Pediatric Palliative Care Involvement Research Articles

Palliative Care Referral Patterns and Implications for Standardization in Cardiac ICU.

Evidence suggests that pediatric palliative care involvement (PPC) is beneficial to medically complex patients. Historically, PPC involvement has been overlooked or delayed and varies by institution but PPC awareness has increased in cardiovascular ICUs (CVICU) and so we investigated frequency and timeliness of PPC referral for patients dying in ICU. Retrospective study of pediatric cardiac patients experiencing death in ICU to review PPC presence and timing of initial PPC, most recent PPC, and interventions, therapies, CPR, and presence of do-not-resuscitate DNR discussion. Fifty-four patients died during a 5-year period aged 11d-17y (54% male). PPC involvement occurred in 40/54 (74%). Of those patients without PPC, the Center to Advance Palliative Care (CAPC) guidelines would have supported PPC in 11/14 (79%). DNR discussion was more likely in PPC patients (63% vs 14%; p = 0.0011), though often only on DOD. Comparing prior to DOD, PPC patients were still more likely to have DNR discussion (55% vs 0%; p = 0.0003). PPC patients were no less likely to have CPR on DOD (28% vs 43%, p = 0.29). PPC occurred frequently in patients experiencing death in CVICU. However, frequently the initial PPC occurred within a week or day of death. Patients without PPC would often qualify under published guidelines. Standardization, timing, and patient identification for PPC will expand efficacy in CVICU.

Moral Distress and Pediatric Palliative Care.

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional association's) moral stance. In pediatric healthcare settings, managing and mitigating feelings of moral distress can be particularly difficult to navigate through because of the intricate dynamics between the pediatric patient, parent and/or legal guardians, and clinicians. The proactive integration of an experienced pediatric palliative care (PPC) team can be an appropriate step toward reducing clinicians feeling overwhelmed by various case-specific and team management issues that contribute to the development of moral distress among healthcare professionals. Based on our experiences in a free-standing, quaternary pediatric hospital, the involvement of PPC can help reframe the approach to challenging situations, enhance communication, and provide guidance to the care team, patients, and families. Moreover, PPC teams can benefit other multidisciplinary team members through education on respecting the plurality of values of diverse families and patients and consideration of ethical implications during morally challenging situations.

Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study.

Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may benefit from PPC involvement is essential. Objectives: To create a brief screening tool, the Pediatric Intensive Care-Pediatric Palliative Care Screen, identifying PICU patients most likely to benefit from PPC involvement and to assess if weekly screening with this screening tool increases the number of PPC consults placed in the PICU. Methods: This is a prospective investigational single-center study in a 24-bed PICU at a U.S. tertiary care children's hospital. Weekly screening was completed by two clinicians for a six-month period between April and October 2022. Results: A total of 162 screens were completed on 124 individual patients; 47 screens were positive (29%), and 115 were negative (71%). Fourteen new PPC consults were placed from the PICU with one PPC consult for every 36.7 compared with one PPC for every 41.4 admissions the previous year. Of the positive screens, 68% had two or more comorbidities at the time of PICU admission versus 26% of negative screens (p < 0.001). Technology dependence (57% vs. 5%, p < 0.001) and presence of congenital defects (26% vs. 10%, p = 0.013) were significantly more common among positive screens. Conclusions: Weekly screening with a short, 7-question screening tool can identify PICU patients most likely to benefit from a PPC consult. Patients with chronic illnesses and baseline comorbidities are most likely to screen positive.

Comparing Pediatric Surgeons' and Palliative Care Pediatricians’ Palliative Care Practices and Perspectives in Pediatric Surgical Patients

