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Resumen Introduccion Existen pocos datos referentes a la practica de sedacion paliativa en poblacion pediatrica. El objetivo de este estudio es crear una definicion estandarizada de sedacion paliativa para poblacion pediatrica y aplicarlo en una Unidad de Cuidados Paliativos Pediatricos. Material y metodos Se realizo una revision no sistematica de la literatura en busqueda de la evidencia y recomendaciones existentes para la practica de sedacion en poblacion pediatrica, tras lo cual se creo una definicion de sedacion paliativa basada en tres items: 1. Indicacion 2. Consentimiento 3. Aplicacion. Posteriormente se realizo una revision retrospectiva de registros clinicos para analizar la practica de sedacion paliativa atendidos por la Unidad de Atencion Integral Paliativa Pediatrica de Madrid (UAIPPM) en un periodo de cinco anos (enero 2013-diciembre 2017). Resultados De 163 pacientes analizados, la sedacion se aplico en 20, 17 pacientes de la propia Unidad (70% varones; mediana de edad: 11,9 anos); 12 pacientes padecian cancer, siete enfermedades neurologicas y uno un sindrome polimalformativo; 52,9% pacientes sufrian mas de un sintoma en el momento de indicar la sedacion paliativa, siendo el dolor (64,7%) y la disnea (58,8%) los mas frecuentes. En cuanto a la definicion, solo tres pacientes consiguieron una cumplimentacion global de la misma, siendo el registro del consentimiento informado el area con mayor potencial de mejora. Conclusiones La evaluacion basada en una definicion estandarizada permitio definir la practica de sedacion paliativa en nuestra Unidad y encontrar areas potenciales de mejora.

Context : Globally, approximately 21.6 million children need pediatric palliative care (PPC). The greatest burden lies in low- and middle-income countries, where the demand for PPC exceeds available resources. Objectives : The objective of this study was to assess the impact of a PPC workshop on healthcare providers’ self-efficacy, comfort and confidence related to the provision of PPC in a Bhutanese referral-level hospital. Methods : This mixed-methods study included a one-and-a-half day PPC workshop with surveys administered to participants at three time points (before, immediately after, and 6-months after the workshop) to evaluate changes in self-efficacy, comfort and confidence. The study was conducted in January 2017 with healthcare providers at the Jigme Dorji Wangchuck National Referral Hospital in Thimphu, Bhutan. Results : Forty-one providers participated in the workshop; 38 completed the post-workshop survey and 27 completed the 6-month post-workshop survey. Results showed statistically significant increases in comfort levels from pre- to post-workshop surveys across nearly all areas. Qualitative results supported these findings. Conclusions : The results of this study suggest that a short, interactive and interdisciplinary workshop, originally designed for the United States setting but adapted to a low resource context, is an effective way to improve providers’ self-efficacy, comfort and confidence in the provision of PPC in resource-limited settings.

Death by neurologic criteria is a diagnosis that has presented complexities since its inception and pediatric cases are no exception. While rare, families may request accommodation to deviate from the traditionally defined diagnostic pathway based on their beliefs, mistrust of the diagnosis, or other complex reasons. Palliative care consultation offers a unique clinical perspective to complement the work of intensivists to support families through the diagnosis and possible resolution around accommodation requests. With misinformation and high-profile cases widely visible to the public through the media, these requests require a thoughtful and informed clinical approach by all members of the interdisciplinary clinical team. Common themes in many of these cases are trauma, bias and their impact on caregivers. We use a case-based approach to explore these complexities and clinical tools.

Zusammenfassung. Palliative Care wird normalerweise nicht mit dem Kindes- und Jugendalter in Verbindung gebracht. Trotzdem leben allein im deutschsprachigen Europa mehr als 50 000 Kinder mit lebensverkürzenden Krankheiten und jährlich sterben etwa 5000 Kinder. Palliative Care für Kinder und Jugendliche (PPC) ist eine Haltung, die niemandem aufgezwungen werden darf, sondern gelebt werden muss; bei komplex-chronischen Krankheiten oftmals über viele Jahre. Eine erfolgreiche und nachhaltige Implementierung von PPC basiert deshalb auf einer wertschätzenden Zusammenarbeit zwischen verschiedenen Teams und den betroffenen Familien getreu der hier vorgestellten Quadriga einer umfassenden Symptomkontrolle mit Neugier, Geduld, Aktivität und persönliche Zurückhaltung. Notwendige Grundlagen wie der Betreuungsplan, der interprofessionelle Hausbesuch und der runde Tisch sowie die 24-Stunden-Erreichbarkeit werden ebenso vorgestellt wie eine Triage-Technik und Advanced Care Management.

