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. Author manuscript; available in PMC: 2021 Jan 1.
Published in final edited form as: J Nurs Scholarsh. 2019 Sep 23;52(1):55–64. doi: 10.1111/jnu.12513

Using Implementation Science to Further the Adoption and Implementation of Advance Care Planning in Rural Primary Care

Heather Nelson-Brantley 1, Carol Buller 2, Christie Befort 3, Edward Ellerbeck 4, Ariel Shifter 5, Shellie Ellis 6
PMCID: PMC6953624  NIHMSID: NIHMS1062991  PMID: 31545557

Abstract

Purpose:

To analyze the literature on advance care planning (ACP) in primary care through the lens of implementation science, with a focus on implications for rural settings.

Design:

Scoping review of the literature.

Methods:

The Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, PsycINFO, and the Psychology and Behavioral Sciences Collection databases were searched for studies related to ACP adoption and implementation in primary care. The Theoretical Domains Framework was used to map the literature to 14 determinants that serve as barriers or facilitators to ACP. The Conceptual Model of Evidence-Based Practice Implementation in Public Service Sectors was used to analyze the stage of implementation for each of the included studies.

Findings:

Four steps to ACP were specified: identification, conversation, documentation, and follow-up. Determinants were identified for each step, but studies largely focused on the conversation step. Professional role and identity, environmental context and resources, and emotion were the most frequently cited determinants in initiating conversations. The identification step was largely determined by behavioral regulation. For documenting ACP, environmental context and resource determinants were most prevalent. In the few studies that addressed follow-up, providers expressed a desire for electronic reminders as a behavioral regulator to follow-up.

Conclusions:

While ACP has been shown to have patient, family, and societal benefits, its uptake in primary care has been minimal. Because ACP is a complex process that is highly context dependent, implementation science is critical to inform its successful adoption and implementation. Smaller healthcare networks, adaptable professional roles, trusted relationships, and tight-knit community might be important facilitators of ACP in rural primary care.

Clinical Relevance:

Findings from this study can be used to accelerate ACP implementation in rural primary care.

Keywords: Advance care planning, implementation science, primary care, rural

Advance care planning (ACP) is the process of guiding patients’ selection of preferences for end-of-life care. It includes receiving information on the types of life-sustaining treatments available, deciding what types of treatment are wanted or not wanted, sharing personal values with loved ones, and completing an advance directive (National Hospice and Palliative Care Organization, n.d.). ACP is critically important for individuals with chronic or life-limiting illness, especially older adults who disproportionately suffer from dementia, cancer, cardiovascular disease, and chronic respiratory disease (Narang, Wright, & Nicholas, 2015). Early ACP has been shown to improve the quality of life of individuals with life-limiting illness and their family caregivers; increase utilization of palliative care; and decrease utilization of emergency department visits and hospitalizations (Detering, Hancock, Reade, & Silvester, 2010). Yet only 14% of an estimated 40 million people worldwide who could benefit from ACP and subsequent palliative care receive it (World Health Organization [WHO], 2018).

Despite global consensus that ACP should start early in the disease process (The Conversation Project, and Institute for Healthcare Improvement, 2017; Palliative Care Australia, 2018; van der Steen et al., 2014; Worldwide Hospice Palliative Care Alliance, 2015), ACP usually happens too late or not at all (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014; Tjia, Dharmawardene, & Givens, 2018). Most Medicare beneficiaries (86%) want to die at home, yet nearly 40% die in hospitals, with 29% receiving aggressive care in the last 30 days of life (Tanuseputro, Budhwani, Bai, & Wodchis, 2017). The absence of ACP creates unnecessary patient and family caregiver distress, escalates costs at the end of life, overlooks a person’s values and preferences, and threatens their dignity at end of life (Narang et al., 2015).

