Qualitative findings provided insights into the lived experiences of nurses from community settings while implementing ACP with patients living with palliative conditions, which helped to address the question of: ‘What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?’
Relationships, Communication and ACPs
Relationships between palliative care providers and patients, family and practitioner rapport were strong influencing factors. In palliative and end of life care, such relationships were seen as critical to good quality care provision (36), opening communicative channels in support of initiating ACPs (41). These findings share consensus with a study by Head and co (33), who further stressed the need for ACP initiation in early diagnosis for optimum palliative care. There is general agreement that the combination of built relationships, open communication and patient/family practitioner rapport positively influence ACP discussion and engagement (38, 7, 9, 61). One specific study emphasised how patients respected the nurse’s role as their advocate, and how this advocacy ensured there was joint decision making with patient autonomy (61). These positive nurse-patient relationships can indirectly influence more positive working cultures (12), seeing staff performance, satisfaction and team communications enhanced (45) as well as marked improvements to patient care experience and outcomes; enhancing person-centredness, quality care and smoother transitions (3, 45, 12)
In the analysis, nurse-patient and nurse-family relationships were recognised as an important form of support (85). Aligned with prior research, patients value the nurse role in ACP, suggesting when ACP is nurse-led, there is evidence of this being more compassionate (37, 58). In this context, patients feel the nurses can lead and facilitate deeper considerations towards what matters most to them, addressing their priorities, values and all concerns involved for ACP (37, 58).
Reported ACP tools have been recognised as better supporting ACP discussions (14, 37). Adopting the use of specific tools have been found useful in structuring discussions of this difficult topic across a variety of health professions (14, 37). Authors (37) suggests the use of decision aids promote discussions of ACP through active patient participation, engaging patients in all parts of the decision-making processes, while developing the patients overall understanding of the process too. Using such aids provide this collaboration of shared decision making between the patient and the professional. As such, this identifies the need to explore further study in support of these tools in practice.
Meanwhile, incremental discussions that ‘build-on-topics’ of ACP (i.e., exploring conversations of ACP during each contact time/visit), were viewed as effective for providing both patient and family time to consider ACP (71, 83). This approach exhibits a longer-term aim, establishing the necessary rapport required towards ACP within the patient-provider relationships (85). Once possible disadvantage of topic-building, however, stated in Östman, Bäck-Petterson and Sandvik (67) is the patients need for continuity in care. This study identified that patients often held preference over stronger more developed relationships they had with some community nurses and were reluctant to speak to other nurses. If in this instance, the patient chose to wait to have these discussions with their preferred nurse, then this may ultimately risk a delay in ACP initiation and/or conversations. Nevertheless, ‘building-on-topic’ is a known strategy to develop conversations covering ACP; as well as maintaining and/or preserving cultural-sensitivity (17). Approaching ACP in this sensitive way allows for the appropriate holistic considerations, such as that of ethnically diverse needs, spiritual needs, values and/or cultural norms (49).
While important factors to consider (20, 41), all of these were not clearly evidenced or elaborated on within this review. Recognising cultural needs and considering religion and/or ethnic influence with ACP should therefore be addressed (49, 24) and considered in the future. Future research should consider incorporating this inclusion to ensure ACP remains holistic for all, and so that the highest standard of quality palliative and end of life care can be provided (24).
Patient or Family Readiness for ACP
As indicated in studies (77, 85), assessing the ‘right time’ to initiate ACP was imperative. In their analysis, identifying the optimal time can be done through evaluating patient cues and establishing patient and/or family readiness (i.e. open conversations of death and dying). These findings were consistent with several other articles which emphasised this as pertinent to the ACP process (78, 70, 89). Articulated in this review, patients and families were often apprehensive to discuss ACP; in cases where the disease trajectory of a patient’s condition was unknown or where the patient’s palliative condition was ultimately stable (85). Although there was also clear apprehension met when there was a disjoint within the family unit (i.e., family dynamics), or situations where there was clear denial about the patient’s actual illness or disease (10, 57).
A separate literature review (14) found that people with terminal illness would often dismiss ACP topics, being unwilling to discuss future care preferences whilst well.
Unfortunately, it is known in these cases that ACP discussion is then often triggered by ill-health, or subsequent condition deterioration in the latter phases of palliative illness (15). This leaves preferences for care at risk of being unsupported, with little notice for developing these necessary plans at the end of life (15).
