Browse Items · Pediatric Palliative Care Library

Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

Medical and end-of-life decision making in adolescents' pre-heart transplant: A descriptive pilot study

BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…

Can the Ethical Best Practice of Shared Decision-Making lead to Moral Distress?

When healthcare professionals feel constrained from acting in a patient's best interests, moral distress ensues. The resulting negative sequelae of burnout, poor retention rates, and ultimately poor patient care are well recognized across healthcare…

Tags: 2018, April 2017 List, Attitude Of Health Personnel, Burnout Professional, Clinical Ethics, Decision Making/ethics, Decision-making, End-Of-Life Issues, Gillam L, Humans, Journal of bioethical inquiry, Morals, Neonatology, Patient Care/ethics, Patient Participation, Physicians/ethics/psychology, Prentice TM, Professional-professional relationship, Stress Psychological

Decision making in pediatric oncology: Views of parents and physicians in two European countries

BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative…

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…

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and…

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…

Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial

CONTEXT: There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer. OBJECTIVE: To determine the effect of a nursing-led intervention on quality of life,…

Transition care for young people with chronic illness

Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…

Consultation with children in hospital: children, parents' and nurses' perspectives

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

The reactions to research participation questionnaires for children and for parents (RRPQ-C and RRPQ-P)

Systematic assessment of the effect of clinical research studies on child and parent participants has been limited. Such assessment could provide an empirical basis for the ethical conduct of research, assisting investigators and institutional review…

A descriptive study of children dying in the pediatric intensive care unit after withdrawal of life-sustaining treatment

OBJECTIVE: To examine physiologic and therapeutic changes following withdrawal of life-sustaining treatment in children. DESIGN: Retrospective chart review. SETTING: University-affiliated tertiary care pediatric hospital. PATIENTS: All patients who…

Forgoing life-sustaining treatments in children: a comparison between Northern and Southern European pediatric intensive care units

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine…

Individualizing treatment decisions. The likelihood of being helped or harmed

Clinical decision making cannot rely on evidence alone. Although significant advances have occurred in the development of high-quality evidence, similar efforts must be made to develop and evaluate tools that can be used at the bedside to…

Tags: 2002, Anticoagulants/therapeutic use, Backlog, Decision Making, Evaluation And The Health Professions, Evidence-based Medicine, Humans, Journal Article, Patient Participation, Pilot Projects, Risk Assessment, Straus SE, Stroke/prevention & control, Warfarin/therapeutic use

Discussing do-not-resuscitate orders in the hospital setting: Part 1

2002

Tags: 2002, Backlog, Communication, Decision Making, Hospitalization, Human, Journal Article, Journal of Palliative Medicine, Patient Education, Patient Participation, Resuscitation Orders, Terminal Care, von Gunten CF, Weissman DE

Complexities in prognostication in advanced cancer: "to help them live their lives the way they want to"

Predicting survival and disclosing the prediction to patients with advanced disease, particularly cancer, is among the most difficult tasks that physicians face. With the de-emphasis of prognosis in favor of diagnosis and therapeutics in the medical…

Effects of framing and level of probability on patients' preferences for cancer chemotherapy

Although most clinicians agree that patients should be informed about treatment alternatives, little is known about the way patients perceive probabilistic information about treatment outcomes and how it influences the choices they make. The purpose…

On the elicitation of preferences for alternative therapies

We investigated how variations in the way information is presented to patients influence their choices between alternative therapies. Data were presented summarizing the results of surgery and radiation therapy for lung cancer to 238 ambulatory…

Between two worlds: bridging the cultures of child health and adult medicine

Physician-older patient communication at the end of life.

Communication with dying patients and their families requires special skills to assist them in this extremely stressful period. This article begins with a case that illustrates many of the challenges of communicating with the dying. It then reviews…

Care of terminally ill children with cancer

Reframing US Maternity Care: Lessons Learned From End-of-Life Care

Consistency in end of life care

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

Tags: 2016, Adolescent, Allen D, August 2017 List, Child, Child Preschool, Communication, Decision Making, Hospice And Palliative Care Nursing/ Standards, Humans, Infant, Nurse-patient Relations, Nursing Children and Young People, Patient Participation, Pediatric Nursing/ Standards, Practice Guidelines As Topic

"it Scares Me To Know That We Might Not Have Been There!": A Qualitative Study Into The Experiences Of Parents Of Seriously Ill Children Participating In Ethical Case Discussions

BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have…

Tags: 2015, Adult, BMC Med Ethics, Child, Communication, Critical Illness, Decision Making/ethics, Ethics Committees Clinical, Ethics Medical, Forde R, Humans, Linja T, May 2017 List, Norway, Only Child, Parents, Patient Participation, Patient Satisfaction, Qualitative Research

End Of Life Care For Infants, Children And Young People With Life Limiting Conditions: Summary Of Nice Guidance

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…

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