Background Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. Case presentation We aimed to describe a clinical experience in a setting where high-level evidence may not be obtained. We report our clinical experience in a pediatric palliative care department in Italy. Caregivers reported changes in intensity and frequency of pain and epilepsy events. Six patients received a titrated plant extract of cannabis sativa for 1 year. Only mild and transient adverse events occurred: drowsiness, euphoria, restlessness and tachycardia; the resolution was either spontaneous or obtained by modifying the administration schedule. Treatment was never discontinued. No overdoses occurred. All patients experienced seizures during the pre-treatment observation period, and obtained a reduction in seizure frequency, although with variable extent while receiving cannabis. In addition, a benefit on pain was observed, based on the caregiver’s evaluation, and a reduction of analgesic use. Conclusion Our experience suggests that a titrated plant extract preparation of medical cannabis may be useful to control treatment-resistant pain and epilepsy in PPC patients.

Objective: The present study used a quasi-experimental design to determine the effectiveness of palliative care education program in strengthening nursing students’ palliative care practices and attitudes toward care of the dying. Methods: The study involved 39 nursing student of 4th year, including 17 students in the experimental group and 22 in the control group. A pediatric palliative care education program was applied to the intervention group through interactive learning methods. The data was evaluated using multidimensional variance analysis, the Bonferroni modified t measure, and regression analysis. Results: A significant difference was found among the experimental and the control group for total mean scores of the all scale. A high level, positive, and highly significant relationship was found between the education program and all scale. Conclusion: The results of the study indicated that the pediatric palliative care education program was an effective method that could be used in educating nursing students. The study provides effective results for including pediatric palliative care nursing course to the nursing undergraduate education curriculum.

Primary palliative care education and mentoring strengthens frontline clinicians' confidence and competence in pediatric palliative care, and potentially mitigates their moral distress. The project aims were to improve the knowledge, attitudes, and skills of frontline intradisciplinary clinicians in caring for children with serious conditions and their families. We undertook an intensive educational initiative consisting of didactic and mentoring sessions, and mentored quality improvement projects. Outcomes included the following: 93.3% of participants reported comfort in discussing death, suffering, spirituality, and hope with families, and increased comfort in end-of-life care (89.5%), increased knowledge (94.7%) and skills (100%), improved communication (100%), and being better prepared to discuss and access palliative care resources (100%). Secondary outcomes included 33% increase in specialty pediatric palliative care consults and 98% increase in the integration of specialty palliative care for patients with high-risk cancers. Specialty pediatric palliative care referral became standard for patients with cystic fibrosis, high-risk solid and brain tumors, heart failure, and patients receiving a stem cell transplant. Clinician self-reported moral distress decreased by 30%. This project improved primary palliative care knowledge, attitudes, and confidence in skills, access to care, and family satisfaction, and decreased clinician self-reported moral distress. We report on the 4-year period of project implementation and sustainability.

BACKGROUND In parallel with the increase in the number of children with life-limiting or life-threatening diseases, the need for and right to pediatric palliative care is also increasing. This study aimed to examine the metabolic diseases, evaluate the symptoms, and review the needs of children who were admitted to the pediatric palliative care service. METHODS Following the approval of the local ethics committee (18/7/2019-107), the computer records of patients hospitalized in the pediatric palliative care service between December 1, 2018 and January 6, 2019 were reviewed retrospectively. Dr Behcet Uz Children's Hospital, Pediatric Palliative Care Center is third center in Turkey. Our pediatric palliative care center has one year of experience. RESULTS In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The mean age was 3.2 ± 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. CONCLUSION Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented.

Background The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential “next step” actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their “actionable importance.” Methods Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the “actionable importance” of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. Results One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). Conclusions Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.

Context The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. Methods The P alliative A ssessment of N eeded DE velopments & M odifications I n the Era of C oronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. Results One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients’ pain, fear, and isolation. Conclusions PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. Article Summary This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents’ distress in provision of comfort at the end of life.

