing emphasis on advance directives, there has been little methodologic work to assess preferences about the "do not resuscitate" (DNR) order. This developmental work assessed, in a non-patient group, the performance of a…

Communicating the benefits of chronic preventive therapy: does the format of efficacy data determine patients' acceptance of treatment?

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

Validation of a Decisional Conflict Scale

1995

Tags: 1995, Backlog, Journal Article, Medical Decision Making, O'Connor AM

Test-retest reliabilities of two treatment-preference instruments in measuring utilities

The authors assessed the test-retest reliabilities of two treatment-preference instruments recently applied to the measurement of the utilities of health states after different treatment modalities for cancer. The first instrument measures the…

Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?

Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients &…

Whose utilities for decision analysis?

The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of…

Validation of a decision regret scale

2003

Tags: 2003, Backlog, Brehaut JC, Feldman-Stewart D, Gordon E, Hack TF, Journal Article, Medical Decision Making, O'Connor AM, Siminoff L, Wood TJ

Teamwork and conflicts in paediatric end-of-life care

Neonatal end-of-life care: A single-center NICU experience in Israel over a decade

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…

Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses

Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits…

Opinions of Israeli neonatologists about life and death decisions in neonates

Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious…

Facilitating Milk Donation in the Context of Perinatal Palliative Care

The option to donate milk within the context of perinatal palliative care allows pregnant women to be involved in medical decision making before birth. In this article we examine how a perinatal bereavement program engages women and families in the…

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC…

Care Provider Behaviors That Shape Parent Identity as a "Good Parent" to Their Seriously Ill Child

Full text linksCite Abstract Background: Parents of medically complex children hold deeply personal definitions of how to be "good parents" that guide their medical decision making and interactions with providers and are impacted by provider…

More qualitative research is needed to unpack the complexities of resuscitation decisions for preterm infants

We read with interest Sriraman et al's (2023)1 response to our article ‘Resuscitation thresholds were seen as guidance by Belgian neonatologists and other relevant factors were included in decision-making’.2 We appreciate that other institutions use…

Tags: 2023, Acta Paediatrica, International Journal of Paediatrics, Cavolo A, Gastmans C, Gestational Age, Human, Infant, Infant Premature, Letter, Medical Decision Making, November List 2037, Palliative Therapy, pediatric patient, Practice Guideline, Prematurity, Qualitative Research, Resuscitation

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,…

A "good" death in a pediatric ICU: Is it possible?

Objectives: In the modern pediatric intensive care unit (PICU) physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available. Consequently, the…

Tags: 2003, April List 2024, Brain Death, Clinical pathway, Family, Garros D, Human, information retrieval, Jornal De Pediatria, Medical Decision Making, Medline, Newborn Intensive Care, Palliative Therapy, Review

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