Mixed-method examination of factors associated with adolescent decision-making and involvement in care in the context of advanced cancer.

OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

Communication within families about advanced pediatric cancer: A qualitative study.

OBJECTIVES: This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage. METHODS: Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5-19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child's cancer as a family. RESULTS: Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more. SIGNIFICANCE OF RESULTS: Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child's developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

A quest for meaning: A qualitative exploration among children with advanced cancer and their parents.

OBJECTIVE: Meaning-making may assist individuals in adaptation to stressful life events, particularly bereavement. However, few studies have examined meaning-making among pediatric populations with advanced illness to understand how this process unfolds before the child's death. This study explores meaning-making pre-bereavement among children with advanced cancer and their parents. METHODS: As part of a larger study examining shared decision-making near the end of life, 24 children with advanced cancer and/or high-risk cancer, 26 mothers, and 11 fathers participated in individual, semi-structured interviews. Analyses focused on questions regarding meaning-making. Four coders analyzed the data via directed content analysis. RESULTS: Three major meaning-making themes emerged: (1) sense-making (i.e., unknown, no sense/meaning, religious/spiritual explanations, scientific explanations), (2) benefit-finding, and (3) purpose/legacy. Some stated they were unable to make sense of the diagnosis, because there was no reason, they were not there yet, or they were dealing with the situation and moving forward. Others reported finding meaning through spiritual and scientific explanations. Many identified benefits related to the child's illness, such as personal growth and stronger relationships. Some parents expressed their purpose in life was to live for their children, while others shared their child's legacy as a way to find meaning. CONCLUSIONS: Our findings highlight the struggle children and parents often face when attempting to make sense of the child's advanced or high-risk illness. Clinicians might consider if meaning-centered interventions designed for use in adults at the end of life and bereaved parents may be helpful for children with advanced or high-risk cancer and their parents.

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.

Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support.

Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.

Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU.

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

Screening Criteria Improve Access to Palliative Care in the PICU.

OBJECTIVES: To test the ability of palliative care screening criteria to improve access to palliative care services in the PICU and examine the association between palliative care team involvement and ICU and hospital length of stay. DESIGN: Prospective interventional quality improvement study. SETTING: PICU at a quaternary academic medical center. PATIENTS: All patients admitted to the PICU who met criteria for palliative care referral over a 9-month period. INTERVENTION: Consensus palliative care consultation criteria were created by pediatric critical care medicine and palliative care providers, and palliative care referral was encouraged for all PICU patients meeting criteria. MEASUREMENTS AND MAIN RESULTS: Palliative care referral rates increased significantly after screening criteria implementation. We identified 100 patients who were eligible for palliative care services, and referrals were made for 70 patients (70%). Patients were divided into three groups based on palliative care status: patients new to the palliative care team, patients with an existing palliative care relationship, and patients who did not have a palliative care referral. By the end of study, patients who had an existing relationship with the palliative care team were more likely to still be alive and to have limitations of medical interventions in place, whereas patients who did not have a palliative care referral were more likely to be deceased and to have died in the PICU. After correcting for other factors, including severity of illness, patients who were new to the palliative care team experienced greater delay in palliative care referral and had significantly longer PICU and hospital length of stay than those who were already known to the palliative care team. CONCLUSIONS: Palliative care screening criteria are effective tools for improving access to palliative care services in the PICU; however, widespread adoption may produce a significant increase in palliative care demand. The association between an existing palliative care relationship and reduction in resource utilization deserves further investigation as does the perceived benefit of palliative care involvement in the patient, family, and staff experience.

Characteristics of Critically Ill Infants at the End of Life in the Neonatal Intensive Care Unit.

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.

UBXN2A suppresses the Rictor-mTORC2 signaling pathway, an established tumorigenic pathway in human colorectal cancer.

The mTORC2 pathway plays a critical role in promoting tumor progression in human colorectal cancer (CRC). The regulatory mechanisms for this signaling pathway are only partially understood. We previously identified UBXN2A as a novel tumor suppressor protein in CRCs and hypothesized that UBXN2A suppresses the mTORC2 pathway, thereby inhibiting CRC growth and metastasis. We first used murine models to show that haploinsufficiency of UBXN2A significantly increases colon tumorigenesis. Induction of UBXN2A reduces AKT phosphorylation downstream of the mTORC2 pathway, which is essential for a plethora of cellular processes, including cell migration. Meanwhile, mTORC1 activities remain unchanged in the presence of UBXN2A. Mechanistic studies revealed that UBXN2A targets Rictor protein, a key component of the mTORC2 complex, for 26S proteasomal degradation. A set of genetic, pharmacological, and rescue experiments showed that UBXN2A regulates cell proliferation, apoptosis, migration, and colon cancer stem cells (CSCs) in CRC. CRC patients with a high level of UBXN2A have significantly better survival, and high-grade CRC tissues exhibit decreased UBXN2A protein expression. A high level of UBXN2A in patient-derived xenografts and tumor organoids decreases Rictor protein and suppresses the mTORC2 pathway. These findings provide new insights into the functions of an ubiquitin-like protein by inhibiting a dominant oncogenic pathway in CRC.

Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses.

Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values. The inclusion of PnPC in the multidisciplinary care of a family facing severe fetal neurologic diagnoses allows for skilled exploration of the values and experience that ultimately drive creation of goals of care. The parental experience of receiving a life-limiting fetal diagnosis pushes parents into an emotional journey, which typically follows a recognizable progression of stages. PnPC providers appreciate the significance of this experiential journey and the importance of parental movement toward readiness to simultaneously welcome and mourn their child. Through longitudinal supportive care, beginning early in the fetal diagnostic progress and continuing throughout pregnancy and into the newborn period, PnPC providers explore the uncharted parental experience alongside the family and support them in creating value-driven care plans for their child. They contribute greatly to the multidisciplinary fetal and neonatal care teams as the advocate for and promote insightful communication and assist in delivery and coordination of value-driven care.

Defining Persistent Total Parenteral Nutrition Use in Patients with Neurologic Impairment.

Background: Patients with neurologic impairment (NI) experience gastrointestinal symptoms as one of three common problems associated with NI, including occasional persistent total parenteral nutrition (TPN) use. Objective: To describe the incidence of persistent TPN use in patients with NI. Design: Retrospective chart review on patients 0-38 years old enrolled in the Complex Health Care Program from January 2011 to October 2015. Setting/Subjects: This study occurred in a United States pediatric tertiary care hospital. Two hundred and eight participants were included based on NI, utilizing a surgical feeding tube, and having encounters with a dietitian. Measurements: The primary outcome was incidence of persistent TPN use in patients with NI. Secondary outcomes included mortality rate, hospitalization frequency, time-to-TPN initiation, and describing symptoms preceding persistent TPN use. Results: Median number of admissions was 4 for 168 hospitalized patients (59% male, 58% White). One hundred twenty-five patients required admission for unplanned bowel rest with average length-of-stay of 7.3 days. Twenty-six patients required TPN initiation. Average time-to-TPN was two years since enrollment. Mortality rate was 14% (n = 28). TPN initiation (odds ratio [OR]: 3.99; 95% confidence interval [CI]: 1.16-13.8) was significantly associated with increased OR of mortality. Conclusions: Our study demonstrates a substantial population of patients with NI and surgical feeding tube are affected by persistent feeding intolerance. We propose that persistent TPN use may be a risk factor for mortality. Additional research is needed to delineate relationships between persistent TPN use, hospitalizations, and mortality.

Applications of Dexmedetomidine in Palliative and Hospice Care.

Although the use of dexmedetomidine is currently approved by the US Food and Drug Administration in the adult population for monitored anesthesia care and sedation during mechanical ventilation, clinical experience suggests the potential application of dexmedetomidine in the palliative care arena. The medication can provide sedation with lower risk of delirium, control or minimize the adverse effects of other medications, and augment analgesia from opioids. We conducted a computerized bibliographic search of the literature regarding dexmedetomidine use for the treatment of pain and provision of sedation during palliative and hospice care in adult and pediatric patients. The objective was to provide a general descriptive account of the physiologic effects of dexmedetomidine and review its potential applications in the field of palliative and hospice care in adult and pediatric patients. The sedative and analgesic effects of dexmedetomidine have been well studied in animal and human models. Published experience from both single case reports and small case series has demonstrated the potential therapeutic applications of dexmedetomidine in palliative and hospice care. In addition to intravenous administration, case reports have demonstrated its successful use by both the intranasal and subcutaneous routes. Although these experiences have suggested its safety and efficacy, larger series and additional clinical experience with prospective comparison to other agents are needed to further define its efficacy and role in palliative and hospice care.

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.

Guidance for Pediatric End-of-Life Care.

The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their families, establishing end-of-life care goals, anticipatory counseling about the dying process (expected signs or symptoms, code status, desired location of death), and engagement with palliative and hospice resources. This report also outlines postmortem tasks for the pediatric team, including staff debriefing and bereavement.

Racial Differences in Do-Not-Resuscitate Orders among Pediatric Surgical Patients in the United States.

Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U.S. pediatric surgical patients. Methods: We retrospectively evaluated the mortality of all children who underwent an inpatient surgery between 2012 and 2017 from the National Surgical Quality Improvement Program. We used log-binomial models to estimate the relative risk (RR) and 95% confidence interval (CI) of DNR use comparing white with African American (AA) children. To estimate the risk-adjusted difference in DNR orders, we controlled the analyses for age, prematurity status, emergent case status, American Society of Anesthesiologists class, year of operation, surgical specialty, and surgical complexity. Results: Between 2012 and 2017, a total of 276,917 children underwent inpatient surgery, of whom 0.8% (n = 1601) died within 30 days of operation. Of the 1601 mortality cases, we retained 1212 children who were of either AA (26.0%, n = 350) or white (63.9%, n = 862) race. Most children were neonates, had an American Society of Anesthesiologists class ≥4 (70.0%, n = 811), and developed one or more postoperative complications (68.7%, n = 833). Overall, AA children were more likely to be neonates at the time of surgery (42.0% vs. 40.3%, p < 0.001), to be premature (66.3% vs. 49.0%, p < 0.001), and develop one or more postoperative complications (73.7% vs. 66.7%, p = 0.017). White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09-8.56, p = 0.044). Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being "sicker" and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.

Sugammadex to Reverse Neuromuscular Blockade Prior to Withdrawal of Life Support.

In certain end-of-life scenarios, pharmacologic reversal of neuromuscular blockade may be indicated. However, given the depth of blockade frequently necessitated in the ICU setting, rapid reversal of neuromuscular blockade is generally not feasible with conventional reversal agents such as neostigmine that inhibit acetylcholinesterase. Sugammadex is a novel pharmacologic agent for the reversal of neuromuscular blockade that acts by directly encapsulating steroidal neuromuscular blocking agents and providing effective 1:1 binding of rocuronium or vecuronium. This unique mechanism of action is rapid and allows for complete reversal and recovery of neuromuscular function. We report the use of sugammadex to reverse neuromuscular blockade prior to compassionate extubation in three pediatric patients. Its clinical use in children is reviewed, potential applications in the palliative care arena discussed, and dosing algorithms presented.

Concerns of Parents With Children Receiving Home-Based Pediatric Palliative Care.

CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received. OBJECTIVES: The objective of this study was to explore the concerns of parents who have a child in home-based PPC. METHODS: Semistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis. RESULTS: Parents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible. CONCLUSION: Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.

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.

Lessons Learned: Identifying Items Felt To Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development.

Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.

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. METHODS: This is a secondary analysis of qualitative data from a multisite study utilizing semistructured interview data to evaluate parental perspectives of quality in pediatric home-based HPC programs across 3 different pediatric tertiary care hospitals. Eligible participants included parents and caregivers of children who were enrolled in a pediatric home-based hospice and palliative care program (HBHPC) from 2012 to 2016. The analysis was done using grounded theory methodology. RESULTS: Forty-three parents participated in 39 interviews across all 3 sites; 19 families were bereaved. Responses to the prompt regarding safe care produced 8 unique domains encompassing parental definitions of safe care in pediatric HPC. DISCUSSION: Parents of children in HPC programs describe "safe care" in novel ways, some of which echo Maslow's hierarchy of needs. The use of traditional hospital safety measures for patients receiving HPC could undermine the patient's goals or dignity, ultimately leading to harm to the patient. CONCLUDING SUMMARY: Patients' and families' unique goals and values must be considered when defining safety for children in this population. Future studies should continue to explore family perspectives of safety in the hospital and ambulatory settings and seek to identify measurable indicators in safety which are truly patient- and family-centered.