# Advance Care Planning Motivators Among Adults With Serious Illness

## TL;DR

People with serious illness are more likely to engage in advance care planning discussions, but documentation remains low.

## Contribution

The study identifies that worries about surrogates and care access significantly increase advance care planning engagement.

## Key findings

- Serious illness is associated with higher odds of ACP discussions with close people and clinicians.
- Worries about surrogates and care access correlate with increased ACP engagement.
- Documentation of ACP remains low despite high discussion rates.

## Abstract

Are serious illness diagnosis and worries about serious illness associated with advance care planning (ACP) engagement?

In this cross-sectional study including a nationally representative survey of 1854 participants, those with serious illness were significantly more likely than those without to have discussed ACP with people close to them and clinicians. Participants who were worried (vs not worried) about surrogates making the best or right decisions or having access to best treatments had significantly higher ACP engagement.

These findings suggest that framing ACP as a means of helping patients and their surrogates make the best medical decisions may be effective in increasing ACP engagement.

This cross-sectional study of nationally representative survey of US adults compares prevalence of advance care planning among those with vs without serious illness.

Advance care planning (ACP) engagement is poorly understood among people with serious illness.

Determine whether diagnosis of and worries about serious illness are associated with ACP engagement.

This cross-sectional study was based on a nationally representative survey administered April to May 2021 online or by telephone. Eligible participants were adults and English or Spanish language. Data were analyzed May 2023 to February 2025).

Having a serious illness.

Three domains of ACP engagement: discussion with people close to participants, discussion with clinicians, and documentation in writing. Barriers to ACP documentation and worries about serious illness were also assessed. Survey responses were weighted to reflect the US Census population. χ2 tests and multivariable logistic regression models were adjusted for covariables to assess associations between serious illness and each ACP outcome.

Among 1854 participants (468 [weighted percentage, 25.2%] aged 65 years or older; 955 women [weighted percentage, 51.9%]; 193 Black [weighted percentage, 12.0%], 288 Hispanic [weighted percentage, 16.7%], 1218 White [weighted percentage, 61.2%]), 367 (weighted percentage, 20%) had serious illness. Overall, 1254 (weighted percentage, 65.9%) had engaged in ACP (283 of 367 [weighted percentage, 76.5%] serious illness vs 971 of 1487 [weighted percentage, 62.6%] without serious illness; P < .001); 1071 (weighted percentage, 55.3%) discussed ACP with people close to them, 462 (weighted percentage, 22.5%) discussed with clinicians, and 650 (weighted percentage, 32.8%) documented a surrogate. People with serious illness had higher odds than those without having discussed choices for surrogates and medical wishes with people close to them (aOR, 1.57 [95% CI, 1.19-2.07] and 1.66 [95% CI, 1.26-2.19]) and with clinicians (aOR, 2.16 [95% CI, 1.63-2.88] and 2.22 [95% CI, 1.67-2.94]). Serious illness status was not associated with ACP documentation. The most common barriers to documentation were not having thought about it (489 of 1171 [weighted percentage, 43.1%]) and assuming surrogates would know what they want (369 of 1171 [weighted percentage, 32.2%]). Participants who were worried (vs not worried) about being able to afford care, surrogates making the best or right decisions, having access to the best treatments, or having high stress or symptoms had significantly higher rates of ACP engagement.

In this survey study of adults in the US, we found that ACP discussions with someone close to them were high, yet discussions with clinicians and documentation were low, even among people with serious illness. Our findings offer insights into how people’s worries about serious illness care may affect their engagement in ACP, and how to leverage these insights to tailor patient-facing messaging about ACP.