While aging populations of color represent a growing base of patients with serious illness and end-of-life care needs, these groups are among the most underserved and underrepresented in the U. S. health care system. As research reflects a deepened racial divide in access to care and services, much is at stake for hospice care providers as they seek ways to close the gaps. Many have shifted advance care planning models as a strategic avenue to increase hospice utilization and awareness.
The country’s aging population has swelled in the last decade while also growing more racially and ethnically diverse, according to a U.S. Census Bureau report. The number of adults 65 and older had grown nationwide by more than 30% from 2010 to 2019. Despite growth, seniors of color are often less likely to seek out and utilize services such as hospice, palliative care or advance care planning (ACP).
“As part of the whole health care system coming to grips with racial injustice and health care disparities, there is a focus on interventions that are more appropriate for different groups,” said Marian Grant, senior regulatory advisor, Coalition to Transform Advanced Care (C-TAC). “Autonomy may not be always the first choice of some cultures and we need to be more open and humble at assessing the patient and family’s wishes regarding ACP and other health decision-making.”
African American populations saw an 11.6% increase nationwide between 2010 and 2019, with Texas experiencing the largest increase over other states, according to the U.S. Census Bureau. The American Indian or Alaska Native population grew by a bit more than 13%. Native Hawaiian or other Pacific islander populations grew by 21%. Hispanic populations increased by 20%, and Asian populations swelled by nearly 30%.
Barriers to advance care planning affect people of color in higher numbers, including low health literacy, education levels, and socioeconomic factors. The disparities represent people in need as well as an untapped market for hospice and palliative care providers.
“There is a direct correlation between advance care planning and hospice utilization, ” said Cindy Safe, founding executive director of Coda Alliance and Gary Lee, M.D., a palliative and hospice care physician, in an email to Hospice News. “By getting people to discuss it early and make decisions, we bring hospice into the discussion. The upfront conversation is fundamental in increasing utilization. Once we can get families to discuss end-of-life planning, we see a significant shift in perception.”
Hospice and palliative care providers have wrangled with barriers to widespread adoption of advance care planning, with the recent research adding public attitudes as an additional roadblock. Studies have shown that public perception can limit use of these services, with many racial minorities reluctant to pursue care from a lack of understanding and awareness.
Advance care planning can provide an opportunity for education about hospice and palliative care, according to Safe and Lee. Coda Alliance developed the “Go Wish” card game to help ease the awkwardness that can come with advance care planning conversations and make end-of-life wishes more clear. The approach guides ACP conversations with a focus on individual, family and personal value-based choices to choose from during the game.
“The big roadblock is in getting people to focus on the issue at all. We are seeing health care providers get better at multicultural outreach — at least in marketing,” said Safe and Lee. “This needs to go further into the organization to help health care providers understand how best to encourage the end-of-life conversation. Advance care planning can’t be left to health care providers. It’s something that can be done in community settings.”
The Speak(easy) Howard program is another community-based effort to expand advance care planning utilization through dinner conversations.
“[Speak(easy)] is a key way that we’ve tried to meet, particularly communities of color, but just all residents with a connection,” said Tiffany Callender Erbelding, senior program director of the Horizon Foundation which works with the Maryland Hospice and Palliative Network to support the community health initiative. “We’ve engaged with faith leaders, our local hospital, primary care offices, senior clubs and community groups so that they will hear about this idea of advanced care planning from multiple messengers within Howard County. That’s huge, because when this message is siloed and it’s only presented from the health care system, from your primary care doctor or by your lawyer, then that can make it feel very narrow. But when you’re hearing that message from multiple people, then it becomes something that you’re more familiar with and it’s a little bit less scary. I think that has been key.”
Branching out into various community groups has been a tactic many hospices are employing, making ties with diverse spiritual, religious and faith leaders and organizations.
Gloria Thomas Anderson, assistant professor in social work at North Carolina State University, partners with hospice organizations through the “Let’s Talk About ACP,” a program intended to address disparity issues and serve as a resource for faith and community leaders nationwide.
Increasing diversity training and hiring efforts is a strategy that Thomas Anderson emphasized would be key to improving understanding among hospice staff. This can help break through walls such as communication barriers, social biases, stereotypes and prejudices.
Despite efforts in the private sector, policy changes at a national and regional level will be needed to further expand advance care planning utilization nationwide. Several hospice, palliative and advance care agencies have been pushing for change.
Sen. Richard Blumenthal (D-Conn.) recently introduced the Compassionate Care Act in the U.S. Senate to finance public education about advance care planning and expand federal resources to support access to those services.
C-TAC has advocated for making audio-only telehealth for ACP available beyond the COVID-19 pandemic. ACP has been a big part of C-TAC’s policy advocacy, according to Grant.
“Requiring ACP as a standard clinical process and measure in all Medicare programs [could] allow advance directive reciprocity across all states,” said Grant. “We’re also advocating for legislation that would allow licensed clinical social workers and nurse case managers to be able to bill Medicare for having these conversations.”