A systematic review identified that 61% to 91% of older adults expressed comfort or even enthusiasm to discuss their preferences for end-of-life care (Sharp, Moran, Kuhn, & Barclay, 2013). Older adults saw the benefits of ACP to include assurance that their wishes would be respected, opportunity to address important areas of care before becoming too ill, and easing loved ones’ decision-making burden. Importantly, they saw healthcare providers as responsible for initiating ACP (Sharp et al., 2013); however, only 2% to 29% actually discussed ACP with their healthcare provider. Without provider uptake, patient preferences will remain unaddressed.

Efforts have been made to improve ACP adoption in hospitals and nursing homes, but ACP must be executed in primary care settings to become more proactive (WHO, 2018). Uptake of ACP in primary care is limited, particularly in rural areas (Bakitas et al., 2015). Rural health clinics may face significant barriers to ACP adoption and implementation, due to significant gaps in the availability of palliative care specialists and need to travel long distances for care (Hauenstein et al., 2014). However, the need for ACP is even greater in rural areas because rural populations are disproportionately older, with higher rates of dementia, cancer, and other chronic disease (Ceronsky, Shearer, Weng, Hopkins, & McKinley, 2013). Thus, research focused on the implementation of ACP in primary care broadly and rural health clinics more specifically is needed, and nursing professionals have been charged with advancing this agenda (American Nurses Association Professional Issues Panel, 2017).

Implementation science (IS) provides a theoretically informed, evidence-based approach to accelerate the uptake of evidence-based interventions (Brownson, Colditz, & Proctor, 2012) and is key to improving the uptake of ACP in primary care. Thus, the purpose of this study was to (a) name and define the steps of ACP, (b) analyze existing literature on the facilitators and barriers to ACP from providers’ perspectives using IS frameworks, and (c) use the findings to inform a research agenda to accelerate ACP implementation in rural primary care.

Methods

Our study team was composed of experienced implementation scientists; behavioral and social science researchers; a nurse researcher with expertise in organizational change in rural health settings; a gerontological board-certified advanced practice nurse with over 20 years of experience in ACP and primary care; and a primary care physician. Each team member’s role in conceptualization, literature identification, data abstraction, and analysis are described below.

Conceptualization: Reframing ACP Through an Implementation Science Lens

IS involves the systematic study of the processes used to implement evidence-based practices and the contextual factors that affect these processes. It is recommended that both determinant and process frameworks be used to conceptualize the implementation of an evidence-based practice (Nilsen, 2015). We chose three extant IS models to guide our work. First, two analysts (H.N-B., S.E.) adapted criteria for specifying implementation strategies (Proctor, Powell, & McMillen, 2013) to name and define the specific steps of ACP. The specified steps of ACP were then verified by the geriatric nurse practitioner on our team (C. Buller). Next, we chose the well-established Theoretical Domains Framework (TDF) (Cane, O’Connor, & Michie, 2012) as our determinant framework because it consolidates 84 behavioral constructs derived from psychological and social theories into 14 validated domains relevant to health practitioner behavior change (Table S1). For our process framework, we chose the Conceptual Model of Evidence-Based Practice Implementation in Public Service Sectors (Aarons, Hurlburt, & Horwitz, 2011). The model conceptualizes four stages of implementation (exploration, adoption/preparation, implementation, and sustainment) and posits that different determinants may be at play at each stage. The selection of IS frameworks was discussed and agreed upon by all members of our study team.

