Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization.

OBJECTIVE: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use. STUDY DESIGN: Retrospective review of individuals ages 1 month to 21 years receiving an in-person HBHPC provider (MD/DO or APN) HV through 2 HBHPC programs in the Midwest from January 1, 2013, through December 31, 2018. Descriptive statistics were calculated for healthcare use variables. Paired t test or Wilcoxon signed-rank test compared the changes in healthcare use the year before and year after initial provider HVs. RESULTS: The cohort included 195 individuals (49% female), with diagnoses composed of 49% neurologic, 30% congenital chromosomal, 11% oncologic, 7% cardiac, and 3% other. After implementation of HBHPC services, these patients showed decreases in the median (IQR) number of intensive care unit days (before HV, 12 [IQR, 4-37]; after HV, 0 [IQR, 0-8]; P < .001); inpatient admissions (before HV, 1 [IQR, 1-3]; after HV, 1 [IQR, 0-2]; P = .005); and number of inpatient days (before HV, 5 [IQR, 1-19]; after HV, 2 [IQR, 0-8]; P = .009). There was an increase in clinically relevant phone calls to the HBHPC team (before HV, 1 [IQR, 0-4] vs after HV, 4 [IQR, 1-7]; P < .001) and calls to the HBHPC team before emergency department visits (before HV, 0 [IQR, 0-0] vs after HV, 1 [IQR, 1-2]; P < .001). CONCLUSION: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.

Experience With Medical Marijuana in a Pediatric Palliative Care Clinic: Case Report.

Children receiving palliative care have life-limiting or life-threatening conditions, which include symptoms ranging from unpleasant to intolerable suffering. We describe three diverse cases of medical marijuana within ambulatory pediatric palliative care, highlighting use for spasticity, refractory seizures, and cancer-related symptoms. Included are caregiver perspectives of their child's experience with medical marijuana. This population has high potential for positive effects from medical marijuana therapy, particularly for maximizing quality of life.

Children's understanding of dying and death: A multinational grounded theory study.

OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. METHODS: This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. RESULTS: Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

Refining the referral criteria of persons who have been burned to palliative care: A modified Delphi approach.

A paucity of evidence is available to guide integration of specialist palliative care into burn care. This study's purpose was to develop consensus on referral criteria using a modified Delphi process. Content experts were defined as burn or palliative care providers in locations where the teams have collaborative history; published at least one manuscript or presented nationally on burn and palliative care collaboration; or nomination as having equivalent expertise. N = 202 eligible persons were identified; n = 43 participated in Iteration 1 and Iteration 3 retained 79%. Iteration 1 invited participants to rank published referral criteria on a 9-point Likert-style scale. Consensus was defined as an interquartile range ≤ 2. Consensus items with median scores ≤ 3 were dropped from further consideration. Consensus items with median scores ≥ 7 were considered to be important and excluded in Iteration 2. Iteration 2 which presented non-consensus items with their associated median (interquartile range) and the participant's own ranking from Iteration 1. Iteration 3 presented three models; participants ranked in order of preference and suggested revisions. Consensus was achieved on a final set of criteria for specialist palliative care for persons who sustain burn injuries. Future research should prospectively evaluate the criteria against meaningful outcomes.

Supporting and Contextualizing Pediatric ECMO Decision-Making Using a Person-Centered Framework.

AbstractThere is a critical need to establish a space to engage in careful deliberation amid exciting, important, necessary, and groundbreaking technological and clinical advances in pediatric medicine. Extracorporeal membrane oxygenation (ECMO) is one such technology that began in pediatric settings nearly 50 years ago. And while not void of medical and ethical examination, both the symbolic progression of medicine that ECMO embodies and its multidimensional challenges to patient care require more than an intellectual exercise. What we illustrate, then, is a person-centered framework that incorporates the philosophy and practice of palliative care and care-based ethical approaches. This person-centered framework is valuable for identifying and understanding challenges central to ECMO, guides collaborative decision-making, and recognizes the value of relationships within and between patients, families, healthcare teams, and others who impact and are impacted by ECMO. Specifically, this person-centered approach enables caregivers to provide compassionate and effective support in critical, and often urgent, situations where conflicts may emerge among healthcare team members, families, and other decision makers. By reflecting on three cases based on actual situations, we apply our person-centered framework and identify those aspects that were utilized in and informed this project. We aim to fill a current gap in the pediatric ECMO literature by presenting a person-centered framework that promotes caregiving relationships among hospitalized critically ill children, families, and the healthcare team and is supported through the philosophy and practice of palliative care and clinical ethics.

