Knowledge of advance care planning and advance directives among US adults: Implications for health policy and practice

Abstract

Background:

Advance care planning (ACP) is the process of identifying and communicating values and goals in preparation for future shared decision-making in medical settings. Decisions are legally supported by an advance directive (AD) document designating healthcare agent(s) and future medical treatment preferences. Although important, ACP engagement in the United States remains low. Previous US research focuses heavily on ACP among older adults and those with life-limiting illness. Few studies have sought to understand knowledge of and engagement with ACP among the general population in primary care settings and potential barriers to completion of ACP.

Objectives:

This study examined US adults’ knowledge and perceived importance of ACP and ADs, their preferences regarding who—if anyone—would they choose to assist with completion, and their expectations of the time and cost associated with ACP and ADs.

Design:

An anonymous online survey was developed following pilot focus groups that identified misconceptions regarding ACP and ADs and the role of physicians in end-of-life decision-making. Questions assessing expected time and out-of-pocket cost were in response to feedback from clinical social workers providing ACP services in primary care settings.

Methods:

Participants were recruited through social media and emailed invitations to complete a short, online survey in Qualtrics. Two hundred and forty-eight adults residing in the United States completed the survey.

Results:

Participants demonstrated low to moderate knowledge of ACP and ADs, despite rating them as important. Most expressed a desire for professional assistance, but lacked clarity about which professional. They assumed that it was costly and time-consuming.

Conclusion:

Findings indicate persistent gaps in ACP and AD literacy among US adults, along with misconceptions about access, time, and costs that may be contributing to low engagement. Increasing public education and expanding access to knowledgeable professionals may help reduce barriers and promote more equitable engagement in ACP.

Plain language summary

Knowledge of advance care planning and advance directives among US adults

This study seeks to explore knowledge of advance care planning and advance directives among the general adult population in the United States. Through an online anonymous survey, we asked individuals to define advance care planning and advance directives. We also sought to understand preference for the use of a professional to assist with advance care planning and perceptions of the time it takes to complete as well as the perceived cost. Though advance care planning and advance directives are free to complete, most participants believed the process costs money and wished to complete the process with a professional such as a physician or a lawyer. Our study findings suggest that there continues to be low literacy of what advance care planning is, with many confusing ACP with wills and estate planning. The limited knowledge of ACP may contribute to confusion and misconceptions, which are reflected in the low rates of Americans with a completed Advance Directive. We suggest public campaigns and additional training for professionals to combat low literacy among the general public of advance care planning.

Keywords

advance care planning end of life death education advance directive patient decision-making

Introduction

The end of a person’s life is a social process that simultaneously influences and creates meaning for the individuals and groups involved.¹ Advance care planning (ACP) is understood as a proactive, person-centered process that enables adults at any stage of health to articulate their values and life goals that influence preferences for future medical treatments including unexpected emergency care, management of chronic illness, end of life, and after care.² ACP intentionally engages the full spectrum of a person’s bio-psycho-social-spiritual (BPSS) experiences and perspectives.³

Globally, ACP emerged in response to rapid medical advances that have extended life while increasing the likelihood of prolonged dying through technologically intrusive interventions. Although the legal and policy frameworks vary across countries, the underlying clinical purpose is consistent: to uphold patient autonomy and support shared decision-making when individuals are unable to speak for themselves.⁴ For this shared decision-making process between individuals and their physicians to work, particularly within a life-limiting situation, it is the patient’s responsibility to be prepared to communicate their values and goals of care.⁵

In the United States, patient rights related to future medical decision-making—via an advance directive (AD) for healthcare—were formalized through the Patient Self-Determination Act,⁶ while other countries have adopted parallel mechanisms. For example, India’s Supreme Court established the legality of advanced medical directives in 2018 to improve patient autonomy.⁷ Across diverse legal frameworks, a shared ethical commitment persists—individuals should retain meaningful control over decisions affecting their healthcare, even when they are no longer able to participate directly.

