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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.

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.

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.

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.

Objectives To investigate the focuses and trends of the studies on pediatric palliative care (PPC) and provide directions for future research. Methods Relevant papers about PPC published from 2004 to 2018 were analyzed using bibliometric analysis methods, including co-word analysis, biclustering analysis, and strategic diagram analysis. The included papers were divided into three groups based on the publication time, including 2004–2008, 2009–2013, and 2014–2018. Results A total of 1132 papers were published between 2004 and 2018, and there were 293 papers published between 2004 and 2008, 396 between 2009 and 2013, and 443 between 2014 and 2018. There were 42 high-frequency MeSH terms/MeSH subheadings in papers published between 2004 and 2018, including 12 between 2004 and 2008, 13 between 2009 and 2013, and 17 between 2014 and 2018. Conclusion Studies on PPC were making progress, with the increasing number, expanding scope, and uneven global distribution. Integration palliative care into pediatrics, cancer treatments in pediatric oncology, education methods on PPC, and establishment of professional teams were the major themes during 2004–2008, then the themes changed into establishing interventions to enhance the quality of life of the patients and parents, building professional-family relationship, and investigating attitude of health personnel in PPC during 2009–2013 and subsequently turned into communication skills, end-of-life decision making, and guidelines making on PPC during 2014–2018. Underdeveloped and protential themes including effective approaches to deal with the ethical dilemmas, training programs on communication skills, family support and guideline making are worth studying in the future.

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.

Problem There is a growing international drive to deliver children's palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children's EOL care at home. Eligibility criteria A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000 and 2018. Eligibility criteria included papers reporting children's EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals' experiences of delivering this care. Sample Twenty-three papers met the eligibility criteria and were included in the review. Results Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist pediatric palliative care knowledge is an essential aspect of any model of home-based EOL care. Discussion and application to practice This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families.

In support of caregivers in the field, the regional pediatric palliative care resource teams travel to health, medico-social and liberal structures, as well as to homes to accompany children and their families affected by serious illness. Nurses play an important role in this sensitive care. Research and teaching enable them to disseminate the palliative culture and advance knowledge.

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Résumé Les soins palliatifs pédiatriques visent à promouvoir la meilleure qualité de vie des enfants. Cependant, mesurer cette qualité de vie, qui est un construit hautement subjectif et multidimensionnel, est complexe car il faut tenir compte de l’hétérogénéité des maladies, des âges, des trajectoires de soins ainsi que des types d’interventions. Actuellement, la plupart des instruments de mesure ne tiennent pas suffisamment compte de la perspective des enfants au sujet de ce qui est important pour eux. De plus, la pertinence de certaines propriétés psychométriques des outils standardisés existants a été questionnée dans le contexte particulier des soins palliatifs pédiatriques. Summary Pediatric palliative care aims to promote quality of life but measuring this highly individual and multidimensional construct remains challenging. Difficulties are linked to heterogeneity of diseases, ages, care trajectories and type of interventions provided. Often, measure instruments do not include children's perspectives through self-reporting of what matters to them. Furthermore, the psychometric properties of some existing standardized questionnaire were criticised in the field of pediatric palliative care.

Context Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. Objectives To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. Methods A survey was sent to the American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV. Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. Results One-hundred and five respondents (91%) provide palliative care to children ≥ 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board certified in Hospice and Palliative Medicine, and most (39, 63%) certified via the direct pathway (“grandfathering”). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended toward decreasing methadone dose more (40% ± 19%) than non–board-certified physicians (28%, ±20%) when changing from the oral to intravenous route (P = 0.07). Respondents defined a QTc interval as “prolonged” (mean ± SD) at 444 milliseconds (±68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (±33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). Conclusions There are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regard to methadone. More education is needed on the accurate value of a prolonged QTc interval.

Mental health professionals can play a key role in helping pediatric patients and their families prepare for and endure the death of a child. Impactful interventions include assisting a family's transition toward acceptance of a child's pending death, using prognostication as a tool in emotional preparedness, and education on expectant symptoms to optimize management and sense of caregiver efficacy.

Palliation in pediatric otorhinolaryngology is a rarely discussed but important aspect of care. This review encapsulates current thinking on pediatric palliative care (PC) and demonstrates, through one case, the impact of integrating PC into clinical care. We encourage early consideration of pediatric palliative care approaches for children with complex otorhinolaryngologic disorders.

Pediatric palliative care is a comprehensive treatment approach (physical, psychological, social, spiritual) for children living with life-threatening conditions. These patients and siblings, as well as children of ill parents, face extraordinary psychological challenges. Structured art techniques incorporated into psychotherapy can be powerful for children dealing with life-and-death realities. This article provides the rationale, instructions, and examples for 3 techniques that the author has adapted for children facing illness and bereavement. Although these art techniques are simple to administer, they frequently evoke complex and powerful responses and thus are intended for use by or in consultation with mental health professionals.