Goals of Care Among Parents of Children Receiving Palliative Care.

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

Pediatric Palliative Care Referral Criteria Following Moderate or Severe Traumatic Brain Injuries.

Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources. Methods: This is an IRB-approved retrospective chart review study from January 1, 2017, to October 1, 2021, of persons presenting to the emergency department of a 467-bed quaternary pediatric hospital in the midwest with a moderate or severe TBI (ICD-10: S.06.2X and S.06.5X9A). Participants were excluded if they were admitted directly from an outside hospital or if the diagnosis code did not meet criteria. Results: N = 33 patients presented with moderate or severe TBI, of which 17 had PC consult. There were no significant between-group demographic differences. Significant differences in clinical and outcome variables formed the basis of proposed referral criteria for specialist PC for children and adolescents sustaining a moderate-to-severe traumatic brain injury. Discussion: PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.

Simultaneous Home-Based Pediatric Hospice and Palliative Care: Characterizing the Population.

Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous community hospice and pediatric palliative care. Objective: Characterize a population of children and adolescents receiving simultaneous pediatric home-based hospice and palliative care (HBHPC). Design/Setting/Subjects: Post hoc analysis of retrospective study of N = 31 patients enrolled in pediatric HBHPC, with comparison to larger two-site sample receiving either hospice or palliative care at home. Measurement: Demographic and clinical data extracted from the electronic medical record. Results: Data characterizing the population receiving simultaneous care are presented; compared with those receiving either hospice or palliative care at home, the only significant differences were a greater proportion of decedent children and greater billable hours. Conclusions: Findings support the lack of meaningful distinction between hospice and palliative care in pediatrics.

Integrating Palliative Care into Burn Care: A Retrospective Application of Criteria for Appropriate Referral.

Burn injuries often require complex interdisciplinary care. Despite potential benefits, consultation with specialist palliative care typically occurs in 2% of burn admissions, due largely to lack of availability and misconceptions concerning palliative care. Criteria to guide consultation with specialist palliative care have been developed at this institution. The purpose of this study was to quantify the sensitivity and specificity of these criteria, and then optimize them. Retrospective examination of 388 admissions over 15 months at this adult and pediatric Burn Center were conducted. Chi-square or Fisher's exact test for categorical variables and Wilcoxon Rank Sum test for continuous variables were used to test for between-group differences in demographic and clinical characteristics. Logistic regression model was built to determine modified Baux cut-off score using Youden index (J) value. Criteria were sensitive (0.96) and specific (0.90), though with a low positive predictive value (0.43). Persons with lengths of stay greater than one week, advanced directives, Allow Natural Death orders, and/or deterioration events were significantly more likely to have had palliative care consulted. There were significant between-group differences (with/without palliative care consultation) based on burn surface area, modified Baux score, and mortality risk. Potential criteria revisions are proposed. Prospective adherence to revised criteria could provide useful guidance to providers and benefit to patients and families.

Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study.

Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.

End of Life Therapeutic Videography in Pediatrics: Feasibility and Acceptability.

Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research by performing a more comprehensive examination of children's experiences with life-shortening illness. Methods: Eligible patients ages eight and older made a legacy video with the assistance of investigative staff and completed a questionnaire to evaluate their emotional states before and after making the video. Bereaved parents also received a questionnaire to assess the impact of the legacy. Results: Nine patients enrolled and eight completed the study through the therapeutic exit interview. Most reported decreased anxiety and a positive experience. Conclusion: Therapeutic videography is feasible and acceptable to accomplish and can improve the emotional state of participants. Conducting research requiring active participation of patients very near the end of life proved to be challenging.

Palliative Care and Burn Care: Empirically Derived Referral Criteria.

