Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study

Title

Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study

Creator

Grossoehme D H; Humphrey L; Friebert S; Ding L; Yang G; Allmendinger-Goertz K; Fryda Z; Fosselman D; Thienprayoon R

Publisher

Journal of Pediatrics

Date

2020

Subject

life-limiting illness; home-based palliative care; pediatric hospice; Ohio Pediatric Palliative Care and End-of-Life Network; OPPEN; retrospective cohort study

Description

Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. Study design: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics. Result(s): There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. Conclusion(s): Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses. Copyright © 2020 Elsevier Inc.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

August 2020 List

Collection

Citation

Grossoehme D H; Humphrey L; Friebert S; Ding L; Yang G; Allmendinger-Goertz K; Fryda Z; Fosselman D; Thienprayoon R, “Patterns of Hospice and Home-Based Palliative Care in Children: An Ohio Pediatric Palliative Care and End-of Life Network Study,” Pediatric Palliative Care Library, accessed May 16, 2022, https://pedpalascnetlibrary.omeka.net/items/show/17174.

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