Hi! I’m Joanna Hart (@JHartMD), a pulmonary & critical care physician here at the @PAIRCenter and @PennMedicine. I’m taking over today for National Healthcare Decisions Day (#NHDD) to raise awareness about Advance Care Planning (#ACP). 1/

#ACP allows people to make decisions in case they get too sick to speak for themselves to be sure their care is aligned with their values & reduce the burden on family. One part of ACP can be to complete an advance directive (AD). 2/

We know that certain groups (e.g. men, blacks, and those with less formal education) are less likely to document their preferences through ADs, which may be a marker of less #ACP. 3/

This is problematic because of well-documented ethnic and racial differences in end of life care quality. We don’t fully understand the mechanisms driving these differences but we know that most patients wish to avoid burdensome care. 4/

In our work, we explore patient- and system-level factors that can explain engagement (or lack thereof) in discussions about care preferences through research in real-world settings. bit.ly/2EDzHba #NHDD 5/

One example: a 2018 @JGIM paper that asked Are Demographic Characteristics Associated with AD Completion? bit.ly/2KxwxOB We looked at whether certain groups completed ADs less when all people were given the SAME opportunity #NHDD #NHDD2019 6/

We looked at data from 2 trials:

RCT 1 compared how AD info was presented to 484 seriously ill outpatients. RCT 2 compared framing of AD completion (active choice vs. no requirement) to 1279 new health system employees. 7/

Subjects in both RCTs received a professionally endorsed AD and educational materials. The primary outcome for our analyses was AD completion. We also looked at all demographics measured in each trial. 8/

FINDINGS: RCT 1: 59.1% completed an AD. NO patient characteristics were associated with AD completion. Even race! RCT 2: 27.8% completed an AD. Black or mixed/other race people were significantly MORE likely than whites to complete an AD. 9/

What does this mean?

>>When patients & healthy subjects had equal access to opportunities for AD completion, demographic characteristics were not consistently associated with AD completion. #NHDD #NHDD2019 10/

This contradicts findings from previous observational studies. Hypothesis: there are #disparities in access to OPPORTUNITIES to complete ADs (and possibly also broader discussions about care preferences), not lack of desire to discuss. #NHDD #NHDD2019 11/

How do we generate opportunities for #ACP? This is a goal of our work. We think solutions should be evidence-based; focused on patients, clinicians and family; and that the content & format improves the care patients receive. 12/

One of the ways we’re doing that is through understanding how patients think about the future: bit.ly/2SGtzHm 13/

When people make decisions about their health, such as engaging in #ACP, they have to think about what the future might bring. We don’t yet understand how people come up with those hopes and expectations and whether they are accurate. 14/

Head to nhdd.org for more information on #ACP and #NHDD. For a free, easy to use #ACP tool that helps you think through care options and communicate your wishes to your family members, go to ourcarewishes.org, developed with @PM_Innovation @PennMedicine 15/

To read more, check out:
ncbi.nlm.nih.gov/pubmed/28679811
ncbi.nlm.nih.gov/pubmed/26465826
ncbi.nlm.nih.gov/pubmed/30288436
ncbi.nlm.nih.gov/pubmed/25822402

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That’s all for today! Thank you for participating in #NHDD #NHDD2019 with me. Follow me at @JHartMD and go to pair.upenn.edu to learn more about my work.
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