Pediatric Palliative Care (PPC) is a nascent subspecialty that aims on achieving the best possible quality of life for children with life-threatening illnesses. To attain this goal in a developing country, Pediatricians require adequate knowledge and skill in this subject. Assessment of competency and educational needs in Pediatricians is the first step towards this aim. A multi-center, self-reported, cross-sectional, online survey was conducted among Pediatric residents and junior staff pediatricians from various teaching hospitals in Pakistan. Data were analyzed in terms of descriptive statistics using SPSS 16. Total 284 Pediatric residents and junior staff pediatricians from 4 different training programs and 13 different teaching hospitals of Punjab, Pakistan recorded their responses. The mean age of respondents was 30.19 years (+2.67 SD) with a male-to-female ratio of 1:1.2. Regarding self-assessment of competency in end-of-life clinical skills, low or below average competence (Mean 2.5) while the top 3 recommended topics were: Pain assessment and management, assessment and management of terminal delirium, agitation, anxiety, and assessment and management of terminal dyspnea. Pediatricians in a developing country are eager to learn more about PPC but significant gaps exist in current training in PPC in our country that need to be bridged.

Little is known about the frequency and clinical course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections in pediatric patients with severe comorbidities. In this prospective cross-sectional trial, the seroprevalence of SARS-CoV-2-IgG in patients with life-limiting conditions being treated by a large specialized pediatric palliative home-care team was determined. In order to gain insight into the infection chain, close contacts of seropositive patients were also included in the study. We analyzed the sera of 39 patients and found a 25.6% seroprevalence for SARS-CoV-2. No SARS-CoV-2 infections were known prior to the study. No significant difference was found in the symptom load between seropositive and seronegative patients during the risk period for SARS-CoV-2 infections. Of the 20 close contacts tested, only one was seropositive for SARS-CoV-2.Conclusions: Our results indicate a substantially high prevalence of silent SARS-CoV-2 infections in pediatric palliative care patients. Surprisingly, no severe outcomes were seen in this fragile patient collective with severe comorbidities. The chain of infection and thus the reason for the high frequency of SARS-CoV-2 infections in pediatric palliative care patients remain unclear. What is Known:•Even though severe disease courses of COVID-19 have been reported in children, there are yet no established risk factors for SARS-CoV-2 in pediatric patients. What is New:•In this cross-sectional seroprevalence study of palliative pediatric patients with severe life-limiting conditions, a high rate of seropositive patients (25.6%) was found.•Surprisingly, all seropositive patients were previously unrecognized, despite the severe comorbidities of our collective.

Objectives: Early integrated palliative care has shown to improve the quality of life in patients with cancer. During the past decade, pediatric palliative care has become an established area of medical expertise, however due to scant information available regarding the triggers for referral and referral practice very few children receive a formal palliative care consult. Materials and Methods: A retrospective audit of medical case records of pediatric oncology patients over a period of 1 year from September 30, 2019, to September 30, 2020, was conducted. Demographic details, diagnosis, staging, clinical parameters, reason for referral, and palliative care plan were captured in a predesigned pro forma. Results: Among 126 children with cancer, 27 (21.4%) patients were referred to palliative care. Majority 21 (77%) referrals were inpatient consults. Symptom management 17 (44.7%) was the most common trigger for referral followed by referrals for psychosocial support 12 (14.4%). Children with solid tumors 16 (59%) were more often referred than hematological malignancies. Among those needing end of life care, 8 (88.8%) out of 9 families preferred home than hospital. Conclusion: Low incidence of palliative care referral and presence of symptoms as a trigger for palliative care referral suggests gaps in the integrated approach. The study findings prompt a review of palliative care referral criteria and referral practice in a pediatric oncology setting.

ObjectiveThis study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses’ knowledge and attitude regarding PPC for children facing life-threatening illnesses or chronic diseases in Jordan.MethodA quasi-experimental design was used. Exactly 120 pediatric nurses participated in the study, of which 60 were in the intervention group and 60 in the control group.ResultsThe results of the study showed that nurses had a low score in knowledge and attitude toward PPC. The mean knowledge score of PPC for the control group is 6.88 (SD = 2.26), while that of the intervention group was 7.92 (SD = 1.99; p = 0.052). The mean attitude for PPC score for the control group was 95.88 (SD = 7.90), while that of the intervention group was 100 (SD = 10.95; p = 0.009). Also, the educational intervention had a significant positive effect on the knowledge and attitude toward PPC among nurses.Significance of the resultsBased on the result of this study, the authors found strong evidence of the effectiveness of the PPC educational program when it came to improving the nurses’ knowledge and attitude toward PPC services and offer us an effective educational program.