Completing an AD, or its functional equivalent, is the primary way to legally authorize the person of the patient’s choosing to communicate their values and goals of care if they cannot or will not advocate for themselves. However, simply completing a written AD alone is insufficient to ensure a person’s wishes are understood and respected.⁸ Individuals must engage in deep, thoughtful reflection of their values, priorities, and what quality of life means to them.^2,9 It is essential to have meaningful conversations with potential decision-makers, especially one’s designated healthcare agent (sometimes referred to as a durable power of attorney for healthcare) and care teams—before a medical crisis occurs. ACP with completed ADs is an important aspect of death literacy in contemporary global societies.

Following the Institute of Medicine’s 2015 report, Dying in America,⁹ the Centers for Medicare and Medicaid Services (CMS) established new Current Procedural Terminology (CPT^®) codes to reimburse ACP services delivered by a physician or other qualified healthcare professionals.¹⁰ These professionals include nurses, physician assistants, social workers, and team members working under the medical management of the beneficiary’s treating physician.¹¹ This reimbursement structure enabled clinicians to bill Medicare or Medicaid for ACP facilitation time.

The establishment of these billing codes also enabled researchers to examine the impact of ACP services on end-of-life healthcare utilization. In the United States, ACP facilitation has been shown to significantly influence patterns of care in the last 30 days of life, as measured across six categorical standards endorsed by the United States National Quality Forum.¹² A random sampling of 2017 decedents who had been receiving Medicare coverage showed that only 6.3% had engaged in ACP facilitation services as indicated by the use of CPT code 99497.¹² However, individuals who received ACP services were significantly less likely to die in a hospital, to be admitted to a hospital, visit an emergency department or be in an intensive care unit within the last 30 days of life. There was no significant difference in late hospice care or total mean expenditures.¹¹

Inspired by this reimbursement model, a large southeastern US health system—where the coauthor is affiliated—developed a dedicated ACP program to increase patient engagement while reducing the burden placed on physicians and nurses. Licensed clinical social workers (LCSWs), an often-underutilized professional workforce,¹ were embedded in four primary care practices around the Greater Atlanta area to provide ACP facilitation services in conjunction with patients’ annual wellness visit (AWV).

During regular program implementation, the LCSWs reported that patients often declined ACP services due to limited understanding of ACP and ADs, reluctance to spend the time on ACP and ADs, as well as concerns about potential out-of-pocket costs. Cost is a well-documented barrier to healthcare that disproportionately affects marginalized groups and contributes to adverse outcomes.^13
–16 Although Moore et al. suggest that time and cost are not major obstacles to ACP completion, participants in that study lacked clarity on how to begin the process.¹⁷ Moreover, they were not asked about preferences for professional facilitation services, which may influence perceived burdens about time and cost.

Broader literature indicates that while public awareness of ACP is generally high,¹⁸ actual knowledge of ACP remains low, with many individuals expressing uncertainty or confusion regarding what ACP entails.¹⁹ Knowledge and perceptions also vary substantially among minority populations in the United States.¹⁹ Most ACP research focuses on adults over the age of 65, those with life-limiting illnesses,^20
–22 international populations,^23
–26 or healthcare professionals.^27,28 Emerging studies emphasize digital tools to prompt ACP engagement but often do not assess ACP literacy.^29,30

Objectives

This study seeks to identify practical barriers that may influence US adults’ engagement in ACP and AD completion. Misconceptions about the nature of ACP and ADs and the role of physicians in end‑of‑life decision‑making were identified during pilot focus groups.

A survey was developed to examine the general public’s knowledge of ACP and ADs, with particular attention to preferences for professional assistance, the expected amount of time to complete ACP and an AD, and the anticipated out-of-pocket costs associated with professional assistance. The general public was defined for this study as adults over the age of 18. To address these aims, the study explored the following research questions:

(1) How do US adults define ACP and ADs in their own words?

(2) How important do they think ACP and ADs are?

(3) Do they prefer professional assistance or a do-it-yourself approach?

(4) Among those who prefer professional assistance, who would they want assistance from?

(5) What do individuals perceive as the estimated time and cost commitment required to complete the ACP/AD process?

These questions were designed to help determine ACP literacy, clarify barriers to engagement and inform strategies for enhancing ACP accessibility and uptake across diverse populations.

