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.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

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. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. RESULTS: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. CONCLUSIONS: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.

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). Demographic, symptom, and end-of-life data, as well as medications used for symptom management, were abstracted from the electronic medical record. RESULTS: In total, 15 patients were eligible for analysis. The median age of death was 23 years (range 15-30 years). One (6.7%) experienced a full code at death, 8 (53.3%) had do-not-resuscitate orders, and 4 (26.7%) had limited do-not-resuscitate orders. Mean palliative care exposure was 1280 days. All 15 (100%) had pain and dyspnea; 14 (93.3%) anorexia, constipation, and sleep difficulty; 13 (86.7%) wounds; and 12 (80%) anxiety and nausea/vomiting. Multiple medications and drug classes were used to target symptoms. CONCLUSIONS: We found significant polysymptomatology and polypharmacy in patients who died with advanced DMD. Clinicians who care for patients with advanced DMD should clarify goals of care and document advance care planning. Given the complexity of multisystem disease progression, palliative care should provide subspecialty pain management and assist with psychosocial burdens.

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. METHODS: A comprehensive librarian-assisted database search was conducted. Databases searched were PubMed, SCOPUS, EMBASE, Web of Science, PsychInfo, and Business Source Complete. Combinations of search terms regarding health care, compassion, organizational compassion, and workplace suffering were used. The search strategy was limited to English language articles and those published between 2000 and 2021. RESULTS: Database search yielded 781 articles. After removing duplicates, 468 were screened by title and abstract, and 313 were excluded. One-hundred and fifty-five underwent full-text screening, and 137 were removed, leaving 18 eligible articles, two of which were set in the United States. Ten articles evaluated barriers or facilitators to organizational compassion, four evaluated elements of compassionate leadership, and four evaluated the Schwartz Center Rounds intervention. Several described the need to create systems that are compassionate to clinicians. Lack of time, support staff, and resources impeded the delivery of such interventions. LINKING EVIDENCE TO ACTION: Little research has been done to understand and evaluate the impact of compassion on US clinicians. Given the workforce crisis in American health care and the potential positive impact of increasing compassion for clinicians, there is an urgent need for researchers and healthcare administrators to fill this gap.

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. METHODS: Grounded theory design using data from N = 30 semi-structured interviews (n = 13 AYA; n = 17 caregivers) from two sites. RESULTS: AYAs with DMD frequently defer considering and/or reconsidering goals of care based on (1) delays in diagnosis; (2) gradual, rather than episodic, disease progression; and (3) orientation to living in the present. Desire for autonomy motivates advance care planning and end-of-life treatment preferences for some. DISCUSSION: Routine inquiry into AYA and caregiver goals for living may normalize goals of care conversations, maximizing patients' ability to process information, reflect on preferences, and articulate wishes. Discussing present-day goals and abilities may invite conversation about future preferences. Framing conversations in terms of AYA autonomy may increase motivation to engage in such discussions.

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. We intend to emphasize important and up-to-date findings in pharmacology, interventional pain management, and complementary and alternative medicine. RECENT FINDINGS: Alternative medications and routes of administration, complementary and alternative medicine techniques, and interventional pain procedures offer possible routes for a multi-pronged pediatric cancer pain management plan, although high-level data is often lacking. To improve pediatric cancer pain management, a multifaceted approach embracing the biopsychosocial model of pain is recommended, incorporating evidence-based pharmacology, complementary and alternative medicine techniques, and if needed, interventional pain procedures.

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. RESULTS: There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. CONCLUSIONS: Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses.

Hospice Care for Children With Cancer: Where Do These Children Die?

Hospice is an important provider of end of life care; many children who die of cancer enroll in hospice programs. How frequently such children remain in hospice to die at home, or disenroll from hospice and die in the hospital, has not been described. A child's location of death has important implications for quality of life and parental adaptation. This represents a subanalysis of a retrospective study of 202 consecutive oncology patients who died at a single center between January 1, 2006 and December 31, 2010. Of 95 children who enrolled in hospice, 82 had known location of death. Sixty (73%) died at home or an inpatient hospice unit, 15 (18%) died in the oncology unit, 5 (6%) died in the intensive care unit, and 2 (2%) died in the emergency department. The median length of hospice services was 41 days, twice the national median of 21 days reported in adults. One quarter of children disenrolled from hospice care, ultimately dying in an acute care setting. Further studies are warranted to explore the hospice experience in children, and to address modifiable factors that may impact a family's choice to withdraw from hospice care.

Challenges in Home-Based Pediatric 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 and 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.

Racial and ethnic differences in hospice enrollment among children with cancer.