Introduction:In recent years, advances in technology and medicine have led to an increase in the number of children with chronic diseases, while reducing the mortality rates of pediatric patients. In this study, it was aimed to evaluate the general characteristics and hospitalizations of pediatric patients receiving health care at home from our hospital.Methods:The study was carried out at the University of Health Sciences Turkey, İzmir Dr. Behçet Uz Children’s Hospital. The cases registered to the home health services unit between 2012 and 2018 were evaluated retrospectively. The demographic features, diseases, medical devices and technological dependence and hospitalization information of these patients were accessed from the hospital registration system. Data were recorded on SPSS program and evaluated statistically.Results:The average age of 124 patients enrolled in the home health services unit was 8.4 (0.6-17.8) years, and 56.5% were male. 71.8% of the patients were diagnosed with a primary neurological disease, especially cerebral palsy. Tracheostomy was present in 31.5% of the patients and 25% were receiving respiratory support by mechanical ventilation. Gastrotomy was present in 12.9% of the patients. While policlinic applications of those with primary neurological disease were significantly higher (p=0.04) compared to the patient group other than neurological disease, hospitalization rates were similar (p>0.05).Conclusion:The neurological group of patients, including pediatric patients with medical devices and technology dependence, is the main group among the patients who are monitored in the home health care unit. Specialized pediatric palliative care services need to be opened and developed in order to meet the medical, psychological and social needs of these patients and to reduce the workload and occupancy of special units such as intensive care.

Introduction: Home Patient-Controlled Analgesia (PCA) is an effective and often preferred therapy for the treatment of chronic pain symptoms in the pediatric palliative care patient. There is little previous research of patient experience with Home PCA. The purpose of this study was to investigate use of home PCA devices in pediatric patients to inform palliative care providers considering an alternative management option for the treatment of end-of-life or chronic pain. Methods: A chart review was performed of patients prescribed home PCA. Surveys were sent to patients’ guardians/caregivers. Questions referred to caregiver impression/satisfaction with information provided regarding use of the PCA machine, the medication used, the benefits and risks of PCA, monitoring of patient pain level and alertness, machine efficacy, and fears and concerns. Results: Thirty-four patients met inclusion criteria, and 18 patient families completed surveys. Demographic data showed that the majority were Caucasian and had a cancer diagnosis. Patient age and duration of home PCA use varied greatly. Overall, participants were satisfied with information received and felt positively about home PCA, albeit expressing concerns. The majority described the machine as easy to use and were satisfied with their child’s pain management and level of alertness. Conclusion: Responses indicated that home PCA is a manageable and effective alternative to traditional analgesic medications for management of chronic pain in the pediatric patient.

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists’ personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

Context Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPTs). More information is needed to inform and optimize collaborative care. Objectives Define and describe the population of children with PPC involvement for whom there was concern for maltreatment. Methods Single-center retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables. Results Among 1804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics. Conclusion PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7–128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

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.

Background Cancer pain management in children is challenging owing to their unique patient characteristics. We present the case of a 10-year-old girl whose cancer pain was successfully managed using an intrathecal neurolytic block. Case presentation The patient experienced severe cancer pain due to recurrent right ilium osteosarcoma. The tumor progressed rapidly despite chemoradiotherapy and gradually invaded the right lumbar plexus, which resulted in severe neuropathic pain in the right lower extremity. Systemic analgesics failed to attenuate the pain. We performed an intrathecal neurolytic block using 10% phenol-glycerol. The neurolytic block completely relieved her right lower extremity pain. After the block, the patient’s quality of life improved, and she spent her time with family. Conclusions The intrathecal neurolytic block successfully relieved the patient’s cancer pain. Successful intrathecal neurolytic blocks require meticulous pain assessment of individual patients, to avoid possible serious complications such as paresis/paralysis and bladder/bowel dysfunction.

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child–parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

Background: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. Objective: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. Design: A qualitative study involving focus groups (FGs) with PPC stakeholders. Setting/Participants: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). Measurements: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. Results: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. Conclusion: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.

