WASHINGTON, Jan. 8, 2018 – Hospice Foundation of America (HFA) this month will launch an exciting, 14-month grant initiative funded by the John and Wauna Harman (jwH) Foundation that aims to engage underserved communities in advance care planning (ACP) activities.
Hospice Foundation of America will use the end-of-life conversation game, Hello, to support a collaborative research project led by Lauren Jodi Van Scoy, M.D. at Penn State Health Milton S. Hershey Medical Center through her research program, Project Talk. The research component of the project, also funded by the jwH
Foundation, aims to provide a significant contribution to the field by yielding information about the ACP needs
of African Americans and about the value of the activity on ACP behaviors in other underrepresented population groups.
Hello, a game developed by the Philadelphia-based company, Common Practice, has been found to stimulate
substantive, enjoyable and meaningful end-of-life discussions among participants. Research has shown that
more than 70 percent of participants who played the game went on to perform additional ACP actions. However, that body of research is currently limited by a primarily Caucasian or South Asian Indian demographic.
“Learning how to effectively engage the African American community in advance care planning activities is so
important if we’re to really make a difference in improving the end-of-life experience for our patients,” said Dr.
Lauren Jodi Van Scoy, a pulmonary and critical care physician who conducts research around advance care
planning interventions.
It is well-established that African Americans have historically low rates of ACP completion when compared to
Caucasians and that they often receive overly aggressive and unwanted care at the end of life. Thus, learning
how best to engage the African American communities in ACP activities is critical to improving access to and
quality of end-of-life care. Research has indicated that African Americans are more likely to have informal
discussions about ACP issues than they are to complete advance directives, suggesting that a conversation focused tool such as Hello, rather than an advance direction completion intervention, may be more appropriate.
“Conversations with loved ones about end-of-life preferences are the first, and perhaps the most important step
someone can take when it comes to making sure their care wishes are carried out,” said Amy Tucci, HFA
president and CEO. “Hello provides a unique approach to encourage those conversations. We are looking
forward to working with Dr. Van Scoy and the Hello developers, Jethro Heiko and Nick Jehlen, to provide an
opportunity for people to have end-of-life care conversations in a community setting while we learn from them
about how to better support end-of-life decision-making.”
HFA, which recently completed a successful national awareness campaign on the importance of ACP through the Frontline PBS film Being Mortal, also funded by the jwH Foundation, will identify game locations and supply
selected sites with the Hello game and training to support successful community game events. All qualifying
locations will be geographically diverse. Selected locations must be able to commit to a minimum number of
game participants and invite players from population groups traditionally underserved by the U.S. health care
system.
Fifteen of the 50 qualified locations will be selected to participate in the research aspect of the project, which
will involve a pre-game assessment, post-game questions and focus groups, and 3-month follow-up phone
interviews to assess ACP behaviors that have been performed.
“The research we’ve done to date has demonstrated that Hello is a well-received, enjoyable and effective way to engage people in these challenging conversations,” said Dr. Van Scoy. “The funding from the jwH foundation will allow us to broaden our studies to a national audience with a focus on African American communities, where the need for high quality advance care planning is even more critical.”
Upon completion of the project, this collaboration is expected to have reached up to 1,000 African American
individuals and 1,500 additional individuals from other underrepresented communities, providing them with an
enjoyable and enriching experience that facilities the communication about end-of-life issues, ultimately
improving the quality of their end-of-life care.
For information about how to be part of the project, contact Amy Tucci or Cindy Bramble of HFA at 202-457-