Design

This study employed an IRB-approved mixed-method design (IRB-FY23-192) utilizing an anonymous online survey administered through the Qualtrics platform. Participants were recruited via a broad social media outreach strategy, including posts and invitations on Facebook, Instagram, LinkedIn, and other commonly used platforms. Recruitment materials included a brief study description and a secure link or QR code directing interested individuals to the survey portal. Unlike other studies on ACP, we sought to reach a range of adults in the United States, rather than targeting individuals over the age of 65 or with a life-limiting condition.

Upon accessing the survey and prior to participation, individuals were presented with an informed consent form outlining the study’s purpose, procedures, and confidentiality safeguards. Those who selected “I agree to participate” were directed to the full survey. Participants were able to leave the survey at any time.

Methods

The survey instrument consisted of 38 items organized into the following domains: demographics (6 items), health background (5 items), knowledge of ACP and ADs (12 items), and Templer’s Death Anxiety Scale (DAS; 15 items).³¹ Survey questions were developed based on exploratory pilot focus groups conducted via Zoom by the research team with a sample of 26 adults in the United States regarding their understanding of ACP. Focus groups revealed that most participants conflated ACP with estate planning, and believed an AD required legal consultation. In addition, they demonstrated little knowledge of the role of a designated healthcare agent and believed their doctors would make end-of-life decisions on their behalf. Focus group participants were also unsure of the cost of completing an AD or believed it cost more than $200. These responses helped the researchers to craft survey questions and response choices. For a full list of survey questions, see Supplemental Appendix A.

Within the section focusing on knowledge of ACP and ADs, respondents were asked to describe, to the best of their understanding, what ACP is and what an AD is. These questions were intentionally placed early in the survey and presented with only an open answer text box to avoid priming or cueing participants with predefined options. Qualitative responses were analyzed using a structured content-analysis approach. A four-level rubric—no, low, medium, and high knowledge—was developed to classify responses based on the presence of key conceptual elements. High knowledge of ACP was defined as including most or all core elements: talking with loved ones about clarification of values and/or goals of care, choosing a person/surrogate decision-maker/healthcare agent/durable power-of-attorney for healthcare, and choosing what medical treatments they would want or not want in the future. Medium knowledge of ACP identified the general purpose of planning but lacked key elements or details. Low knowledge of ACP indicated a partial or vague understanding, focused on death or general preparation without reference to values or decision-making. No knowledge of ACP recorded clearly stated uncertainty or inaccurate information.

A parallel rubric was applied to participants’ definitions of ADs. High knowledge of ADs demonstrated an accurate, functional understanding of legal document(s) whose specific use communicates the author’s instructions regarding future medical treatments and/or the designation of the stratified person(s) who will be authorized to fill the role of surrogate decision-maker/healthcare agent/durable power of attorney for healthcare. Medium knowledge of AD identified only one of the two documents—either the preferences for future medical treatment or the designation of the surrogate decision-maker/healthcare agent/durable power-of-attorney for healthcare—or lacked key elements or details. Low knowledge of AD indicated a partial or vague understanding, referenced a document but is unclear about its purpose; is confused with other legal documents (e.g., living will vs last will and testament or child custody); and/or is confused with other processes (e.g., estate planning). No knowledge of AD recorded clearly stated uncertainty or inaccurate information.

To establish interrater reliability for the participants’ knowledge, a team of six professionals—each with a minimum of 3years’ experience in ACP facilitation—independently coded all responses. Each participant received two separate sets of ratings: one for their knowledge of ACP and one for their knowledge of ADs. For both constructs, the means of the six independent ratings were calculated, resulting in a final ACP knowledge score and a final AD knowledge score for each participant.

Similarly, Templer’s validated DAS³¹ was used to assess participants’ levels of death-related anxiety. The DAS consists of 15 items scored with a true/false format, producing a total score in which higher values indicate greater death anxiety. Individual DAS scores were calculated for each participant and incorporated into the dataset to examine whether death anxiety was associated with any study outcomes.

The estimated time required to complete the survey was approximately 10–15 min. No compensation was provided for participation.