Literature Identification

We conducted a scoping literature review (Munn, Stern, Aromataris, Lockwood, & Jordan, 2018), searching the Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, PsycINFO, and the Psychology and Behavioral Sciences Collection databases (Figure S1). Inclusion criteria were primary research studies published in English between 1937 and February 2019 with a specific focus on ACP for older adults in primary care clinics. Implementation of evidence into practice is greatly affected by the context in which it is implemented. As such, articles focused on ACP in settings other than primary care were excluded. Also excluded were palliative care studies that did not specifically address ACP or determinants of ACP adoption or implementation, and studies that focused exclusively on patient and family perspectives or outcomes. Reference lists of review articles were scanned to identify other relevant articles missed by our search terms. We screened 127 abstracts and excluded four duplicates and another 41 that addressed determinants of ACP in hospitals, nursing homes, home health, or other non–primary care clinic settings (Figure S2). Of 82 articles that received full review, 52 were excluded because they did not address ACP or determinants of ACP, focused on implementing ACP in non–primary care settings, were solely addressing younger adults (<65 years old), children, or infants, or were focused on a specific clinical condition outside cancer, heart failure, dementia, or chronic obstructive pulmonary disease. A detailed log of each article excluded with rationale for its exclusion was maintained and discussed by two reviewers (H.N-B., S.E.) to ensure consistency in the identification process.

Data Abstraction

For articles deemed eligible for review, two analysts (H.N-B., S.E.) recorded the ACP implementation step(s) to which it applied and distinguished whether the participants were contemplating adoption, reporting determinants based on experience of trying to implement ACP, or describing their local adaptation of ACP recommendations (intervention). The two analysts also recorded study setting (country, clinic type, rurality) and provider characteristics (specialty; physician, nurse, and/or allied health). For each study, the two analysts abstracted all determinants identified and mapped them to the 14 domains of the TDF. Each analyst made an assessment of which TDF domain the determinant belonged to. A third analyst (C. Buller) reviewed all abstractions, and where uncertainty existed, group consensus was used to finalize the decision.

Analysis

We quantified the number of studies reporting results from each stage of adoption (preadoption/adoption; implementation; or adaptation). We assessed the extent to which published literature comprehensively explored all domains of the TDF, noting which domains had no or few studies. For provider and setting characteristics, we assessed the frequency with which each occurred and summed the characteristics. Finally, using principles of intervention mapping (Powell et al., 2017), we evaluated whether existing recommendations for ACP implementation might address identified determinants of ACP use. The analysis process and results were reviewed and agreed upon by the entire study team.

Results

Specifying the Steps of ACP

Comparing recommendations from North America, Europe, and Australia (College of Family Physicians of Canada, 2018; Michigan Quality Improvement Consortium, 2018; National Institute for Health and Care Excellence, 2017), we specified ACP as four discrete steps: (a) identifying appropriate patients; (b) initiating a structured conversation to elicit serious illness and end-of-life care goals; (c) documenting the patient’s wishes; and (d) conducting ongoing review of end-of-life planning documents. Importantly, we defined ACP as a wellness intervention to be conducted well in advance of end of life.

Most included studies were conducted in North America or Europe; only one study was conducted in Asia, and none were conducted in Australia, Africa, or South America. Care settings were mostly community-based care; two involved academic settings. Few specified multispecialty settings. Delivery models ranged from fee-for-service to integrated health systems, such as the Veterans Administration in the United States, to national health systems. Few articles specified rurality of the care setting studied (Tables S2–S5). Those that did made no comparisons of determinants by rurality. While all studies included providers working in primary care, some also included specialty care providers (i.e., oncologists, cardiologists, pulmonologists, geriatricians). The most commonly included providers were physicians, nurses, advanced practice providers; less often included were social workers, chaplains, medical students, and other clinic staff.

Determinant Analysis

For most articles, stage of adoption was not directly specified in the article. Thus, stage of adoption was inferred from the article context. Most articles included multiple determinants; thus, findings are reported by number of determinants rather than the number of articles abstracted. Among all the determinants, most were identified in the context of preadoption and adoption (n = 117). Seventy-seven determinants were identified in the context of implementation; 46 were identified in the context of an active intervention study.

Determinants were noted in all TDF domains (Table S6). However, the prevalence of identified determinants varied between each step of the ACP process, with most research focused on conversation. Determinants were identified for 12 of 14 TDF domains for the identification step (excluding emotion and reinforcement domains); 14 of 14 for the conversation step (but few for intentions and memory); 9 of 14 for documentation (excluding intentions, reinforcement, memory, attention and decision processes); and only minimal determinants for follow-up (3 of 14 domains—behavioral regulation, professional role and identity, and social influences).

