Using Quality Improvement Science to Create a Navigator in the Electronic Health Record for the Consolidation of Patient Information Surrounding Pediatric End-of-Life Care
code status; documentation; electronic health record; end of life care; models of palliative care delivery; pediatrics
BACKGROUND: It is important to document the domains surrounding end-of-life (EOL) care in the electronic health record (EHR). No pediatric navigator exists for these purposes. MEASURES: Medical charts were reviewed for documentation surrounding code status and care at the time of death from January 2017 to June 2019. INTERVENTION: Creation of a navigator in the EHR to consolidate advance care planning documents, code status orders and notes and EOL flowsheets. OUTCOMES: After implementing the navigator, 96% code status changes had supporting documentation, an increase of 35%. The percentage of deaths supported by a psychosocial team (social worker, chaplain and certified child life specialist) increased by 25%. Post-mortem documentation became electronic. Patient level metrics began to be electronically collected. CONCLUSIONS/LESSONS LEARNED: Little has been published regarding use of the EHR to consolidate EOL documentation in pediatrics. Development of a systematic approach to documentation is critical to providing EOL care and standardizing care delivered.
Casas J; Jeppesen A; Peters L; Schuelke T; Magdoza NRK; Hesselgrave J; Loftis L
Journal of Pain and Symptom Management
2021
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.04.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.04.006</a>
Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa
Pediatric Palliative Care; Childhood Cancer Clinical Providers; Delphi Method; low and middle income country; Pediatric Palliative Care Assessment
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families requiring palliative care in developing countries. OBJECTIVES: To develop a standardized approach to pediatric palliative care (PPC) assessment that includes an individualized plan of care for use in sub-Saharan Africa. METHODS: A Delphi method approach used five rounds to explore core elements that define the essential assessment attributes mandatory for providing excellence in PPC. Using the Delphi method, consensus from 11 PPC experts was obtained during four Delphi rounds regarding the most important questions to include in a PPC assessment tool and plan of care. During the final Delphi round 5, expert consensus was confirmed in a separate group of 36 childhood cancer/palliative care clinical providers. RESULTS: Five core elements were developed as the foundation for a PPC assessment. A symptom assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred more than 65% of the time in their patients. CONCLUSION: The Delphi method was an effective tool to develop a consensus on a PPC assessment tool to use with children and their families in sub-Saharan Africa. This standardized approach will enable collection of data to drive outcomes and research. Key Message. The need for a culturally appropriate PPC assessment tool is crucial to promoting excellence in palliative care around the globe. This tool will have a tremendous impact on the care of children and their families in sub-Saharan Africa.
Chinyundo K; Casas J; Bank R; Abenawe C; Gaolebale B; Nakirulu A; Maifale-Mburu G; Hesselgrave J; Butia M; Bakulumpagi D; Nassanga I; Higgins J; Hockenberry M
Journal of Pain and Symptom Management
2022
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.021</a>
Palliative Care Services within a Pediatric Hematology-Oncology Program in a Low-Resource Setting
global health; hematology; oncology; Pediatrics; sub-Saharan Africa
CONTEXT: Outcomes for children with cancer in sub-Saharan Africa (SAA) are dismal due to delayed diagnosis and limited access to curative therapy. When establishing a pediatric hematology-oncology (PHO) program in low-resource settings, early integration of palliative care services becomes essential. While palliative care is a human right, equitable distribution is lacking. OBJECTIVES: We aim to describe our experience establishing a palliative care program, the services offered, and the distribution of patients served. METHODS: This is a brief description of our PHO palliative care program in Lilongwe, Malawi at a tertiary care center and a three-year retrospective review of activities (2017-2020). Services offered include inpatient, outpatient, home visits, end of life care, and strengthening of referral systems. RESULTS: Over the 3-year period, 315 patients were enrolled. Fifty-seven percent (n=179) were male. The median age was 7 years (5 months - 22 years). Patients served were from 17 of 28 districts within Malawi. Diagnoses of patients included 43% solid tumors (n=135), 22% lymphoma (n=68), 15% leukemia (n=47) and 21% hematologic disease (n=65). Forty percent of patients have died (n=125), with 53% of deaths occurring at home (n=66), 22% in the hospital (n=28), and 25% at unknown locations (n=31). CONCLUSION: Palliative care is a critical component of PHO programs worldwide. Programs must leverage existing networks to ensure optimal care to children and families. We demonstrate the feasibility of integrating palliative care services within a PHO program in a low-resource setting, which could serve as a model for other countries in SSA.
Silverstein A; Butia M; Bank R; Manda G; Nyasulu C; Mwango N; Makuti S; Chikasema M; Torrey S; Hesselgrave J; Casas J; Thambo L; Msekandiana A; Chiume M; Ozuah N; Huibers MH
Journal of Pain and Symptom Management
2022
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2022.01.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.006</a>