Browse Items · Pediatric Palliative Care Library

Policy statement--health equity and children's rights.

Many children in the United States fail to reach their full health and developmental potential. Disparities in their health and well-being result from the complex interplay of multiple social and environmental determinants that are not adequately…

Tags: 2010, Backlog, Child, Child Advocacy/economics/standards, Health Policy/economics, Healthcare Disparities/economics/standards, Humans, Journal Article, Medical/standards, Pediatrics, Pediatrics/standards, Societies, United States

What kind of randomized trials do we need?

2009

Tags: 2009, Backlog, Canadian Medical Association Journal, Humans, Journal Article, Randomized Controlled Trials as Topic, Research Design, Treweek S, United States, United States Food and Drug Administration, Zwarenstein M

A simple standardized method for VAS measurements in terminally ill patients

2005

Tags: 2005, Backlog, Gootjes JR, Humans, Jansen WJ, Journal Article, Journal of Palliative Medicine, Pain, Pain Measurement/standards, Perez RS, Quality Of Life, Terminally Ill/psychology, Tol-Verhagen CV, United States, Zuurmond WW

The use of pediatric advance directives: a tool for palliative care physicians.

Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled.…

Tags: 2008, Advance Care Planning/es [Ethics], Advance Care Planning/og [Organization & Administration], Backlog, Child, Child Advocacy, Child Advocacy/es [Ethics], Child Advocacy/lj [Legislation & Jurisprudence], Child Advocacy/px [Psychology], Decision Making, DNAR, Humans, Journal Article, Minors/lj [legislation & Jurisprudence], Minors/px [Psychology], Palliative Care/es [Ethics], Palliative Care/og [Organization & Administration], Palliative Care/px [psychology], Parental Consent/es [Ethics], Parental Consent/lj [Legislation & Jurisprudence], Parental Consent/px [Psychology], Patient Participation/lj [Legislation & Jurisprudence], Patient Participation/px [Psychology], Pediatrics/es [Ethics], Pediatrics/og [Organization & Administration], Personal Autonomy, Right to Die/es [Ethics], Right to Die/lj [Legislation & Jurisprudence], The American Journal of Hospice & Palliative Care, United States, Zinner SE

Factors important to patients' quality of life at the end of life

BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for…

Ethical problems in pediatric critical care: consent

Informed consent constitutes one of the important considerations included in the myriad ethical dilemmas in the pediatric intensive care unit. Traditionally, the law has viewed children as incompetent to make medical decisions, and society has…

The impact of a palliative care team on residents' experiences and comfort levels with pediatric palliative care

BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…

Pediatric organ donation and transplantation

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…

Comparing parent loss with sibling loss

The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's…

Provision Of Services In Perinatal Palliative Care: A Multicenter Survey In The United States.

BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…

Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.

Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary…

Terminal nutrition: framing the debate for the withdrawal of nutritional support in terminally ill patients

Nutrition and hydration have long been considered to be life-sustaining therapies that are associated with comfort and relief of suffering. This belief is largely based on our own experiences with the sensations of thirst and hunger, which have led…

Tags: 2000, Backlog, Death and Euthanasia, Enteral Nutrition/adverse effects, Ethics, Fasting/physiology/psychology, Humans, Journal Article, Medical, Medical Futility, Parenteral Nutrition/adverse effects, Terminal Care/methods/standards, The American Journal Of Medicine, United States, Winter SM

Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States

OBJECTIVE: To evaluate the use of healthcare resources during the last six months of life among patients of US hospitals with strong reputations for high quality care in managing chronic illness. DESIGN: Retrospective cohort study based on claims…

ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease). Developed in Collaboration With the American Society of Echocardiography, Heart Rhythm Society, International Society for Adult Congenital Heart Disease, Society for Cardiovascular Angiography and Interventions, and Society of Thoracic Surgeons

2008

Tags: 2008, Adams CD, Adolescent Transitions, Adult, American College of Cardiology, American Heart Association, American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines on the Management of Adults With Congenital Heart Disease), American Society of Echocardiography, Anderson JL, Antman EM, Backlog, Bashore TM, Buller CE, Cardiology/methods/standards, Child JS, Congenital/therapy, Connolly HM, Creager MA, Dearani JA, del Nido P, Ettinger SM, Fasules JW, Graham TP, Halperin JL, Heart Defects, Heart Diseases/congenital/therapy, Heart Rhythm Society, Hijazi ZM, Humans, Hunt SA, International Society for Adult Congenital Heart Disease, Interventions, Jacobs AK, Journal Article, Journal of the American College of Cardiology, King ME, Krumholz HM, Kushner FG, Landzberg MJ, Lytle BW, Miner PD, Nishimura RA, Page RL, Radford MJ, Riegel B, Smith SC, Society for Cardiovascular Angiography, Society of Thoracic Surgeons, Tarkington LG, United States, Walsh EP, Warnes CA, Webb GD, Williams RG, Yancy CW

Childhood and adolescent cancer statistics, 2014

In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…

Communication and advanced care planning in palliative and end-of-life care.

