Adults with serious illness in the US were significantly more likely than those without to think about their advance care plans, a new study has found. Those concerned about whether their surrogates would make the best decisions, or who worried whether they would have access to the most appropriate treatments also had significantly higher engagement in their advance care planning.

The study’s lead author, Sarah Nouri, MD, MPH, and her coauthors wrote that the point of the study was to find practical ways of addressing what previous research has shown are low overall rates of advance care planning engagement, “particularly,” they wrote, “among populations experiencing systemic disadvantage, such as racially or ethnically minoritized populations and those with lower socioeconomic status.”

Nouri and her coinvestigators said it was important to specify which worries around a serious illness diagnosis may influence a person’s engagement with their advance care planning. Nouri is an assistant professor of palliative medicine at the University of California, San Francisco. The study was published online in JAMA Network Open.

Nouri and colleagues’ study was based on a cross-sectional, nationally representative survey of 1854 US adults surveyed from April to May 2021, either online or by telephone. Eligible participants spoke either English or Spanish. Data were analyzed from May 2023 through February 2025. Three domains of advance care planning engagement were assessed, including whether the person had discussed advance care with anyone close to them, whether they had discussed it with clinicians, and whether they had documented their wishes in writing. Any barriers to documentation were assessed, as were any worries about serious illness.

About a quarter of respondents were 65 years or older, and just over half were women. About 12% of those surveyed were Black, 16.7% were Hispanic, and 61.2% were White individuals.

Overall, 65.9% had engaged in advance care planning. Those with serious illness were about a fifth of the population surveyed (n = 367) and 283 out of 367 had engaged in such planning (76.5%). About 62.6% (P < .001) of those who’d engaged in advance care planning had no serious illness (971 of 1487).

Participants with serious illness were more likely to be women (221 of 367 [64.6%]; P < .001), have lower income (247 of 367 [58.8%]), or live in the South (131 of 367 [42.2%]; P = .03). They were also less likely to live in a metropolitan area (297 of 367 [81.5%]; P = .02) or have confidence managing their health afflictions (66 of 367 [18.4%]; P < .001).

Over half (55.3%) of the participants answered that they had discussed advance care planning with someone close to them. Discussions with clinicians were reported by 22.5% of respondents.

More patients with vs without serious illness reported having discussed their choices for surrogates and medical wishes with people close to them (adjusted odds ratio [aOR], 1.57; 95% CI, 1.19-2.07; and aOR, 1.66; 95% CI, 1.26-2.19, respectively) and with clinicians (aOR, 2.16; 95% CI, 1.63-2.88; and aOR, 2.22; 95% CI, 1.67-2.94, respectively).

Illness status was not associated with advance care planning documentation. The most common barriers to documentation were not having thought about it (43.1%) and assuming surrogates would know what the ill person wanted (32.2%). Participants with concerns about being able to afford care, their surrogates making the best decisions, having access to the best treatments, or having high stress or symptoms had significantly higher rates of advance care planning engagement.

A minor portion of respondents reported thinking these documents would make a difference in their care (6.8%). Others said they would prefer their doctors to make decisions for them (5.7%). Not having anyone who could be trusted to act as a surrogate (5.6%) was another reason. A small number of those surveyed said advance planning was not part of their culture, religion, or family tradition (5.4%). Lastly, there were those who said that documenting their advance care plan would mean they’d get poorer care (5.1%).

Nouri and her coauthors concluded that their findings may help clinicians and others to increase advance care planning by framing the discussion around how it is a means of helping patients and their surrogates make the best medical decisions.

“These findings also highlight areas in which both advance care planning and serious illness care must grow to address people’s concerns,” the authors wrote. Next steps must include a greater focus on motivators and facilitators of advance care planning discussions with surrogates and clinicians, they said, as well as documentation.

The co-director of the Serious Illness Care Program at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, Amelia Cullinan, MD, welcomed the study to the canon.

“Healthcare teams often worry that they will cause harm to patients by talking about advance care planning, that patients might lose trust in them, or lose hope,” Cullinan told Medscape Medical. “I hope that clinicians reading this article will recognize that the majority of seriously ill patients want to discuss advance care planning, and they need their healthcare team’s help to understand the importance of documenting their wishes.”

For that to happen, however, Cullinan said that “healthcare organizations need to provide infrastructure such as workflows, eMR [electronic medical record] builds, staff, etc., to make advance care planning a routine, well-run operation that takes the load off of seriously ill patients.”

Cullinan is also the section chief and director of palliative care medicine at Geisel School of Medicine at Dartmouth College, also in Lebanon, New Hampshire.

Cullinan said that there are resources for clinicians who seek training in advance care planning communication strategies, such as those at the Harvard-based, Ariadne Labs. “These communication frameworks help clinicians to act as a guide, or advisor to patients and surrogates, instead of simply informing them about options and then saying ‘it’s your choice,’” Cullinan said.

Nouri reported no disclosures. Cullinan had no disclosures to report.