Enhancing Advance Care Planning in Primary Care: A Three‐Year Implementation Study in Nebraska

ABSTRACT

Background

Despite the benefits of discussing patients' preferences on care decisions, the uptake of advance care planning (ACP) in the U.S. is low. This study aimed to (1) identify barriers to ACP implementation, (2) implement two strategies (onsite ACP coordinator and Lightning Report facilitation—a rapid process improvement involving prompt feedback synthesis and timely action), and (3) track ACP outcomes (reach, implementation, and effectiveness).

Methods

This study took place at two primary care sites participating in the Nebraska Geriatric Workforce Enhancement Program from 2020 to 2023. We conducted a multi‐stage evaluation mixed‐methods study guided by the Practical, Robust Implementation and Sustainability Model (PRISM). Qualitative data from clinic staff interviews and focus groups were collected to identify implementation barriers, develop an optimal workflow, and educate providers and patients (implementation). Quantitative data from electronic medical records (EMR) were collected at baseline and every six months thereafter to assess ACP outcomes, including reach (patient‐provider discussion of ACP) and effectiveness (ACP document completion). We mapped barriers to implementation strategies, mechanisms, and ACP outcomes based on PRISM domains.

Results

From 2019 to 2021, ACP outcomes remained consistent: Clinic A (reach: data not available; effectiveness: 20.5%–20.2%) and Clinic B (reach: 2.3%–2.6%; effectiveness: 1.8%–1.9%). After implementing the ACP coordinator and Lightning Report in 2022, moderate‐to‐high improvements were observed: Clinic A saw a 10‐percentage point increase in reach (43.6%–53.6%) and a 2.5 increase in effectiveness (20.2%–22.8%). Clinic B experienced a significant 25.3‐percentage point increase in reach (2.6%–27.9%) and a 16.5 increase in effectiveness (1.9%–18.4%). We also updated the clinic workflow to integrate the ACP initiative into standard practice (implementation).

Conclusions

The introduction of an ACP coordinator, along with the Lightning Report approach, may enhance ACP reach, effectiveness, and implementation in primary care settings for older patients.

Summary.

• Key points

  • ○
    Adding onsite ACP coordinators improved advance care planning discussions and documentation in the two primary care settings.
  • ○
    The Lighting Report, a rapid process improvement approach, further supported the effective implementation of the ACP coordinator strategy by adapting workflow, training providers, and developing patient educational materials.
• Why does this paper matter?

  • ○
    The study addresses the critical gap in ACP uptake by implementing actionable, multi‐level, multi‐system strategies to enhance patient‐centered care, focusing on what matters most to patients in primary care settings.

1. Introduction

As the US population ages, health systems are increasingly redesigning themselves to be age‐friendly [1]. Age‐Friendly Health Systems (AFHS) is an initiative of the John A. Hartford Foundation and the Institute for Healthcare Improvement. AFHS seeks to provide four evidence‐based elements of high‐quality care to older adults. Known as the “4Ms,” these evidence‐based approaches to care include What Matters, Medication, Mentation, and Mobility. The first among these, What Matters, asks providers to know and align care with an older adult's specific health outcome goals and care preferences across all settings of care [2]. Many AFHSs are implementing advance care planning (ACP) initiatives to understand What Matters to their older patients with Medicare beginning to reimburse providers for ACP discussions in 2016.

ACP is a formal decision‐making process of discussing and recording patient preferences concerning goals of care that take effect if they lose capacity or communication ability in the future [3, 4]. Originally, ACP focused exclusively on the completion of do‐not‐resuscitate and do‐not‐hospitalize orders. The current ACP includes advance directives, living wills, and/or durable powers of attorney for health care [5]. Furthermore, it expands to include the completion of written documentation and engagement of the patient in identifying personal values, communicating with surrogate decision makers and family members, and translating values and preferences for future medical care into medical orders [6]. Benefits associated with completed ACP include the increased patient knowledge of treatment options and self‐efficacy [7], improved quality of life [7], enhanced communication (such as end‐of‐life care) between patients and health professionals [7, 8], healthcare cost savings [8, 9], fewer acute readmissions [9], reduction in psychological stress [10], and a greater sense of control for patients over their life choices [7, 10]. Unfortunately, despite the documented benefits of ACP, uptake of the process by patients and providers in the US is low. In 2017, only one in three American adults completed an ACP [11]. A national survey of U.S. adults aged 55–74 found that only 28% reported their health care providers ever bringing up ACP during a visit [12], although having a provider initiate ACP discussion was identified as a potential facilitator for both informal and formal advance care planning.