Family dynamics played a pertinent key in avoidance (59, 57, 83). In a study by Colville and Kennedy (14), differing views within the family unit often complicated the ACP process. Family members often overpowered patient and/or medical opinion, often causing ACP to then be perceived as too complex from professionals in respect to being met with this conflict. Considering this conflict, one study in this review (28) suggested the need to maintain confidence and educate these families about ACP benefit. Usually this would involve explaining the relevant process with emphasis that preference could always change, if these preferences remained in the best interest of the patient.
It has been recommended that ACP unwillingness should be reassessed in certain palliative conditions at risk of mental incapacity, such as dementia (83). This is supported by Harrison-Dening (31), who emphasised the need for this early intervention with risk of this condition impairing decision making due to progressive decline of cognition. In such cases, ACP can consider maintaining fundamental patient autonomy (31). Another study (81) addressed the need to move away from identifying patients fit for ‘palliative care’, with an aim for identifying patients (despite their condition or illness trajectories), for necessary and anticipated care; aligning with the necessary early intervention strategy (83). Nevertheless, if provisions of such information are ignored, patients remain central to care choices, and refusal of ACP is acknowledged and agreed (63).
The Difficult and Stigmatised Topic of ACP
Similar to Hagan and co (29), there was a clear need to weigh risks, such as causing distress or diminishing hope, by broaching the topic of ACP in a delicate manner (59, 71, 10, 57). These findings align with relevance to how ACP remains perceived as taboo and stigmatised amongst all involved (77, 73). Findings impose a clear lack of public awareness to ACP benefits (77) and this lacking awareness being largely influential to ACP avoidance from patients, families, and practitioners (44, 65).
This clear issue of public knowledge and awareness demonstrated, requires further exploration. A 4-year study conducted by Weaver and Vaughn (87) found that overcoming the perceived barriers (public awareness and ACP understanding), requires consistent contact and education with individuals. A further study (35) emphasised the nurse role of education in respect to ACP (i.e. initiating, advocating and educating), for developing this awareness amongst their patients and associated families. While mentioned to be already part of this nursing remit in advocating patient care (8, 35, 87), barriers remain. Future research would therefore be beneficial in exploring the public perceptions around ACP to identify ways where enhancing awareness and reducing this stigma associated with ACP can be addressed. This might consider developing certain ACP educational materials which could support a targeted public group.
Resource Accessibility, Team Approach and Shared Responsibility
It was evident from this review, nurses perceived that lack of resources affected how they could and would provide adequate palliative care in these community settings (77, 59, 71, 42). One study by Jimenez and co (39) supports the findings from this review. They add that limited resources (e.g., time, staffing, unprepared staff) indicate a broader lack of a healthcare system’s devotion to fulfilling ACP processes. Considerable difficultly is then faced when professionals attempt to offer services to patients with limited or restricted resources (e.g., support) and this often adds to the growing responsibilities and increasing workload challenges already faced (32). Further research in assessing workforce planning and resource accessibility for adequate palliative care and/or end of life transitions therefore is vital, so nurses can provide care that is both of preference and expectation for patients and their families.
A team approach appeared to facilitate ACP, although this finding was not consistent in the overall review and not seen as effective across all professions (59). Nurses argued to be better suited facilitating ACP in respect to medical leads (e.g., GPs), however, other studies emphasised sharing the responsibility provided more opportunities in enabling ACP (20, 28, 36, 73). Specifically, there was notable positive benefit when the sharing of tasks for both implementing and then documenting ACP would support alleviating workloads (17).
Lastly, time seen to have both complementary and contrary forces with ACP. While analysis suggests nurses having more flexibility with time (77, 47), adequate time allocation was inconsistent in this review. An external study (9) found that community nurses often faced difficulties with time allocations due to increasing workload pressures. Authors in Colville and Kennedy (17) emphasize the importance of designating time in the pursuit of difficult conversations, as these can become stretched and ultimately lengthy; so, there is value in this time allocation. In summary, applicability of these findings may not resonate across these different health care contexts; particularly if workload pressures in these community settings are as evidenced, variable.
Medical Hierarchy and Curative Cultures
As a conflict to ACP, medical hierarchy was a reported barrier. GPs were perceived to have professional responsibility of ACP (69); even though they hold restrictions with time during consultations (59). If nurses are to stand at the forefront to facilitate ACP, and actively engage in these processes, professional clarity and responsibility need to be further addressed. While there is a consensus that the doctor is often proxied to communicating ACP processes (26), this was found in contrast to other studies where nurse-led ACP was dominant (47, 41). Another study (16) confirmed this finding, suggesting nurses in their study already acted as lead ACP facilitators in similar contexts. In respect to this review, there does appear a distinct lack of agreement of who should take the lead in ACP (71), or whether this role should be in the remit of a higher profession (46).