ObjectiveParents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC).MethodThe Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs.ResultsA total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic.Significance of resultsThe COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

Background: Intellectual and Developmental Disabilities (IDD) are defined as physical/mental impairments before age 18. Not only are many IDD patients living into adulthood, but deinstitutionalization has also led to most living in community settings. Little is known about end-of-life needs in these adults, and existing literature does not examine attitudes of Canadian providers. Objective: Thematic and content analysis examined attitudes of Canadian Pediatric Palliative Care (PPC) practitioners on caring for adults with IDD to identify components of care, which could be improved. Design: An anonymized survey was created (Surveymonkey.com) using open-ended and Likert-scale questions, with thematic/subthematic coding on NVivo11. Initial coding included a codebook, which was refined. Independent coding was compared with initial coding. Coded data were reanalyzed after demographic stratification, results discussed, and consensus reached. Settings/Subjects: All Canadian PPC centers responded through snowball sampling (25 of 36 [70%] practitioners). Measurements/Results: Major themes covered communication and decision making, lack of resources (including access to appropriate services), and knowledge/skill/experience gaps among adult palliative care and generalist practitioners. Gaps included complex medical conditions of IDD patients, trajectories, and related management. Knowledge ratings of adult palliative care and generalist practitioners by respondents were evenly distributed, but only pediatricians gave ratings of poor or worse. PPC practitioners are comfortable being consulted by adult palliative care and generalist colleagues. However, frequency of consults varied dramatically, from one to two times/month in British Columbia to never. Conclusions: PPC practitioners across Canada identified several major issues and barriers to optimal palliative care for adults with IDD.

Background: Integrated pediatric palliative oncology (PPO) outpatient models are emerging to assist oncologists, children, and families throughout their course with cancer. Significant time is devo...

Background Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end‐of‐life (EOL) care. We examined “palliative opportunities,” or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. Methods A single‐center retrospective review was conducted on patients aged 0–18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. Results Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty‐four of ninety‐two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. Conclusion Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers., Palliative opportunities are events throughout a child's course with cancer that warrant additional palliative care support. Children with hematologic malignancies experienced a median of five palliative opportunities throughout their course, which increase toward death, yet received palliative care consultation only 47% of the time.

Background: Despite their importance, pediatric palliative care (PPC) services are still scantly diffused. In addition, eligibility criteria for PPC are quite complex. Consequently, clinicians require a tool that suggests how to refer patients with life-limiting diseases to the most appropriate service and how to properly allocate health care resources. Objective: Recently, the Accertamento dei bisogni Clinico-Assistenziali Complessi in PEDiatria (ACCAPED) scale has been developed by a group of experts in PPC to evaluate the specific clinical needs of pediatric patients with a life-limiting disease. This study presents the validation of the ACCAPED scale. Design: Validation of ACCAPED scale was pursued by means of description and analysis of clinical vignettes representing patients with challenging-to-evaluate needs who have to be referred to the most appropriate service (community care, general PPC, and specialized PPC). The evaluation of vignettes according to the clinical experience of the experts represented the gold standard against which the validity of the ACCAPED scale was tested by groups with different levels of experience (experts, pediatricians, and health care providers (HCPs) not involved in PPC). Results: Results show a very high concordance between the evaluation of the vignettes through the ACCAPED scale and the evaluation by the clinical experience for experts in PPC and pediatricians. A less favorable grade of concordance has been recorded for HCPs not involved in PPC, suggesting that educational efforts to improve basic knowledge of PPC within the medical community are needed. Conclusions: Overall, this study suggests that the ACCAPED scale is a useful tool to improve rationalization of resources and eligibility criteria for PPC.