Burns frequently require complex interdisciplinary care. Specialist palliative care (PC) minimizes suffering, aids in decision making, and provides family support in addition to end-of-life care. Specialist PC is a limited resource, best conserved by identifying persons most likely to benefit from a PC referral. Little guidance is available for clinicians on whether and when to refer to PC. This study's purpose was to identify referral criteria using a mixed-methods approach. Data were examined for between-group differences using Fisher's exact, chi-square, or Wilcoxon Rank Sum tests. Qualitative thematic analysis was used to analyze PC provider notes to describe interventions provided. These data formed initial referral criteria, which were reviewed by an expert panel. Significant between-group differences included dying in the burn center; whether multiple patients were transported to the burn center from one event; and ventilator days. Four themes emerged from qualitative analysis. These included managing physical aspects of care; clarifying goals of care; managing end-of-life care; and managing patient/family psychosocial distress. Expert panel input clarified referral criteria language and supplemented the proposed criteria. We present empirically derived referral criteria to guide burn providers in referring persons for specialist PC. Subsequent testing is required to determine their efficacy in improving patient/family outcomes.

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Importance: The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined. Objective: To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences. Design, Setting, and Participants: This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022. Exposures: Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information. Main Outcomes and Measures: Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis. Results: A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (ß [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69). Conclusions and Relevance: Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study. Trial Registration: ClinicalTrials.gov Identifier: NCT02693665.

Reiki Therapy for Very Young Hospitalized Children Receiving Palliative Care.

Background: Approximately half of children receiving palliative care are under age five; however, there are a few studies exploring palliative care interventions for this population. The purpose of this study was to evaluate the effects of Reiki on pain, stress, heart, and respiratory rates, oxygenation, and quality of life (QoL) in hospitalized young children receiving palliative care services. Methods: In this single-group pilot study, hospitalized children receiving palliative care who were aged 1-5 years received two Reiki sessions per week for 3 weeks. Physiologic measures were assessed pre/post each session, and parent report measures of pain and QOL were collected at baseline, 3 weeks, and 6 weeks. The parent rating of Reiki's perceived efficacy and their own symptoms were also measured. Results: Sixteen families consented. Children had a mean age of 26 months and included nine boys and seven girls. Results were not significant but there were medium-to-large clinical effect sizes for children's QoL, stress, oxygenation, heart, and respiratory rates. Parents' physical and mental health scores decreased over time. Children exhibited signs of relaxation such as quiet sleep post-Reiki versus active awake pre-Reiki session. Conclusion: Reiki is a noninvasive relaxing therapy that is useful for hospitalized young children receiving palliative care. The children reacted positively in both action and outcome measures. Multisite studies with larger sample sizes are needed to be able to generate enough scientific evidence to fully recommend Reiki as an adjunct for pain management.

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.

BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHODS: Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULTS: Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSIONS: High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms.

CONTEXT: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty. OBJECTIVES: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress. METHODS: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score. RESULTS: The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone. CONCLUSIONS: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.

A Retrospective Examination of Home PCA Use and Parental Satisfaction With Pediatric Palliative Care Patients.

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.

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.

Importance: Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report. Objective: To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure. Design, Setting, and Participants: Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children's hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites. Exposures: Analyses were stratified by patients' demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non-mutually exclusive complex chronic condition categories. Main Outcomes and Measures: Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score. Results: Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13). Conclusions and Relevance: In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care.

End of Life Outside of "Business Hours": A Retrospective Review Evaluating Time of Death and Provider Time at End of Life.

Introduction: Pediatric palliative care (PPC) benefits patients and families, while potentially creating emotional and resource-management burdens for providers. This study's purpose was to characterize the occurrence of deaths attended by PPC providers outside of "business hours." Methods:N = 786 PPC patients at a single center died between 2008 and 2015. Descriptive statistics were prepared for all variables (Wilcoxon rank-sum test for continuous; chi-square or Fisher's exact test for categorical). Results:N = 434 (55%) of deaths occurred outside of business hours; n = 332 (70%) were attended by PPC. Time spent attending a death was not significantly longer when other PPC providers were present but was when certain tasks were performed (coordination with medical examiner and memory making). Conclusion: The occurrence of the majority of deaths outside of business hours has significant implications for service delivery models, provider emotional health, and health care value.