Educational Resources and Self-Management Support to Engage Patients in Advance Care Planning: An Interpretation of Current Practice in the US

Abstract

Background:

Educational resources and decision aids help patients, their care partners and health care providers prepare for and confidently engage in Advance Care Planning (ACP). Incorporating ACP resources as part of a self-management approach may lead to fuller engagement with ACP beyond identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers.

Objective:

To examine the use of educational resources and decision aids to support self-management of ACP in 11 health systems across the US.

Methods:

This study was a qualitative interview study examining barriers and facilitators to ACP. Guided by interpretative description and the chronic care model, we sought to describe how health care stakeholders (clinicians and administrators) and patients use ACP resources to support engagement with ACP.

Results:

274 health care stakeholders were interviewed, and 7 patient focus groups were conducted across 11 health systems. The majority of participants reported using resources to support completion of preference documentation, with fewer participants using resources that promote more engagement in ACP. ACP resources were reported as valuable in preparing for and complementing a complex, interpersonal, and interprofessional process. Barriers to using resources included a lack of a defined workflow and time.

Conclusion:

Our data suggest that ACP resources that promote engagement are valued but under-utilized in practice. The use of ACP resources with an interprofessional team and a self-management approach is a promising strategy to mitigate the barriers of ACP implementation while improving engagement in ACP.

Introduction

Despite evidence that advance care planning (ACP) is a valuable endeavor, implementing this in practice is complicated.¹ Policy efforts to improve uptake and normalization of ACP have not increased completion rates beyond 35% of the US population.^2,3 ACP has been defined as a process in which individuals define their goals and preferences for future care and are able discuss this with family and health providers.¹ Therefore, completion of an advance directive or living will are helpful in identifying a surrogate decision maker and preferences, but they fall short in eliciting values or supporting communication, which reflects full engagement in the process of ACP.⁴ Educational resources such as written materials, videos, web sites, and decision aids (herein referred to as ACP resources) that support a self-management approach have proliferated in recent years.^5–7 The use of these resources can help patients, their care partners, and health care providers prepare for and confidently engage in ACP.⁸ Yet gaps remain in understanding what the most effective strategies are to improve the use of ACP resources for self-management support (SMS).⁹

The process of ACP is complex for many reasons. Normalizing ACP includes discussing ACP with all adults, regardless of their state of health.¹⁰ Yet these conversations about advance directives are limited in that they address future hypotheticals and lack situational context. In the context of serious illness, ACP requires communicating about prognosis and can be fraught with emotion when discussing life-limiting conditions.¹¹ Discussing topics such as prognosis and interventions like mechanical ventilation requires a high level of health literacy.¹² Advance directives are limited in that they address future hypotheticals and lack situational context.¹³ Visits with providers are short and driven by regulatory needs, leaving little time to effectively discuss such weighty issues.¹⁴ Lastly, there has long been a lack of transparency regarding an individual’s documented ACP: even if a person takes the step to document their wishes, these documents may reside outside the health care system, may not be communicated with their care partners or health providers, and finally, may not be shared between care settings and providers.¹⁵ The use of ACP resources can help to address some of these complexities. Thus, there is a compelling need to study contextual factors influencing the implementation of ACP SMS such as the integration of ACP resources that address some of these known barriers to ACP completion.

The chronic care model (CCM) emphasizes improving the quality of chronic care management and provides a helpful framework to study the integration of ACP resources.¹⁶ The CCM focuses on “productive interactions between informed patients who take an active part in their care and prepared providers with resources and expertise.”^17,18 Central concepts of the CCM include integration of community resources, the health system, delivery system design, decision support, clinical information systems, and self-management support. In this study we focus on the use of ACP resources to enhance SMS, a central concept of the CCM, to support productive interactions.

SMS aims to support patients in managing their health in partnership with their providers. SMS includes patient education as well as a commitment to patient-centered care, shared decision-making, and interprofessional teamwork.^19,20 While patient education focuses on giving information on a predefined problem or disease management, SMS supports patients to make decisions and take action on goals that the patient identifies as important and meaningful to them.^21,22 Incorporating ACP resources as part of an SMS approach may lead to fuller engagement with ACP by moving beyond simply identifying a surrogate decision-maker, towards supporting a person to identify their values and goals and to communicate them with their care partners and health care providers.^23,24 When viewing ACP through the lens of SMS, ACP is seen to include more than filling out a form, to one that provides support of an entire process that is directed toward the patient’s readiness, values, and goals. Such an approach includes resources that encourage engagement in exploring values and preferences. It is also acknowledged that as part of an SMS approach, if the patient does not identify ACP as a priority and chooses not to engage beyond identifying a surrogate decision maker, providers can reassess for changing priorities over time. In this study we explored how ACP resources were being used to support an SMS approach to ACP.

