Alignment of Palliative Care Service Structure and Standards of Care for Adolescents and Young Adults with Cancer: An International Survey of Clinical Practice.

Access to timely, age-appropriate palliative care services and end-of-life communication are two standards of care for adolescents and young adults (AYAs) living with cancer where cure is uncertain or unlikely. Health professionals' capacity to facilitate these standards is critical. This study aimed to understand AYA oncology health professionals' experienced practices in, and barriers to, delivering these standards of care across palliative care and end-of-life communication in Australia, New Zealand, and the United Kingdom (UK).

An Ethics Consult Documentation Simplification Project: Summation of Participatory Processes, User Perceptions, and Subsequent Use Patterns.

Healthcare ethics consultants in the Veterans Health Administration (VHA) document consults in an enterprise-wide web-based database entitled IEWeb, serving as a system of record for healthcare ethics documentation at 1300 VA facilities. The need arose to evolve the database from an ethics process training resource into a more streamlined documentation repository that captures essential consult elements. A VHA National Center for Ethics in Health Care (NCEHC) Improvement Team convened for three tasks: (1) Specify and prioritize IEWeb changes (occurred via six focus groups composed of "new user" and "super user" cohorts with analysis of existing documentation patterns); (2) Pilot the changes regionally (via regional communication, training, and reviews of pre-post use patterns); and (3) Measure the impact of national change implementation on user perspectives (via pre-and post-change implementation polls).

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy.

Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Describe the extent to which PPC team members serve in pediatric health care ethics (PHCE) consultancy roles and to describe their experiences interacting with pediatric ethic consultant services. Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States.

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer.

Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical conversations determine values/preferences that guide shared decision-making and goals of treatment, including end-of-life care when cancer progresses. Initiating PCEOL conversations is challenging for clinicians.

Narrative medicine interventions for oncology clinicians: a systematic review.

Purpose: As narrative medicine interventions are integrated increasingly into medical practice, growing evidence indicates benefits for healthcare professionals. Presently, the prevalence and impact of narrative medicine interventions in the field of oncology remain unknown. This systematic review synthesizes published data on narrative medicine interventions in oncology and reports current knowledge on feasibility, acceptability, and impact on cancer care professionals.

Building clinician-parent partnerships to improve care for chronically critically Ill children: A pilot project.

Objective: Multicenter pilot to assess feasibility, acceptability, and educational value of videos for families and clinicians regarding unique inpatient challenges of pediatric chronic critical illness.

Methods: Videos were developed for 3 hospitalization timepoints: 1) chronic critical illness diagnosis, 2) transfers, 3) discharge. Parents of hospitalized children, and interdisciplinary clinicians, were recruited to watch videos and complete surveys.

How young adults with sickle cell disease define "being a good patient" in the adult healthcare system.

Background: Young adulthood brings new challenges for managing sickle cell disease. There are fewer adult specialists, sickle cell disease morbidities accumulate, and mortality increases. Developmental changes in roles and responsibilities also affect management.

Supporting the Family After the Death of a Child or Adolescent.

Whether death occurs in the context of a chronic illness or as the sudden loss of a previously healthy infant, child, or adolescent, the death of a child is a highly stressful and traumatic event. Psychosocial support for families after the death of a child embodies core medical values of professional fidelity, compassion, respect for human dignity, and promotion of the best interests of a grieving family. The pediatrician has an important role in supporting the family unit after the death of a child through a family-centered, culturally humble, trauma-informed approach.

Agreement and disagreement between child-caregiver symptom and function reports in pediatric oncology.

Background/objective: The use of patient-reported outcomes (PRO) is increasing in pediatric clinical practice and research, including in clinical trials. Treatment teams are now able to discern differences in symptom and function reports between children with cancer and their family caregivers. Few studies, however, have quantified such differences.

Understanding Adult Hospices Caring for Children in California, 2018-2021.

In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021.

Adherence to the AAP's Institutional Ethics Committee Policy Recommendations.

Objectives: In 2019, the American Academy of Pediatrics (AAP) outlined 8 operational recommendations for pediatric institutional ethics committees (IECs). The study purpose was to quantify the extent to which pediatric IECs adhere to the AAP IEC Policy Statement recommendations.

Methods: A convenience sample of ethics points of contact from Children's Hospital Association membership were invited to complete an electronic survey on their ethics programs and practices in spring 2022.

State of the Service: Pediatric Palliative and Hospice Community-Based Service Coverage in the United States.

The pediatric literature describes reliance on community-based organizations for home-based palliative and hospice care for children. To quantify and describe the inclusion of children in services, staffing, and care scope offered by community-based hospice organizations in the United States. This study utilized an online survey distributed to organizational members of the National Hospice and Palliative Care Organization (NHPCO) in the United States.

Exploring the impact of pediatric short bowel syndrome on parent well-being using a disease-specific pilot survey.

Background: Children with short bowel syndrome (SBS) have complex care needs, most of which are met in the home by family caregivers who may experience a range of stressors unique to this experience. Prior research suggests that parents of children with SBS have poorer health-related quality of life than peers parenting children without health needs, but the mechanisms shaping parent outcomes are understudied.

Methods: A pilot survey was developed using a community-driven research design to measure the impact of disease-specific items on parent-perceived well-being.

Requests for Directed Blood Donations.

This Ethics Rounds presents a request for directed blood donation. Two parents feel helpless in the setting of their daughter's new leukemia diagnosis and want to directly help their child by providing their own blood for a transfusion. They express hesitancy about trusting the safety of a stranger's blood.

Pediatric Ethics Consultation Services, Scope, and Staffing.

Background And Objectives: National standards and guidelines call for a mechanism to address ethical concerns and conflicts in children's hospitals. The roles, responsibilities, and reach of pediatric ethics consultation services (PECS) remain unmeasured. The purpose of this study is to quantify staffing, structure, function, scope, training, and funding of PECS.

Pediatric Ethics Consultation Services.

Background And Objective: Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS in children's hospitals and compared the practice environments of those with versus without PECS.

Method: The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care.

Demand and Supply: Association between Pediatric Ethics Consultation Volume and Protected Time for Ethics Work.

Background: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.

Methods: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains.

Results: 104 children's hospitals in 45 states plus Washington DC were included.

Providing "Compassionate Care" in the Neonatal Intensive Care Unit Through Infant and Family Needs-Based Care.

Objective: Provision of compassionate care to infants and their families in the neonatal intensive care unit (NICU) is a key component of competent critical care. Although recognized as an essential aspect of NICU care, compassionate care for infants and families in a NICU setting has been underexplored. This study defined and described compassionate care according to NICU staff.

Palliative Care Programs in Children's Hospitals.

Backgroung And Objectives: This study determined the prevalence of PPC programs in the United States and compared the environment of children's hospitals with and without PPC programs.

Methods: Analyses of the multicenter Children's Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains.

Results: Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states.