Pediatric Hospice Research Articles

A Comparison of Hospice Care Utilization Between Rural and Urban Children in Appalachia: A Geographic Information Systems Analysis.

Long driving times from hospice providers to patients lead to poor quality of care, which may exacerbate in rural and highly isolated areas of Appalachia. This study aimed to investigate geographic patterns of pediatric hospice care across Appalachia. Using person-level Medicaid claims of 1,788 pediatric hospice enrollees who resided in the Appalachian Region between 2011 and 2013. A database of boundaries of Appalachian counties, postal addresses of hospices, and population-weighted county centroids of residences of hospice enrollees driving times from the nearest hospices were calculated. A choropleth map was created to visualize rural/urban differences in receiving hospice care. The average driving time from hospice to child residence was 28minutes (SD = 26). The longest driving time was in Eastern Kentucky-126minutes (SD = 32), and the shortest was in South Carolina-11min (SD = 9.1). The most significant differences in driving times between rural and urban counties were found in Virginia 28 (SD = 7.5) and 5minutes (SD = 0), respectively, Tennessee-43 (SD = 28) and 8minutes (SD = 7), respectively; and West Virginia-49 (SD = 30) and 12minutes (SD = 4), respectively. Many pediatric hospice patients reside in isolated counties with long driving times from the nearest hospices. State-level policies should be developed to reduce driving times from hospice providers.

A pilot study on sports activities in pediatric palliative care: just do it

BackgroundThere has been a growing interest in studying the value of physical exercise in children with disabilities or chronic health conditions because of evidence of improvement in quality of life, social acceptance, and physical functioning. However, only scant evidence exists for routine sports activities in children requiring pediatric palliative care (PPC), and in most cases, such evidence has been collected in oncological patients. The Pediatric Hospice of Padua is the referral center for PPC in the Veneto region (northern Italy). Starting from the experience of this PPC center, this pilot study aims to describe the personal experience of children and young people who practice physical activity and their caregivers’ perspectives, focusing particularly on the emotional and social impact of exercise and sports practice.MethodsPatients involved in at least one regular and structured sports activity were included in the pilot analysis. Two different ICF-CY (International Classification of Functioning, Disability and Health-Children and Youth Version) scales (“Body Function” and “Activity and Participation”) were filled out to assess the children’s global functional competence. Two online ad hoc questionnaires were created and administered to children, when able to respond, and caregivers.ResultsA total of 9% of patients reported being involved in a sports activity. All children who played sports did not have indications of cognitive retardation. The most practiced sport was swimming. The use of standardized methods such as ICF-CY shown that severe motor impairments do not limit sports accessibility. Questionnaires result suggest that sports are a positive experience for both children needing PPC and their parents. Children encourage other children to do sports and can find the positive side even in difficulties.ConclusionSince PPC is encouraged as early as the diagnosis of incurable pathologies, the inclusion of sports activities in the context of a PPC plan should be considered from the perspective of improving quality of life.

Home Milrinone in Pediatric Hospice Care of Children with Heart Failure.

The symptom profile of children dying from cardiac disease, especially heart failure, differs from those with cancer and other non-cardiac conditions. Treatment with vasoactive infusions at home may be a superior therapy for symptom control for these patients, rather than traditional pain and anxiety management with morphine and benzodiazepines. We report our experience using outpatient milrinone in children receiving hospice care for end-stage heart failure. Retrospective review of a contemporary cohort of all patients at Lucile Packard Children's Hospital, Stanford who were discharged on intravenous milrinone and hospice care between 2008 and 2021. Clinical data, including cardiac diagnosis, milrinone dose and route of administration, total milrinone days, symptoms reported, rehospitalization rates, concurrent therapies and complications were analyzed. Among 8 patients, median duration of home milrinone infusion was 191 (33, 572) days with the longest support duration 1,054 days. All (100%) patients were also receiving diuretics at the time of death. Five (63%) were receiving no other pain control medications until the active phase of dying. From milrinone initiation to last outpatient assessment, a reduction in the number of patients reporting respiratory discomfort, abdominal pain, weight loss/lack of appetite, and fatigue was observed. Six (75%) died at home. We used milrinone with oral diuretics effectively for symptom control in children with heart failure on palliative care. Our experience was that this combination can be used safely in the outpatient setting for long-term use without the addition of opiates, benzodiazepines, or supplemental oxygen in most cases.

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.

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.