PurposeThe nature of interactions between surgical and pediatric palliative care (PPC) teams caring for seriously ill children is unknown. This study compares pediatric surgeons' and PPC physicians’ perspectives and practices regarding PPC in surgical patients. MethodsA survey was administered to members of the American Pediatric Surgical Association and Pediatric Interest Group of the American Academy of Hospice and Palliative Medicine. ResultsOne hundred twenty-four pediatric surgeons (31% female, 17.2 mean years of experience) and 71 PPC physicians (69% female, 10.1 mean years of experience) participated. Forty-three percent of surgeons reported consulting PPC often for children with serious illnesses. However, most PPC physicians (67%), said they are rarely/never consulted by surgeons (p = 0.002). PPC physicians were more likely to report that PPC involvement was too late (43% vs 21%, p = 0.005). More surgeons than PPC physicians felt that an appropriate time for PPC consultation was during serious illness deterioration (30% vs 7%, p = 0.05), whereas PPC physicians preferred consultation at diagnosis (54% vs 34%, p = 0.05). More PPC physicians (67%) than surgeons (17%) agreed that invasive interventions could be considered a form of PPC (p = 0.002). The most reported barrier to PPC consultation by surgeons (29%) was concern that parents would think the surgical team was giving up. PPC physicians were more likely to perceive barriers to consultation by surgeons than surgeons themselves (p < 0.001). ConclusionWhile pediatric surgeons value PPC involvement, surgical culture and misperception of parental resistance to PPC involvement lead to palliative care consultation only when illness acuity and severity are high, the possibility of curability is low, and death seems imminent. Seeking to understand patient and family priorities in care, managing patient and parental psychological distress, and treating non-surgical symptoms are areas where PPC can improve patient care. Barriers to PPC use and self-reported knowledge gaps in PPC provision may be mitigated by formalized PPC training for surgeons and intentional collaboration between the two groups. Type of StudySurvey. Level of EvidenceN/A.

Increasing Trend and Effects of Pediatric Palliative Care on Children With Noncancer Diagnoses.

Pediatric palliative care (PPC), especially among noncancer pediatric patients, faces challenges including late referral, limited patient care, and insufficient data for Asian patients. This retrospective cohort study used the integrative hospital medical database between 2014 and 2018 to analyze the clinical characteristics, diagnoses, and end-of-life care for patients aged less than 20 who had died in our children's hospital, a tertiary referral medical center implementing PPC shared-care. In our cohort of 323 children, 240 (74.3%) were noncancer patients who a younger median age at death (5 vs. 122 months, P < 0.001), lower rate of PPC involvement (16.7 vs. 66%, P < 0.001), and fewer survival days after PPC consult compared to cancer patients (3 vs. 11, P=0.01). Patients not receiving PPC had more ventilator support (OR 9.9, P < 0.001), and less morphine use on their final day of life (OR 0.1, P < 0.001). Also, patients not receiving PPC had more cardiopulmonary resuscitation on the last day of life (OR 15.3, P < 0.001) and died in the ICU (OR 8.8, P < 0.001). There was an increasing trend of noncancer patients receiving PPC between 2014 and 2018 (P < 0.001). High disparities exist between children receiving PPC in cancer versus noncancer patients. The concept of PPC is gradually becoming accepted in noncancer children and is associated with more pain-relief medication and less suffering during end-of-life care.

Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America

Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.

Palliative Care in Children With Advanced Heart Disease in a Tertiary Care Environment: A Mini Review.

Palliative care for children continues to evolve. More recently, this has also been true in the field of pediatric cardiology, particularly for children with advanced heart disease. In these children, similarly to children with cancer, treatment successes are offset by the risks of long-term morbidities, including premature death. This mini review aims to provide an overview of current knowledge on children suffering from advanced heart disease, their medical care during various phases of illness (including the palliative and end-of-life phase), symptom burden, experiences of parents, prognostic understanding of parents and physicians, and current status of the involvement of pediatric palliative care. In conclusion, the suffering of these children at the end of their young lives is pronounced and many parents feel prepared neither for medical problems nor for the child’s death. An effective and mutually trusting partnership between pediatric cardiology and pediatric palliative care would appear to be a prerequisite for the timely involvement of palliative care in further supporting these children and their families.

Surgical Interventions With an Interdisciplinary Approach at End of Life.