To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

Objectives The benefits of non-invasive ventilation (NIV) have been clearly demonstrated in pediatrics. In palliative care, NIV can improve the level of comfort and quality of life and can decrease dyspnea. The objective was to survey pediatricians' opinions and practices regarding NIV in palliative care in France. Design A mail survey was conducted among pediatric pneumologists, intensivists and palliative medicine consultants from February 2015 to March 2015. Results In case of acute respiratory failure, 84% of the responding practitioners found NIV appropriate in do-not-intubate (DNI) children, while only 35% of them found it appropriate in comfort-measures-only (CMO) children (P Conclusion French pediatricians habitually use NIV for management of acute or progressive respiratory symptoms in DNI children. In CMO children, a majority of responding practitioners find NIV inappropriate. In palliative care, the indications for and efficacy of NIV are evaluated based on clinical criteria and rarely on gasometric criteria.

Resume Introduction En France, 26 equipes regionales ressources de soins palliatifs pediatriques (ERRSPP) ont ete creees entre 2008 et 2012. Nous avons conduit la premiere etude prospective francaise visant a decrire les caracteristiques du recours initial a une ERRSPP et analyser les reponses apportees par cette equipe. Materiel et methodes Toutes les demandes d’interventions formulees a l’ERRSPP entre septembre 2013 et septembre 2014 ont ete recueillies de facon prospective a l’aide d’un questionnaire comportant : les elements demographiques et cliniques du patient (âge, sexe, pathologie), les caracteristiques de la demande (origine du demandeur, specialite du service, motif de la demande) et de la reponse apportee par l’ERRSPP (intervalle diagnostic initial–demande, duree de la prise en charge, deces eventuel, modifications de la demande initiale). Les pathologies ont ete classees dans l’un des 6 groupes de maladies de soins palliatifs pediatriques (SPP), selon les normes edictees par l’Association canadienne de soins palliatifs. Resultats Nous avons recense 67 demandes, concernant 61 patients (37 garcons). L’âge median etait de 49,8 mois [2,3–145]. Les motifs de demande ont ete multiples : reunion ethique pluridisciplinaire (42 %), coordination (34 %), aide a la prise en charge symptomatique (21 %), aide au domicile (19 %), soutien psychologique (15 %), enseignement (9 %) et discussion autour d’un cas (6 %). La demande d’une reunion ethique a ete predominante pour la periode neonatale (61 %) alors que la coordination de la prise en charge l’a ete pour les enfants et adolescents (78 % au-dela de 4 ans). Le delai median « diagnostic–demande » rapporte aux groupes de maladies a ete court pour le groupe 5 (neonatalogie : 0,36 mois) et long pour le groupe 4 (maladies irreversibles et non evolutives : 54,6 mois) (p Conclusion Cette etude montre l’heterogeneite du premier recours a une equipe de SPP, validant ainsi les differentes missions devolues aux ERRSPP et la necessite d’une equipe pluridisciplinaire. La reponse de l’ERRSPP a ete elargie dans la moitie des cas, demontrant une modulation des besoins dans le temps.

Resume Objectifs En France, la majorite des deces d’enfants survient a l’hopital. Cette etude vise a etablir un etat des lieux des prises en charge de fin de vie en 2014 en services pediatriques specialises, identifier les ressources et problematiques rencontrees par les professionnels et decrire les parcours de sante en fin de vie des enfants et adolescents qui y decedent. Methode Un questionnaire auto-administre a ete adresse en 2015 aux services hospitaliers specialises de neurologie, reanimation et onco-hematologie pediatriques. Resultats Total de 53 participants sur 94 services sollicites (taux de reponse : 56 %). Au moment de l’enquete, 13 % des patients hospitalises etaient en fin de vie. Treize pour cent des services ne disposaient d’aucun professionnel forme aux soins palliatifs et 21 % n’avaient pas mis en place de dispositif de soutien pour les professionnels. Neanmoins, 77 % ont mobilise les equipes ressources regionales de soins palliatifs pediatriques en 2014. L’enquete a retrace 225 parcours de patients d’un mois a 18 ans decedes suite a une maladie grave en phase avancee ou terminale en services specialises. Au total, 72 % souffraient de symptomes refractaires. Pour 64 %, une sedation a ete realisee et 75 % ont fait l’objet d’une discussion de limitation ou d’arret des traitements. Conclusion Les services specialises sont confrontes a des situations de fin de vie. Aux symptomes majeurs et refractaires frequents correspond souvent la realisation d’une sedation. Les moyens mis en place par ces services sont reels mais certains manques ont ete constates notamment concernant la formation et le soutien des soignants, l’adaptation des locaux ou le soutien des familles.

Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed. Child demographic and clinical characteristics and PPC consultation and EOL care patterns were abstracted. Children who received PPC (PPC group) were compared with those who did not (non-PPC group). Children who received PPC consultation (n = 37) did not differ from the non-PPC group (n = 110) with respect to demographic or clinical characteristics, except they were more likely to have undergone unrelated allogeneic SCT (PPC, 68%; non-PPC, 39%; P = .02) or to have died from treatment-related toxicity (PPC, 76%; non-PPC, 54%; P = .03). PPC consultation occurred at a median of .7 months (interquartile range [IQR], .4 to 4.2) before death. PPC consultations most commonly addressed goals of care/decision-making (92%), psychosocial support (84%), pain management (65%), and non-pain symptom management (70%). Prognosis discussions (ie, the likelihood of survival) occurred more commonly in the PPC group (PPC, 97%; non-PPC, 83%; P = .04), as did resuscitation status discussions (PPC, 88%; non-PPC, 58%; P = .002). These discussions also occurred earlier in the PPC group, for prognosis a median of 8 days (IQR, 4 to 26) before death compared with 2 days (IQR, 1 to 13) in the non-PPC group and for resuscitation status a median of 7 days (IQR, 3 to 18) compared with 2 days (IQR, 1 to 5) in the non-PPC group (P .001 for both of the timing of prognosis and resuscitation status discussions). The PPC group was also was more likely to have resuscitation status documented (PPC, 97%; non-PPC, 68%; P = .002). With respect to patterns of care, compared with non-PPC, the PPC group was as likely to die in a medicalized setting (ie, the hospital) (PPC, 84%; non-PPC, 77%; P = .06) or have hospice care (PPC, 22%; non-PPC, 18%; P = .6). However, among children who died in the hospital, those who received PPC were more likely to die outside the intensive care unit (PPC, 80%; non-PPC, 58%; P = .03). In addition, the PPC group was less likely to receive intervention-focused care such as intubation in the 24 hours before death (PPC, 42%; non-PPC, 66%; P = .02) or cardiopulmonary resuscitation (PPC, 3%; non-PPC, 20%; P = .03) at EOL. Children who received PPC for at least a month were more likely to receive hospice care (PPC, 41%; non-PPC, 5%; P = .01). Children who underwent SCT and did not survive were likely to die in a medicalized setting, irrespective of PPC. However, PPC was associated with less intervention-focused care and greater opportunity for EOL communication and advance preparation. In the intense, cure-oriented SCT setting, PPC may facilitate advance care planning in this high-risk population.

Context Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist in order to improve and increase access to PPC for children in need. Objectives Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC community needs assessment are described. Methods A mixed-method descriptive design with multiple stages incorporating different methodological approaches was utilized. These included: (1) literature review, (2) community profile, (3) survey and interview questionnaire development, (4) windshield survey, (5) identifying and interviewing key informants, and (6) quantitative survey of the state’s hospice organizations. Key themes (Providing PPC, PPC Environment, Collaboration and Future of PPC) and subthemes emerged which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. Results Are described in a subsequent manuscript. Conclusion This approach can be utilized by other state organizations, coalitions, governments or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care.

The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all children who would benefit.1,2 High quality pediatric palliative care is essential for these children. Collaborative team-based methods focused on improving quality of life have shown to improve outcomes in physical, emotional, and cognitive domains.3 Palliative care involvement at the time of diagnosis rather than just at the end of life has moved coordinated care upstream. All clinicians can and should deliver palliative care. The Joint Commission recommends having patient-centered palliative care services available for children, and the Centers for Medicare and Medicaid Services is reimbursing clinicians for this coordinated care. This article details how all pediatric clinicians can positively influence the care of seriously ill children by incorporating palliative care principles into their daily care, resulting in better outcomes for their patients and families.

Purpose Outcomes in pediatric patients with ventricular assist devices (VADs) for advanced heart failure (HF) are improving, but the risk of associated morbidity and mortality remains substantial. Few data exist on the involvement of pediatric palliative care (PPC) in this high-risk patient population, while recent literature on critical congenital heart disease and other life-threatening pediatric diseases suggest clear benefit of early PPC involvement. In this study we aimed to characterize the extend of palliative care service's participation in the care of patients requiring VAD placement at our institution. Methods A single-center retrospective chart review analyzing all VAD patients at a large pediatric center over a 4 year period was performed and assessed incidence, timing and extend of palliative care subspecialty involvement. Results Between January 2014 and December 2017, 55 HF patients underwent VAD implantation at our institution. Palliative care utilization in patient care steadily increased over consecutive years (2014 - Conclusion PPC services have been utilized in pediatric VAD patients with increasing frequency at our institution in recent years. Early involvement with advanced heart failure patients, prior to VAD implant, occurred in the majority of patients. While total numbers are small, palliative care support appears to lead to more frequent discussion of goals of care and advanced directives.

Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service.

The aim of this integrative review was to increase knowledge about parents' experiences of palliative care when their child is dying or has died due to illness using Whittemore and Knafl (2005) analysis process. Computerized databases were used to search the literature. Nine papers met the inclusion criteria. The analysis resulted in five categories: genuine communication, sincere relationships, respect as an expert, and alleviation of suffering and need of support, including 15 subcategories. Health professionals need education to provide high-quality pediatric palliative care. They especially need training concerning existential issues, and further studies need to be performed.

This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.

There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.