Results

Demographics

The majority of participants were women (80.6%) and identified as white (77.4%). Participants were grouped into regions based on their selected state of residence and in accordance with the U.S. Centers for Disease Control and Prevention geographical maps.³² The majority (71.0%) lived in the South, 13.3% lived in the Northeast, 9.3% lived in the West, 5.2% lived in the Midwest, and 1.2% did not respond. Participants’ ages covered the full range, with a majority between 40 and 59 years. See Table 1 for full participant demographics.

Table 1.

Study sample characteristics.

Participant demographics	n	%
Age
18–29	54	21.8
30–39	27	10.9
40–49	59	23.8
50–59	70	28.2
60–69	24	9.7
70–79	10	4.0
80+	3	1.2
No response	1	0.4
Gender
Male	39	15.0
Female	200	80.6
Non-binary	9	3.6
Race/Ethnicity
Asian	2	0.8
Black/African-American	24	9.7
Hispanic/Latino	8	3.2
Mixed Race	14	5.6
Native American/Alaskan	4	1.6
Other	4	1.6
White (non-Hispanic)	192	77.4
Residential region
Northeast	33	13.3
South	176	71.0
Midwest	13	5.2
West	23	9.3
No response	3	1.2
Income
$0–$29,999	33	13.2
$30,000–$69,999	44	17.7
$70,000–$99,999	42	16.9
$100,000–149,999	56	22.6
$150,000+	70	28.2
No response	3	1.2
Health status
Poor	9	3.6
Fair	49	19.8
Good	131	52.8
Very good	59	23.8
Trust in the healthcare system
Not at all	23	9.3
A little	70	28.2
A moderate amount	106	42.7
A lot	44	17.7
A great deal	5	2.0
Experienced the death of a loved one
Yes	211	85.1
No	36	14.5
No response	1	0.4

Levels of knowledge and importance of ACP and ADs

Participants responded to two open-ended questions, asking them to define (1) advance care planning and (2) an advance directive. Table 2 shows that the largest proportion of participants demonstrated a medium knowledge of ACP (56.0%). Responses coded as no knowledge (9.7%) included statements such as “I don’t know” or “I’m not sure.” Low knowledge (26.2%) responses reflected partial or inaccurate understandings, such as “preparing others for what my plan is when I die.” Medium knowledge responses typically captured the core purpose of ACP but with limited detail, for example, “planning for how I would want things handled if I weren’t able to make the decisions myself.” High knowledge (6.5%) responses incorporated multiple elements of the ACP process, including values, communication, and decision-making: “advance care planning is to ensure that healthcare treatment is consistent with my wishes if I am unable to communicate or advocate for myself.”

Table 2.

Levels of knowledge and importance of advance care planning and advance directives.

Knowledge and importance	Advance care planning		Advance directives
Knowledge and importance	n	%	n	%
Level of knowledge
Did not respond	4	1.6	4	1.6
No knowledge	24	9.7	46	18.5
Low knowledge	65	26.2	74	28.9
Medium knowledge	139	56.0	109	44.0
High knowledge	16	6.5	15	6.0
Level of importance
Not at all important	4	1.6	9	3.6
Slightly important	36	14.5	34	13.7
Moderately important	61	24.6	68	27.4
Very important	82	33.1	69	27.8
Extremely important	65	26.2	68	27.4

Knowledge of ADs (Table 2) followed a similar pattern, though with a higher proportion of participants demonstrating limited understanding. No knowledge statements accounted for 18.5% of responses. Low knowledge (28.9%) statements typically mentioned a document but not necessarily a legal status: “a document specifying which care to give if I couldn’t communicate my needs.” Less than half of participants (44.0%) demonstrated medium knowledge, typically referencing a legal document but offering limited clarity, such as “a legal document detailing your advance care planning decisions.” High knowledge responses (6.0%) accurately described ADs as legal tools used to document medical preferences in the event of decisional incapacity, for example: “an advance directive is a legal document that allows individuals to outline their preferences for medical care in case they become unable to make decisions for themselves.”

