Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population
Title
Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population
Creator
Johnston EE; Rosenberg AR; Kamal AH
Identifier
Publisher
Journal of Oncology Practice
Date
2017
Description
We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.
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
November 2017 List
URL Address
Notes
1935-469x
Johnston, Emily E
Rosenberg, Abby R
Kamal, Arif H
Journal Article
United States
J Oncol Pract. 2017 Sep 15:JOP2017021766. doi: 10.1200/JOP.2017.021766.
Citation
Johnston EE; Rosenberg AR; Kamal AH, “Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population,” Pediatric Palliative Care Library, accessed May 2, 2024, https://pedpalascnetlibrary.omeka.net/items/show/11013.