Parents' experience of extended viewing in a paediatric hospice: a qualitative study

The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. First, this study aimed to develop a deeper understanding of how extended viewing is experienced by the parents of a deceased child (or young person) with a life-limiting condition, based in Australia. Second, this study aimed to evaluate the quality of bereavement care delivered during the first few days after death. A total of 17 bereaved parents of 13 children completed an interview. In-depth interviews were audio-recorded, transcribed verbatim and thematically analysed. While the authors acknowledge the complexity and individual nature of grief, four broad themes were identified, namely the importance of the 'physical environment' being conducive to spending time with their child; 'seeing their child'; 'time to say goodbye'; and 'supportive care'. The findings of this study reinforce that extended viewing can provide therapeutic benefits for parents, as well as the importance of a skilled palliative care nursing workforce in assisting with grief management.

Years of life lost: A call to achieve equitable end-of-life care among children.

Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable option to the children and their families. Two clinical case examples illustrate implementation of these options in practice. A missing link exists in healthcare systems across developed and developing countries in pediatric end-of-life care. Currently, the primary options involve selecting between hospital and home-based hospice care. Proposing to increase access to inpatient pediatric hospice services could potentially increase acceptability of this option to honor the child in line with the family's preferences, goals, wishes, and values. In addition, inpatient pediatric hospice could offset costs from preventable hospitalizations and overall high-cost healthcare utilization. Oftentimes, readmissions impact decision-making among caregivers that include changes in code status from Do Not Resuscitate/Do Not Intubate (DNR/DNI) to full curative care, thereby resulting in medicalization or overmedicalization of the child. It follows that reduced healthcare expenditures will increase cost efficiency across the healthcare system. Achieving health equity in palliative care among adult and pediatric patients at the end-of-life is a longstanding goal of the World Health Organization (WHO) and the United Nations International Children's Emergency Fund (UNICEF). Proposing to mitigate disparities in palliative care among children through inpatient hospice as another viable option for their families could contribute to the larger overarching goal of achieving health equity in end-of-life care across the world.

Conceptualizing the Value of Pediatric Concurrent Hospice Care.

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In pursuit of this goal, the current literature on pediatric concurrent hospice care was synthesized and used to develop a model to explain its value. Because of its relevance, the Value Assessment Framework was used to conceptualize the value of pediatric concurrent hospice care. This framework gauges the value of a health care service through 2 components: long-term effect and short-term affordability. The framework considers comparative clinical effectiveness, cost-effectiveness, other benefits or disadvantages, contextual considerations, and potential budget impact. Evidence from the literature suggested that the value of concurrent care depended on clinical outcomes evaluated, costs examined, medical services used, care coordinated, context considered, and budget impacted. The literature demonstrated that pediatric concurrent hospice care does offer significant value for children and their families. The conceptual model highlighted the need for a comprehensive approach to assessing value. The model is a useful framework for future research examining the value of concurrent hospice care.

DETERMINING the VIEWS of PEDIATRIC NURSES on the IMPORTANCE of CHILDREN’S HOSPICES and THEIR ESTABLISHMENT IN TURKEY

Objectives: This research was conducted to determine the opinions of nurses working in the field of pediatrics in Turkey about the importance of child hospices and its establishment in Turkey.
 Methods: The research population consisted of 365 individuals who actively served as pediatric nurses in Turkey. A descriptive questionnaire on children’s hospices/palliative care at the end of life and a scale form for determining the opinions of the nurses working in pediatrics at children’s hospices were used to obtain the data.
 Result: Of the nurses who participated in the study; 60.82% were female and 39.18% were male.43.01% thought the country does not need any more children’s hospice services, 42.47% considered that developing them in Turkey would not happen due to a lack of information and training about hospices of these services and 95.92% stated that the country needs more children’s hospices.
 Conclusion: The fact that nurses who could take an active role in the establishment of pediatric hospices and palliative care applications, lack of basic training in hospice care and experience in advanced care practices will affect the perspective of children’s hospices. In Turkey, pediatric nurses do not have enough knowledge about hospices. The fact that nurses and their families do not have sufficient knowledge on this subject is an obstacle to the further establishment in children’s hospices in Turkey.

Incremental cost analysis of pediatric hospice care in rural and urban Appalachia.

