Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey

Feudtner, Chris; Womer, James; Augustin, Rachel; Remke, Stacy S.; Wolfe, Joanne; Friebert, Sarah; Weissman, David E.

doi:10.1542/peds.2013-1286

Cited by 235 publications

(160 citation statements)

References 35 publications

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“…These patients were followed up for 2 subsequent years to examine the association between PPC and inpatient cost over time. Patients were grouped into 3 distinct categories reflecting the various types of patients cared for by PPC: (1) patients who died during or very close to their terminal hospitalization; (2) patients who died during the follow-up period; and (3) patients who survived the follow-up period.…”

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Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study

et al. 2015

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BACKGROUND: Pediatric palliative care (PPC) improves the quality of life for children with life-limiting conditions, but the cost of care associated with PPC has not been quantified. This study examined the association between inpatient cost and receipt of PPC among high-cost inpatients. METHODS:The 10% most costly inpatients treated at a children's hospital in 2010 were studied, and factors associated with receipt of PPC were determined. Among patients dying during 2010, we compared 2010 inpatient costs between PPC recipients and nonrecipients. Inpatient costs during the 2-year follow up period between PPC recipients and nonrecipients were also compared. Patients were analyzed in 2 groups: those who died and those who survived the 2-year follow-up.RESULTS: Of 902 patients, 86 (10%) received PPC. Technology dependence, older age, multiple chronic conditions, PICU admission, and death in 2010 were independently associated with receipt of PPC. PPC recipients had increased inpatient costs compared with nonrecipients during 2010. Among patients who died during the 2-year follow-up, PPC recipients had significantly lower inpatient costs. Among survivors, PPC recipients had greater inpatient costs. When controlling for patient complexity, differences in inpatient costs were not significant. CONCLUSIONS:The relationship of PPC to inpatient costs is complex. PPC seems to lower costs among patients approaching death. Patients selectively referred to PPC who survive most often do so with chronic serious illnesses that predispose them to remain lifelong highresource utilizers.WHAT'S KNOWN ON THIS SUBJECT: Pediatric palliative care (PPC) improves the quality of life for children with life-limiting illness and their families. The association between PPC and health care costs is unclear and has not been studied over time.WHAT THIS STUDY ADDS: PPC recipients were more medically complex. Receipt of PPC was associated with lower costs when death was near but with greater costs among survivors. When controlling for medical complexity, costs did not differ significantly according to receipt of PPC.

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Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study

et al. 2015

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“…5 PPC can be delivered in various settings, including community, hospitals, hospice, and at home. [6][7][8][9][10][11][12][13][14] In the United Kingdom, where the modern pediatric hospicepalliative care movement began with the founding of Helen House in 1982, 15 the freestanding hospice approach has been commonly employed. Other countries, including the United States, typically emphasize hospital inpatient consultation and home-hospice care.…”

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“…Other countries, including the United States, typically emphasize hospital inpatient consultation and home-hospice care. 6 Canada has adopted a blended model, with both hospital-community programs and separate "freestanding" inpatient programs that provide respite, symptom management, and end-of-life (EOL) care. 16 Currently, 6 freestanding hospices in Canada are in operation.…”

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Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Palliative care is an increasingly important element of pediatric care for children with noncurable, terminal conditions. Freestanding hospices represent one model of care provision; however, little research on this approach has been conducted. WHAT THIS STUDY ADDS:This report documents the experience of North America' s first freestanding hospice over 15 years to better understand the characteristics of children and families enrolled and to establish baseline information for future studies and program planning. abstract OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children' s Hospice (CPCH) is North America' s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS:A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS:The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric lifethreatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served. Pediatrics 2014;134:e765-e772 Dr Siden conceptualized and designed the study, guided the analysis, and reviewed and revised the manuscript; Ms Chavoshi drafted the initial manuscript, carried out the analysis, and finalized the manuscript; Ms Harvey was responsible for data review and entry and database management; Ms Parker reentered data and reviewed data for accuracy; Ms Miller reviewed and revised the manuscript and provided content pertaining to program description and budget; and all authors approved the final manuscript as submitted.www.pediatrics.org/cgi

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“…Almost 50% of all pediatric hospitals have a pediatric HPM program, with most established within the past 10 years. 7 In 2008, only 3 institutions and 3 positions were available for specialized training in pediatric HPM. As of June 2014, 15 institutions with 20 positions are available for pediatric focused training.…”

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confidence: 99%

Developing Competencies for Pediatric Hospice and Palliative Medicine

et al. 2014

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In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician-educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.

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Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey

Cited by 235 publications

References 35 publications

Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study

Pediatric Palliative Care and Inpatient Hospital Costs: A Longitudinal Cohort Study

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

Developing Competencies for Pediatric Hospice and Palliative Medicine

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