Material and Methods

The data analyzed here are part of a national study to understand the barriers and facilitators, and the diversity of experiences in ACP adoption across 11 health systems in the United States. This study had multiple components, including understanding factors affecting billing (Ladin et al In Press), and differences in approaches for ACP. This paper reports on a portion of the data from the qualitative arm of the study.

The methodological perspective of this qualitative study is through the lens of interpretive description (ID), a generic qualitative approach. Generic qualitative approaches do not constrain the researcher to traditional qualitative methodologies (eg Ethnography, Grounded Theory, or Phenomenology) that are often a poor fit to answer clinical practice questions.²⁵ ID is intended for applied health research and focuses on questions that arise from complex clinical practice issues.²⁶ The clinical practice questions we sought to answer were: What ACP resources are used, and how do clinicians and patients use these ACP resources to support engagement with ACP? Given our interest in productive interactions between informed patients and prepared clinicians, it is key to integrate the perspectives of health care stakeholders (clinicians and administrators) and patients to provide the broadest possible understanding of how ACP resources can support self-management. In this study, we present the findings of our analysis of original transcripts from clinician stakeholder interviews and patient focus group (FG) interviews. This study was approved by the Partners Health Care Institutional Review Board. The consolidated criteria for reporting qualitative research (COREQ) supported manuscript preparation.²⁷

The study included a multisite analysis of 11 health systems across the US. Recruitment of study sites ended after completion of data collection at site 11 when the research team determined that no significant or new information was being revealed. Within each site, interview participants were purposively selected with the assistance of a site champion. We selected participants based on role (eg, clinicians, administrator), specialty (eg, geriatrics, primary care), and experience with ACP. Additionally, we conducted patient FGs at five of the sites. Recruitment of FG participants varied across the five sites based on the requirements of the site and included recruiting through PCPs, ACP clinics, patient and family advisory councils, or through ACP billing code data.²⁸

The interdisciplinary research team included researchers in health services, medicine, nursing, and social science. All members of the research team had previous experience in conducting qualitative research and participated in the collection, analysis, or interpretation of interview data. The research team developed semi-structured interview guides (clinician, administrator, and patient FG) based on current literature related to the practice of ACP (Example questions in Appendix A). Our expert advisor panel reviewed the interview guides, and we pilot tested the FG guide and revised based on participant feedback

The research team conducted interviews between August 2018 and December 2019 with at least two research team members present for each interview. Two sources of data were included in this analysis: (1) individual interviews with health care stakeholders and (2) patient FGs. All interviews were audio recorded and professionally transcribed. Nvivo 11 (QSR International; Melbourne, Australia) supported the coding process.

Analysis

Our analysis was guided by interpretative description which seeks to generate description and insights to inform clinical application.²⁶ Health care stakeholder and patient FG transcripts were coded independently. A coding framework was developed based on the study questions and applied to health care stakeholder interviews. New codes were added to the codebook as they emerged and discrepancies in coding application were resolved by discussion as a team. This coding framework was then applied to the patient FG interviews. The research team double coded 15% of health care stakeholder transcripts and all FG transcripts. The codes from both the stakeholder interviews and patient FGs were provisionally organized, discussed by the research team, iteratively developed, and organized into final themes.²⁶

Findings

We completed 11 case studies across the US: 4 in the northeast, 2 in the south, 4 in the west, and 1 in the midwest. Eight of the case study sites were part of an academic health system, 2 were large non-profit health systems, 1 was public, and 2 had a religious affiliation. Bed size of the case study sites ranged from 277 to 5004. We interviewed a total of 274 health care stakeholders and conducted 7 FGs with 37 patients (Table 1). The 7 patient FGs were conducted at 5 sites, 2 in the midwest, 2 in the northeast, 1 in the south, and 2 in the west. There were a total of 34 participants with a range of 4–8 members per group.

Table 1.

Participant Demographics.

