National Hospice and Palliative Care Organization’s Pediatric Chronic Complex Conditions : Best practice for Home Care Coordination Susan M. Huff, RN, MSN Senior Director Johns Hopkins Pediatrics at Home

Objective Understand the needs of chronic complex conditions (CCC) in pediatric palliative care patients. Describe five areas you must address for effective patient discharge to home. Explain best practices to prevent frequent unplanned hospital readmissions.

Johns Hopkins Pediatrics at Home (PAH) 2,000 new patients served each year Recent audit found 65% of patients have 1 diagnosis meeting needs for palliative care 40% of patients have 2 palliative care diagnoses Complex patients – readmission rate of 8% No benchmarks Comparison to adult readmission rate 24%

Serving CCC Patients: What We Know Receive health care across settings Day to day care relies on technology Use multiple medications – frequent hospitalizations Represent patients eligible for palliative care and hospice

Serving CCC Patients: What We Know Move in and out of acute care facilities Require intensive planning for discharge home 5,000 children are within 6 months of life on any given day 15,000 children die annually from conditions that could benefit from palliative care

Assessment Assess families early in admission process Work with family, hospice or home care organization to plan a safe discharge home Assess family unit, culture, decision making process, communication styles, home environment, basic demographics.

Assessment Families and patients should be involved in discharge planning and setting goals of care Most pre-planning is for patients with high tech equipment Ventilators, respiratory equipment, infusion and enteral therapy

Medication Management Medication reconciliation Pharmacist review medications with patient and family prior to discharge Nurse training in medication reconciliation Teach and monitor compliance at home Discuss at every home visit

Teaching Parents/Caregivers Simulation teaching and teach back Use of interpreter Videos for non-English speaking Bedside and simulation out of patients room

Establishing Home Visit Frequency Initial discharge to home - increased frequency of home visits Teaching, building confidence, partnering with home health or hospice, providing support Will improve overall compliance and lower unplanned readmissions

Communication Post-Discharge Clear and frequent communication with case manager/home care coordinator prior to discharge Information taken from hospital chart must be reviewed with patient and family Once home, welcome calls

Conclusion Vulnerable population – unavoidable readmissions Goal is to ensure safe discharge and avoid frequent readmissions to a facility Back to school, life, play, finding joy, quality of life Supporting families to provide care and build trust

References Feudtner C, Christakis DA, Zimmerman FJ, Muldoon JH, Neff J, Koepsell TD. Characteristics of deaths occurring in children’s hospitals: Implications for supportive care services. Pediatrics. 2002;109(5):887-893. Savithri, N. and Golden, S. L. Factors Associated With the Stability of Health Nursing Services For Children With Medical Complexity. Home Healthcare Now.2017;35(8):434-444.