Participants generally viewed both ACP and ADs as important. As shown in Table 2, only a small minority rated ACP as not important at all (1.6%), while the majority rated it as very important (33.1%) or extremely important (26.2%). Smaller proportions were selected as moderately (24.6%) or slightly important (14.5%). Perceptions of ADs followed a similar pattern, with responses distributed almost evenly across the moderate (27.4%), very (27.8%), and extremely important (27.4%) categories.

Positive correlations emerged between several key factors. ACP knowledge and AD knowledge, r(248) = 0.49, p ⩽ .001, suggesting that individuals who understood one also understood the other as well. Confidence in one’s ability to navigate the healthcare system was positively correlated with both ACP knowledge, r(248) = 0.20, p = 0.001 and AD knowledge, r(248) = 0.25, p ⩽ 0.001. These findings indicate that individuals with higher levels of ACP and AD knowledge may tend to feel more comfortable or prepared when seeking treatment.

Perceptions of importance between ACP and ADs were more closely aligned, r(248) = 0.89, p ⩽ 0.001, indicating that participants believed both were meaningful. A more modest but still significant correlation was found between AD knowledge and perceived importance of ADs, r(248) = 0.35, p = 0.002, indicating that participants who demonstrated a stronger understanding of ADs were also more likely to view them as important. No association was found in this study between knowledge of ACP and perceived importance of ACP, suggesting that factors other than practical knowledge—such as perceived complexity—may shape how individuals evaluate the importance of ACP. In addition, no significant correlations were found between death anxiety and the importance of ACP or AD, or knowledge of ACP and AD.

Preference for professional guidance

Almost three-quarters of participants (73.8%) preferred receiving guidance from a professional rather than using a do-it-yourself approach for ACP. Preferences for the type of professional were less clearly defined. While primary care physicians (20.2%) and lawyers (18.5%) were most frequently selected, a substantial proportion (18.1%) did not indicate any preference.

For ADs, preferences were more distinct. Lawyers (42.3%) were overwhelmingly selected as the preferred professional, far exceeding all other categories. This pattern aligns with the common public misconception that ADs require legal expertise. Notably, the next professional with the largest proportion selected was clinical social workers (10.5%) and then primary care physicians (7.7%). Across both ACP and ADs, no correlations appeared between participants’ knowledge levels and their preference for professional guidance (see Table 3).

Table 3.

Preferences for professional guidance for advance care planning and advance directives.

Guidance preference	Advance care planning		Advance directive
Guidance preference	n	%	n	%
Prefer professional guidance
Yes	183	73.8	190	76.6
No	65	26.2	58	23.4
Professional guidance from whom
Clinical social worker	27	10.9	26	10.5
Family	8	3.2	2	0.8
Lawyer	46	18.5	105	42.3
No response	45	18.1	22	8.9
Online resources	13	5.2	7	2.8
On my own	49	19.8	59	23.8
Other	5	2.0	3	1.2
Primary care physician	50	20.2	19	7.7
Religious leader	5	2.0	5	2.0

Expected time commitment for ACP and AD completion

Participants’ expectations regarding the time required for ACP conversation(s) and AD document completion are clear (Table 4). Although a small proportion of participants believed either ACP (10.9%) or an AD (23.8%) could be completed in under an hour, most anticipated a substantially longer time commitment. By contrast, 89.1% and 76.2%, respectively, anticipated that each process would take longer than 60 min. Taken together, these perceptions suggest that participants expect ACP with AD completion to require well over 2 h when tasks are combined.

Table 4.

Expectations for time commitment.

Expected time commitment	Advance care planning		Advance directive
Expected time commitment	n	%	n	%
Less than 60 min	27	10.9	59	23.8
More than 60 min	221	89.1	189	76.2

There was a positive correlation between participants’ expectations for ACP time and AD time, r(248) = 0.66, p ⩽ 0.001, indicating that individuals who anticipated a lengthy ACP process similarly expected AD completion to require a substantial time commitment. Confidence in one’s ability to navigate the healthcare system was negatively correlated with the amount of time expected for both ACP, r(248) = −0.16, p = 0.015 and ADs, r(248) = 0.20, p = 0.001.