	Physician	Non Physician Clinician (NP, PA RN, SW Chap)	Other (Admin Not Clinician, Billing)	Patients (7 Focus Groups)
N	165	75	34	34
Age mean (SD)	50.2 (9.9)	47.7 (11.0)	55.3 (8.0)	77.2 (6.5)
Gender %
Male	55.0	16.2	24.0	35.3
Female	45.0	83.8	76.0	64.7
Race %
White	83.8	91.2	88.0	85.3
Black or African American	2.7	2.9	8.0	8.8
Asian	13.5	5.9	4.0	5.9
Ethnicity, Hispanic %	2.0	1.0	4	3.1
Languages spoken %				n/a
English only	67.9	84.9	71.4	n/a
Spanish	15.1	4.1	7.1	n/a
Other	17.0	11.0	21.4	n/a
Years in practice mean (SD)	22.3 (10.8)	19.1 (12.3)	20.7 (11.7)	n/a
Region (N)
Northeast	60	23	11	2
Northwest	27	11	2	2
South	22	15	8	2
West	56	26	13	1
Specialty (N)			n/a	n/a
Internal medicine/Hospitalist	85	2
Palliative care/Hospice	38	10
Primary care	26	7
Geriatrics	28	5
Surgery	20	0
Medical oncology	7	2
Neurology	8	1
Critical care	7	0
Pulmonary	4	1

We first report on a summary of the use of ACP resources as discussed by our participants. This is followed by a description of three themes related to how ACP resources were used: (1) preparing for and complementing a complex process, (2) engaging in an interpersonal and interprofessional process, and (3) barriers and solutions to ACP Self-Management Support resource use.

Use of ACP Resources

As part of the interview guide, health care stakeholders were asked if they used any visual, video, or written materials in conducting ACP discussions. Reference to the actual use of ACP resources was present in 179/274 (65.3%) of these interviews. Many clinicians reported that they did not use or were not aware of ACP resources. The FG interview guide did not include a specific question about ACP resources yet in 6/7 (85.7%) patient FGs there was some mention of or reference to an ACP resource. Together these included references to 22 different resources produced by individuals, for profit companies and non-profit organizations (Table 2).

Table 2.

ACP Resource Materials^*.

Name of Program	Accessibility (Cost, Internet, etc)	Languages	Resource Description
Preference documentation resources
Advance directive	Paper/electronic form	English (varies)	Form for completion Assigns HCP Documents care preferences Explains legal aspects
Living will	On-site, publicly available online	English (varies)	Form for completion Documents care preferences
Medical power of attorney (MPOA)	Paper/electronic	English (varies)	Form for completion Assigns decision-making agent
ACP engagement resources
Cake	Website https://www.joincake.com	English	Form for completion Advice for communicating preferences and EOL decisions Website with information tools and resource links
The conversation project	Paper/Online https://theconversationproject.org	14 languages	Educational materials and conversation starter kits Guides for choosing a health care proxy Focus on decision making and values
5 wishes	Paper, charge for copies fivewishes.org	29 languages	Workbook for documenting end of life care preferences Conversation guides and resources for individuals, families, health care professionals
Get your shit together	Electronic Charges for online course and consultation https://getyourshittogether.org	English	Blog/website with information, checklists, resources on financial/medical decision-making, living wills, ADs Offers an online course
Know your choices-Honoring choices	Paper/Online Varies by state https://honoringchoices.org	10 languages	Information guide on ACP, palliative care, hospice care, MOLST forms Provides links to many other resources
My choice my wishes	In-person, some materials available online, fee for service available through the US oncology network	English	Interactive consultation program for patients with terminal cancer/incurable disease Nurse practitioners can meet with patient, talk about ACP/living wills, assist with documentation completion
Mycarg.org chemotoxicity calculator	Publicly available online https://www.mycarg.org	English	Chemotherapy toxicity calculator which uses patient parameters to share risks of chemotherapy/cancer treatments for older adults
MyDirectives	Available online and via mobile App https://mydirectives.com	English	Platform for form completion and educational tools People can record (including video recordings) and upload medical treatment wishes, ACP preferences Possible to connect with health systems
Our care wishes	Paper/electronic On-site, take home, publicly available online https://www.ourcarewishes.org	English	Forms for completion and some educational material Collection of forms/surveys used to fill out ACP wishes. Contains glossary of ACP terms; thought exercise with scenarios and preference choices
Plan your life span	Electronic, publicly available online https://www.planyourlifespan.org	English	Provides info and directs users to forms to fill out to describe ACP preferences
PREPARE/Prepare for your care	Paper/Online https://prepareforyourcare.org	15 languages	Forms for completion and educational materials Patient-centered tools and interactive website (goals of care, ACP values)
Vial of life	On-site paper https://www.vialoflife.com	English	Information and forms to show a physician ACP educational packet, sticker/sign for informing emergency personnel of preferences
Dr Angelo Volandes’s ACP video series	On-site, publicly available online videos www.angelovolandes.com	20 languages	Video series features a variety of topics related to ACP
WiserCare	Electronic, publicly available online https://www.wisercare.com	English	Online form completion Platform for completing ACP online; asks questions to identify preferences, generates an AD
Community resources
Health learning center	In person at health centers Librarians often available resources/databases available online	n/a	Provides information and assistance with completing forms. Free full-service medical/consumer health library. Specialize in providing patient medical info, can help with ACP forms
National health care decisions day	On-site event	n/a	Annual event/program dedicated to providing the public with information and forms related to ACP awareness
Senior community center	Various In person resources/databases available online	n/a	Varies by town
Death doula	In person	n/a	Provides in home support for end-of-life care
Death Café	In person discussion	n/a	Group directed, community-led discussion to increase awareness of death and living

