Costs of Care and Location of Death in Community-Based Pediatric Palliative Care
adolescent; adult; article; cardiovascular disease/dm [Disease Management]; child; child death; child health care; child health insurance; childhood cancer/dm [Disease Management]; childhood disease/dm [Disease Management]; cohort analysis; community care; community-based; congenital disorder/dm [Disease Management]; cost; dying; family income; female; groups by age; health care cost; health maintenance organization; home care; human; major clinical study; male; medicaid; neuromuscular disease/dm [Disease Management]; newborn disease/dm [Disease Management]; palliative therapy; pediatric palliative care; pediatric patient; prematurity/dm [Disease Management]; race difference; retrospective study
Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective(s): The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design(s): A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Result(s): Sixty-six (29%) of the children were \textless1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusion(s): Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability. Copyright © 2019, Mary Ann Liebert, Inc.
Chirico J; Donnelly J P; Gupton A; Cromwell P; Miller M; Dawson C; Korones D N
Journal of Palliative Medicine
2019
<a href="http://doi.org/10.1089/jpm.2018.0276" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0276</a>
Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review
Bereavement; Pediatrics; Family; Scoping review; Hospice care; Terminal care
BACKGROUND: Paediatric 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 a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices. OBJECTIVES: To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement. CRITERIA: Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English. EXCLUSION CRITERIA: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss. SOURCES OF EVIDENCE: Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results. CHARTING METHODS: The scoping review was guided by recommendations from Arksey and O'Malley and Levac et al. RESULTS: A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas. CONCLUSIONS: There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
Dorman J; Raffin BS; daSilva CK; Miller M
BMJ Supportive and Palliative Care
2022
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<a href="http://doi.org/10.1136/bmjspcare-2021-003457" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003457</a>