Considering growing disparities in health outcomes between rural and urban areas of Appalachia, this study compared the incremental Medicaid costs of pediatric concurrent care (implemented by the Patient Protection and Affordable Care Act) versus standard hospice care. Data on 1,788 pediatric hospice patients, from the Appalachian region, collected between 2011 and 2013, were obtained from the Centers for Medicare and Medicaid Services. Incremental per-patient-per-month (PPM) costs of enrollment in concurrent versus standard hospice care were analyzed using multilevel generalized linear models. Increments for analysis were hospice length of stay (LOS). For rural children enrolled in concurrent hospice care, the mean Medicaid cost of hospice care was $3,954 PPPM (95% CI: $3,223-$4,684) versus $1,933 PPPM (95% CI: $1,357-$2,509) for urban. For rural children enrolled in standard hospice care, the mean Medicaid cost was $2,889 PPPM (95% CI: $2,639-$3,139) versus $1,122 PPPM (95% CI: $980-$1,264) for urban. There were no statistically significant differences in Medicaid costs for LOS of 1 day. However, for LOS between 2 and 14 days, concurrent enrollment decreased total costs for urban children (IC = $-236.9 PPPM, 95% CI: $-421-$-53). For LOS of 15 days or more, concurrent care had higher costs compared to standard care, for both rural (IC = $1,399 PPPM, 95% CI: $92-$2,706) and urban children (IC = $1,867 PPPM, 95% CI: $1,172-$2,363). The findings revealed that Medicaid costs for concurrent hospice care were highest among children in rural Appalachia. Future research on factors of high costs of rural care is needed.

A National Survey to Guide Pediatric Curricula for Hospice and Palliative Medicine Fellows.

The pediatric hospice and palliative medicine (pHPM) workforce caring for an increasing population of medically fragile children is small due to a lack of both pHPM training opportunities and pediatric palliative care (PPC) community resources.1–10 Of the 159 HPM fellowship programs in the U.S., only 13 are dedicated pHPM programs with 17 training spots annually.11,12 A majority of pHPM specialists go on to practice within hospital-based programs, most of which are located in urban areas and prioritize on-site consultation.

"If We Build It, Will They Come?" A Cohort Study of Family Utilization of a Pediatric-Specific Hospice Home.

Objective: To determine whether families would make use of a pediatric-specific inpatient hospice facility for end-of-life care for children. Background: Location of end-of-life care and death are important considerations when treating children with life-limiting conditions. There is very limited research on utilization of an inpatient hospice facility for end-of-life care if a pediatric-specific facility is available. We examined changes in family utilization of inpatient hospice services with the availability of an inpatient pediatric hospice facility (PHF). Methods: We conducted a retrospective cohort study with data collected on location of end-of-life care and death five years prior to and five years following the opening of a PHF that receives referrals from a large children s hospital in United States. Two data sources from the hospice organization were used: (1) a dataset on origins and outcomes of referrals to pediatric inpatient hospice care and (2) a dataset on location of death for all pediatric patients who had any contact with the hospice system. Chi-square analyses were conducted to assess the associations between the PHF opening and referral outcomes and location of death. Results: Significant results were found with respect to both referral outcomes and location of death. Engagement in inpatient hospice care increased between 2- and 10-fold following the opening of the inpatient PHF. The percent of patients who died in an inpatient hospice unit also increased significantly with the opening of the pediatric facility. Discussion: Results of this study show that providers are more likely to refer, and families are more likely to use inpatient hospice services when pediatric facilities are available. These results are important for establishing an evidence base in support for increasing access to PHFs.

Impact of Concurrent Hospice Care on Primary Care Visits Among Children in Rural Southern Appalachia.

The purpose of the study was to test the effect of receiving pediatric concurrent hospice care on primary care visits. This retrospective study was limited to pediatric decedents younger than 21 years with a hospice service claim from 2011 to 2013. Our outcome of interest concerned whether concurrent hospice care impacted primary care visits. Of the 460 pediatric decedents in rural Southern Appalachia, 42% continued to visit their primary care provider during hospice enrollment, whereas 51% received concurrent hospice care. Concurrent hospice care was significantly related to pediatric primary care visits (β=2.31; p < .001). Findings revealed that receipt of concurrent hospice care impacted primary care. Children in concurrent care were twice as likely to continue to receive care from their primary care provider. This finding is consistent with our hypothesis; however, the magnitude of the finding was unexpected given their residence in medically underserved areas.

간호대학생의 소아청소년 호스피스⋅완화의료에 대한 인식과 삶의 의미에 대한 조사연구

Purpose: This study aims to understand the perception of pediatric hospice palliative care and the meaning of life of undergraduate nursing students. Methods: To achieve the study''s purpose, 136 nursing students were surveyed, and the results were analyzed with SPSS Statistics using an independent t-test. Results: The nursing students'' perception of pediatric hospice and palliative care was positive. The meaning of life according to perceptions of pediatric hospice and palliative care showed a significant difference in awareness of the necessity of pediatric hospice and palliative care wards in university hospitals. Finally, education on insufficient knowledge of pediatric hospice and palliative care is needed. Conclusion: Based on these research results, we would like to present implications for nursing students'' effective education on pediatric hospice and palliative care.