Expected out-of-pocket cost for ACP with AD completion

Participants showed substantial variation in what they believed an ACP with an AD would cost. One-fifth (20.2%) expected the process to be free if completed without assistance, while a similar proportion (15.7%) did not offer any estimate. More than half of participants (57.2%) anticipated paying over $100, and a few participants (6.9%) expected their out-of-pocket costs to fall under $100—an amount comparable to the average health insurance co-pay in the United States (see Table 5).

Table 5.

Out-of-pocket cost for advance care planning and for an advance directive.

Cost of ACP/AD	How much would you expect to pay out-of-pocket for ACP with an AD?		How much is too much to pay out-of-pocket for ACP with an AD?
Cost of ACP/AD	n	%	n	%
No response	39	15.7	6	2.4
Free to do it yourself	50	20.2	0	0.0
Up to $100	17	6.9	34	13.7
Over $100	142	57.2	208	83.9

ACP: advance care planning; AD: advance directive.

When asked how much they thought was “too much” to pay out-of-pocket for ACP with an AD completion, only 13.7% indicated that up to $100 was already too much to pay. In contrast, a large majority (83.9%) reported that more than $100 would exceed what they were willing to pay.

By indicating any amount over $100 as exceeding their personal limit, participants indirectly communicated that the range they considered acceptable for ACP facilitation services resulting in a completed AD would fall under $100—a threshold that very few initially selected when estimating expected costs. This discrepancy suggests that participants perceive ACP with AD completion as more expensive than what they themselves consider reasonable or affordable, highlighting a potential barrier to engagement.

Death anxiety

No significant correlations were found between DAS scores and either knowledge or perceived importance of ACP or ADs, suggesting that death‑related anxiety did not meaningfully influence participants’ conceptual understanding or valuation of these processes. However, moderate associations emerged between DAS scores and participants’ perceptions of the time and cost required to complete ACP and ADs. Higher death anxiety was modestly correlated with expectations for ACP time, r(248) = 0.15, p = 0.019, and AD time, r(248) = 0.17, p = 0.007, indicating that individuals with greater death‑related anxiety tended to anticipate longer completion times. A stronger correlation was observed between DAS scores and perceived cost, r(248) = 0.35, p = 0.002, suggesting that those with higher death anxiety were more likely to overestimate the financial burden of ACP. Taken together, these findings imply that while death anxiety does not shape knowledge or perceived importance, it may influence how burdensome or resource‑intensive individuals expect the ACP/AD process to be.

Discussion

This study examined public knowledge, perceptions, and expectations related to ACP and ADs, revealing persistent gaps that may influence engagement with these essential processes. Consistent with prior research, participants demonstrated low to moderate knowledge of ACP and ADs,^19,33 but viewed both as important, and identified several barriers that may impede completion.

Findings revealed substantial conceptual confusion for both ACP and ADs. Participants appeared generally aware of their purposes but with limited understanding of their scope, components, processes, and practical application. For example, this pattern aligns with the common conflagration of ADs with estate planning or a Last Will and Testament, which may explain why lawyers were overwhelmingly selected as the preferred professional—despite being unnecessary, inconvenient, and unaligned with the clinical nature of ACP processes that are foundational to the preferences that are to be documented. This misconception, reinforced by the legal language ADs, may divert individuals away from healthcare professionals—such as clinical social workers—who are well-positioned to facilitate ACP conversations and ensure that ADs reflect both medical realities and personal values.

Even trained coders in this study, all interdisciplinary ACP professionals, did not fully agree on the criteria for categorizing levels of ACP and AD knowledge (e.g., at what point does a statement indicate a low or moderate level of knowledge). This rater variability—addressed through means scores—likely reflects the absence of shared, practical definitions for ACP and ADs across disciplines. Although all coders were experienced ACP professionals, each brought training shaped by different frameworks that emphasize different components of ACP and ADs, such as values clarification, documentation, surrogate designation, or end-of-life decision-making, leading them to apply slightly different criteria when interpreting participants’ open responses. This inconsistency reflects the broader lack of operationalized definitions that continues to challenge both public understanding and professional practice.

