Counting What Matters: Considerations in Selecting a Common ACP Outcome

1. Counting What Matters:  Considerations in Selecting a Common ACP Outcome Barry B. Cohen PhDRainbow Research, Inc. July 18, 2013

2. Selecting a Common ACP Outcome Completing an Advance Care Plan is a key Honoring Choices outcome. • How do we measure the extent to which this outcome is being achieved across health plans? • How do we measure this outcome consistently and validly? • If we compare rates what is an appropriate common denominator?

3. Selecting a Common ACP Outcome TC Medical Society Survey Spring, 2012 • Survey of 10 health plan coordinators • 7 of 10 plans track number of patients with completed health care directives in EMR

4. Selecting a Common ACP Outcome Significant accomplishment For Honoring Choices partners. With health care directives in the EMR: • Health care personnel have ready access in acute care and end of life situations • Patient’s medical proxies can be contacted and consulted • Likelihood of patients wishes being known and honored increases

5. Measuring Output Having these data is also a necessary first step in measuring results • Number of completed health care directives is a measure of administrative output • How many completed ACPs have been scanned? • How many times the code for complete ACPs codes appear in EMR?

6. Output is the Numerator What is our denominator? • Relative to the targeted health plan member base are these large or small numbers as a percentage of a total number patients eligible? • 100/100? • 100/1,000 ? • 100/10,000?

7. ?Why Standardize Measures? A common denominator such as number of plan enrollees allows us to measure our results as a percentage or rate in ways that are valid and useful: • Compare changes in outcomes over time • Compare differential outcomes between different sites or clinics, • Compare Health plans on their performance • Assess impact of Honoring Choices by rolling up results across plans

8. Continuous Improvement Measurement of these outcomes can contribute to continuous improvement. If rates are low we may take a closer look at our processes: • Where and when are conversations initiated? • Who initiates the conversation? • Are conversations being conducted according to protocol?

9. Outcome measurement supports accountability internally and externally Management and boards can determine: • Are ACP goals/targets being met? • Do benefits of ACP outweigh the costs? Funders supporting Honoring Choices can determine: • Are grants making a difference in ways intended? • Is our support achieving a public good?

10. Proposed Common Measure Minnesota Community Measurement Health Care Home “Percentage of patients age 65 or greater at the start of the measurement year who have evidence (documentation) of advance care planning in their medical record at their health care home clinic”

11. Cost Effectiveness Measure Having an ACP in place by age 65 and above is cost effective • At age 65 mortality rates climb sharply. Generally speaking young adults and middle aged adults have: • Lower morbidity and mortality rates for chronic diseases than people over 65

12. Targeting young less beneficial & perhaps more costly Mobility :Young adults frequently change employers and move frequently • Change employers and health plans - Likely to change plans before an ACP would be consulted vs. older adults who are less economically and geographically mobile • Out of date ACPs: ACP’s are more likely to be out of date and of lesser utility-Useful for identifying proxies too old to provide useful guidance

13. Race/Ethnicity specific outcomes: The Pros and Cons Propose we consider • a) using age 60 or greater as the measurement standard • b) computing race/ethnicity specific percentages for purposes of evaluation

14. Racial disparities in morbidity and mortality • Racial disparities in onset and rates of chronic diseases and other causes of death in Minnesota are pronounced and egregious. In Minnesota (2010) Annual death rates first exceed 1,000/100,000 (1 in a 100) for: • African Americans and American Indians between ages 55 and 64 vs. • Whites, Latinos and Asian Americans between ages 65 and 74.

15. Crude Death Rates in Minnesota Per Hundred Thousand by Age and Race/ Ethnicity -2010

16. One Outcome Or Two? Given the extent of racial disparities two outcomes would be empirically warranted. Health plan accountability for enrolling younger American Indians and African Americans (> 55) would help ensure equitable access to this benefit with that of Whites, Latinos and Asian/Asian Pacific Islanders (> 65). • Evidence also suggests however this could prove unwelcome, discouraging and politically counterproductive.

17. One Outcome Or Two? MCM’s cites a Harvard U. study finding “a correlation between end‐of‐life care preferences and race.” “African Americans and Hispanics were both more likely to opt for intensive end‐of‐life care. African Americans were twice as likely as whites to say they would want life‐prolonging treatments.”  African Americans and Hispanics also less likely to have conversations with physicians about hospices care than Whites or Asian-Americans.

18. One Outcome or Two? Two measures even if empirically justified and perhaps beneficial could be misperceived as invidious and could create/reinforce perceptions that health plans or physicians: • Promote less costly end of life care because of race • Hasten death of those who are less valued for reasons of race

19. Barriers to ACP conversations include poor communication and mistrust • Perception health care system is racially- biased • Lack of culturally specific communication about ACP • Lack of a regular physician with whom there is a trusted relationship.

20. ACP As A Standard of Care MCM observes that ACP as a standard of care might increase the proportion of African Americans willing to engage. “Having a standard of care for physicians to offer patients advance care planning, as they would offer a screening for colorectal cancer, might help decrease disparities in care and increase patient confidence that their wishes will be adhered to.” Honoring Choices has gone a step beyond in offering training in culturally appropriate ACP conversations with people of the same heritage. It need not be the physician.

21. Use Patient >60 and Over as the Denominator Recommendation: Use age >60 as the standard regardless of race/ethnicity • What we choose to measure and hold ourselves accountable for drives our behavior. • With this standard we are likely to engage more African Americans and American Indians in ACP planning at younger ages. • This measure puts Whites, Latinos and Asians just ahead of the curve and African Americans and American Indians slightly behind the curve.

22. Use Culturally Specific Plan Enrollee Data As The Denominator Reference For Internal Evaluation • Recommendation: For evaluation purposes Health Plans should consider measuring racial/cultural specific results for their enrollees be it ACP or any health/medical outcomes. • A single health statistic for the population can mask disparities because, particularly in Minnesota, populations of color are still a fraction of the total population .

23. Use Culturally Specific Plan Enrollee Data As The Denominator Reference For Internal Evaluation  Collecting ACP data by race/ethnicity for evaluation: • Helps ensure ACP planning resources and benefits are equitably shared • Facilitates evaluation and refinement of culturally appropriate ACP conversations like those developed under Twin Cities Medical Society leadership • Tailored approaches developed with engagement of diverse communities • Ambassadors program sensitively reflects each cultural communities’ unique understandings about death and dying and how to talk about it.