Applying concepts from dissemination and implementation science may be helpful in increasing the uptake of ACP discussions and documentation for older adults [13]. For example, the Practical, Robust Implementation and Sustainability Model (PRISM) provides an avenue to consider contextual factors that include the health care infrastructure, recipients and beneficiaries of a given intervention, the characteristics of the intervention, and external factors that could influence the reach, effectiveness, adoption, implementation, and maintenance of interventions such as ACP [14, 15]. A recent qualitative analysis of ACP efforts in 12 Veterans Health Administration sites revealed that keys to implementing an ACP change initiative may include recipient‐level factors, such as readiness for transformation at the organizational, clinical, team, and provider levels [16]. In addition, the same study demonstrated the importance of infrastructure factors including intervention champions, dedicated time and resources for implementation, and communication across teams. Other research has revealed barriers and facilitators to ACP in chronically ill adults and children that focus on personal characteristics [17], but less research has been done to understand ACP change initiatives and ACP barriers and facilitators among older patients in primary care settings. Further, there has been a lack of systematic use of PRISM or other dissemination and implementation science models to better understand the contextual barriers and facilitators that can lead to improved adoption, implementation, and maintenance of ACP in primary care.

To address low uptake of ACP, the Nebraska Geriatrics Workforce Enhancement Program (NGWEP) launched in 2019, included an outcome measure on ACP. Supported by the Health Resources and Services Administration, NGWEP aims to facilitate the application of AFHS's 4Ms (mentation, what matters, mobility, and medication) framework in primary care settings. Within this context, the NGWEP team applied PRISM in the design of implementation strategies to better understand the barriers and facilitators to ACP process implementation, and resultant reach and effectiveness in two clinics that provided services to predominantly under‐represented patients (Black and Latinx). The purpose of this paper is to describe the process of identifying and executing the two implementation strategies—ACP coordinators and the Lightning Report Facilitation. We gathered perspectives of clinical staff on barriers and facilitators to ACP implementation, reach, and effectiveness. These perspectives were analyzed with regard to recipients (patients and clinic providers), the implementation and sustainability infrastructure, external environmental factors, and the characteristics of the ACP process.

2. Methods

2.1. Study Design

We conducted a multi‐stage evaluation mixed‐methods study to understand facilitators and barriers related to ACP implementation at two primary care sites. We used PRISM, which expands on the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE‐AIM) framework by highlighting contextual and potential mechanistic factors that may influence dissemination and implementation outcomes [18, 19]. The factors identified by the PRISM framework include: (1) multilevel recipients (both organizational and patient‐level characteristics); (2) the intervention (implications of the intervention for both the organization and patients); (3) implementation and sustainability infrastructure; and (4) external environment (including guidelines, policies, reimbursement issues) [20]. PRISM was identified as an appropriate model for this study as it emphasizes the importance of attending to the fit between the evidence‐based intervention, dissemination and implementation strategies used, and local context [18].

2.2. Study Population

Two Midwest primary care clinics participated in the study: a federally qualified health center (FQHC) and a non‐profit, patient‐centered medical home (PCMH) clinic within an integrated health system. Both clinics serve diverse and underrepresented populations that experience health inequities. In the PCMH clinic (Clinic A hereafter), patients are primarily Black (59%). Insurance coverage for the clinic population is mostly public (31% Medicaid, 27% Medicare) or self‐pay (9%). Based on the zip codes for the clinic service area, 26% live in poverty, as determined by the poverty threshold from the US Census. Clinic A had a social worker who is a champion for ACP but had very limited time and availability for ACP as this person served two other clinics in the same health system. In the FQHC clinic (Clinic B hereafter), 81% of patients were Latinx, with 36% better served in a language other than English. Over 90% were at or below 200% of the federal poverty level, and 60% were living in poverty. In 2022, of the 50,067 patients served, 21,078 (42.1%) were uninsured [21]. Clinic B did not identify an ACP champion at baseline and had extremely limited social work support for a large population of poor and underserved patients. Both clinics had a process of ACP in their annual wellness visit (AWV). Providers were expected to have these discussions, which were often brief, and there was insufficient time allotted for completing documentation of those plans. Both clinics joined the NGWEP geriatric training sessions between 2019 and 2020.

