Lauren Jodi Van Scoy, M.D., director of the Project Talk Communication Lab, is spearheading a project to boost advance care planning among underserved populations in partnership with Penn State Milton S. Hershey Medical Center, Hospice Foundation of America (HFA), and the University of Kentucky.
Van Scoy is an associate professor of medicine, humanities and public health sciences at Penn State.
Advance care planning has been shown to significantly impact the quality and experience when a patient reaches life’s final stages. However, racial and socioeconomic barriers persist that limit access to advance care planning for many patients.
The current research led by Van Scoy is financed through a $3.5 million five-year grant from the National Institutes of Health. The project will evaluate methods of promoting advance care planning through the use of games and conversation toolkits. Preliminary research focused on the African American community has shown promising results. That national study of 384 underserved African Americans found that high rates of advance care planning behavior were associated with participation in game events at community venues.
Hospice News sat down with Van Scoy to talk about how hospice providers and community institutions are reaching underserved populations to stimulate adoption of advance care planning.
Who are some of the underserved populations that you’re considering in this research?
We purposely defined “underserved” really broadly, because everybody can benefit from advanced care planning. But we also know that there’s a lot of health inequities around racial minorities with regards to end-of-life care.
We’re looking at African American and Hispanic populations in particular, but we’re also very interested in serving rural communities. That could be Caucasian rural, or just people below or close to the poverty line. Because the project’s so large, we have room for everybody.
Can you give me a sense of the size and scale of the project?
The grant was $3.5 million dollars for five years to fund work in 75 different communities across the United States. That’s pretty big for an advanced care planning trial. A lot of trials usually have four or five different sites to be considered large.
We are using this community-based network, through our partnership with Hospice Foundation of America, that allows us to really have that reach. We are connecting with hospices and organizations that lets us get into communities where we wouldn’t otherwise have access. The research will include about 1,200 people.
Can you talk about some of the barriers that these underserved populations experience when it comes to advanced care planning?
There’s so many — two big ones are lack of access to health care and distrust of the health care infrastructure and systems. A lot of these communities are understandably distrustful based on a history of injustices and racial inequities. End-of-life care is a very sensitive issue, and people don’t want to talk about it. You have all of those barriers working together.
It’s particularly problematic in certain cultures where death tends to be a more taboo subject. They want to maintain hope and optimism. Avoiding the topic is something that is a big barrier for people to overcome.
There’s also this misconception that you need a lawyer for advanced directives. In most states, you don’t need an attorney. People have this conception that you have to do a will and estate plan as part of your advanced directive, which is another knowledge gap,
Can you talk about the methods you’re using in this research?
We’re trying to leverage people that are embedded in the community. These are trusted networks that can deliver our message more effectively than we can. We’re reaching out to the church leaders and faith-based organization leaders, the hospice communities and hospital systems. These are places people turn to for their local information, because that means more to people if it comes from their own communities or leaders.
As for the actual advanced care planning interventions we’re testing, one is a conversation game called Hello. I’ve been doing research on this game for eight years, and the preliminary data is really compelling. We went to African American communities and hosted these games, where it made the conversations more engaging, more inviting, and it took away a little bit of that scare. It really allows psychological safety and a safe space for people to have these sensitive conversations. A third of the sites will use that intervention.
Another group of sites are going to get The Conversation Project, which is a more traditional tool that is very well known nationally. Their toolkits are similarly engaging; it’s just not gamified. So the experiment looks at whether a gamified approach or a community-based workbook is more effective or are they equally effective.
We have a third group that is our control arm or “placebo group.” There we are playing a fun game that has nothing to do with advanced care planning. Afterwards we’re going to give them didactic instruction on advance directives.
There’s all these different types of tools that are available to us. The question is: What’s the best approach for different types of communities?
Does advanced care planning influence hospice utilization?
Absolutely, when people talk about advanced care planning they’re more open to the idea that a time might come where hospice might be on their horizon. The place that it really helps is with referrals to hospice. If people know in advance that a patient and family is open to hospice, it makes it a lot easier to actually connect with a provider. When you’ve had those conversations up front, it makes it so much easier for them to say, “Yes, please send the hospice people. Now is the time.”
Do you have plans for next steps beyond this project? How will you disseminate the results and translate the data into action?
We’re going to be doing dissemination through the scientific community, of course, through presentations and papers. We’re also planning on going back to the communities that participate and providing them with the outcomes to the communities through community engagement, brochures, leaflets, and presentations. We’ll have a website with video to describe what we learned and what our next steps are going to be.
As one trial closes, we’re going to release all of our resources. We can’t do that upfront because of the experiment, but once that is finished, they’ll have access to all of the tools and anything that we can provide to help these communities do advanced care planning.