Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms.

Context: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.

Objectives: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.

Importance: Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report.

Objective: To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.

Predictors of Depression and Anxiety in Family Members 3 Months After Child's Admission to a Pediatric ICU.

Objectives: Family members of children admitted to intensive care units (ICUs) suffer from severe stress, which sometimes results in long-term psychological problems. We aimed to identify associations between demographic and psychosocial variables at early stages of a child's admission to the ICU and depression and anxiety in family members at approximately 3 months after admission. We also explored predictive models for depression and anxiety at 3 months after admission.

Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference.

Context: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital.

Objectives: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care delivery.

Methods: Participants explored cases in one of four workshops focused on differences based on race/ethnicity, economic disparity, religion/spirituality, or family values.

Nurses' Reflections on Benefits and Challenges of Implementing Family-Centered Care in Pediatric Intensive Care Units.

Background: Family-centered care is a proposed way of supporting family involvement with a child's care and decreasing distress associated with a child's critical illness by improving communication, helping manage stress and coping, and decreasing conflicts. Nurses are critical to successful implementation of family-centered care.

Objectives: To describe nurses' perceptions of the benefits and challenges of providing family-centered care in pediatric intensive care units.

When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

Background: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting.

Objective: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants.

Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care.

Background: Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child's best interest and when there is a lack of clarity about how best to also consider the interests of the family.

Objective: To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments.

The Family Communication Study: A randomized trial of prospective pediatric palliative care consultation, study methodology and perceptions of participation burden.

Background: To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the trigger for early palliative care involvement.

Methods: Cluster-randomized trial with children as the unit of randomization.

Integration of palliative care in the context of rapid response: a report from the Improving Palliative Care in the ICU advisory board.

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event.

Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board.

Objective: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU.

Data Sources: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms "palliative care" or "end of life care" or "supportive care" and "pediatric intensive care." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website.

Palliative care in the ICU: relief of pain, dyspnea, and thirst--a report from the IPAL-ICU Advisory Board.

Purpose: Pain, dyspnea, and thirst are three of the most prevalent, intense, and distressing symptoms of intensive care unit (ICU) patients. In this report, the interdisciplinary Advisory Board of the Improving Palliative Care in the ICU (IPAL-ICU) Project brings together expertise in both critical care and palliative care along with current information to address challenges in assessment and management.

Methods: We conducted a comprehensive review of literature focusing on intensive care and palliative care research related to palliation of pain, dyspnea, and thirst.

Choosing and using screening criteria for palliative care consultation in the ICU: a report from the Improving Palliative Care in the ICU (IPAL-ICU) Advisory Board.

Objective: To review the use of screening criteria (also known as "triggers") as a mechanism for engaging palliative care consultants to assist with care of critically ill patients and their families in the ICU.

Data Sources: We searched the MEDLINE database from inception to December 2012 for all English-language articles using the terms "trigger," "screen," "referral," "tool," "triage," "case-finding," "assessment," "checklist," "proactive," or "consultation," together with "intensive care" or "critical care" and "palliative care," "supportive care," "end-of-life care," or "ethics." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website.

Examining palliative care team involvement in automatic consultations for children on extracorporeal life support in the pediatric intensive care unit.

Background: Extracorporeal life support (ECLS) is an advanced form of life-sustaining therapy that creates stressful dilemmas for families. In May 2009, Seattle Children's Hospital (SCH) implemented a policy to involve the Pediatric Advanced Care Team (PACT) in all ECLS cases through automatic referral.

Objective: Our aim was to describe PACT involvement in the context of automatic consultations for ECLS patients and their family members.

Palliative care in the pediatric ICU: challenges and opportunities for family-centered practice.

The culture of pediatric intensive care units (PICUs) is focused on curative or life-prolonging treatments for seriously ill children. We present empirically-based approaches to family-centered palliative care that can be applied in PICUs. Palliative care in these settings is framed by larger issues related to the context of care in PICUs, the stressors experienced by families, and challenges to palliative care philosophy within this environment.

Physician reimbursement for critical care services integrating palliative care for patients who are critically ill.

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care.

Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care.

Objective: Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit.

Data Sources: We searched the MEDLINE database from inception to May 2011 for all English language articles using the term "surgical palliative care" or the terms "surgical critical care," "surgical ICU," "surgeon," "trauma" or "transplant," and "palliative care" or "end-of- life care" and hand-searched our personal files for additional articles.

Pediatric palliative care patients: a prospective multicenter cohort study.

Objective: To describe demographic and clinical characteristics and outcomes of patients who received hospital-based pediatric palliative care (PPC) consultations.

Design, Setting, And Patients: Prospective observational cohort study of all patients served by 6 hospital-based PPC teams in the United States and Canada from January to March 2008.

Results: There were 515 new (35.

Botulinum toxin for spasticity in children with cerebral palsy: a comprehensive evaluation.

Background: Spasticity is a prevalent disabling clinical symptom for children with cerebral palsy. Treatment of spasticity with botulinum toxin in children with cerebral palsy was first reported in 1993. Botulinum toxin provides a focal, controlled muscle weakness with reduction in spasticity.

The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life.

Purpose: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness.

Technology-dependency among patients discharged from a children's hospital: a retrospective cohort study.

Background: Advances in medical technology may be increasing the population of children who are technology-dependent (TD). We assessed the proportion of children discharged from a children's hospital who are judged to be TD, and determined the most common devices and number of prescription medications at the time of discharge.

Methods: Chart review of 100 randomly selected patients from all services discharged from a children's hospital during the year 2000.

Lower extremity sensory function in children with cerebral palsy.

Objectives: (1) To determine the feasibility of qualitative sensory testing in the lower extremities (LE) of children with cerebral palsy (CP), especially spastic diplegia. (2) To determine if there is a detectable difference in qualitative LE sensory function in children with CP compared to typical children. (3) To determine if dorsal rhizotomy results in detectable changes in LE sensory function in children with spastic diplegia.