Barriers at an individual level

When considering barriers to ACP in general practice from an individual perspective, there were very few general practice studies directly involving patients.14 39–43 A few studies described patient experience by proxy through opinions obtained from GPs. The most common barrier described at the individual level, largely attributed by clinicians, was patient lack of knowledge and awareness about ACP, including lack of knowledge about clinical considerations at end of life.44

Attitudes of individuals about ACP were reported to vary widely. Studies reported the perceived irrelevance of ACP was a barrier, with the relevance of ACP described with ambivalence when associated with an existing state of wellness or absence of terminal diagnoses.13 14

Further, an identified lack of trust in the health system with reported concern that an ACP would in some way limit care or negatively impact the individual was reported.40 The concepts of poor literacy,45 and poor health literacy,46 as contributing factors were also noted.

Barriers at an interpersonal level

Barriers identified across the interpersonal level involved the individual in relation with others. Very few general practice studies focused specifically on this interpersonal aspect.47 48 Many studies described confusion and role ambiguity about initiation of ACP. When considering the doctor–patient relationship a number of studies reported a difference in expectation about whose role it was to initiate the ACP discussion.

Described as a lack of role clarity, this uncertainty in the doctor–patient relationship was understood as a barrier to ACP.41 42 49–52 A number of studies cited GP concerns about initiating the ACP discussion, not doing so in order to avoid being a source of anxiety or loss of hope. Concern about jeopardising the doctor–patient relationship was a recurrent theme described by a number of studies.

Patient expectation that GPs should initiate ACP discussions,41 42 51 was understood as a barrier when the GP did not initiate the discussion. Studies found patients were willing to discuss ACP when asked. This contrasted with other findings that discussing ACP and end of life preferences was potentially distressing for some individuals who might prefer to avoid the topic as unpalatable or conversely trust in an absolute deity being cited as reason to not need ACP.39

One study explicitly studied interpersonal barriers,39 finding a range of relationship concerns. Poor family relationships were reported as a barrier for some. Not wanting family involved, or not wanting to burden family members was also a consideration.14 Difficulty conversing with family about ACP and the need for assistance to achieve these conversations was raised. Conversely, studies also identified family members not willing to support GPs in discussion about ACP with patients.32 44

Patient preference for informality, choosing to discuss end of life matters privately within the family was more common in more educated people and resulted in lack of formal documentation in the medical record.13

Barriers at a provider level

A number of studies focused on barriers to ACP at a provider level, with largely consistent findings, echoing those of the previously reported systematic reviews. GP lack of knowledge, skills and confidence in relation to ACP were most frequently cited. See table 3. Lack of GP knowledge was detailed in a number of studies variously outlining knowledge gaps relating to patient competence, legal considerations, documentation and processes.53 Time pressure to keep up with busy consultation schedules limited GP’s ability and willingness to initiate time consuming ACP discussions during consultations.

GP reluctance to engage patients in ACP discussions due to the complexity of diagnoses,54 55 doubting an individual’s ability to comprehend the issues involved was identified. GPs questioned the efficacy of ACP particularly about application at end of life, and one study described paternalistic views including a sense that the GP knew what the patient would prefer, so ACP was unnecessary.56

Barriers at a system level

System level barriers to ACP were commonly considered in the available literature. Common system level concerns included, for example, the suitability of ACP templates45 57; or uncertainty about the efficacy of one information kit versus another.53 Lack of consensus about what information was required in a written ACP including the relative importance of value statements, contributed to a lack of clarity.45 Difficulties associated with poor system linkages resulting in lack of availability of ACP at point of care were highlighted.58 Barriers associated with uptake of electronic medical record reminder prompts were identified.59 Context specific issues were described, for example, lack of suitable funding mechanisms was problematic in some jurisdictions.56 60 One study suggested that because there was no performance monitoring of providers’ ACP activity it was not important. If it was not measured at a system level—it was thought to be not important to the system outcomes.46 This lack of a reporting for providers was described as a barrier as there was no incentive to drive ACP activity.46

A recurrent barrier to ACP across the levels of influence was a lack of shared understanding by providers and patients about whose roles is was to initiate ACP discussions and when ACP was best initiated. Studies report conflicting views. A study by Tierney et al 51 sought to explore the perceived barrier about who (patient or provider) should initiate an ACP discussion identifying many arguments in support of broad ranging views.51 The following studies highlight widely contrasting views.