^*This list includes only resources that were discussed by our participants and does not represent a comprehensive list of ACP resources.

Health care stakeholders most frequently discussed using resources that supported documentation of preferences such as completion of Advance Directives (AD), Medical Durable Power of Attorney (MDPOA) or Physician Order for Life Sustaining Treatment (POLST). “When people are amenable to hearing more about Advance Directives, we have a written booklet here in the hospital, a standard booklet” (Site 7, social worker). We categorized these resources as ACP preference documentation resources, which we defined as resources that serve to document the outcome of ACP (by completing forms such as AD, MDPOA, or POLST), but do not address SMS processes such as communication, reflection on values, and decision making.

A smaller number of health care stakeholders reported using resources that did incorporate SMS processes, which we categorized as ACP engagement resources. As articulated by 1 participant:

There has been a lot of work about having tools to help people that complement the documents themselves, right? So, you have a document which is a tool to record what people’s preferences are, but there are often tools that go along with those documents to help people figure out how to fill them out and think through them (Site 9, physician).

Engagement resources may or may not incorporate ACP preference documentation and include varying levels of support for processes such as communication, reflection on values, and decision making. Figure 1 illustrates how we categorized preference documentation resources and engagement resources according to their purpose and value with supporting quotes.

Figure 1.

Purpose and value of ACP resources.

Out of 322 references to the use of resources among health care stakeholders, preference documentation resources were mentioned 221 times, more than twice as often as ACP engagement resources, which were mentioned 90 times, while community resources such as National Health care Decisions Day were mentioned 11 times. Within our sample, social workers comprised the non-physician role (compared to nurses, chaplains, and administrators) that most frequently discussed engagement resources. Among medical specialties, palliative care clinicians discussed use of ACP engagement resources the most, while surgery, neurology, and nephrology discussed these least. Both administrators and patients discussed community resources, whereas those in clinical roles did not. Administrators mentioned different community resources (eg, National Health Decisions Day and patient learning centers) than those mentioned by patient FG participants (eg, senior centers and death café). In terms of health literacy, only 5 resources were available in languages other than English. Most relied on access to internet and required basic computer literacy and online navigation skill. One resource charged a nominal fee for paper copies of their resource.

Preparing for and Complementing a Complex Process

While it is acknowledged that preference documentation resources did not necessarily address SMS approaches, they functioned as a common starting point for more in-depth conversations.

I use the standard document mostly to show that [ACP’s] not something that is super-overwhelming … because I think a lot of patients worry about how to write out specific—like a detailed outline of what they would want for their life or what they would want in the event that they are not able to make decisions for themselves (Site 4, social worker).

Health care stakeholders valued preference documentation resources as a starting point for further ACP discussions: “It’s amazing how scary this must be for patients who are not familiar with health care” (Site 3, administrator), and “Even the power of attorney form is still not enough. It just starts the conversation, and these other forms help tease it out a bit more” (Site 4, social worker). Preference documentation resources document essential information such as the appointment of a health care proxy (HCP) or MDPOA and were used to prepare for and complement more focused ACP discussions.

