Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study
- 1 July 2023
- journal article
- research article
- Published by Mary Ann Liebert Inc in Journal of Palliative Medicine
- Vol. 26 (7), 960-968
- https://doi.org/10.1089/jpm.2022.0480
Abstract
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.Keywords
This publication has 31 references indexed in Scilit:
- Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantationBMC Pediatrics, 2014
- End-of-Life Care for Children Enrolled in a Community-Based Pediatric Palliative Care ProgramJournal of Palliative Medicine, 2014
- Specialized Pediatric Palliative Home Care: A Prospective EvaluationJournal of Palliative Medicine, 2013
- Patterns and Costs of Health Care Use of Children With Medical ComplexityPEDIATRICS, 2012
- Effectiveness of a Pediatric Palliative Home Care Team as Experienced by Parents and Health Care ProfessionalsJournal of Palliative Medicine, 2012
- Pediatric Palliative Care Patients: A Prospective Multicenter Cohort StudyPEDIATRICS, 2011
- Children With Medical Complexity: An Emerging Population for Clinical and Research InitiativesPEDIATRICS, 2011
- 20-year survival of children born with congenital anomalies: a population-based studyThe Lancet, 2010
- Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics supportJournal of Biomedical Informatics, 2008
- Improved outcomes of children with malignancy admitted to a pediatric intensive care unitCritical Care Medicine, 2000