2.3. Lightning Report Method

We adapted the Standford Lightning Report (the Lightning Report) strategy that includes preplanning, data collection, and rapid synthesis, and lightning report creation. Figure 1 provides an overview of our Lightning Report process. This process was recursive in that information and progress from the Lightning Report were integrated into subsequent interview and rapid analysis sessions. The Lightning Report strategy was suggested by the research team to facilitate problem solving and advanced implementation of the ACP coordinator approach. The primary care team agreed to use this rapid qualitative data analysis and feedback approach with a goal to increase the proportion of older patients that were provided the opportunity to complete an ACP [19].

FIGURE 1.

Three Stages of the Lightning Report Method. This figure illustrates the three stages of the Lightning Report Method, including pre‐planning, data collection, and rapid synthesis, and lightning report creation for feedback. PRISM, Practical, Robust, Implementation, and Sustainability Model.

2.4. Data Collection and Measures

Qualitative data were collected through four cycles of interviews and focus groups from January 2021 to October 2023 (Figure 2). The baseline interview was conducted in the first quarter of 2021 with key clinic stakeholders (Cycle 1: 2 years). As part of the Lightning Report data collection (Cycles 2–4: 3–4 months for each cycle), the second interview and two focus groups were conducted in 2023 with 2–3 key informants per clinic. Each individual interview or focus group took about 30–45 min and were audio‐recorded. We used individual interviews to gather detailed, in‐depth feedback on current processes, including the workflow from patient encounters to post‐visit follow‐up when the ACP coordinator was involved (implementation), as well as barriers and facilitators of ACP approaches. Then, we used focus groups to check the progress for each cycle and set goals/action plans for the next cycle. During the focus group, interprofessional clinic providers and staff were asked for their insights about (1) current goals and processes of the ACP initiatives at the clinic including the workflow, (2) barriers and facilitators of implementing the ACP initiative, and (3) suggestions to overcome these challenges and action plans for the next cycle.

FIGURE 2.

Interview and focus group participants and Timelines. This figure illustrates the number and type of professions of primary care staff who participated in the interviews and follow‐up focus groups. ACP, Advance Care Planning; Admin/IT, Administrator/Information Technologist; MD, Medical doctor; NP, Nurse Practitioner; Pharm, Pharmacist; RN, Registered Nurse; SW, Social Worker.

Quantitative data were collected through clinics' electronic medical records (EMR) at baseline (1 year prior to participation) and every 6 months thereafter until the end of the implementation (December 31, 2023). We measured three outcomes based on the RE‐AIM framework. Reach was defined as the proportion of patients 65 and older in each clinic site who were approached by providers/staff in each clinic regarding ACP discussion. Effectiveness was defined as the proportion of patients 65 and older who completed ACP documentation, which was uploaded to the EMR systems. Both clinics have discrete EMR fields indicating whether ACP was discussed (reach), whether the patient declined the discussion (reach), and whether there is documentation of an ACP and/or a durable power of attorney designated (effectiveness). We conducted a chart review of the EMR fields and, since 2022, have abstracted ACP‐related measures using CPT codes (99,497 or 99,498 for discussion). This definition of ACP completion is aligned with the Centers for Medicare and Medicaid Services (CMS) definition for the Merit‐based Incentive Payment System (MIPS) clinical quality measure (#047) for ACP. Implementation measures included an assessment of optimal workflow based on staff interviews as well as the development of provider education and tools to increase awareness of ACP and billing potential (e.g., provider script to initiate ACP conversation, provider training on how to code ACP‐related services).