Communication about and planning for the end of life has evolved with medical and technological changes. This article presents a focused literature review of Advance Directives (ADs), Advanced Care Planning (ACP), and communication in palliative and…

Tags: 2012, Advance Care Planning, Advance Directives, Backlog, Clinical Nursing Research, Communication, DNAR, Humans, Journal Article, Meeker MA, Nursing Outlook, Palliative Care, Terminal Care, United States, Waldrop DP

Final transitions: family caregiving at the end of life

BACKGROUND: This study aimed to understand how caregivers make the transition to end-stage caregiving and to illuminate its unique aspects using a stress process model. METHODS: Qualitative in-depth interviews were conducted with 74 caregivers of a…

Variation in Institutional Review processes for a multisite observational study

BACKGROUND: The Veterans Administration is an ideal setting for multisite studies; however, individual VA Institutional Review Board (IRB) approval is necessary. This study examines the burden of multisite IRB approval on a Health Services Research…

Bringing Home To The Hospital: Development Of The Reflection Room And Provider Perspectives

Background: Alternative locations for children near end of life (EOL) are lacking in the United States with deaths largely occurring within intensive care units (ICUs). The reflection room (RR) was implemented as a relevant space for providing this…

Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands.

OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…

The retreat from advanced care planning

Tags: 2012, Advance Care Planning/economics/trends, Advance Directives, Backlog, Centers for Medicare and Medicaid Services (U.S.), Decision Making, Humans, Insurance Coverage/legislation & jurisprudence, JAMA, Journal Article, Journal of Palliative Medicine Briefings, Medicare/economics, Patient Protection and Affordable Care Act, Patient-centered Care, Physician-patient Relations, Terminal Care/economics/standards, Tinetti ME, United States

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

The multiple meanings of long-term gastrostomy in children with severe disability

Although the physiological implications of long-term gastrostomy for children with severe disability are well documented in the nursing literature, little is known about the psychosocial effect of this technological intervention. This study documents…

Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study

Instrumental variable analysis (IVA) has been widely used in many fields, including health care, to determine the comparative effectiveness of a treatment, intervention, or policy. However, its application in pediatric end-of-life care research has…

Tags: 2023, Child, Cozad MJ, Death, Hinds PS, Hospice Care, Humans, July List 2023, Keim-Malpass J, Lindley LC, Mack JW, Palliative Care, Patient Protection and Affordable Care Act, Svynarenko R, Terminal Care, United States, Western Journal of Nursing Research

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia

Purpose: Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act)…

Tags: 2023, Aged, Appalachian Region, August List 2048, Child, Costs And Cost Analysis, Cozad MJ, Hospice Care, Hospices, Humans, Keim-Malpass J, Lindley LC, Medicare, Patient Protection and Affordable Care Act, Svynarenko R, The Journal of Rural Health, United States

End-of-life And Bereavement Care In Pediatric Intensive Care Units

Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions…

Palliative and hospice care needed for children with life-threatening conditions

2000

Tags: 2000, Backlog, Child, Hospice Care/standards, Human, Journal Article, Journal Of The American Medical Association, Palliative Care/standards, Pediatrics/standards, Practice Guidelines, Stephenson J, United States

Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions

OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex…

Measuring end-of-life care outcomes prospectively

This paper discusses the state of the science in prospective measurement in end-of-life research and identifies particular areas for focused attention. Topics include defining the scope of inquiry, evaluating experiences of patients too ill to…

Tags: 2005, Backlog, Data Collection/methods, Health Services Research/methods, Humans, Journal Article, Journal of Palliative Medicine, Outcome and Process Assessment (Health Care)/methods, Palliative Care/psychology/standards, Prospective Studies, Psychometrics/instrumentation/methods, Quality Of Life, Reproducibility of Results, Steinhauser KE, Terminal Care/psychology/standards, United States

Mortality in parents after the death of a child

The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was…

Learning that leads to action: impact and characteristics of a professional education approach to improve the care of critically ill children and their families

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…

Missing clinical information during primary care visits

CONTEXT: The coordinating function of primary care is information-intensive and may be impeded by missing clinical information. However, missing clinical information has not been explicitly investigated in the primary care setting. OBJECTIVE: To…

Tags: 2005, Araya-Guerra R, Backlog, Bublitz C, Communication, Cross-sectional Studies, Dickinson LM, Family Practice/organization & administration, Humans, JAMA, Journal Article, Medical Records, Pace WD, Parnes B, Primary Health Care/organization & administration, Smith PC, United States, Van Vorst R, Westfall JM

Half of older Americans seen in emergency department in last month of life; most admitted to hospital, and many die there

Emergency department use contributes to high end-of-life costs and is potentially burdensome for patients and family members. We examined emergency department use in the last months of life for patients age sixty-five or older who died while enrolled…

Pediatric clinical research networks: current status, common challenges, and potential solutions

OBJECTIVES: The goals were (1) to describe and to characterize pediatric clinical research networks (PCRNs) in the United States and Canada, (2) to identify PCRN strengths and weaknesses, (3) to evaluate the potential for collaboration among PCRNs,…

Tags: 2010, Backlog, Biomedical Research/organization & administration, Bocian AB, Cooperative Behavior, Harris DL, Humans, Journal Article, Medical, Pediatrics, Research Support as Topic, Slora EJ, Societies, United States, Wasserman RC

Task force 5: adults with congenital heart disease: access to care

Variability among institutional review boards' decisions within the context of a multicenter trial

BACKGROUND: Institutional review boards (IRBs) are given discretion to interpret and apply the federal regulations governing the protection of human subjects in research. OBJECTIVE: To determine the extent of the variability among different IRBs on…

Practice patterns in pediatric consultation-liaison psychiatry: a national survey

The purpose of this survey was to describe the current status of pediatric consultation-liaison (C-L) services in the United States. A total of 144 pediatric C-L programs were surveyed, with a response rate of 33%. Financial and staffing constraints…

End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making.

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions…

A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology

Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…

Trends in transition from pediatric to adult health care services for young adults with chronic conditions

PURPOSE: The rationale underlying this study was the need to move the transition health services model from a theoretical framework to an empirically-based investigation. Thus, it was necessary to identify programs for youth with chronic or disabling…

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