Surgical care in critically ill children is an important component of the interdisciplinary approach to delivery of high-quality comprehensive care. Yet the traditional hospice model has often excluded surgical care because of perceived risk of suffering and questions of futility in the face of a terminal condition. Pediatric palliative care is distinct from its adult counterpart in its relatively low prevalence of death and longer length of hospice enrollment. Fewer than 45 000 children die in the United States each year, and the average length of pediatric palliative care involvement is >300 days, with only 30% mortality at 1 year.1,2 Thus there are many children facing life-threatening conditions whose families are constantly deciding whether and how to intervene, medically or surgically.In this issue of Pediatrics, Traynor et al describe the surgical procedures that occur in terminal hospitalizations at 49 children’s hospitals using data from the Pediatric Health Information Systems database,3 finding that nearly half of children aged <20 years have a surgical procedure in their terminal hospitalization. This finding is important for surgeons engaging in shared decision-making with patients receiving palliative care and their families.4–6 This also emphasizes the importance of having surgeons as allied members of the interdisciplinary palliative care team.Traynor et al also highlight racial disparities in the rates of surgical care for Hispanic, Asian American, and Black children compared with White children during this final admission. Health disparities have been shown at end of life in adult and pediatric care.7,8 Although the data do not yield the reason behind the disparity, as a field we should be paying specific attention to the interventions that are offered to patients and preventing systemic bias.Missing from this work is the context of the decision to pursue surgery. What was the surgeon’s and family’s understanding of their child’s pending mortality before pursuing intervention? Did the family know this was a terminal condition and/or hospitalization? Was the child’s code status discussed before pursuing surgery? Similarly, this study does not reveal the surgeon’s or the family’s intentions with surgery (eg, life prolongation or to mitigate a distressing symptom). Although it is important to know that up to 50% of families are choosing surgeries during a terminal hospitalization, Traynor et al rightfully acknowledge the need for future research, in which researchers ought to consider how many families chose not to undergo surgery, who had palliative care decisional support when considering surgery, and how many patients received surgery but then died after discharge.9 We strive for goal-concordant care and therefore should focus on aligning care with family preferences and values.What is clear from the work by Traynor et al is that families and surgeons are frequently pursuing surgical interventions in terminal hospitalizations. Pediatricians need to be aware of this, embrace that surgery has a role in end-of-life care, and join with our surgical colleagues to ensure outcomes that meet the needs of patients and families, even while in hospice.

Interdisciplinary clinician perspectives on an embedded palliative oncology model in pediatric cancer care.

9 Background: Integration of palliative care into cancer care is recognized as best practice by international oncology and pediatrics organizations. However, optimal strategies for integration of pediatric palliative care (PPC) within cancer care remain understudied. While the majority of PPC provision for cancer patients occurs through subspeciality consultation, growing evidence suggests that models embedding PPC within cancer care have the potential to improve quality of care. Embedded models rely on partnerships with multidisciplinary clinicians, whose perspectives regarding this model are not well known. Methods: We conducted 25 focus groups with 175 clinicians in an academic pediatric cancer center, with groups stratified by discipline (physicians, advance practice providers (APPs), nurses, psychosocial providers) and by care team (hematologic malignancy, bone marrow transplant, solid tumor, brain tumor). Focus groups were led by trained research facilitators and audio-recorded for subsequent targeted content analysis to identify clinician perspectives regarding embedded PPC models. Results: Across 4 physician, 5 APP, 12 nurse, and 4 psychosocial focus groups, 25 physicians, 30 APPs, 71 nurses, and 49 psychosocial providers participated, respectively. When asked to describe features of an “ideal” PPC model, physicians, APPs, and nurses predominantly discussed care delivery and identified early integration of PPC into cancer care as a core feature of an ideal model. Physicians, nurses, and psychosocial providers also emphasized the importance of having a formalized, structured care model. The need for collaboration was the dominant theme for psychosocial providers. Clinicians in all disciplines identified potential benefits from an embedded model, including access to PPC across care settings, normalization of PPC integration, and emphasis on collaboration, teamwork, communication, and earlier PPC involvement. Physicians, APPs, and nurses anticipated similar challenges with an embedded model, including possible reticence of oncology providers and inadequate PPC staffing. Nurses, APPs, and psychosocial providers also voiced concern about potential lack of clarity in delegation of roles and responsibilities between PPC and oncology providers. Conclusions: Pediatric oncology multidisciplinary providers recognize the potential value of an embedded model for integration of PPC in the care of children with cancer. Though providers at times identified similar themes with respect to ideal PPC provision and the benefits and challenges to an embedded model, some identified priorities varied by discipline. These findings highlight the importance of integrating varied interdisciplinary perspectives when developing an embedded care model to align with priorities of diverse pediatric cancer stakeholders.