Participants determined that both ACP and ADs were important. The moderate positive correlation between knowledge of ADs and perceived importance of ADs suggests that improving public understanding may increase motivation to complete these documents. By contrast, no association was found between ACP knowledge and perceived importance, indicating that participants may value the ACP conceptually even when their understanding is limited.

Participants’ strong preference for professional guidance underscores the extent to which ACP and AD completion are perceived as complex, high-stakes activities that require expert support. This reliance on professional involvement may reflect not only limited public knowledge but also the emotional, relational, and legal weight associated with discussing future healthcare decisions. The absence of a clear preference for which professional to approach further reinforces uncertainty and avoidance. This pattern aligns with findings from Moore et al., who reported that many individuals do not know where to begin the ACP process, often lacking a clear entry point into conversations that feel both important and overwhelming.¹⁷ Together, these findings suggest that the desire for professional guidance is less about deferring responsibility and more about seeking direction, reassurance, and structured support.

Participants’ overestimation of expected out-of-pocket cost for ACP with AD completion highlights modifiable barriers that may suppress engagement. This perception is noteworthy given that professional facilitation for ACP with an AD in the United States is often available at no cost when conducted in conjunction with an AWV in a primary care setting. When ACP facilitation services are provided outside of the AWV, the out-of-pocket cost is typically limited to a modest co-pay—often between $25 and $75—which falls within the range of stated acceptability. This misalignment between perceived and actual cost is consistent with emerging evidence that the health literacy and system navigation challenges influence ACP readiness.³⁴

Similarly, participants’ expectation that ACP with AD completion would require more than 60 min may reflect the emotional and relational weight of ACP conversations, contribute to avoidance, and highlight the need for protected time and space for these sensitive activities to occur. These perceptions can shape an individual’s willingness to initiate or complete ACP tasks, particularly for those balancing multiple responsibilities or facing limited discretionary time. They may also help explain patients’ reluctance to engage in ACP facilitation in conjunction with their AWVs, especially when they may be fasting or anticipating other clinical procedures. Moreover, without intentional scheduling for ACP conversations, patients’ loved ones may not be present, making it difficult to explore values and goals of care or prepare the healthcare agent to serve as an effective surrogate decision-maker during a crisis. Their absence limits the depth and quality of these discussions and ultimately constrains the overall effectiveness of ACP facilitation.

Although many studies emphasize training nurses to engage patients in ACP,^35
–37 this work often overlooks the time-intensive nature of guiding patients through emotionally complex discussions about values, goals, and end-of-life care options. Existing literature provides longstanding evidence that physicians and nurses experience considerable time pressures.^38
–41 These constraints are not mere logistical; they are structural features of contemporary healthcare delivery in the United States that shape what is realistically possible during routine clinical encounters. ACP conversations require clinicians to slow down, build rapport, assess readiness, navigate uncertainty, and support meaning-making—tasks that are difficult to accomplish within the compressed timeframes of primary care and AWVs.

Implications

These findings have significant implications for social practice. Social workers are uniquely positioned to address the widespread misconceptions surrounding ACP through targeted health literacy interventions, culturally responsive education, and values-based communication. The social work profession’s emphasis on person-centered practice, relational engagement, systems-thinking, and socioeconomic justice aligns closely with the core aims of ACP. Within clinical and community settings, social workers can help normalize ACP as a routine component of preventive healthcare; support clients in identifying and articulating their values, goals, and preferences; and prepare surrogate decision-makers to advocate during a crisis. Given the relational nature of ACP, social workers’ expertise in family systems, conflict mediation, and navigating emotionally charged conversations is particularly relevant—especially as evidence continues to highlight the emotional and cognitive distress experienced by surrogate decision-makers.^27,42

At the mezzo and macro levels, the findings underscore the need for greater interdisciplinary consistency in ACP terminology and role delineation. Recent commentaries have called for harmonized ACP frameworks to reduce fragmentation and improve communication across clinical teams.⁴³ Social workers can contribute to these efforts by promoting standardized language, integrating psychosocial perspectives into ACP workflows, and advocating for reimbursement structures that recognize social workers as qualified and independent ACP facilitators. Such system-level change would not only enhance clarity for patients and families but also strengthen the capacity of interdisciplinary teams to deliver coordinated, values-driven care at the end of life.