Identification was largely determined by behavioral regulation (see Table S2). Most studies described disease state triggers the providers relied on to identify patients who needed ACP. Many studies acknowledged the difficulties providers had in recognizing these triggers accurately across several disease states and missing the opportunity for ACP (Boyd et al., 2010; Elliott & Nicholson, 2017; Gott et al., 2009; Oosternink et al., 2016; Robinson et al., 2013).

For the conversation step, professional role and identity, environmental context and resources, emotion, beliefs about consequences, and social influences were most frequently cited (see Table S3). Many providers felt conflict between their role identity to “cure at all costs” and initiating ACP conversations (Gott et al., 2009). Most providers felt it was the role of primary care providers to initiate ACP conversations due to their established relationship with the patient, although this was less common in cancer, where oncologists also felt it was their responsibility. Most often providers agreed it was physicians’ responsibility over others in the care team, although a role for nursing support was acknowledged. Across the literature, the right environment for initiating the conversation was thought essential, an outpatient setting or home visit being the most appropriate place. Lack of time was a frequently identified barrier (Ahluwalia et al., 2015; Bowman, Steffensmeier, Smith, & Stolfi, 2018; Chandar et al., 2017; Dillon et al., 2017; Fulmer et al., 2018; Jones, 2017; Lakin, Benotti, Paladino, Henrich, & Sanders, 2019; Sharp, Malyon, & Barclay, 2018; Tung & North, 2009; Quintana, 2018), although ACP conversations were low even when a dedicated ACP appointment type was instituted. In some countries, legal uncertainties such as who was authorized to prepare advance directives contributed to an adverse environment. Emotion barriers were also frequently reported, including general discomfort with death, as well as the concern that ACP conversations would diminish hope or distress the patient. Providers felt discomfort with family disagreements, were challenged by cultural differences, and feared that patients might be denied treatment based on the conversation. However, for providers who had at least tried ACP, they felt relief when patients and families welcomed the conversation.

Beliefs about consequences were identified as both facilitators and barriers to initiating ACP conversations (Menon et al., 2018). Many providers held positive beliefs that ACP improved patients’ quality of life, family and caregiver satisfaction, and helped patients make informed treatment decisions. However, some providers believed that, despite ACP, the patient’s wishes may not be honored, as the documented plan may not be available to the end-of-life provider (Snyder, Hazelett, Allen, & Radwany, 2013). In social influences, providers were more highly influenced by their relationships with patients and their families than by peers or professional societies. Providers’ perceptions of patients’ and caregivers’ knowledge of diagnosis, capability to make decisions, interpersonal conflicts, and treatment expectations could deter them from initiating conversations (De Vleminck, Houttekier, Deliens, Vander Stichele, & Pardon, 2016; Hall, Murchie, Campbell, & Murray, 2012). Established, trusting relationships with patients were seen as essential to initiate the conversation (Ahluwalia et al., 2015; Hanson et al., 1999; Tilburgs et al., 2018). Although knowledge and skills for holding ACP conversations are essential, determinants in these domains were less frequently described. Table S3 details how additional determinants were described.

For documenting ACP, environmental context and resource determinants were most prevalent (see Table S4). Providers found it difficult to find the necessary forms to properly document and even more difficult to translate that documentation into the electronic health record (Bowman et al., 2018; Boyd et al., 2010; Dillon et al., 2017; Robinson et al., 2013). Many articles emphasized the need to structure the documentation around the values and goals of the patient rather than an advance directive or similar form (Boyd et al., 2010; Dillon et al., 2017; Sharp et al., 2018). From the social influences and beliefs about consequences domains, concerns regarding the impact of family turmoil and the meaningfulness of infrequent documentation were identified.