Quality measures for end-of-life care for children with cancer: A modified Delphi approach.

The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).

Palliative Care Referrals in Cardiac Disease.

With evidence of benefits of pediatric palliative care (PPC) integration, we sought to characterize subspecialty PPC referral patterns and end of life (EOL) care in pediatric advanced heart disease (AHD). In this retrospective cohort study, we compared inpatient pediatric (<21 years) deaths due to AHD in 2 separate 3-year epochs: 2007-2009 (early) and 2015-2018 (late). Demographics, disease burden, medical interventions, mode of death, and hospital charges were evaluated for temporal changes and PPC influence. Of 3409 early-epoch admissions, there were 110 deaths; the late epoch had 99 deaths in 4032 admissions. In the early epoch, 45 patients (1.3% admissions, 17% deaths) were referred for PPC, compared with 146 late-epoch patients (3.6% admissions, 58% deaths). Most deaths (186 [89%]) occurred in the cardiac ICU after discontinuation of life-sustaining therapy (138 [66%]). Medical therapies included ventilation (189 [90%]), inotropes (184 [88%]), cardiopulmonary resuscitation (68 [33%]), or mechanical circulatory support (67 [32%]), with no temporal difference observed. PPC involvement was associated with decreased mechanical circulatory support, ventilation, inotropes, or cardiopulmonary resuscitation at EOL, and children were more likely to be awake and be receiving enteral feeds. PPC involvement increased advance care planning, with lower hospital charges on day of death and 7 days before (respective differences $5058 [P = .02] and $25 634 [P = .02]). Pediatric AHD deaths are associated with high medical intensity; however, children with PPC consultation experienced substantially less invasive interventions at EOL. Further study is warranted to explore these findings and how palliative care principles can be better integrated into care.

Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population

ContextConcerns 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. ObjectivesDefine and describe the population of children with PPC involvement for whom there was concern for maltreatment. MethodsSingle-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. ResultsAmong 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. ConclusionPPC 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.

Early Integration of Palliative Care in Single Ventricle Families: A Quality Improvement Project for Enhanced Family Support

Background: Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of mortality throughout their lifespan, particularly in their first year of life. The early involvement of pediatric palliative care (PPC) for children with SV physiology allows PPC providers to establish a relationship with the family and provide continuity throughout their journey. The intense care needed for these children and families predicates the need for PPC consults to be routine; however, medical staff are reluctant to broach the concept of PPC to families because of the association with …

Palliative Care Engagement for Pediatric Ventricular Assist Device Patients: A Single-Center Experience.

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. We aimed to characterize the extent of palliative care involvement in the care of patients requiring VAD placement at our institution. Single-center retrospective chart review analyzing all VAD patients at a large pediatric center over a 4 year period. Timing and extent of palliative care subspecialty involvement were analyzed. Between January 2014 and December 2017, 55 HF patients underwent VAD implantation at our institution. Pediatric palliative care utilization steadily increased over consecutive years (2014: <10% of patients, 2015: 20% of patients, 2016: 50% of patients, and 2017: 65% of patients) and occurred in 42% (n = 23) of all patients. Of these, 57% (n = 13) occurred before VAD placement while 43% (n = 10) occurred after implantation. Patients who died during their VAD implant hospitalization (24%, n = 13) were nearly twice as likely to have PPC involvement (62%) as those who reached transplant (38%). Of those who died, patients who had PPC involved in their care were more likely to limit resuscitation efforts before their death. Four patients had advanced directives in place before VAD implant, of which three had PPC consultation before device placement. Three families (5%) refused PPC involvement when offered. Pediatric palliative care utilization is increasing in VAD patients at our institution. Early PPC involvement occurred in the majority of patients and appears to lead to more frequent discussion of goals-of-care and advanced directives.

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

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

PC-FACS

PC-FACS

PC-FACS

PC-FACS

Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model.

Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.

Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016.

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses. Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients. Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP. Setting: Large, multidisciplinary tertiary care center in a rural state. Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death. Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC. Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.

Palliative Care Involvement in Pediatric VAD Patients - A Single Center Experience

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.