Assessment of disabled paediatric patients for accessing palliative care: validation of a new tool

BACKGROUND: By reviewing the literature, no work has emerged about the presence of a Palliative Care Network dedicated to the Italian disabled pediatric population. however, there is an increase in the prevalence of children with ingrained illness and / or serious disabilities who are in need of such treatment. The difficulty in defining when a child becomes incurable persists. Along with the diagnosis of incurability, the other crucial factor is the extent of "care needs".OBJECTIVES: the aim of the study is to build an assessment tool for defining access criteria to Pediatric Palliative Care for patients with advanced illness and / or severe disability. B METHODS: an observational, prospective, multicenter study was conducted, by using the Clinical Assessment Tool (CAT) scale, which has been proposed by the paediatric hospice of Padua (Italy) without formal validation. We studied a non-randomized sample of 101 patients from five healthcare facilities in Northern Italy. We modified the CAT scale by adding items from other tools used in Palliative Care. The study was divided into two periods at a distance of one month, in order to assess the patients’ clinical evolution. RESULTS: internal consistency of the CAT tool was good ​​(alpha=0.83). Explorative factor analysis showed acceptable loadings on each item. Positive and negative predictive values ​were 0.97 and 0.98, respectively. CONCLUSIONS: the scale is reliable in identifying individuals in need of Pediatric Palliative Care and seems a promising tool for assessing the needs for palliative care in children with ingrained illness and/or severe disability.

Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States.

Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition. Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis. Sixty-four participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19/48), goals of care communication (44%, n=21/48), and symptom management (45%, n=21/47). Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education.

Family experiences with palliative care in freestanding paediatric hospices: a scoping review

BackgroundPaediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within...

Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model.

Implementation of concurrent hospice care led to a new hybrid payment model that combines hospice payments with payments for non-hospice medical care. Little is known about the cost implications of this new hybrid payment model. The purpose was to identify costs and compare concurrent care and standard hospice care costs by estimating the average incremental Medicaid cost of care over time. Using national Medicaid data of 18147 hospice children and a multilevel generalized linear model, we calculated the incremental costs of receiving concurrent vs standard hospice care. We used the total cost of care over the last year of life. Increments for the analysis were hospice length of stay, stratified to 1 day, 2-14 days, and 15 + days. Overall, compared to standard hospice care, enrollment in concurrent hospice care was significantly associated with an increase in outpatient care and prescription drug costs. For a stay of 1 day, concurrent hospice care decreased inpatient costs and increased costs of prescription drugs. For stays between 2 and 14 days, concurrent hospice decreased total costs and inpatient costs, but increased prescription drug costs. With a hospice stay of 15 + days, concurrent hospice had significantly higher costs across all measures, including total costs, inpatient costs, outpatient costs, and prescription drug costs. This study provides critical insight into incremental costs of receiving concurrent vs standard hospice care. More research is needed to understand how concurrent hospice lengthy hospice stays are associated with increases of costs.

Good Days, Bad Days: A Cognitive Interview-Based Approach for Eliciting Parents’ Perspectives on Experiences with Pediatric Palliative and Hospice Care (S547)

Good Days, Bad Days: A Cognitive Interview-Based Approach for Eliciting Parents’ Perspectives on Experiences with Pediatric Palliative and Hospice Care (S547)

Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis.

Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifically concurrent hospice care. Objective: The study purpose was to identify policy guidance on EPSDT and pediatric hospice care from state Medicaid documents. Methods: We conducted a descriptive exploratory study, using state-level Medicaid hospice documents. Manuals, policy transmittals, provider memos, policy updates, and other related documents were searched from 50 states and the District of Columbia. We created a comprehensive data extraction tool that enabled us to identify EPSDT-specific information. The appraisal of the documents was conducted under 3 main a priori themes: definitions, function, and administration. Results: Eleven states included EPSDT in their hospice documentation. Definitions for concurrent care and palliative care were sparse and inconsistent. Four states defined medically necessary criterion. Several states did not integrate EPSDT into the hospice or concurrent care benefit, while EPSDT functioned as part of the Medicaid hospice benefit in 3 states and another 4 included it in their concurrent hospice care program. Among all the states, procedures for EPSDT program administration varied widely, including care coordination and payment. Conclusion: We found significant variation in state documents on EPSDT and pediatric hospice care. Clear guidelines and consistent standards regarding EPSDT services and how they interface with hospice, concurrent hospice care, and palliative care would improve care for children and families.