Background: Pediatric palliative care (PPC) does not meet current needs, particularly in low- and middle-income countries. Objective: We evaluated the first PPC team to serve patients with cancer in a tertiary children's hospital in China. Design: Single-center retrospective study. Setting/Participants: The core team members included oncologists, nurses, and a social worker. The team delivered palliative care through the outpatient clinic, consultations, a 24/7 hotline, and a hospice room located in the observation ward. Patients were referred by pediatric oncologists. We analyzed data for 92 children (54 boys and 38 girls; aged 7 months to 16 years) who required palliative care from August 2012 to August 2018. The most common primary diseases were leukemia and neuroblastoma. Measurements: We investigated the time from referral to death, symptoms during the prior month, the effects of informing children above eight years, and family satisfaction. Results: Among 88 deaths, the median time from referral to death was 17 (range 1–218) days. Most children had multiple symptoms (mean ± standard deviation 4.2 ± 3.2 per child). The most common symptoms in the last month of life were pain, loss of appetite, fatigue, fever, and dyspnea. Children above eight years who were not informed about their condition experienced more anxiety or depression. All families were satisfied with the services. Conclusions: The palliative care counseling team is feasible and could be complementary to conventional medicine in caring for children with life-limiting illnesses. This model has an important role in PPC in China or developing countries with scarce medical resources.

Resumo O artigo visa discutir os efeitos dos serviços de cuidados paliativos pediátricos sobre a instituição hospitalar e a qualidade de vida de pacientes e seus familiares. Para isso, o texto traz resultados de revisão integrativa de literatura que considerou 14 artigos publicados de 2013 a 2018. Nos estudos analisados sobressaíram os seguintes aspectos: eficácia dos cuidados paliativos pediátricos; diminuição dos custos hospitalares após a implantação do serviço; importância da equipe interdisciplinar; necessidades educacionais dos profissionais da saúde; e impacto na qualidade de vida de pacientes e familiares. Conclui-se que os cuidados paliativos pediátricos proporcionam cuidado transversal e devem ser reconhecidos como serviço especializado e indispensável para pacientes pediátricos com doenças incuráveis. Abstract This article aims to discuss the effects of pediatric palliative care services on hospitals and the quality of life of patients and their families. The research reports the results of an integrative literature review based on 14 articles published between 2013 to 2018. In the studies analyzed, the following aspects were highlighted: efficacy of pediatrics palliative care in hospitals, reductions of hospital costs after implementation of the service, importance of multidisciplinary teams, educational needs of health professionals, and the impact on the quality of life of patients and their families. Results show that pediatrics palliative care provides comprehensive care and should be recognized as an indispensable and specialized service for children with incurable diseases. Resumen Este artículo tiene como objetivo discutir los efectos de los servicios de cuidados paliativos pediátricos sobre la institución hospitalaria y la calidad de vida de los pacientes y su familia. Para ello, el texto presenta los resultados de una revisión integrativa de la literatura que incluyó 14 artículos publicados entre el 2013 y el 2018. En los estudios analizados destacaron los siguientes aspectos: la eficacia de los cuidados paliativos pediátricos, la reducción de los costos hospitalarios tras la implantación del servicio, la importancia del equipo interdisciplinar, las necesidades educativas de los profesionales de la salud; y el impacto en la calidad de vida de los pacientes y su familia. Se concluye que los cuidados paliativos pediátricos proporcionan cuidado transversal y deben ser reconocidos como un servicio especializado y esencial para los pacientes pediátricos con enfermedades incurables.

Pediatric palliative care (PPC) literature was utilized to identify barriers for early initiation of palliative care at diagnosis among children with life-threatening diseases. Early integration of PPC enhances quality of life and reduces suffering in these children, but many clinicians fail to initiate advanced care planning, establish goals of care, and refer to specialists. Barriers to early PPC initiation include clinician misperceptions, emotional toll on clinicians, and prognostic uncertainty about treatment options and care management strategies. Pediatric nurse practitioners can increase awareness, educate, and support other clinicians to promote early initiation of PPC in children with life-threatening diseases.

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child’s social participation, normalcy, social support, coping with the disease and caregiver’s competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

Introduction:Pediatric palliative care is the highest level of care aiming to improve the quality of life of all children and families with life-limiting and threatening diseases. The knowledge and awareness of pediatricians about pediatric palliative care in our country is not known. The aim of this study was to evaluate the knowledge and awareness level of pediatricians in the field of pediatric palliative care.Methods:The study was planned as a prospective study following the approval of Local Ethics Committee of Dr. Behçet Uz Children’s Hospital. Totally 217 pediatricians answered the questionnaire completely. The data obtained from the survey questions were uploaded to the SPSS program and statistical analysis was performed.Results:Of the 217 pediatricians who participated in the study, 67.3% were women and 59.4% were specialist physicians. 68.7% of the physicians were employed in education and research hospitals and 7.4% in private institutions. It was found that pediatricians heard about pediatric palliative care (p=0.002), but they thought it was less necessary when its effect on quality of life, analgesia and sedation use was questioned.Conclusion:Pediatric palliative care is a new field in our country. It was found that most of the participants heard about pediatric palliative care because they worked in education and research hospital but they did not know the content. In the coming years, we believe that increasing the number of centers and training will increase the knowledge level of pediatricians.

Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric palliative care research programs and (2) provide an example of how one cooperative group is implementing these innovative efforts to partner with programs to integrate pediatrics on an expanding scale. Details are described for how pediatric studies can benefit from cooperative group infrastructure and expertise. In turn, we describe how cooperative groups can benefit from collaborating on pediatric studies through broadening of data dictionaries, data repositories, and reach in palliative care research communities.

PURPOSE The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered integral to cancer care for children in all settings. There is limited evidence from LMICs about the characteristics, symptoms, and outcomes of children with cancer who receive PPC, which is needed to define the global need and guide the development of these services. METHODS This retrospective review of clinical records of children who received PPC was conducted during a pilot project (January 2014-August 2015) that implemented a PPC team at a tertiary hospital in Dhaka, Bangladesh. Clinical data on diagnosis, symptoms, treatment status, deaths, and key palliative care interventions were collected and analyzed using descriptive statistics. RESULTS There were 200 children who received PPC during the pilot project. The most common diagnoses were acute lymphoblastic leukemia (62%) and acute myeloid leukemia (11%). Psychosocial support for children (n = 305; 53%) and management of physical symptoms (n = 181; 31%) were the most common types of interventions provided. The most frequently recorded symptoms were pain (n = 60; 30%), skin wounds (n = 16; 8%), and weakness (n = 9; 5%). The most common medications prescribed were morphine (n = 32) and paracetamol (n = 21). CONCLUSION A hospital-based PPC service addresses pain and symptom concerns as well as psychosocial needs for children with cancer and their families in a setting where resources are limited. Health care facilities should incorporate palliative care into the care of children with cancer to address the needs of children and their families.

BACKGROUND. Pediatric palliative care applies to the conditions specified in the Regulation of the Minister of Health. The previous studies have proved that the conditions’ catalogue is incomplete and inadequate. AIM OF STUDY. The aim of the study was to verify completeness and adequacy of the Minister of Health’s catalogue and to develop a new catalogue based on available epidemiological data concerning the Polish population. MATERIALS AND METHODS. The data of the Statistics Poland on underlying causes of death of children (0-17 years old) and young adults (18-29 years old) who died in 1999-2018 were analyzed. Besides, the study includes data collected by the Warsaw Hospice for Children Foundation on diagnoses of 739 patients treated in 1994-2019, including 519 deceased. The catalogue developed on that basis was compared with the Minister of Health’s catalogue. RESULTS. The new catalogue of conditions that may require pediatric palliative care in Poland and the additional criteria of patient recruitment were developed. The incompleteness and inadequacy of the Minister of Health’s catalogue were demonstrated. CONCLUSIONS. The Regulation of the Minister of Health necessitates an amendment regarding the list of medical conditions entitling children to guaranteed palliative care and hospice services. The Minister of Health should introduce standards and medical procedures for pediatric palliative care. Patients should be recruited on the basis of recognized standards by physicians and not officials of the National Health Fund using incomplete and inadequate Minister of Health’s catalogue of medical conditions.

Aim To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the paediatric oncology unit of the Istituto Nazionale Tumori of Milan and compare this cohort with a cohort of patients resident in the same area treated before the introduction of early palliative care. Methods A virtual team was assembled in 2015. The PC providers operate outside the hospital. Conference calls were scheduled to discuss patients' problems. This sample was compared with the clinical records of patients residing in the same area who died between 2009 and 2014. Results Between January 2015 and April 2019, 41 patients residing in the Milan area mainly with CNS tumours or sarcomas were referred to the team. Comparing the results with the previous cohort, there was a rise in the number of patients dying at home or in a hospice and the duration of PC increased over time. From 2015, none of the patients died in an intensive care unit. Conclusion Patients managed by the virtual team were able to continue their cancer treatments, take part in Phase I trials and receive PC. All patients with a poor prognosis should have PC at an early stage.