The final step of ACP, routine follow-up, was least represented, with only three determinants identified (See Table S5). Providers expressed a desire for electronic reminders as a behavioral regulator to remember to follow up (Ahluwalia et al., 2015; Howard et al., 2018). One study reported there was no clear delineation of who (which provider type) was responsible for follow-up (Quintana, 2018).

Adaptations

We identified 10 articles that included implementation strategies designed to address identification of patients, facilitate the conversation, or address documentation. No study used an IS framework to map implementation strategies to determinants. Adaptations to identification addressed behavioral regulation and included developing definitions of end-of-life care that fit with concepts of “continuous palliation” (Gott et al., 2009); designing an alert in the electronic health record (Rose, Leung, Gustin, & Childers, 2019); and activating patients with a four-question personal health record communication tool (Bose-Brill et al., 2018). Adaptations to initiating the conversation included addressing emotion by strategies to elicit patient values rather than specific treatment choices (Ahluwalia et al., 2015). Negative social influences were addressed by preparing patients through brochures or public awareness campaigns (Glaudemans, de Jong, Onwuteaka Philipsen, Wind, & Willems, 2019; Howard et al., 2018; Wissow et al., 2004) and using patient video decision aids (Volandes et al., 2016). Positive social influences were created by promoting collaboration between primary care providers and specialists (Chandar et al., 2017) and using practice champions (Wissow et al., 2004). Motivation was increased by offering incentives—primarily in fee-for-service environments—to promote conversation (Fulmer et al., 2018) or performance feedback (Wissow et al., 2004). Environmental context was altered to overcome lack of time by using tools and information communication technology, delegating parts of ACP to other primary care professionals, and the support of a nurse liaison (Rose et al., 2019). Skills were increased by providing sample scripts, answers to common patient questions, samples of a durable power of attorney for health care, a living will, a healthcare values checklist, and assessment cue cards (Wissow et al., 2004).

Discussion

This scoping review identified TDF-based determinants of ACP steps in primary care and research gaps on factors associated with specific steps. However, we found little research that focused on the particular needs of rural primary care providers. Although rural providers were included in some studies, their needs were not differentiated. This is an important area for future research, as 45% of the world’s population (3.4 billion people) lives in rural areas (Watson, 1993). Understanding determinants to ACP adoption and implementation in rural primary care settings may reveal unique barriers and facilitators to ACP implementation in this context. Rural providers tend to have long-term cross-generation relationships with patients and families and are more likely to care for an aging population. These relationships may serve as an important determinant for initiating ACP conversations, potentially heightening the emotional determinant, and influencing the beliefs about consequences as either more rewarding or more challenging. Rural providers commonly transcend traditional and narrowly defined roles due to a lack of specialists and shortage of providers in general. As such, interprofessional care teams in rural health clinics may be better equipped to adapt to the professional role that was noted as a significant barrier in many of the studies included in this review.

Further, providers in rural areas often have limited access to continuing education and training. It is unknown how this factor impacts their knowledge of ACP, or their ability or proficiency in executing the steps of ACP. Effective interventions exist to increase other healthcare providers’ knowledge and skills and their intent to engage in ACP (Litzelman, Inui, Schmitt-Wendholt, et al., 2017). Whether these would be sufficient to meet all the barriers faced by rural primary care providers is unknown. The most innovative interventions to improve ACP integrate new partners into the healthcare team—nurse navigators and lay health workers—rather than retraining existing team members and removing their barriers (Litzelman, Cottingham, Griffin, Inui, & Ivy, 2016; Litzelman, Inui, Griffin, et al., 2017; Pesut et al., 2017). Although outside the scope of our review, these interventions hold promise, and at least one has been shown to address access barriers, reduce undesired ED utilization, and increase congruence with preferred place of death for rural patients (Pesut et al., 2017). Research to investigate whether these types of strategies are feasible, acceptable, and cost effective across rural healthcare settings is needed.

