It’s one of the most difficult and painful conversations anyone can have, but not having it makes things even more difficult and painful after you’re gone.

According to decades of research, residents of rural communities, particularly people of color, discuss their wishes for end-of-life care at much lower rates than urban and white Americans. As a result, they may not get the kind of health care they want when they are no longer able to speak for themselves.

Over the past 10 years, academic researchers and foundations in different parts of the country have been trying to address that disparity. They have created or underwritten programs that reach out to local churches and community groups and encourage members to have these difficult discussions with family.

One such program has been underway in Ulster and Dutchess counties since November, funded by a grant from the Mother Cabrini Foundation and carried out by Hudson Valley Hospice.

On a Tuesday evening in late April, a handful of people showed up at St. Paul A.M.E. Zion Church in Ellenville to hear a presentation about advance care planning, watch a film that told the fictionalized story of two adult children struggling to convince their terminally ill father to discuss his wishes for end-of-life care, and share their experiences and questions.

The Rev. Julius Collins, the paster at Shiloh Baptist Church, and his wife Bernice attended. Collins is the health care proxy for his 87-year-old aunt who lives in Bayville, Texas. A health care proxy allows its holder to make medical decisions on behalf of someone who has become incapacitated.

But it has been a frustrating experience, said Collins, because his aunt, who has been in and out of the hospital, refuses to discuss what measures she wants taken if she becomes seriously ill and is near death. For example, Collins doesn’t know if she would want to be hooked up to a ventilator to help her breathe.

“Discussion is easier said than done,” said Collins. “I can talk, but if you don’t talk back to me, there’s no discussion. I can ask questions, but if you don’t answer or you say we’ll talk tomorrow, well, nothing happens.”

The Rev. Gary Fuller, St. Paul’s pastor, said appointing a health care proxy and talking about – or better yet, writing down – your wishes for end-of-life care is important not only to ensure you receive the care you want but also to preserve your family.

“I have seen families torn apart at the hospital, one faction against another, not knowing what that sick person’s final wishes are and trying to speak for that person when that person cannot,” said Fuller, adding that he has even seen fistfights.

“When the final health care decision is put in writing and is distributed through the family, things will go a lot smoother,” Fuller said.

When Hudson Valley Hospice approached him about holding the outreach event, Fuller accepted, despite knowing that many of his parishioners, almost all of whom are over the age of 65, might not be receptive.

“A pastor must pastor and shepherd the flock to better grass and to teach,” he said.

New York State makes a free health care proxy form available online, with room to write down instructions about the use of feeding tubes, ventilators, resuscitation and other end-of-life care. It is a legally binding document, requiring the signature of two witnesses. No lawyer is needed. Another option is to hire a lawyer to draw up an advance directive, also known as a living will.

Dr. Lauren Van Scoy, a professor of medicine, humanities and public health sciences at Penn State College of Medicine in Hershey, Pennsylvania, studies advance care planning among minority communities.

Van Scoy said it used to be that only about 25 percent of people in the United States did any kind of advance care planning. But in 1990, Congress amended the Social Security Act to require that hospitals, nursing homes, hospice organizations and other health care facilities ask patients about advance care planning and document patient wishes around the care they want and don’t want to receive. Awareness campaigns followed.

“We started to see a rise in advanced directive completion, which is a surrogate marker of advanced care planning in general, and that number is now maybe 60 percent,” said Van Scoy. “But those populations tend to be white, older Americans. In Hispanic and Black populations, the numbers remain stagnant at less than 25 percent.”

There are many factors behind the disparity, she said, including distrust of the health care system, lack of access to primary care physicians, a lack of knowledge about advance care planning and stigma around talking about death.

Some cultures, particularly Asian and Native American, believe that “by talking about death and dying, they can manifest it,” said Van Scoy.

Lisa Wilson, vice president of marketing at Hudson Valley Hospice, made the presentation and led the discussion at April’s meeting at St. Paul’s. She held similar events last year, beginning in November, at The Lunchbox, a community meal program in Poughkeepsie; Beulah Baptist Church, also in Poughkeepsie; Ellenville United Methodist Church; and a pop-up in Kingston.

More than a dozen events have been held or are scheduled, so far, for this year.

Wilson said the program is branching out to include senior living facilities and public libraries and is no longer limited to minority communities. “We are taking it to everybody because everybody needs this,” she said.

The Hospice and Palliative Care Association of New York State applied for the $170,000 grant from the Mother Cabrini Foundation, which was awarded in January 2023, and enlisted Hudson Valley Hospice to conduct the outreach.

Jeanne Chirico, the association’s president, said the program began with listening sessions with faith leaders in the Hudson Valley.

“One of the things we did not want to do was to assume we understood what the community needed or wanted in terms of conversations and education,” said Chirico.

The Mother Cabrini Foundation grant runs out at the end of June, but Wilson said Hudson Valley Hospice is applying for other funds, and recently received a grant from Ulster Savings Bank to print workbooks about advance care planning that Wilson distributes wherever she talks.

These community outreach programs work to overcome cultural, religious and spiritual barriers to advance care planning, said Van Skoy, who is running a five-year randomized controlled trial called Project Talk, funded by the National Institutes of Health. The researchers, who are now in year three of the study, have partnered with local hospice organizations, community groups, churches, health care systems and other nonprofits to evaluate different approaches for engaging underserved individuals across the country in end-of-life care planning.

“We have absolutely shown that going into the community venues has resulted in very high uptake of advanced care planning behaviors,” said Van Skoy.

Sitting in one of the pews at St. Paul A.M.E. Zion Church after April’s event, Collins, age 76, said he and his wife have discussed which of their three daughters would make the best health care proxy. “But putting it down on paper, we’ve never gone there,” said Collins. He is healthy and active, and so advanced care planning never seemed urgent, he said.

But after listening to Wilson’s presentation and the discussion in the room, Collins said he was going to begin work on a health care proxy form that evening.

“I realize that it’s more about the people that I leave behind, the people who love me and care for me, than it is about me,” he said.

Editor’s note: This article was written with the support of a journalism fellowship from the Gerontological Society of America, the Journalists Network on Generations and the Silver Century Foundation.