2.5. Analysis

Qualitative data (transcripts and notes) collected through the Lightning Report were analyzed using inductive thematic analysis. Two team members (JY and VP) independently identified codes and themes, then reached a consensus on the implementation barriers, which were mapped to the PRISM construct. The authors (JK, PE, and TK) conducted iterative group discussions to develop an implementation logic model that contains primary implementation barriers, implementation strategies to address barriers, key mechanisms for change, and associated RE‐AIM outcomes. Changes in reach and effectiveness outcomes using descriptive statistics were overlaid with the two primary implementation strategies, ACP coordination outreach and Lightning Report Facilitation. The Institutional Review Board determined that this project was not considered human subjects research because it is focused on organizational quality improvement (IRB waiver # 651‐19‐EP).

3. Results

3.1. Overview of Barriers, Strategies, Mechanisms, and Outcomes

Figure 3 presents primary implementation barriers identified for each cycle, implementation strategies to address barriers, mechanisms, and outcomes pathway using PRISM contextual factors and RE‐AIM outcomes. During Cycle 1, we identified initial needs in human resource support to complete ACP (infrastructure) and education and support for patients (recipient characteristics—individual). Thus, the integration of an “ACP coordinator” was identified as an implementation strategy by supporting providers with ACP discussions and increasing patient awareness and ease of ACP documentation. Funded by the NGWEP, we hired a part‐time (20 h/week) lay community member for each clinic. Successful applicants were motivated by personal experiences with the importance of ACP, which inspired their interest in the position. They were also eager to contribute to the community in a meaningful way. At Clinic A, the social worker worked closely with the ACP coordinator until fully trained. At Clinic B, a bilingual community member (English and Spanish) was trained by a bilingual faculty geriatrician. ACP coordinators supported providers with ACP and powers of attorney during AWVs. They assisted patients in completing ACP documents at the end of the visit and provided free notarization services, as they were licensed notaries. The Nebraska State requires advance directives to be notarized or signed by two unrelated witnesses. Since coordinators were part‐time, they were not always available in the clinic, but they followed up with patients via phone or scheduled future appointments to ensure ACP documentation was completed (Figure 3).

FIGURE 3.

An overview of the advance care planning in primary care: Barriers, strategies, mechanisms, and outcomes pathway using PRISM contextual factors. This figure illustrates the primary barriers identified for each cycle through interviews and focus groups, mapped with implementation strategies to address those barriers, along with mechanisms of how each strategy is expected to improve advance care planning discussions and documentation, including reach, implementation, and effectiveness. ACP, Advance Care Planning; AWV, Annual Wellness Visit.

During Cycle 2, providers reported low self‐efficacy for ACP discussion and were not aware that ACP coordinators were available (recipient characteristics—implementation agent). Providers also discussed a suboptimal workflow that hindered the incorporation of the ACP discussion process into the annual wellness visit (infrastructure). To address these barriers, the team developed scripts for the introduction of ACP as a component of AWV and adapted workflow by integrating a referral process to the ACP coordinator into the existing process. These efforts were expected to lead to improvement in implementation and effectiveness outcomes.

Cycle 3 and 4 rapid improvement process identified lack of provider awareness of ACP as a billable service (external factors; innovation perception) and need for development and use of patient educational materials (infrastructure; recipient characteristics—individual). During staff meetings, providers were educated on billing codes (CPT codes 99,497 and 99,498: face‐to‐face discussions about ACP between the health providers and a patient, family members, and/or surrogate) for ACP discussions to increase provider awareness and benefit of ACP completion. The team also developed educational pamphlets (see Files S1–S3) to improve patient knowledge and awareness and facilitated the use of pamphlets by mailing them or building QR code signage in the lobby areas. All these efforts were expected to lead to improvements in implementation and reach, ultimately to effectiveness.

3.2. Reach and Effectiveness

Figure 4 illustrates changes in ACP reach (discussion) and effectiveness (documentation) for the two clinics over the study period. At baseline, Clinic A's ACP completion rate was 20.5%, while Clinic B's was 1.8%. From the baseline (2019) through the end of 2021, ACP reach and effectiveness remained stable at Clinic A (reach: data not available; effectiveness: 20.5%–20.2%) and Clinic B (reach: 2.3%–2.6%; effectiveness: 1.8%–1.9%). However, starting in 2022, following the implementation of the ACP coordinator and the Lightning Report, Clinic A saw a 10‐percentage point increase in reach (43.6% –53.6%) and a 2.5‐percentage point increase in effectiveness (20.2%–22.8%). Meanwhile, Clinic B experienced a significant 25.3‐percentage point increase in reach (2.6%–27.9%) and a 16.5‐percentage point increase in effectiveness (1.9% to 18.4%). In early 2023, Clinic A saw a slight decrease in both reach and effectiveness due to the retirement of the ACP coordinator, while Clinic B maintained a consistent upward trend through the end of the study (Figure 4).