ACP engagement resources were described as useful for helping people consider their options for completing preference documents, identifying what matters most to them, and introducing them to the kinds of decisions that they need to consider. “Many people just pretty much make a decision about proxy and life support, but don’t think about some of the other implications that they should be thinking about at the end, like long-term feeding or whatever it might be” (Site 4, physician/administrator). Resources make it easier to approach these topics. As a result, patients are better equipped and more prepared to have ACP conversations.

Participants also describe how engagement resources are used to complement preference documents and help further clarify goals. Because this topic can be threatening, complicated, and fraught with legal considerations, both health care stakeholders and patients stated that patients need time to review materials. A common practice that clinicians cited was to give patients time to review documents at home and bring them back or schedule a follow-up discussion. Patients echoed an appreciation for the use of resources outside the office visit.

Engaging in an Interpersonal and Interprofessional Process

ACP resource use supports inclusion of the entire health care team, which encompasses the patient, and their care partner. Underscoring this, a geriatrician related the importance of not only identifying an HCP, but also making sure that the proxy is aware of the patient’s wishes. ACP resources can support that conversation between patient and their care partners or other support persons. “If I’m meeting with a patient and they are uncomfortable about how to initiate the conversation with their family, then, you know, there are some scripts that are available on the Conversation Project to get that conversation started” (Site 11, physician). FG participants also voiced the need for help with care partners. “My partner had open heart surgery in ‘08 and claimed that I had Medical Power of Attorney, but I didn’t, and if I did it was in a safe deposit box. I didn’t know it” (Site 4, FG1, P2). ACP engagement resources support deeper engagement by helping patients prepare for conversations with care partners, for clarifying goals and preferences, and preparing them to make decisions.

In the time-constrained and highly regulated environment of health care, primary care providers are challenged to find ways to provide sustained ACP engagement with patients and their care partners. Our participants identified several promising solutions such as using interprofessional team members including chaplains, librarians, nurses, social workers, and volunteers to support use of ACP resources. Several participants discussed models of care that employed case managers, nurses, or social workers to incorporate the use of engagement resources.

Our hope is that the integrated care managers will help the physicians in their groups to utilize those materials or, if an integrated care manager is involved with that particular case, they may be the one or the social worker on the team, to give out those materials (Site 5, physician).

Two sites described the use of health learning centers or libraries staffed by librarians who specialize in giving patient information on a wide variety of topics. Yet another used trained volunteers to assist with form completion. Finally, patients occasionally bring completed documents to their health care provider. One common source for patients to access ACP resources was through an attorney:

The ones that bring it up to me, the majority of them have done something on the outside, maybe they did health care power of attorney, and they just want to make sure I have the forms and understand their wishes, so they’ll bring them in (Site 4, physician).

Patient Focus Group Participants had Additional Recommendations for Encountering ACP Resources Including Senior Community Centers, and Nonprofit Organizations Such as the Alzheimer’s Association

I also live in a senior community, and they had hospice come in and speak with us, and I attended that lecture to be as knowledgeable as possible because my parents had prearranged funeral plans, my life and my brother’s life was so much easier (Site 9, FG2, P3).

Barriers and Solutions to ACP Self-Management Support

Barriers to using ACP resources for SMS were organized into two categories: (1) accessibility and utility of resources and (2) workflow barriers and solutions.

Accessibility and utility of resources.

One of the most common barriers discussed was language and literacy, including health literacy and computer literacy (Table 3). As noted in Table 2, few resources are available in languages other than English. Further, they are often written at a high literacy level and not in plain language as recommended by the CDC. In addition, a high level of health literacy was associated with the topic of ACP. Finally, computer literacy and access to the internet were identified as barriers to access.

Table 3.

Linguistic Barriers.