Background Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. Methods Oncology patients (ages 0–25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015–06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017–06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. Results A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p

Objective: To report our first case series of Dignity Therapy modified for a pediatric palliative care population. Background: Dignity Therapy has been utilized successfully with terminally ill adult patients to help restore a sense of dignity and personhood as well as cope with existential distress near the end of life. To our knowledge, there are no published reports of this treatment modality in pediatric patients. Methods: The authors report the experience of a single-center case series of Dignity Therapy in a pediatric palliative care population. The adult Dignity Therapy process was adapted to fit the pediatric population and their families. Modifications are explained in some detail, and specific cases are shared to illustrate the process. The goal of this case series is to report on the application of Dignity Therapy to the pediatric population. Setting/subjects: Inclusion criteria for the cases series consisted of children and their families who were aware that death may occur soon, were English speaking, admitted to the hospital, and receiving care from the palliative care service. Results: Eight patients or their caregivers have completed Dignity Therapy thus far through our program. Four consented to publication of their experience. Three patients were adolescents and told their own story and the story of one younger nonverbal child was told by her family. All four participants reported that the intervention was acceptable and expressed gratitude for their final generativity document. No patient or family reported distress or negative effects from participation in Dignity Therapy. Conclusions: This case series describes how Dignity Therapy is possible with adaptations in the pediatric population, and how Dignity Therapy by proxy may be possible for caregivers of patients unable to tell their own story.

Background: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. Objective: The objective of this pilot study was to provide suggestions from medical interpreters to palliative care teams as to how to effectively incorporate medical interpreters into end-of-life conversations. Methods: Participants included pediatric hospital-based medical interpreters who had interpreted for at least 1 end-of-life conversation in the pediatric hospital setting. A total of 11 surveys were completed by medical interpreters. The study consisted of a written 12-item survey with a follow-up focus group to further explore survey themes. Results: The translation of cultural contexts, awareness of the mixed messages the family received from health care teams, and the emotional intensity of the interactions were depicted as the most challenging aspects of the medical interpreter’s role. Despite these challenges, 9 interpreters reported they would willingly be assigned for interpreting “bad news” conversations if given the opportunity (82%). Medical interpreters recognized their relationship with the family and their helping role for the family as meaningful aspects of interpreting even in difficult conversations. Medical interpreters shared 7 thematic suggestions for improved communication in language-discordant visits: content review, message clarity, advocacy role, cultural understanding, communication dynamics, professionalism, and emotional support. Conclusions: As experts in cultural dynamics and message transmission, the insights of medical interpreters can improve communication with families.

Objetivo: Analisar saberes e práticas de enfermeiros assistenciais sobre cuidados paliativos à criança com doença crônica, à luz da Teoria do Cuidado Humano. Método: Estudo qualitativo desenvolvido com doze enfermeiras de dois hospitais de referência em pediatria. Os dados foram coletados mediante entrevista semiestruturada e analisados a partir de Análise de Conteúdo e Teoria do Cuidado Humano. Resultados: Da análise do material empírico emergiram as categorias: Saberes de enfermeiras assistências sobre cuidados paliativos, Situações elegíveis para promoção de cuidados paliativos pediátricos e Cuidados paliativos a criança com doença crônica na prática assistencial de enfermeiras. Conclusão: Existem fragilidades no saber das participantes que dificultaram a definição de cuidados paliativos, influenciando na adoção desses cuidados na prática assistencial. A medicalização foi descrita como a principal ação paliativa desempenhada pelas participantes. Contudo, medidas de conforto, comunicação e cuidado espiritual também foram abordados como meios para amenizar o sofrimento de crianças com doenças crônicas.

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers. Objective: Determine whether telehealth inclusion of a familiar pedia...

OBJECTIVES Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN A retrospective single-center study. SETTING A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.

Thanatophoric dysplasia (TD) is a rare skeletal dysplasia commonly thought to be lethal. In this case report, we discuss a nine-year-old male with TD and review his parents' decision making shortly after their son was born, the technology needed to sustain him, and his parents' perception of his quality of life. We also summarize the clinical course of published long-term survivors with TD. Pediatric Palliative Care teams, especially those conducting perinatal palliative care consultations, are often asked to support families in the face of prognostic uncertainty. Our case report and review of the literature adds to the uncertainty of prognosis in TD and suggests that pediatric palliative care providers should be wary of the label "lethal."