FIGURE 4.

Changes in reach and effectiveness outcomes overlaid with implementation strategies. This figure overlays all ACP‐related trainings and implementation strategies during the project. Reach is defined as the proportion of patients aged 65 and older who were approached by providers/staff in each clinic regarding ACP discussions. Effectiveness is defined as the proportion of patients aged 65 and older who completed ACP documentation, which was uploaded to the EMR systems. ACP reach and effectiveness remained stable at both clinics but increased after the implementation of the ACP coordinator and Lightning Report Facilitation. ACP, Advance care planning.

3.3. Implementation

To improve implementation, we optimized clinic workflow to incorporate the ACP initiative into AWVs and referral to the ACP coordinator. Figure 5 shows the optimal workflow developed through the Lightning Report facilitation process. Additionally, we developed scripts for providers to introduce ACP to patients during the AWV that make a smooth transition to ACP coordinators. Cycle 3 Lightning Report revealed a lack of provider awareness of ACP discussions and how to associate them with the billing procedure. To address this, we started provider education via staff meetings and informed providers about the role of ACP coordinators and billing processes. During 2021, documentation for the ACP codes 99,497 and 99,498 was embedded in the AWV documentation for use by providers at Clinic A.

FIGURE 5.

Optimized clinic workflow for advance care planning. This figure illustrates the revised workflow after including the ACP coordinator in the routine patient visit process, including annual wellness visits. ACP, Advance care planning; AWV, Annual wellness visit.

4. Discussion

One of the most important facilitators of both formal and informal ACP completion is having a primary care provider introduce the ACP process [14]. Having a discussion and documenting a formal ACP during a clinic visit requires clinicians' time and systems change that are often lacking [14]. Based on the Implementation Science framework (PRISM), the study mapped multi‐level, multi‐system barriers to implementation strategies that could lead to improved ACP outcomes. One such strategy was to hire an ACP coordinator, a designated, non‐physician staff member who provided onsite education and technical assistance to patients. Another strategy was to employ the Lightning Report Facilitation, a rapid qualitative approach that provides insights and actionable goals to clinic staff to improve ACP outcomes. These two implementation strategies resulted in a 16.5‐percentage point increase in ACP documentation (effectiveness) and a 25.3‐percentage point increase in ACP discussion (reach) in Clinic B.

The participating clinics in this study served predominantly low‐income and racial/ethnic minorities, including Black and Latinx patients, who have historically reported low levels of ACP awareness and mistrust toward medical system [22, 23]. Previous research has emphasized the need for enhanced ACP education for these communities [24]. To address this gap, prior studies also used a model and advance care directive planning program called “PREPARE For Your Care (PREPARE),” to guide the completion of advance directives in the primary care setting among English and Spanish speaking patients, while also mitigating challenges in low health literacy [25].

We found that the lack of physician time and system infrastructure to educate and assist patients is the major barrier for ACP education/documentation, consistent with previous studies [26, 27]. Having an ACP coordinator increased ACP outcome metrics in both sites, yielding a stronger impact for the FQHC site (effectiveness increased from 1.8% to 18.4%; reach increased from 2.3% to 27.7%). Our findings are comparable to a study conducted by the South Florida GWEP team reporting the low percentage of ACP documentation (3.7%) at baseline among primary FQHC systems and an increased percentage at post‐initiative (29.7%) through small‐scale implementation strategies such as systems change, appointment time increases, integration of Spanish‐speaking staff, provider training, and changes in record keeping [28]. Our finding also supports the role of facilitator as an implementation strategy [29, 30]. Specifically, the ACP coordinator built a supportive interpersonal relationship with each patient, recognized their needs for ACP, and participated in problem solving by providing ongoing education and technical assistance (e.g., notary services) available at the clinic site.