In a study reported by Emanuel et al 50 lack of physician initiative was the most frequently cited barrier to ACP according to patients.50 Physician reluctance to initiate the ACP discussion was compounded by patient expectation that it was the physician’s responsibility to do so,50 and this is somewhat consistent with findings in a (2015) UK study where 60% of respondents would only talk about ACP if the topic was raised with them.41 In other instances, patients were reported to have raised the issue themselves.61 A Canadian study found patients preferred to initiate the discussion themselves and often did so with family or friends in preference to their family physician.42

In contrast, Pfeifer et al 62 found physicians accepted responsibility to initiate discussions but retained a level of concern about the right time to do so,62 and this despite evidence that counselling by a clinician was the best catalyst for the completion of advance directives.59 In a UK study, for a patient, the most important predictor of having completed an ACP was having been asked.41 GP reported barriers to initiating ACP discussions included concern for causing the patient distress or triggering unwanted negative responses61 62; however, at least one study demonstrated significant improvement in patient satisfaction in primary care consultations when physicians initiated discussion about advance care directives. De Vleminck et al found GPs deliberated about actively initiating versus passively waiting to discuss ACP and this varied qualitatively according to GP knowledge, experience and communication skills.63

Other studies suggested there was a need to encourage more health professional involvement in ACP.56 Nurse care coordinators have been found to be well positioned to leverage opportunities to discuss ACP with patients in primary care,14 51 64 but Fletcher et al 58 explored the role of nurses and identified the majority of nurse participants looked to the doctor for leadership in ACP (p426) and pointed to lack of role clarity in this regard across providers generally.58

Studies described uncertainty about optimal timing for initiating ACP discussions.62 An emerging consensus was ACP discussion should occur in the community—prior to hospitalisation and before critical situations.48 60 Concepts about timing varied from routine inclusion of ACP discussion for all patients65; when illness became predominant65; to passively waiting for the patient to raise the topic directly or listening for patient triggers during consultation as a signal of readiness to participate in conversation.63

Barriers were often not considered in relation to their effect on each other. Some barriers were specific and applicable to a particular study modality. For example—studies requiring patients to receive an electronic message relied on the person being able to access the technology. An inability to do so would be reported as a barrier, the barrier being specific and limited to the mechanics of the particular intervention. Other barriers were more complex and multifaceted. In general, lack of patient and provider understanding of roles, lack of knowledge; lack of provider skills and experience; patient, family and provider attitudes, and system issues related to time pressure, documentation challenges and mechanisms of information sharing.

Enablers at an individual level

Studies explicitly outlining ACP enablers at an individual level were not common in the general practice literature. Understanding demographic profiles was suggested as an enabler by a number of studies in which people of an older age group were reported as most likely to engage in ACP discussions,41 66 67 and expanded by one study which reported people of all ages desired ACP discussion.50 Studies reported individuals initiating ACP discussion helped overcome GP reluctance to engage in the topic,63 and suggested that individuals should be encouraged to raise the subject68; however, the concept of individual autonomy and empowerment was largely silent in general practice literature.

Studies reported people with higher levels of education were more likely to have engaged in ACP,13 67 and tailoring ACP discussion and resources to an individual’s literacy level was effective.45 A number of studies reported the need for individuals to access education through public awareness raising activities.31 56 69 One randomised control trial (RCT) tested approaches to patient education and reported mixed results and ongoing challenges so while potentially useful, was not a panacea.70

An alternative approach described an individual’s readiness to engage in ACP viewed from the trans- theoretical stages of change approach.39 71 Described as an iterative process ACP was framed as a behaviour change process which involved the individual through discrete steps.34 43 Determining the individual’s readiness to engage prior to initiating ACP discussions was described as an important step.39 47 71

Studies considered if there was an optimal time to initiate ACP discussions referring to time in relation to disease timelines as opposed to chronological time—for example, during first consultation, at diagnosis, in advance disease stages or at end of life. A range of findings included at first appointment,67 while individuals were healthy,13 planting the seed for future discussions,61 and when chronically or terminally ill.69 In a binary relation, the anxiety of not knowing the best timing was a barrier so understanding the best timing would by contrast, provide clarity and be enabling.