Limitations

This study has several limitations that should be considered. The present study lacked enough male and non-binary participants to compare gender differences, and included limited geographic, racial, and ethnic diversity, which constrains the generalizability of the results. The use of convenience sampling through online recruitment further limits representativeness, as individuals without reliable internet access, computer access, or familiarity with online platforms—such as some older adults, immigrant communities, and populations with low digital literacy—were less likely to participate. In addition, the study design permitted participants to skip some questions, resulting in missing data that reduced clarity and completeness of some measures. Future research should recruit a more gender-inclusive and geographically and racially diverse sample and implement measures to minimize missing responses.

Conclusion

This study contributes to a growing body of evidence demonstrating persistent gaps in public understanding of ACP and ADs among US adults. Although participants recognized the importance of ACP and ADs, their low to moderate knowledge underscores the conceptual ambiguity that continues to impede meaningful engagement. These findings highlight the need for clearer, more consistent communication across disciplines and more accessible public education regarding the purposes, processes, and relational nature of ACP and ADs.

Importantly, this study revealed a strong preference for professional facilitation and a lack of clarity about who to contact to initiate the ACP process. The profound overestimation of expected out-of-pocket costs points to modifiable barriers that may suppress engagement, particularly among socioeconomically marginalized individuals for whom perceived financial burdens are particularly consequential, as they can further compound existing structural inequities in healthcare management. Addressing these barriers through targeted outreach, inclusive policy design, and workflow-sensitive clinical practices may improve ACP uptake and reduce health disparities.

Time-related expectations further illuminate barriers to engagement. Participants’ belief that the ACP and AD completion requires more than 60 min for each process reflects the emotional and relational weight of end-of-life planning. These perceptions reinforce the need for protected time, private space, intentional scheduling, and the inclusion of loved ones to support values-based discussions and surrogate preparedness.

Taken together, the study’s findings reinforce the need for a more coordinated, interdisciplinary, and equity-focused approach to ACP. Social workers—given their holistic orientation, commitment to self-determination, relational approach, and systems-based practice—are well-positioned to lead efforts to improve ACP literacy, reduce structural barriers, and promote meaningful engagement across diverse populations. Future research should explore how social work-led ACP interventions influence knowledge, engagement, and surrogate preparedness, as well as the policy reforms needed to expand access to ACP facilitation across care settings.

Supplemental Material

sj-docx-1-pcr-10.1177_26323524261444754 – Supplemental material for Knowledge of advance care planning and advance directives among US adults: Implications for health policy and practice

Supplemental material, sj-docx-1-pcr-10.1177_26323524261444754 for Knowledge of advance care planning and advance directives among US adults: Implications for health policy and practice by Anisah Bagasra and Gretchen Agans in Palliative Care and Social Practice

Footnotes

Acknowledgements

The authors of this manuscript acknowledge the support of the Department of Psychological Science at Kennesaw State University and the support of the Radow College of Humanities and Social Sciences at Kennesaw State University, which were instrumental in the creation of the Death, Dying & Bereavement Research Consortium. In addition, the authors acknowledge Wellstar Health System, whose dedication to holistic care and the development of their dedicated Advance Care Planning Program was foundational in identifying the potential barriers explored in this study.

ORCID iD

Anisah Bagasra

Ethical considerations and consent to participate

This study was approved by Kennesaw State University’s IRB FY23-192. All research conducted for this study met the ethical guidelines outlined by the Institutional Review Board and in line with the Declaration of Helsinki governing research with human participants. Respondents indicated their consent by clicking on the statement “I meet the study criteria and consent to participate in this study” after reading the consent statement.

Consent for publication

The authors of this manuscript give consent for publication.

Author contributions

Anisah Bagasra: Conceptualization; Data curation; Formal analysis; Methodology; Project administration; Supervision; Writing – original draft; Writing – review & editing.

Gretchen Agans: Conceptualization; Data curation; Formal analysis; Methodology; Writing – original draft; Writing – review & editing.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

All data is available by contacting the corresponding author* for datasets and coding sheets.

Supplemental material

Supplemental material for this article is available online.

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