The National Palliative Care Registry and Impact on the Field of Palliative Care

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The National Palliative Care Registry and Impact on the Field of Palliative Care Diane E. Meier Director, Center to Advance Palliative Care (CAPC) diane.meier@mssm.edu registry.capc.org April 25, 2018

AGENDA Overview Findings Participation Case Studies Reports Conclusion 2

Overview: National Palliative Care Registry Annual survey on palliative care program s operations, service delivery, and processes Collecting annual aggregate data 3 Programs enter data once per year No patient-level data No patient reported outcomes (PROs) Questions aligned with the National Consensus Project for Quality Palliative Care

Structure & Process, examples Total# of patient encounters including initial consults and subsequent visits, as % of annual hospitalizations served (i.e. penetration) Program features 24/7 coverage for patients Team wellness, bereavement and QI plans in place Staffing disciplines and palliative care board certification Funding Source(s) Program Integration 5 Referral sources (physicians and locations) Integration into the ICU and Emergency Department

Across the Continuum: Separate surveys for each care setting: Participation is free to all palliative care programs 6

Participation since 2008: 1,182 1,410 2.33 million Palliative care programs have participated since the Registry s inception Care settings these programs cover (hospital, long-term care, office/clinic, and patient s home) Initial palliative care consults in our database over the past decade 7

Approximately 20% of hospitals with palliative care programs participate each year Circle size represents the size of the hospital (total beds) 8

Key Benefits of Participation Contributing to the national profile of palliative care programs Tracking program progress over time Evaluating your program against similar programs Including your program in reporting on national trends A premium listing in the Provider Directory on www.getpalliativecare.org for patient, families, referring clinicians, and payers! 9

The Registry helps programs answer questions, such as: How has my hospital penetration changed over time? How does my staffing compare to programs of a similar size? Has my program grown at the same rate as peer programs? Answers questions for the field, such as: Do programs meet nat l standards on structure and process? What are the program gaps for palliative care teams? Are palliative care programs reaching all patients in need? 10

Longitudinal Reports Help palliative care programs measure their progress and track their operational capacity and reach over time Used to set internal program goals and targets based on historical performance Key metrics such as penetration (initial consults/annual admissions), staffing, hospital discharges 11

Peer Comparisons Help palliative care programs evaluate against peer programs Reports include averages, medians, and percentiles for comparison groups 12

Peer Comparisons 12 comparative reports for hospital programs Comparisons by penetration, staffing, workload by Total Hospital Beds Compare to hospitals of a similar size Hospital Penetration Compare to programs that see a similar percentage of annual hospital admissions Staffing Full-time Equivalent Compare to programs with a similar staffing size 13

Health System Reports Help health systems get a better picture of palliative care across their hospitals Help to set system targets and benchmarks compared to the national average 14

National Finding: Palliative Care Service Penetration has grown 91% since 2008 6,0 5,0 4,8 5,0 4,4 4,0 3,5 4,0 3,0 2,6 2,7 2,8 3,1 Mean Penetration Median Penetration 2,0 1,0 0,0 2008 2009 2010 2011 2012 2013 2014 2015 2016

National Finding: Larger hospitals saw the most growth across staffing disciplines 8,0 7,0 1,2 Mean Full-time Equivalent (FTE) 6,0 5,0 4,0 3,0 2,0 1,0 0,0 0,6 1,0 0,6 2,3 0,6 0,3 0,4 0,6 0,4 0,6 0,3 0,3 0,4 0,2 0,6 1,0 0,3 0,5 1,2 0,5 2,5 0,7 0,7 0,4 1,3 0,5 0,5 0,7 0,9 2009 2016 2009 2016 2009 2016 Social Worker Chaplain RN APRN Physician <150 Beds 150-499 beds 500+ beds

Impact for Programs Make the case for more resources (i.e. staff) Our hospital is in the bottom quartile for staffing for our bed size. Bring reports to the hospital s C-Suite, Board of Directors, and other leadership meetings Set program targets or internal benchmarks for the year and years to come Lead discussions in palliative care team meetings on process and effectiveness 17

Making the Case for More Resources Case Study 1 18

St. Mary Medical Center Used Registry reports to show: 19 Palliative care program s penetration was in the top 75% percentile for peer group and reaching patients in need appropriately Team members are overworked compared to peer group average, top 75% for workload Palliative care team is understaffed, staffing FTE fell below the 25% percentile for peer group Workload in the 75% for the peer group

St. Mary Medical Center Action: Leadership meeting with hospital staffing committee to request additional staffing resources Outcome: More staff! +1.0 FTE palliative care nurse practitioner (NP) +1.0 FTE palliative care registered nurse (RN) Palliative care recognized as its own service line in the hospital 20

Setting Targets for the Health System Case Study 2 21

Trinity Health System Used Registry reports to: Set internal palliative care targets for each hospital in the system and for the system overall For example, if palliative care penetration is in the 25 th percentile, the 2-year target is to move up to the 50 th percentile Outcome: Trinity Health is close to the average nationally for penetration! 22

Enhancing Palliative Care Activities within the Hospital Case Study 3 23

Baylor Scott and White Setting system-level goals to enhance palliative care activities within the hospital Marketing activities within the hospital Education for palliative care staff Meeting national staffing level benchmarks Used Registry data to help achieve Joint Commission Advanced Certification for Palliative Care and the Circle of Life Award 24

Using National Findings to Advocate for Your Program Case Study 4 25

Fairview Southdale Hospital Presented Registry findings on the relationship between staffing and better palliative care penetration 6,6 4,7 3,4 4,1 Mean Penetration Median Penetration 26 Quartile 1 < 1.5 FTE Quartile 2 1.5-2.0 Quartile 3 2.1-3.0 Interdisciplinary Team FTE per 10,000 Hospital Admissions Quartile 4 >3.0

Fairview Southdale Hospital Palliative care programs that are adequately staffed reach a larger percentage of annual hospital admissions (penetration) Outcome: Increased palliative care nurses on the team from 2.0 FTE to 2.5 FTE 27

Conclusions The Registry provides actionable data that programs can use to secure, retain, and expand resources Using Registry reports, palliative care programs can measure their progress and track their operational capacity and reach Releasing national findings promotes standardization in the field and encourages increased access for patients and families 28

The National Palliative Care Registry The Registry is building a profile of palliative care teams, operations, and service delivery focused on structure and process. The Registry is a joint project of the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) Learn more at https://registry.capc.org/ 29