New Trial Finds a Way to Narrow the Racial Gap in End-of-Life Planning

A six-year clinical trial testing two ways of helping seriously ill older adults plan for the end of life found that neither approach worked better on its own — but one of them closed a long-standing racial gap in a way the researchers had not expected going in. The findings, from a federally funded study spanning ten clinics across the South, were published online Wednesday in a randomized clinical trial in JAMA.

The trial, known as EQUAL ACP, enrolled Black and white patients age 65 and older who had a serious illness such as advanced cancer, heart failure or lung disease. It compared a facilitator-led conversation method called Respecting Choices First Steps against a self-guided option built around the Five Wishes document, a plain-language form patients can fill out largely on their own. Researchers were trying to answer two linked questions: which method gets more people to document or discuss their wishes for future medical care, and whether either one narrows the persistent gap between how often Black and white patients complete that planning.

The numbers

The study followed 791 participants — 427 who identified as Black and 364 as white — recruited from nine primary care practices and one geriatrics clinic. Clinics, rather than individual patients, were randomly assigned to offer one method or the other, and participants were tracked for a year to see whether they completed a formal advance directive, had a clinician document their wishes, or simply had a reported conversation with family about their care preferences.

Across the full, pooled sample of 789 patients with outcome data, 69 percent completed some form of advance care planning within a year — the large majority of it informal, through family conversations rather than signed paperwork. Neither method significantly outperformed the other within either racial group on its own: Black participants completed planning 71 percent of the time with the facilitated approach versus 62 percent with the self-guided one, a difference that did not reach statistical significance. White participants showed the opposite pattern, completing planning slightly less often with facilitation (68 percent) than with the self-guided form (78 percent).

The notable result sat one level up. When the researchers compared how the size of that treatment effect differed by race, the interaction was statistically significant: the facilitated, conversation-based approach worked meaningfully better for Black participants relative to white participants than the raw within-group numbers alone suggested. The trial also tested whether pairing patients with a facilitator of the same race mattered; it found no measurable effect from that kind of racial concordance.

How the gap took hold

Advance care planning has been part of American health policy since the Patient Self-Determination Act of 1990 required hospitals to ask patients about advance directives, and Medicare has reimbursed doctors for these conversations as a distinct billable service since 2016. Despite that, completion rates have stayed stubbornly low and uneven. A long-cited federal data brief on long-term care populations found advance directives on file for only 28 percent of home health patients, rising to 65 percent of nursing home residents and 88 percent of hospice patients — figures that illustrate how planning tends to arrive only once a patient is already deep into serious illness.

Race has consistently widened that gap further. Research cited in the new paper and in the editorial that accompanies it points to a mix of causes: unequal access to primary and specialty care, language and literacy barriers in how forms are written, and what the editorial's authors describe bluntly as justified distrust of a health system with a documented history of mistreating Black patients. The EQUAL ACP trial was designed specifically to test whether a more structured, relationship-based conversation — rather than a document handed to a patient to complete alone — could overcome some of that distrust.

"Advance care planning (ACP) and serious illness communication guide complex medical care... Yet prior research reveals disparities in serious illness care among Black individuals in the United States, possibly due to factors such as unequal access to health care and justifiable distrust of the health system."

The trial, registered publicly as NCT03516994, enrolled its first participants in 2018 and finished primary data collection in 2024. It was funded through a roughly $6 million award from the Patient-Centered Outcomes Research Institute, a nonprofit created by Congress specifically to fund comparative studies of this kind, and it drew on research teams at Duke University, the University of Alabama at Birmingham, Emory University, UT Southwestern Medical Center and the South Carolina Coalition for the Care of the Seriously Ill.

Who is affected

The participants were, by design, patients already living with serious illness late in life — the population for whom advance care planning has the most immediate practical consequence, shaping decisions about resuscitation, hospitalization and hospice care that families are otherwise left to guess at during a crisis. All ten clinics were in the South, a region with its own particular history around race, medicine and rural health access, so the results may not translate directly to other parts of the country or to younger patients with chronic but less advanced disease.

Because the design paired each clinic with only one of the two methods, the comparison that matters most to patients is less "which form should I fill out" than which model of care their clinic or health system chooses to adopt. That makes the findings more immediately relevant to hospital systems, geriatric practices and insurers deciding how to structure advance care planning programs than to an individual patient weighing a choice on their own.

What experts say

The trial's authors, led by Kimberly S. Johnson of Duke University's Division of Geriatrics, were cautious in their own conclusions, writing that advance care planning completion "did not differ significantly" between the two approaches within either racial group taken alone. That framing matters: the headline comparison the trial was built to test came back essentially a tie. The more consequential finding, the race-by-treatment interaction suggesting facilitated conversations help close the racial gap even where a simple before-and-after comparison does not, is the kind of secondary result that researchers typically flag as worth testing again rather than treating as settled.

The accompanying editorial, written by physicians at the University of California, Los Angeles and the University of California, San Francisco, frames the trial as evidence that the format of advance care planning programs — not just their existence — deserves more attention from health systems trying to reduce disparities in serious illness care. Neither the authors nor the editorialists claim the facilitated model is a fix on its own; the editorial notes that distrust rooted in real historical harms is not something a single structured conversation is likely to resolve by itself.

What happens next

Because the race-by-treatment interaction was a secondary analysis rather than the trial's primary question, it is likely to prompt follow-up studies rather than an immediate change in national guidelines. The research team has signaled interest in examining which elements of the facilitated conversations — the trust-building, the structured format, the trained facilitator's role — drove the difference, and whether the approach holds up in clinics outside the South or among Hispanic and Asian American patients not included in this trial. For now, the study adds to a small but growing body of evidence that how a conversation about end-of-life care is delivered, not simply whether it happens, can shape whether patients from different racial backgrounds end up with their wishes on record at all.