BACKGROUND: Hospice is an important provider of end of life care. Adult minorities are less likely to enroll on hospice; little is known regarding the prevalence of pediatric hospice use or the characteristics of its users. Our primary objective was to determine whether race/ethnicity was associated with hospice enrollment in children with cancer. We hypothesized that minority (Latino) race/ethnicity is negatively associated with hospice enrollment in children with cancer. PROCEDURE: In this single-center retrospective cohort study, inclusion criteria were patients who died of cancer or stem cell transplant between January 1, 2006 and December 31, 2010. The primary outcome variable was hospice enrollment and primary predictor was race/ethnicity. RESULTS: Of the 202 patients initially identified, 114 met inclusion criteria, of whom 95 were enrolled on hospice. Patient race/ethnicity was significantly associated with hospice enrollment (P = 0.02), the association remained significant (P = 0.024) after controlling for payor status (P = 0.995), patient diagnosis (P = 0.007), or religion (P = 0.921). Latinos enrolled on hospice significantly more often than patients of other races. Despite initial enrollment on hospice however, 34% of Latinos and 50% of non-Latinos had withdrawn from hospice at the time of death (P = 0.10). Race/ethnicity was not significantly associated with dying on hospice. CONCLUSIONS: These results indicate that race/ethnicity and diagnosis are likely to play a role in hospice enrollment during childhood. A striking number of patients of all race/ethnicities left hospice prior to death. More studies describing the impact of culture on end of life decision-making and the hospice experience in childhood are warranted.

Accidental overdose of intrathecal cytarabine in children.

OBJECTIVE: To report 2 cases of intrathecal cytarabine overdose in children with cancer, neither of whom underwent cerebrospinal fluid (CSF) exchange per current recommendations or developed apparent toxicity related to the event. CASE SUMMARY: A 17-year-old female with newly diagnosed acute myeloid leukemia received 177 mg of intrathecal cytarabine rather than the appropriate dose of 70 mg. She was monitored closely with no apparent toxicity from the event. A 4-year-old boy with newly diagnosed precursor B-cell acute lymphoblastic leukemia received 175 mg of intrathecal cytarabine rather than the appropriate dose of 70 mg. CSF was immediately withdrawn and intrathecal hydrocortisone was instilled for possible antiinflammatory effect. He developed no apparent toxicity from the event. DISCUSSION: Cytarabine is an important chemotherapeutic agent in the treatment of leukemia. One case report of intrathecal cytarabine overdose was identified in the literature, which recommended CSF exchange as management. Neither child in our report underwent CSF exchange or developed apparent toxicity related to the event. Institutional changes were made in both cases to prevent similar events. CONCLUSIONS: These cases demonstrate that measures such as CSF exchange are not uniformly required for cytarabine overdose.

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. STUDY DESIGN: PPC patients seen between July 2018 and June 2021 were identified via local PPC registry. Demographic, outcome, and continuity data were gathered from the electronic medical record. Descriptive statistics were used to calculate the rate of postnatal palliative consult and infant mortality rates. RESULTS: 181 mother-infant dyads were identified as having a PPC consultation and had available data following birth. Overall perinatal mortality was 65%; 59.6% of all liveborn infants died prior to discharge. Only 47.6 % of liveborn infants, who did not die in the perinatal period, received postnatal palliative care. Location of birth (primary versus non-network hospital) was significantly associated with postnatal PPC consult rate (p = 0.007). CONCLUSION: Continuation of palliative care after birth in families who received perinatal palliative care is inconsistently achieved. Creating reliable systems for PPC continuity will depend on location of care.

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. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.

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. METHODS: An electronic survey was sent to members of the Pediatric Palliative Improvement Network, the National Coalition for Hospice and Palliative Care Pediatric Task Force, and the PPC Research Network as part of a study to develop hospital-based, primary PPC quality measures. Surveys queried participants' background, education/training, individual/team QI efforts, and barriers to QI work. Results were summarized descriptively. RESULTS: Of the 95 respondents; most were female (84 [88%]) and/or white (84 [88%]). The majority (57 [54%]) were physicians, although participants represented a variety of clinical disciplines, researchers (10 [9%]), and administrators (6 [6%]). One-quarter (25 [26%]) reported having <10 hours total of training in QI, yet two-third (63 [66%]) participated in QI work. About one-third (35 [37%]) reported that their program had no dedicated staff for QI activities, yet over half (56 [59%]) of participants reported that their team participated in QI work. Participants reported that lack of personnel/time, standardized measures/tools, education/training/mentoring in QI, systems to promote QI work, and financing/grants were barriers. CONCLUSION: Over half of PPC participants in this study reported involvement in QI activities despite limited staffing/time, QI training, and standardized measures, which presents challenges to this work.

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). METHODS: We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (>200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM's importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement. RESULTS: Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, <2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation). CONCLUSIONS: This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.

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. RESULTS: PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods "refreshers", share local works in progress, and provide infrastructure for future collaborative projects. CONCLUSIONS: PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future.

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. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.

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

Background: 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. Objectives: 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. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after (p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.

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. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.