Leading a Palliative Care Team Through Times of Growth And Change.

High-functioning palliative care teams are essential to high-quality care for individuals with serious illness and their families. Such teams are flexible and adapt to change. However, recent high turnover and understaffing, compounded by a pandemic, challenge even the most resilient and adaptable teams.

Quality of Care in the Last Two Years of Life for Children With Complex Chronic Conditions.

Context: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL).

Objective: To examine hospital performance on EOL quality measures and to describe healthcare services during the last two years of life for children with CCCs who died in-hospital.

Methods: Retrospective automated electronic health record review of children with ≥1 CCC ICD-10 diagnosis code, who died inpatient between October 2020 and March 2023 at a single quaternary U.

Challenges in Pediatric Home-Based Hospice and Palliative Care: A Case Series.

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts.

Defining the Denominator for Measuring Quality of End-of-Life Care in Children with Cancer: Results of a Nominal Group Technique.

Objective: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care.

Study Design: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment.

Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality.

Study Design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team.

Polysymptomatology and Polypharmacy at End of Life in Patients with Duchenne Muscular Dystrophy.

Objective: To characterize symptom frequency and symptom-directed treatment approaches in patients who died with advanced Duchenne muscular dystrophy (DMD).

Study Design: This was a retrospective cohort study of patients in a multidisciplinary DMD program who died between January 1, 2013, and June 30, 2021. Inclusion criteria were patients who died with advanced DMD in the time period studied; exclusion criteria were low exposure to palliative care (<2 encounters).

The impact of organizational compassion in health care on clinicians: A scoping review.

Background: The unprecedented exodus of workers from the healthcare system is a patient safety crisis. Organizational compassion in health care is the proactive, systematic, and continuous identification, alleviation, and prevention of all sources of suffering.

Aims: This scoping review aimed to describe the evidence regarding the impact of organizational compassion on clinicians, identify gaps, and provide recommendations for future research.

Fetal outcomes and continuity in perinatal palliative care patients at a quaternary care pediatric hospital.

Objective: Perinatal palliative care (PPC) is the coordinated application of palliative care principles to the care of families, fetuses and newborns with suspected life-limiting conditions. This approach relies on continuity of care that spans pregnancy, birth and beyond. The goal of this retrospective cohort study was to evaluate outcomes and PPC continuity in infants born to families who received PPC at a quaternary care pediatric hospital, and to identify targets to improve care continuity.

Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality.

Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process.

Background And Objectives: Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).

Survey of Pediatric Palliative Care Quality Improvement Training, Activities, and Barriers.

Context: Children with serious illness deserve high-quality pediatric palliative care (PPC). With expansion of PPC provision, it is important to understand the quality improvement (QI) activities of PPC clinicians and programs.

Objectives: To describe the 1) background, education/training, and activities in QI and 2) perceived barriers to QI efforts among PPC clinicians and programs nationally.

Managing Pain and Discomfort in Children with Cancer.

Purpose Of Review: Approximately 15,600 children are diagnosed with cancer annually. Many of these children have cancer-related pain that improves with cancer treatment, but some develop intractable pain from cancer progression or sequelae from treatment modalities. The purpose of this paper is to provide a critical evaluation of the literature relevant to pain management in children with cancer.

Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers.

Introduction/aims: Most patients with Duchenne muscular dystrophy (DMD) in the US are diagnosed at about age 5 years. Some adolescents and young adults (AYAs) with DMD are now living into their fourth decade, yet AYAs and caregivers are frequently unprepared to address changes in goals of care due to disease progression. The hypothesis-generating research question was how AYAs with DMD and their caregivers understand the relationship between physical changes and the need to change goals of care.

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children.

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs.

The Pediatric Palliative Improvement Network: A national Healthcare Learning Collaborative.

Context And Objectives: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN).

Methods: The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined.

Pediatric Palliative Care Programs in US Hospitals.

Background And Objectives: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country.

Methods: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing.

Specialty Palliative Care in COVID-19: Early Experiences from the Palliative Care Quality Collaborative.

The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry.

Safety in Pediatric Hospice and Palliative Care: A Qualitative Study.

Introduction: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified definition of safe care. This qualitative study sought to explore caregiver views regarding safe care in pediatric HPC.

Compassionate Design: Utilizing Design Thinking to Preserve Sanctity, Dignity, and Personhood When Children Die.

Introduction: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children with culturally competent, family-centered care when a child dies. The goal of this project was to profoundly understand family and staff experiences surrounding pediatric death in our institution to identify unique opportunities to design improved, novel delivery models of pediatric end of life (EOL) care.

Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study.

Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016.

Study Design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics.

"There's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care.

To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting.