Pediatric Palliative Care Services Research Articles

Enhancing Quality of Life in Pediatric Palliative Care: Insights, Challenges, and Future Directions—A Systematic Review

Pediatric palliative care (PPC) programs are essential in encompassing not only the affected children but also their family system and the healthcare and educational professionals involved. Despite the field’s significance, there is a notable scarcity in current literature, which underscores the pressing need for further research into the attributes of PPC programs that effectively enhance the quality of life (QoL) for pediatric patients. This study particularly emphasizes the pivotal role of schools as key community resources within this framework, highlighting the crucial aspect of educational integration in PPC. Through a systematic review of relevant literature and applying stringent inclusion and exclusion criteria, we identified pertinent studies across various databases. Of these, 30 articles met our criteria and were subject to a thorough qualitative analysis. Our findings indicate that while PPC programs may vary in their methodologies, they consistently share certain core elements that significantly boost the QoL for pediatric patients. These include a holistic approach that addresses the physical, emotional, psychosocial, and spiritual facets of care; encourages the active involvement of the patient in decision-making processes; and ensures timely access to PPC services. Importantly, our analysis identified the critical role of educational settings in enhancing QoL, shedding light on the vital need for educational inclusion and the integration of schools into the broader spectrum of PPC services. The distinct individual perceptions of QoL and the varied international practices in PPC underscore the imperative to tailor successful strategies to specific local contexts, thereby fostering the global well-being of pediatric palliative care patients.

Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital.

The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records of PPC clinic during the years 2001 to 2021 and the IMD outpatients. We established a parallel with the world scientific literature concerning the epidemiology of PPC and IMD. Among outpatients, 14% were diagnosed with IMD, which were referred to the PPC service earlier compared to Non-IMD cases. The Group 3 (complex molecules) was the most frequent (64.7%), following by Group 1 representing by small molecules (21.6%), the latter having a lower median age at diagnosis when compared to the former (0.7 vs. 5.2 years, p = 0.001). The sphingolipidoses were the pathologies most frequent in our cohort, in line with what was observed in the literature. There were no differences between IMD groups in terms of diagnosis and PPC referral age, however in Non-IMD conditions, the age of diagnosis were earlier than IMD. Nevertheless, IMD group showed lower age of referral to PPC. The IMD comprises large fraction of outpatients in the PPC setting, thus further studies are needed in this field.

The specialized pediatric palliative care service in Italy: how is it working? Results of the nationwide PalliPed study

BackgroundAccurate estimation of the specialized pediatric palliative care (PPC) burden and the definition of the extent and quality of PPC service in Italy represent urgent needs to enable the proper allocation of PPC resources and the definition of prevention and educational plans. The PalliPed project aimed to provide the first comprehensive assessment of the characteristics of Italian patients requiring PPC, the quality and extent of regional PPC networks/facilities, and the number of dedicated resources. In this paper, we present the results of the second part of the project, regarding the implementation and quality of PPC services in Italy.MethodsThe PalliPed study had an observational cross-sectional design. All Italian specialized PPC centers/facilities were invited to participate in the project and complete a survey on the characteristics of PPC centers/facilities in different care settings, reporting data as of 24 October 2022. Data were collected online.Results19 PPC specialized centers/facilities from 12 Italian regions and two autonomous provinces responded to the survey. Among them, 11 are regional referral centers. Seven Italian regions out of 20 reported no PPC centers/facilities, mainly in central-southern Italy. Less than half (45%) of the regional referral centers cover the entire regional territory, and three offer 24/7 service. Ten centers have a dedicated team. Half of the eight non-referral centers offer 24/7 service and have a dedicated team. A total of 1,092 patients were reported by 18 centers as of 24 October 2022. Over the years, an increasing number of patients has been reported, rising from 1,202 (2019) to 1,544 (2021). The dedicated staff is inadequate, and most healthcare providers are not recognized at an institutional level. A shortage of ‘young’ staff and a lack of specific training was reported, particularly among nurses (77% had no training in PPC).ConclusionsThe results obtained show how training, information, and research interventions are still necessary for the reorganization of the available resources and definition of proper strategies to respond dynamically to the new emerging needs of these populations. At the same time, our study represents a first step in defining a national registry of PPC models, useful for monitoring evolutions, and critical issues and planning any new or corrective strategy.

Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis

Background: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. Aim: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. Design: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). Data sources: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). Results: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. Conclusion: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

BackgroundFamilies with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care.AimThe aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care.MethodsWe used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel’s needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis.ResultsOverall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care.ConclusionThe findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.

Pediatric palliative care and childhood neurosurgery: reflections based on a quantitative analysis of a survey data

INTRODUCTION: In recent years, the profile of pediatric patients has changed, with the need for assistance for children living with chronic and life-threatening diseases becoming increasingly frequent. In this scenario, Pediatric Palliative Care (PPC) emerges as an integral and respectful form of assistance for these patients and their families. Understanding that neurosurgery is an extremely important area within Pediatric Palliative Care, as there are many intersections between the two areas, this research aimed to reflect on how this interaction is being carried out in practice. MATERIAL AND METHODS: It is an observational, descriptive, cross-sectional study, of survey type, in which the study population was composed of a convenience sample, using the snowball strategy. Analyses were performed with the aid of the statistical program Stata version 13.0 (Stata Corp, L. C.). Results are presented as frequencies and 95% confidence intervals, graph, and table. RESULTS: The sample represented 90 PPC services, almost all of which have physicians (97.90%). Among the medical specialties, none of the services reported having a neurosurgeon on the team. DISCUSSION: Several themes required by the National Medical Residency Commission for the training of neurosurgeons cover Pediatric Palliative Care, such as pain, bioethics, communicating difficult news and others. Therefore, the real rapprochement of the two areas is extremely important to ensure comprehensive care for the patient. CONCLUSIONS: There are important gaps between Pediatric Palliative Care and Pediatric Neurosurgery, reinforcing the importance of including the topic for neurosurgery residents and continuing education for those already trained.

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

Gabapentin for Pain in Pediatric Palliative Care

ObjectiveGabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). MethodsA prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. ResultsData were collected from 127 children with a median age of 4.7 years (IQR 0.1–17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. ConclusionsGabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

Silent suffering: Status of pediatric palliative care services in Pakistan

This article sheds light on Pakistan's challenging healthcare landscape, focusing on the underdeveloped state of pediatric palliative care (PPC). Despite being the fifth most populous country, Pakistan allocates minimal resources to its healthcare system, resulting in severe shortages of healthcare professionals. The scarcity of PPC services, exacerbated by cultural, social, and financial factors, poses substantial challenges to providing quality end-of-life care to children. However, the article also offers a glimpse of hope, highlighting the growing awareness among healthcare providers and ongoing efforts to bridge the gaps in PPC services, ultimately aiming to improve the quality of life for those in need.

In Every Detail: Spiritual Care in Pediatric Palliative Care Perceived by Healthcare Providers

ContextSpiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. ObjectivesTo identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. MethodsA qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. ResultsParticipants described that the essence of spiritual support was provided “in every detail” throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers’ own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. ConclusionThis study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.

A global assessment of access to pediatric palliative care for children with cancer in resource-constrained settings.

87 Background: Pediatric palliative care reduces suffering, improves communication, and enhances quality of life for children with complex disease, especially children with cancer. Despite a disproportionate burden of pediatric cancer in resource-constrained settings) the provision of pediatric palliative care services is limited. We aim to describe the global landscape of palliative care services for pediatric hematology/oncology patients using data from the Abbreviated PrOFILE (Pediatric Oncology Facility Integrated Local Evaluation), a 360-degree evaluation tool assessing care capacity and guiding the development of an improvement strategy in institutions caring for children with cancer. Methods: One hundred and twelve institutions across 23 countries completed the Abbreviated PrOFILE from 2019-2021. We extracted data from questions regarding pediatric palliative care personnel and training, medications for symptom management, and patient outcomes. Results were stratified by World Bank income level. Results: The analyzed hospitals were from low (LIC) (6), lower-middle (LMIC) (34), upper-middle (UMIC) (55), and high (HIC) (17) income levels. They self-identified as primarily cancer hospitals (19%), children’s hospitals (22%), general hospitals (45%), and pediatric oncology institutions (12%). Access to specialists varied by income level with 71% of HICs, 41% of UMICs, 32% of LMICs, and 17% of LICs reporting almost always having access to palliative care specialists. These specialists were more likely to have formal education in childhood cancer in HIC (59%) compared to low- and middle-income countries. Oral morphine was reported available in 100% of HICs, 76% of UMICs, 27% of LMICs, and 33% of LICs. Injectable morphine had similar results with 100% of HICs, 96% of UMICs, 41% of LMICs, and 33% of LICs reporting almost always having availability. Ibuprofen, acetaminophen, dexamethasone, ondansetron, metoclopramide, omeprazole, diazepam, phenobarbital, and phenytoin were reported as almost always or frequently available in at least 50% of institutions in each income level. End-of-life and bereavement services were less available in LICs (17%), LMICs (18%), and UMIC (36%) than HICs (53%). Following completion of the Abbreviated PrOFILE tool, 50% of the regional cohorts set a priority to improve supportive, palliative, or end-of-life care. Conclusions: Access to pediatric palliative care services varies by income level. Despite increased need for palliative services in LMICs, there is less access to trained providers and essential medications, especially in those with decreased resources. These results will inform the implementation of improvement interventions among institutions providing care for children with cancer.

Optimizing resource utilization: palliative care consultations in critically ill pediatric trauma patients

ObjectivesThe American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric...

Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic

BackgroundLittle is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic.MethodsIn this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children’s hospital in eastern Canada.ResultsTwenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children’s end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child’s physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child’s needs and their family’s desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports.ConclusionImplications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.

Changes in the End-of-Life Process in Patients with Life-Limiting Diseases through the Intervention of the Pediatric Palliative Care Team.

Kyungpook National University Children's Hospital initiated pediatric palliative care (PPC) services in January 2019, focusing on children and adolescents with life-limiting conditions (LLC). A study examined changes in the end-of-life processes in patients with LLC before and after a PPC intervention. This study included 48 deceased patients under 18 years at the hospital, divided into two groups: January 2015 to December 2016 without PPC (25 patients, Period 1) and January 2019 to April 2022 with PPC (23 patients, Period 2). Analysis of medical records revealed the following: no age/sex differences; more active advanced care planning in Period 2 (15/23 vs. 7/25, p = 0.01); discussing withholding/withdrawing treatment increased in Period 2 (91.3% vs. 64.0%, p = 0.025); intubation and CPR were less frequent in Period 2 (intubation 2/23 vs. 19/25, p = 0.000; CPR 3/23 vs. 11/25, p = 0.018); Period 1 had more deaths in the ICU (18/25 vs. 10/23, p = 0.045); and 3 patients in Period 2 chose home deaths. A survey in Period 2 revealed high satisfaction with emotional support (91.7%), practical assistance (91.6%), and symptom management (83.3%). PPC facilitated discussions on advanced care planning and treatment choices, ensuring peaceful and prepared farewells for children with LLC and their families.

Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic.

Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n=20 vs. n=38 per 12months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p=.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47days, p=.98). Consults for solid tumors increased from 22% (n=4) pre-embedment to 60% (n=18) post-embedment (p<.05). Consults for symptom management increased from 60% (n=12) to 87% (n=33) (p<.05). Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.

Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments.

The proper assessment of needs and outcomes in pediatric palliative care (PPC) is imperativeto ensure the best possible service to patients and families. However, given the multidimensionalnature of PPC, the low number of patients in this setting, the heterogeneity of diseases, the presenceof cognitive impairment in many patients, and the physiological development of children, outcomescan be complex and difficult to measure. Consequently, in this context, the use of standardizedand validated tools to assess the needs of children and families, to assess symptom severity, andto estimate the quality of PPC service represent a current need. Even if efforts have been made tostandardize approaches and tools for palliative care in adults, to our knowledge, a similar comprehensiveassessment of PPC has not yet been conducted to date. This narrative review provides anoverview and discusses the evaluation of tools currently applied in PPC, with an educational intentfor healthcare providers. We found that several instruments are available to assess different dimensionsof PPC. We proposed a classification into eligibility tools, patient and family needs assessmenttools, and care assessment tools. At present, two main eligibility tools exist, the PaPaS Scale and theACCAPED Scale questionnaire. Most of the tools for patient and family needs assessment have notbeen specifically validated in the PPC setting, and many may be more readily applied in researchsettings rather than in daily practice. Similar considerations can be made for tools assessing QoL,while tools assessing PPC service quality seem to be easily applied. Efforts to develop new specifictools and validate existing ones are undoubtedly advocated. However, in the patient's best interest,PPC healthcare providers should start using available tools, regardless of their validation status.

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

PurposeTo describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents.MethodsA qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed.ResultsThis study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care.ConclusionsDescribing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

Barriers to Pediatric Palliative Care: Trainee and Faculty Perspectives Across Two Academic Centers.

Objective: Barriers to palliative care for children with serious illness include system constraints and vastly different training and attitudes toward palliative care. This study aimed to explore trainee and faculty physician perceptions of barriers to palliative care across two pediatric centers to (1) examine differences between trainees and faculty and (2) compare these data with previous studies. Methods: A mixed-methods study was conducted in fall 2021 among pediatric trainees and faculty physicians at three pediatric hospitals in two pediatric centers in the western United States. Surveys were distributed through hospital listservs and analyzed descriptively and through inductive thematic analysis. Results: There were a total of 268 participants: 50 trainees and 218 faculty physicians. Of the trainees, 46% (23) were fellows and 54% (27) were pediatric residents. Trainees and faculty reported the same four most common barriers, which were consistent with previous studies: family not ready to acknowledge an incurable condition (64% trainees and 45% faculty); family preference for more life-sustaining therapies than staff (52% and 39%); uncertain prognosis (48% and 38%); and parent discomfort with possibility of hastening death (44% and 30%). Other barriers commonly reported included time constraints, staff shortages, and conflict among family about treatment goals. Language barriers and cultural differences were also cited. Conclusions: This study examining palliative care across two pediatric centers suggests that providers' perceptions of family preferences and understanding of illness persist as barriers to the delivery of pediatric palliative care services. Future research should examine family-centered and culturally mindful interventions to better elucidate family perspectives on their child's illness to align care.

Goals of Care Among Parents of Children Receiving Palliative Care

While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known. To determine parental prioritization of GOCs and patterns of change over time for parents of children receiving palliative care. A Pediatric Palliative Care Research Network's Shared Data and Research cohort study with data collected at 0, 2, 6, 12, 18, and 24 months in hospital, outpatient, or home settings from April 10, 2017, to February 15, 2022, at 7 PPC programs based at children's hospitals across the US. Participants included parents of patients, birth to 30 years of age, who received PPC services. Analyses were adjusted for demographic characteristics, number of complex chronic conditions, and time enrolled in PPC. Parents' importance scores, as measured using a discrete choice experiment, of 5 preselected GOCs: seeking quality of life (QOL), health, comfort, disease modification, or life extension. Importance scores for the 5 GOCs summed to 100. A total of 680 parents of 603 patients reported on GOCs. Median patient age was 4.4 (IQR, 0.8-13.2) years and 320 patients were male (53.1%). At baseline, parents scored QOL as the most important goal (mean score, 31.5 [SD, 8.4]), followed by health (26.3 [SD, 7.5]), comfort (22.4 [SD, 11.7]), disease modification (10.9 [SD, 9.2]), and life extension (8.9 [SD, 9.9]). Importantly, parents varied substantially in their baseline scores for each goal (IQRs more than 9.4), but across patients in different complex chronic conditions categories, the mean scores varied only slightly (means differ 8.7 or less). For each additional study month since PPC initiation, QOL was scored higher by 0.06 (95% CI, 0.04-0.08) and comfort scored higher by 0.3 (95% CI, 0-0.06), while the importance score for life extension decreased by 0.07 (95% CI, 0.04-0.09) and disease modification by 0.02 (95% CI, 0-0.04); health scores did not significantly differ from PPC initiation. Parents of children receiving PPC placed the highest value on QOL, but with considerable individual-level variation and substantial change over time. These findings emphasize the importance of reassessing GOCs with parents to guide appropriate clinical intervention.

Pediatric palliative care utilization by decedent children: A nationwide population-based study, 2002-2017.

This study aimed (1) to describe how trends in pediatric palliative care (PPC) utilization changed from 2002 to 2017, and (2) to examine factors predicting PPC utilization among decedent children in Taiwan. This retrospective, correlational study retrieved 2002-2017 data from three national claims databases in Taiwan. Children aged 1 through 18 years who died between January 2002 and December 2017 were included. Pediatric palliative care utilization was defined as PPC enrollment and PPC duration, with enrollment described by frequency (n) and percentage (%) and duration described by mean and standard deviation (SD). Logistic regression was used to examine the associations of various demographic characteristics with PPC enrollment; generalized linear regression was used to examine associations of the demographic characteristics with PPC duration. Across the 16-year study period, PPC enrollment increased sharply (15.49 times), while PPC duration decreased smoothly (by 29.41%). Cause of death was a continuous predictor of both PPC enrollment and PPC duration. The children less likely to be enrolled in PPC services were those aged 1 to 6 years, boys, living in poverty, living in rural areas, and diagnosed with life-threatening noncancer diseases. This study used nationwide databases to investigate PPC enrollment and PPC duration among a large sample of deceased children from 2002 to 2017. The findings not only delineate trends and predictors of PPC enrollment and PPC duration but also highlight great progress in PPC as well as the areas still understudied and underserved. This information could help the pediatric healthcare system achieve the core value of family-centered care for children with life-threatening diseases and their families. Pediatric palliative care should be widely and continuously implemented in routine pediatric clinical practice to enhance quality of life for children and their families at the end of life.