Medical hierarchy was seen to focus on a curative culture when it came to managing patients (77, 41). Similar to other findings was a ‘culture to do everything’ possible amongst medical professionals (38, 43). While understandable that curative focused cultures opt to maintain positive mindsets for patients (43); this approach is often contrary to early ACP interventions. In this review, curative culture was linked to patient prognostic uncertainties, largely due to the difference of illness trajectories in palliative conditions (10, 83). Such uncertainty masks determining the terminal phase of an illness, and thus harbours apprehension for this view (46). However complementary to this review, focus for palliation in dementia has alternative requirements necessary to enable future end of life care needs, and/or the need to challenge the implications of such (71, 83). The reason for this being the overall and renowned positive benefit of ACP with these patient cohorts (31).
It is apparent from this review, vast uncertainty of trajectory remains amongst palliative conditions which contributes to avoidance of ACP (41, 28). Respectfully, future research should consider developing models which can rationalise palliative care for all disease trajectories, and in shifting this focus, more positive patient mindsets (which stem from the stigma associated with death and ACP) can be encouraged.
Education and Experience
Barriers to ACP implementation were associated with lack of education and experience. Nurses were reported to disengage from ACP when they the lacked knowledge, experience, and the necessary communication skills (71, 69, 42). These findings are consistent with studies by authors Brooke and Kirk (14) and Thomas, Lobo and Detering (82) who associated this barrier with an absence of specialised experience in palliative care. Further findings from authors in Colville and Kennedy (17) indicated that subject to palliative care training, nurses’ awareness of ACP was raised, skills validated, and this subsequently improved their overall confidence to broach these difficult topics of ACP in practice.
Analysis from this review revealed that nurses valued having a competent role model. Having this link provided a go-to for guidance and advice from an experienced professional (i.e. specialist palliative care); which enabled confidence (47, 73). As emphasised, previous experience and/or training in palliative care or ACP was seen to be a major contributing factor (77, 10, 73). There are, however, recognisable differences across practices, for example, nurses located in nursing homes were found to already be more confident in ACP, possibly due to their developed long-term relationships and rapport held with residents (17). Nevertheless, Authors of Robinson and co (71) found that nurses viewed themselves as continuously lacking the necessary skills for ACP regardless of having training or education in this, so considering this in view of future practice is key when evaluating the ACP with professional competency.
Strengths and Limitations of this Study
There are several strengths to this scoping review. A systematic process was used with the aim of this being replicable, transferable, and rigorous (68). This scoping review followed an iterative process, which focused on enhancing literature breadth (i.e., through consultations with expert stakeholders: Sixsmith) (24), enabling a flexible approach to capturing evidence (5). A robust review protocol was developed to conduct this review and several validated tools/frameworks were utilised (i.e., PRISMA-Scr, PAGER Framework, PRISMA Flow Diagram) to enhance the overall scoping review process. The use of these tools provided the author structured content, which optimised quality reporting processes and overall review efficiency (5, 60, 84, 11).
This review also undertook an international focus with eight international articles included as part of the final subset, making the review findings more culturally and geographically transferable. As noted, this review undertook the optional stage within the methodological framework (5) consisting of a consultation with key experts/informants in qualitative research for a scoping review methodology, which enabled a rigorous evaluation of the findings within the context of previously researched ACP practice and academia.
As per limitations, despite the systematic process used, there is always possibility of articles not being included which may hold relevance to the research aim. With this review, the search strategy was limited to the databases noted in the methods section, and there could quite possibility have been other articles proxy to other databases which were not included in this review. This review was focused on qualitative literature only and there may have been quantitative studies which could have helped broaden the interpretation and knowledge of ACP in community settings.
The search, screening and study selection of this review was undertaken by one reviewer (co-author: Wilkin), where this process is encouraged to have at least two reviewers to reduce the risk of possible selection bias (54). Although the final subset for this review was discussed and agreed with another co-author: Fang. The search was limited to studies published between 2010–2021, where studies out with this period were excluded. There was also no foreign language literature included and as such this excluded literature may have added value to the overall study.
No quality assessment was undertaken, as this is not seen as mandatory for scoping reviews, however, if quality assessment had been attempted, this may have enhanced confidence in the veracity of the review conclusions. On sourcing viable literature sources UK studies dominated and there were obvious limitations met when sourcing studies available from other international and geographical contexts, due to restrictions to the English language. As such, this exclusion means the applicability of this review in other contexts may not be as relevant.