Barrier	Illustrative Quote
Language	“All of our advance care planning packets, they come in 4 languages. So, it’s English, Spanish, Chinese, and Vietnamese. And those are our primary languages that we serve in our clinic, but there are certainly patients where that would not work, and I personally don’t know what our resources would be for offering them concordant materials for their language.” (Site 8, physician) Not highlighted as a barrier by patients in FGs
Literacy	“…It explains what advance directive is, but it’s not particularly patient-friendly language. It’s got to be like 10th grade or something.” (Site 7, physician) Not highlighted as a barrier by patients in FGs
Health literacy	“What this booklet doesn’t have… is a more explicit conversation of what these different things are. So, when you are electing for CPR, what exactly is CPR? When you are electing for intubation, what exactly is intubation?” (Site 7, physician) “One is the language around this keeps changing… but there is still all these words out there that represent different language around what this is. I think that needs to be fixed.” (Site 4, FG1, P7) “I’ve got the forms. I filled them out. What I’m asking is for a medical person to explain really what do these mean in actuality? (Site 4, FG, P3)
Computer literacy	“It’s actually an online platform, but in the palliative care clinic, we have actually pushed the developers of that to also create a paper copy, because we are finding that technology sometimes functions as a barrier to the patient.” (Site 11, physician) Not highlighted as a barrier by patients in FGs

“And our Advance Care Planning booklet is written, I can’t remember what grade level. I think it’s written to fifth grade reading level, because that’s what most of our community has attained. So, I can’t just send people anywhere for more information. Which I think is a barrier that’s not imposed by the community, it’s imposed by the available resources that we have” (Site 7, social worker).

ACP resources that match the needs of the community served were key to successful SMS of ACP. Clinicians expressed dissatisfaction with some of the resources, feeling they were not appropriate for all patients. For instance, resources that focused on specific care at the end of life may not be appropriate for patients not close to the end of life.

Workflow barriers and solutions.

Identified barriers to the integration of ACP resources included the absence of a process for integrating ACP resources into practice and lack of time within the office visit (Table 4).

Table 4.

Barriers to ACP Resource Integration.

Barrier	Illustrative Quote
Workflow (availability, follow up)	“But I’m here, because I can’t get information anywhere.” (Site 4, FG1, P2) “I would say routinely, there is absolutely no routine use of giving people information.” (Site 5, physician)
Time	“Do you want to take up your precious [time], you know, if you’ve been waiting to get to see that doctor, about something like this that you can get information on elsewhere?” (Site 4, FG1, NW, P3) “… little bit of a kind of, shove it down the lane, I’m not going to talk about this because it takes time and it’s hard and people might have an emotion that I then have to deal with. I have 7 other patients to see and I don’t have time for an emotion.” (Site 11, physician)

Providers and patients alike expressed frustration at not being able to consistently locate resources when needed. As noted previously, a predominant strategy was to provide ACP resources for people to take home and review. Given that the goal of SMS is to support patients to identify actions and goals that are important to them, it requires more than simply providing the resource. “I think a lot of people when they’re given material in clinic, although it feels good for us as the provider to say, ‘Hey, I’ve given this patient something.’ Most people just toss it, right?” (Site 4, social worker). However, participants reported that there was often no process for following up with patients.

Lack of adequate time for office visits was a clear frustration for both clinicians and patients. “But when I allot this time for the conversation, unless it’s a goals of care only visit, which I get very rarely, I generally don’t have time to sit there and go into depth…” (Site 7, physician). The incorporation of resources can help ensure that time during visits is productive for both the patient and clinician.

We encountered several models that addressed process and time barriers that are worth mentioning. One site used shared medical appointments in which groups of patients and a provider met together for two sessions. This model allowed the participants to receive materials at the first visit and return to the second visit with completed materials. The interval between the meetings provided time for patients to reflect on their decisions and speak with care partners. The second meeting then focused on communication about the outcomes of the patient’s decision making.

Several sites had innovative models that leveraged the use of ACP resources through interprofessional teams. In these models, ACP resources supported improved communication between patients, their providers, and care partners. Patients and non-clinician participants were also aware that community resources had a role in educating the general public about ACP as supported by the CCM.

Discussion and Conclusion

Discussion

This study examined use of ACP decision aids and educational materials to evaluate how they support SMS for ACP. Our assumption was that providers prepared with resources, coupled with informed and activated patients, will lead to productive interactions that ultimately address some of the barriers to ACP completion. A wide variety of ACP resources were used as either preference documentation or engagement resources. Preference documents were useful as gateways or starting points to further conversations but did not necessarily support SMS related to ACP. Engagement resources supported self-management by helping patients reflect on goals and preferences and to communicate them with care partners and clinicians.^8,29 Engagement resources mentioned by participants in this study varied widely in how well they incorporated processes such as communication, reflection on values, and decision making. ACP resources were also used across interprofessional teams to assist patients in navigating these conversations with care partners and providers.