Facilitation is also a core component of the Lightning Report strategy that used rapid improvement processes and allowed clinics and providers to determine where to focus efforts and how to overcome obstacles, and in doing so, improve ACP documentation metrics. The Lightning Report strategy enabled the team to streamline the workflow by integrating ACP facilitation activities among primary providers, clinic staff, and coordinators. It also provided opportunities for additional communication between providers, clinical staff, and coordinators, which allowed the alignment of multiple perspectives with the goal to improve ACP completion [31, 32].

In this study, we applied the PRISM to understand multi‐level, multi‐system interactions around the ACP implementation. When completing the Implementation Logic Model presented in the results section, we encountered several instances where PRISM contextual factors had strong inter‐relationships. A good example of this is the blending of external factors, innovation characteristics, and recipient perceptions. Specifically, the provision of CMS reimbursement for ACP services (external factor) is a driver of ACP implementation because the billing potential becomes a characteristic of innovation. This results in a change in recipient perceptions related to the relative advantage of ACP completion. There is scientific significance to understanding the complexity of these inter‐relationships. Using approaches like the Implementation Logic Model is exceptionally helpful in planning and communicating the primary pathways from barrier identification to implementation strategy development to proposed mechanisms of change and finally to outcomes. However, it is also important to understand that this approach is typically a simplified expression of complex interactions across a range of contextual and mechanistic factors that can improve implementation outcomes.

The study is not without limitations. Our study findings are based on the two primary care clinics in Nebraska. Thus, the study results should be cautiously interpreted and may not apply to other settings. Our qualitative data including interviews and focus groups might be biased by selected providers and may not represent the perceptions of all providers at the clinic. Although the ACP coordinator was the main strategy introduced in this study, it is noteworthy to mention the funding sustainability for primary care sites as the study relied on external funding (NGWEP) for hiring/training ACO coordinators. Turnover was a consistent challenge with implementation, as the ACP coordinator at Clinic A retired in early 2023. However, the advantage of the Lightning Report was that it was oriented toward the clinic and includes multiple levels of clinic staff. Fortunately, we were able to engage a social worker at Clinic A to cover some parts of the ACP coordinator's roles during the vacancy in this position. Both clinics have improved their capacity to systematically capture the ACP measures during the study period, which may potentially affect the results.

5. Conclusion

Having conversations and documenting an advance care planning (ACP) is an important, age‐friendly care practice for older adults. The findings of this study suggest that adding a part‐time staff member (ACP coordinator) for ACP patient education and assistance, combined with the rapid process improvement tool (Lightning Report), may enhance ACP outcomes in primary care settings. This work offers some practical implications. First, primary care practitioners may consider developing a system infrastructure for ACP coordination and recognizing the billing potential of ACP services. The Lightning Report offers key advantages through its smooth and efficient process for delivering real‐time, actionable data to clinics. However, it was facilitated externally, which may limit its sustainability or scalability in local or different contexts. One potential strategy for a broader application is to integrate the Lightning Report into existing quality improvement processes as an effective and relatively low burden approach. Future study is needed to assess the effectiveness of these strategies on a larger scale.

Author Contributions

J.K. contributed to the development of the study concept and design, analysis and interpretation of data, and preparation of the manuscript. V.P. contributed to the acquisition of data, analysis and interpretation of data, and preparation of the manuscript. T.K. participated in the analysis and interpretation of data and preparation of the manuscript. M.S.M. contributed to the acquisition of data, analysis, and preparation of the manuscript. J.M. contributed to the acquisition of quantitative data and analysis. J.F.P. contributed to the study concept and design, and preparation of the manuscript. P.E. contributed to the study concept and design, analysis and interpretation of data, and preparation of themanuscript.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Supplementary File S1. Lightning Report Protocol and Interview Guides.

Supplementary File S2. Lightning Report Summary Template.

Supplementary File S3. Patient Education Brochures for Advance Care Planning (English and Spanish Language).

Kim J., Pacino V., Koll T., et al., “Enhancing Advance Care Planning in Primary Care: A Three‐Year Implementation Study in Nebraska,” Journal of the American Geriatrics Society 73, no. 8 (2025): 2553–2561, 10.1111/jgs.19478.