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.

"It's a Different Conversation": Qualitative Analysis of Pediatric Home-based Hospice/Palliative Care Visits' Perceived Value.

Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions-those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden. Provider home visits are a core feature; however, the travel time and human resource allocation are significant challenges. Balancing the appropriateness of this allocation requires further characterization of the value of home visits to families and identification of the value domains of HBHPC for caregivers. For study purposes, we defined a "home visit" as an in-person visit by a physician or advanced practice provider to a child's residence. Methods: The methods include a qualitative study using semistructured interviews and a grounded theory analytic framework enrolled caregivers of children aged 1 month to 26 years receiving HBHPC from either of 2 U.S. pediatric quaternary institutions between 2016 and 2021. Results: Twenty-two participants were interviewed; the mean (SD) interview duration was 52.9 (22.6) minutes. The final conceptual model has 6 major themes: communicating effectively, fostering emotional and physical safety, building and maintaining relationships, empowering the family, seeing the bigger picture, and sharing burdens. Conclusions: Caregiver-identified themes demonstrated improved communication, empowerment, and support from receiving HBHPC, which can facilitate enhanced family-centered, goal-concordant care.

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.

Fulfilling 6 Domains of Health Care Quality: A Qualitative Parental Caregiver Study of Pediatric Telehealth During a Pandemic.

Using qualitative methods, we examine telehealth care quality from the perspective of parents of pediatric patients during a pandemic. We fill a gap in the literature essential for measuring effectiveness of pediatric telehealth. A total of 22 participants (n = 21 female; n = 1 male) enrolled in 1 of 9 interviews and focus groups conducted in 2021. Transcribed data were thematically analyzed and organized based on the 6 domains of quality health care by the Institute of Medicine (IOM). Analyzed data revealed 7 themes and 52 codes. Pediatric telehealth visits were perceived as efficient, timely, safe, and generally effective by parents for their child's health care. Participants experienced equal or greater time with their child's care provider via telehealth than through in-person visits. Qualitative results directly align with IOM domains of quality health care and contribute to the growing literature and evidence that may lead to improved telehealth outcomes and better preparedness for emergent public health events.

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.

Feasibility and Acceptability: Narrative Writing with Caregivers in Pediatric Critical Care.

Background: Pediatric intensive care unit (PICU) admissions are caregiver stressors with potential long-term impact. Writing interventions have shown health benefits, although not yet with parents writing during their child's PICU admission. Objective: The study objective was to quantify intervention acceptability and feasibility and to qualitatively examine written texts. Design: This is a proof-of-concept three-arm randomized trial. Setting and Subjects: Subjects were legal caregivers ≥18 years, able to read and write English, and of children ≤18 years in a U.S. PICU for ≥1 day. Measurements: Treatment Acceptability Questionnaire, enrollment rates, completed encounters, and qualitative thematic analysis. Results: Acceptability was high (49% enrollment; mean [standard deviation] Treatment Acceptability Questionnaire scores: M = 24.8 [2.4]). Feasibility was 100% scheduled-to-completed sessions. Thematic analysis revealed two themes (people and relationships); texts were more cognitive than emotional. Conclusions: Caregivers, provided resources and supported by a narrative medicine facilitator, are likely to engage in expressive writing. The intervention warrants subsequent development.

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.

Chaplains and telechaplaincy: best practices, strengths, weaknesses-a national study.

Telechaplaincy is the use of telecommunications and virtual technology to deliver religious/spiritual care. It has been used for decades, but chaplains' understanding of telehealth lags behind other disciplines. The purpose of this study was to describe the use of telechaplaincy in the United States and chaplains' perceptions of the practice. Researchers surveyed chaplains through chaplain-certifying-body email-listservs, then conducted in-depth interviews with 36 participants identified through maximum variation sampling. Quantitative analysis and qualitative, thematic analysis were conducted. Quantitative results show that in 2019, approximately half of surveyed chaplains performed telechaplaincy. Rural chaplains were more likely to have practiced. Chaplains who had not practiced were more willing to try if they believed it was effective at meeting religious/spiritual needs. Qualitative findings describe chaplains' perceptions of strengths, weaknesses, and best practices.

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.

Understanding Drivers of Telemedicine in Pediatric Medical Care.

Purpose: As the demand for telemedicine services continues, greater knowledge about health care delivery preferences can inform high quality, efficient care. The present study sought to evaluate patient and family characteristics that may influence telemedicine utilization, particularly the choice between telephone and video telemedicine visits. Methods: This is a single-site cross-sectional, mixed methods study aimed at identifying factors associated with use of telephone and video telemedicine visits with pediatric patients and their families. Results: Seven hundred seventy-five (n = 775) caregivers completed a survey and 22 caregivers participated in follow-up focus groups and interviews. Findings indicate that female caregivers, those with higher education levels, and those with experience with technology were more likely to choose video telemedicine visits. Qualitative feedback provided several valuable recommendations based on patient/family experiences, which fell into four categories, including scheduling, accessibility, treatment resources, and care coordination. Conclusion: Findings demonstrate that previous experience, familiarity, and technology access may be important drivers in health care modality preference. Key elements that emerged relevant to user satisfaction and overall quality of the telemedicine experience: caregiver choice on visit type (telemedicine vs. in-person), child health care needs, and telemedicine education/training. As society moves toward pay-per-performance and value-based reimbursement, it is imperative that we focus on experience, health care needs, and training to improve patient experience and lower health care costs.

Examining Illness through Pediatric Poetry and Prose: A Mixed Methods Study.

The purpose of this mixed-methods retrospective study was to characterize the linguistic and narrative properties of texts generated by hospitalized pediatric patients who are experiencing significant illnesses. These young writers voluntarily participated in a narrative intervention through a program at a children's hospital that serves diverse urban and rural populations. The primary aim was to use interpretive theoretical analysis and linguistic analysis to test the following hypotheses: (1) hospital-generated texts have linguistic characteristics consistent with texts written to improve health outcomes; (2) stories told by pediatric patients through poetry and prose can be classified using Frank's illness narrative types, serving as a starting point to situate caregivers into the pediatric writer's world in a moment in time; (3) pediatric stories are authentic stories that yield important insights about patients and their relationships with others despite lacking formal narrative elements (e.g., plot) and form.

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.