Program Development for Pediatric Palliative C are

1. Program Development for Pediatric Palliative Care Coleman Foundation Workshop September 7th, 2013 RaniGanesan MD Pediatric Supportive and Palliative Care Services Rush University Medical Center

2. Pediatric Supportive and Palliative Care STATISTICS THAT MAY HELP YOUR CAUSE • 500,000 a year children in the USA live with a life-threatening condition and receive treatment • 48,000 children per year die in the USA • Half are infants (within 1st year of life) • Congenital anomalies + preterm birth = approx 40% • Half are 1yr – 19 yrs old • Accident, assault, suicide are top three = approx 60% • 26,000 fetal deaths per year 2012 Natl Hospice and Palliative Care Org.

3. Pediatric Supportive and Palliative Care Our Query for Program Year 1 • What do we start with developing/justifying a program? • AAP recommendations • http://pediatrics.aappublications.org/content/106/2/351.full.pdf • Query of other similar structured pediatric institutions • Estimate of your institution’s needs • Adult approximates 5% of patients hospitalized would benefit from Palliative Care services. • Query of your institution’s administrative database using previously studied measures for palliative care benefit (ie readmissions, ICU LOS, specific diagnoses) • Demonstrate cost savings - NOT REVENUE GENERATION – as financial incentive for program support

4. Pediatric Supportive and Palliative Care • Pascuet, E. et al. Healthcare Management Forum. 2010. • Children’s Hospital of Eastern Ontario showed mean decrease in cost of patient of $4251.95 per month per patient. • Gans et al, UCLA Health Policy Brief, August 2012. • Medical expenditure per enrollee per month PRIOR to PCBP: $15,653 • Medical expenditure per enrollee per month AFTER PCBP: $13,976 • SAVINGS per enrollee per month: $1,677 (11% reduction) • TOTAL SAVINGS for all 123 enrollees in first 18 months of PCBP: $1,000,000

5. Pediatric Supportive and Palliative Care • Which patients are you asking to be involved with? Which patients would benefit from your services? • Institution dependent • Previously studied markers • Be careful about initial use of trigger criteria as it may burden limited resources

6. Pediatric Supportive and Palliative Care • Choose your team wisely. • Referring services are entrusting their most precious patients to you. • Team members should be aligned with individual program missions and focus within palliative care • Know your consumer. • Both patient and referring providers • Understand reason for involvement • Be respectful of the reason your service is being consulted (ie if consulted for symptom management, initially address symptom management and address other trust is established and when appropriate) • Don’t refuse consultswithout offering alternative ways to stay involved or help • KEEP IN TOUCH with referring MD’s and primary care physicians

7. Pediatric Supportive and Palliative Care PROGRAM YEAR 1 • Secured 1.0 FTE APN funding (institutional priority for quality of care) • Attend unit rounds • Attend discharge planning/chronic care rounds • Presence in nursing education • Flexible availability for initial in-patient consultations and family care conferences • Staff debriefings • Flexible availability for initial in-patient consultations and family care conferences • Discretionary FTE MD (average 15 hours per week) • Provide clinical support to APN • Track patient database • Evaluate and co-reference financial reports • Support resident and MD education • Staff debriefings • Conduct weekly interdisciplinary team meetings welcoming all stakeholders (including referring services) • Utilize in-patient partners • Social work services • Chaplain services • Bereavement counselors • Utilize external partners • Home nursing agencies • Home palliative care/hospice programs • Skilled nursing facilities • Long-term acute care facilities

8. Pediatric Supportive and Palliative Care PROGRAM YEAR 1 at RUMC Consulted on 2% (65/3656) of all admissions FY 2013 In-Patient Consultations FY 2013 (65) and FY 2014 PSPC BILLING Moral of story: PSPC programs can not depend on revenues generated to support program

9. Pediatric Supportive and Palliative Care PROGRAM YEAR 2 • Secured 1.0 FTE APN funding (institutional priority for quality of care) • Attend unit rounds • Attend discharge planning/chronic care rounds • Presence in nursing education • Flexible availability for initial in-patient consultations and family care conferences • Staff debriefings • Flexible availability for initial in-patient consultations and family care conferences • Secured 0.3-0.5 FTE MD/50-75 in-patient consultations • Provide clinical support to APN • Track patient database • Evaluate and co-reference financial reports • Support resident and MD education • Staff debriefings • Conduct weekly interdisciplinary team meetings welcoming all stakeholders (including referring services) • Discretionary FTE effort social work services with goal to support future funding based on need • Coordination of care for outpatient services • Program coordination • Continued outreach to outpatient services • Utilize in-patient partners • Social work services • Chaplain services • Bereavement counselors • Utilize external partners • Home nursing agencies • Home palliative care/hospice programs • Skilled nursing facilities • Long-term acute care facilities

10. Pediatric Supportive and Palliative Care Providing education may improve visibility and buy in from stakeholders

11. Pediatric Supportive and Palliative Care BILLING • Optimize reimbursements • MD involvement with initial in-patient consultations • Subsequent visits tailored to need • More frequent visits (even daily visits, PRN) may be needed for symptom management • Less frequent visits (biweekly, PRN) may be needed for goals of cares, care coordination, and family support • Outpatient • Maximized billing opportunity with APN does not require MD presence in examination room but requires presence within building