We found that a majority of providers used ACP preference documentation resources to support ACP completion. The predominant approach was to give them to patients to take home and complete. Patients welcomed having time to review materials outside the office visit but were concerned about how any decisions that were made were ultimately communicated to their providers. Less common was the use of resources that supported deeper engagement and shared decision-making in the process of ACP. That said, we found evidence that engagement resources were valued by both providers and patients. Use of resources outside of the clinic visit and sufficient time to reflect on ACP decisions are essential components of an SMS approach.

We identified access to/usability of resources and lack of a coordinated workflow as barriers to integrating resources. Specific attention needs to be paid to structural barriers to access of resources. ACP resources were mostly available in English and written with a high level of literacy. Economic advantage also plays a role in access,³⁰ as higher income patients are often introduced to ACP as part of a financial planning process with an attorney.

Some limitations of our study may impact the interpretation and application of our findings. First, our sample was highly homogenous in terms of race (predominantly white) and FG participants were generally well educated. Future study is warranted to understand how resources can be adapted to fit the needs of local populations. Second, most participants were clinicians or patients who were interested in, or even champions of ACP. Health care provider participants were largely from specialties in which ACP discussions are more common such as Geriatrics and Palliative Care. Therefore, our findings should be interpreted as reflecting the views of those who already value ACP. Future study should examine these questions with participants who do not identify as champions of ACP. Finally, we must remember that the conclusions drawn from these data reflect the context in which they were collected and the ability of participants to articulate their experiences.²⁶

Conclusion

Our findings can be interpreted through the concepts of CCM and the previous literature on ACP. We found that ACP resources are widely used, but there is room for improvement in using resources beyond documenting preferences towards an approach that encourages self-management concepts such as a commitment to patient-centered care, shared decision-making, and interprofessional teamwork. Tailoring resources to the needs of the community served may help to reduce structural barriers to ACP completion.

In addition to the central role of SMS that this data aimed to answer, our data supported other concepts of the CCM such as the need for improved delivery system design, the integration of ACP into the community and use ACP resources with an interprofessional team approach.^24,31 Not all clinicians have the knowledge and skill for these conversations, but we observed successful integration of interprofessional teams to support the ACP conversations. While patients appreciate the use of resources outside the clinic visit, and these can certainly augment limited resources and time, system redesign is required to ensure follow on the ACP process.

Establishing partnerships with community agencies who can promote the use of ACP resources is an underutilized resource for SMS of ACP. Since ACP can be undertaken across the life course, an upstream approach in the community can help lessen the burden on our health care system, allowing health care providers to focus on more complex discussions that may involve goals of care. The Health Care Decision Day is an excellent model for incorporating ACP activities into the community by involving houses of worship, libraries, and senior centers.

Practice Implications

Barriers to ACP identified in this study are similar to previously documented barriers.²³ Integrating ACP resources into clinical practice is a promising strategy to approach ACP as an SMS process while simultaneously addressing the barriers of time and workflow. Developing models of care including payment models that imbed a structured process for the use of ACP resources and an interprofessional team may be an attractive way to increase the uptake, quality, and engagement in this complex process.³² Additionally improvements in access to specialist palliative care and interprofessional resources in the community and more emphasis on primary palliative care as part of standard clinical practice are needed. Future study is needed to evaluate the quality of ACP engagement resources and whether they meet criteria of SMS approaches.

Appendix 1: Sample Interview and Focus Group Questions

How do you approach ACP discussions with your patients? What is your process for conducting an ACP conversation?

PROBES: timing of conversation (regular visit/separate), who is involved, how many times is this discussed, any visual, video, written materials, involvement of others (family, etc), involvement of other clinicians (nurses, social work, dietician, etc)

What makes you decide to have (or that a patient is ready) an ACP conversation?

How have you come to this approach? For example, have you tried other approaches with patients in the past that have been less successful, or more difficult?

Do the conversations result in any documentation of wishes?

Sample Focus Group Questions

How did you first learn about the option of having an ACP conversation (conversation about your wishes for future care)?

Did you receive any information from your health care provider, health care system, lawyer, or anyone else about ACP, including any documents that might be used to help complete an advance care plan?

Can you tell us about any conversations you might have had with your clinicians about your wishes or what type of medical care you would want or not want?

What do you see as the benefit of having an ACP discussion with your clinician?

These conversations can be difficult. In your experience, what would make it easier to have this conversation with your clinician?

Did you prepare ahead of time for this conversation?