We found varying degrees of depth to the literature across ACP steps, from the conversation step where all TDF domains were addressed to the follow-up step where only three TDF domains were mentioned. In addition, within each ACP step, the relative importance of TDF domains and their associated determinants across different contexts has yet to be determined. Future research should evaluate the relative importance of each domain to the execution of each step of the ACP process.

Further, the studies included in this review did not clearly indicate which stage (adoption vs. implementation) provider respondents were at in the implementation process. Anticipatory barriers appear to be different from barriers experienced after trying to implement ACP. The promotion of ACP could be advanced by separating these two processes. Potential adopters who are contemplating ACP may respond to implementation strategies that focus on anticipatory barriers around identification, specifically the education and skills domains. Providers who have tried ACP unsuccessfully may respond to implementation strategies that address their beliefs about consequences, whereas providers who have tried ACP but lack appropriate environmental support for documentation may respond to implementation strategies that focus on optimism surrounding the development of documentation systems that are integrated across care settings.

Careful intervention mapping is needed to ensure that interventions address the underlying determinants hindering adoption or implementation of ACP. Although we found a good match between intervention strategies and behavioral determinants for the identification step, there was less alignment in the conversation step. Professional role and identity was identified as a barrier determinant 27 times and environmental context and resources 23 times, yet only one study focused on clarifying roles and addressing environmental and resource barriers. Several interventions addressed education, yet knowledge was identified as a barrier determinant only seven times. Physician and nurse organizations should partner to develop and disseminate guidelines that address each step of ACP, including clarity on the identification trigger and recommendations for addressing role ambiguity.

Although the IS frameworks used to guide this analysis are established, many studies reviewed were qualitative and, thus, present a range of potential determinants, not necessarily the most important determinants. Surveys allowing providers to rank all determinants may ensure that interventions will address the root cause of ACP failure at a particular clinic. Similarly, a single, blunt implementation strategy may not be appropriate for all. As such, research on adaptations to implementation strategies is important for promoting local uptake (Chambers & Norton, 2016).

Several organizations have recommended that ACP start early, and provider respondents in this literature review identified primary care as the appropriate venue for initiating ACP. ACP is best addressed as a wellness issue, because it is easy to miss the triggering event to end of life, and it becomes more difficult and emotionally charged to start ACP after an individual has progressed down the trajectory of life-limiting illness. Reframing ACP as a wellness event best initiated in primary care is an important strategy for addressing negative social influences linked to ACP adoption, which may be particularly important in tight-knit rural communities.

Limitations

There are a number of limitations to this scoping review. First, we chose the TDF, which focuses on the motivational aspects of the decision to adopt, whereas other frameworks may have highlighted more environmental barriers (Tabak, Khoong, Chambers, & Brownson, 2012). Second, our search strategy may not have been comprehensive because we only reviewed literature in English. Thus, we could have overlooked important work addressing rural ACP implementation in Europe, Asia, and South America, of which the latter two continents comprise a high proportion of rural populations. In addition, our focus was on ACP only, and as such, the review did not include studies that focused more broadly on palliative care. Last, because of the limited literature on ACP in rural primary care settings to date, our implications for rural practice at this stage are largely hypothesis generating.

Conclusions

ACP is an important process that enables individuals to reflect on their values and share their wishes for care at the end of life. While ACP has been shown to have patient, family, and societal benefits, its uptake in primary care has been minimal. By reframing ACP through an IS lens, we were able to specify the steps of ACP, analyze existing literature on facilitators and barriers, and use the findings to inform a research agenda to accelerate ACP implementation in rural primary care. Smaller healthcare networks, adaptable professional roles, trusted relationships, and tight-knit community might be important facilitators of ACP in rural primary care and warrant further investigation. Because ACP is a complex process that is highly context dependent, IS is critical to inform its successful adoption and implementation in rural primary care. Millions of people worldwide could benefit.

Supplementary Material

Suppl 1

Clinical Resources.

Footnotes

Supporting Information

Additional supporting information may be found in the online version of this article at the publisher’s web site:

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