Enablers at an interpersonal level

Studies explicitly focused on ACP enablers at an interpersonal level were least common in the general practice literature though the importance of relational aspects of ACP was evident. The majority of studies identifying interpersonal enablers referred specifically to the importance of the doctor–patient relationship. Enabling factors within this relationship were longevity of the association and high level of trust.14 42 48 49 61 62 64 67 72 A more recent trend is evidenced in the literature with five studies published since 2016 detailing the role of nurse–patient communication as an enabling factor in uptake of ACP. Other studies found individuals with lived experience of caring for someone else at end of life, or experience with ACP had increased uptake of ACP,47 58 and this also included GPs with personal experience of ACP.31 Two studies reported the process of discussion and reflection of values over multiple visits as enabling ACP to be most effective,14 34 supported by similar findings from others.43 57 64 65

Other interpersonal enablers involved participation in facilitated discussions in group settings where group dynamics and the ability to socialise were identified as effective levers.66 73 One study reported the value of socialisation around ACP discussion in group settings,66 and another described value in ‘learning from the experience and perspectives of others’ (p127).73

Enablers at a provider level

A number of suggested enablers at the provider level were inter-related. Strong communication skills, confidence, knowledge and positive GP attitudes were described as enablers and achieving this was variously described through provider education and training, skills development, deliberative discussion and the clarification of GP attitudes and roles. The emerging role of the broader healthcare team, with a particular focus on extended roles of the practice nurse was evident in most recent publications.14 64 72 74

A number of studies reported recommendations in support of provider training. Within these, the focus of studies varied with training recommendations ranging from the specific to the broad including legal considerations,75 professional mentorship and observed practice for providers engaged in ACP,46 60 communication skill training65 76 and professional development training about ACP.69 One study reported the efficacy of provider training which was reported to increase GP knowledge and confidence.77 Positive GP attitude to ACP was shown to increased engagement in ACP discussion.46 50 52 63

Enablers at a system level

Many studies included in the review were focused on describing and/or testing enablers at a system level. Among these, the most frequent recommendation was establishing various business as usual approaches to ACP seeking to normalise ACP in practice. Concepts ranged from a general theme,46 49 to including and specifically targeting all patients of a certain age13; to others describing monthly purpose specific clinics66; reminders in the medical record,59 and provision of ACP resources to patients and providers through portals in an automated way.54

Systematic prompting of patients and providers with technology reminders and information was found to have some effect. Studies explored timing the prompts preconsultation with mail out,46 during consultations as screen prompts for providers,59 and simultaneous prompts for both consumer and provider.46 68 Studies reported variable degrees of success.46 59 64 68 and those studies implementing a combination of approaches reported greater uptake of ACP than single step processes.68

The importance of ACP resources including templates and standardised documentation was a recurrent theme.61 A number of studies recommended the need for standardised and improved ACP templates and tools to support discussion in general practice,57 with testing and development of tools and fit for purpose approaches for target populations. This included one study with findings about efficacy of an ACP template designed for people with low health literacy,45 another study developed and tested a tool to assess stage of change71 and a study that found personalised ACPs increased uptake.70

Since 1992 when researchers noted the majority of participating physicians had never seen, used or discussed ACP with any patient,69 there have been many published studies internationally indicating growing physician support for ACP. More recently, most GPs felt ACP was important,61 citing ACP attributes as safe guarding patient autonomy and conferring peace of mind for the individual and the family.78 Positive GP attitudes are a known enabler. Practice nurses also reported ACP as beneficial to patients and understood a potential role for nurses in this context.14 60 Positive attitudes have also been reported in the community with one study describing a majority of patients and healthy people considering ACP as ‘meaningful and important’ (p1583).40

Leveraging enablers alone was not shown to be sufficient to systematically improve ACP. Many enablers were understood to share direct binary relationships with barriers and were described in the context of overcoming particular barriers. For example, if the barrier was lack of knowledge, the enabler was provision of education. If the barrier was lack of knowledge combined with an entrenched or cynical attitude, education alone would be ineffective. In considering the range of barriers, a number of studies explored a range of complex interventions and alternative models of care with a focus on changes to practice processes that enabled alternative ways of working, for example, by role delineation and delegation of responsibility. Alternative models of care were found to be complex enablers with implications across multiple levels of socioecological perspective. Examples included exploring attitudes to nurse led clinics,60 conducting group appointments66 73 79 and trialling ACP facilitators in practice.49

This section has catalogued a number of known enablers described across multiple contexts and each nuanced to the study environment. An overall observation in considering the body of literature was the need for flexible and place-based responsiveness in the design of interventions. Not understanding the range of barriers at play was understood to limit effectiveness of enablers. One size did not fit all and a single approach was unlikely to work for all.36