Background

Advance care planning (ACP) supports people of all ages with serious illnesses, deteriorating health from one or more long term condition or frailty in older age to think ahead and plan for what might happen [1]. Conversations between people and their clinicians or other care staff are central to ACP and often involve those close to the person [1, 2]. Talking about goals and values helps people prepare for decision making in the future. Preferences and recommendations for treatment and care can then be documented, shared and reviewed, as appropriate [3]. Assessment of ACP processes and outcomes evaluation are complex, but it is clear that uptake remains low despite evidence of benefits [4]. In the UK, Covid-19 placed extraordinary demands on healthcare services leading to prioritisation of aspects of ACP relating to hospital admission and cardiopulmonary resuscitation. However, some care planning practices led to public complaints, professional concerns and reduced support for ACP due to impersonal processes, insensitive communication, and poor public engagement [5,6,7,8]. Advance care planning continues to evolve internationally with calls for a broader approach that is more relevant and meaningful for people, families and wider society [9]. ACP processes should not over-emphasise documentation of end-of-life wishes that may evolve over time but rather accept inherent uncertainties around dying. Effective public engagement with ACP depends on understanding how people from diverse communities view planning ahead for changes in their health, and what information and support would be of most help to them [2].

Current debates around future directions for ACP in the USA and internationally concentrate on professional and policy perspectives [10]. Although ACP research includes patient and public perceptions, more attention needs to be paid to them in future ACP developments. Two recent reviews from 2020 provided valuable data which help explain some aspects of public perceptions of ACP. Grant et al., evaluated ACP alongside public views of hospice and palliative care, but their review was limited to studies from the USA and mostly comprised population based surveys [11]. Selman et al., conducted a rapid review of ACP evidence up to July 2020 which encompassed early Covid-19 articles [7]. Their comprehensive appraisal focused on wider aspects of ACP; individual, interpersonal, service provider, and system. We therefore designed a rapid scoping review on public perceptions of ACP. We defined ACP broadly as any type of future care planning for people with advanced illnesses, building on these two relevant reviews and including more recent articles. Our rapid scoping review aimed to synthesise peer reviewed literature that focused primarily on public perceptions of ACP with the research question: “What is the evidence to describe how members of the public perceive ACP that could inform wider public engagement and development of care planning for the future?”.

Methods

A rapid scoping review is suitable for the description of existing literature on the topic of public perceptions about advance care planning and identify the extent of existing research evidence [12]. In a complex, multidimensional area of study like ACP, a scoping review facilitates the description of diverse published literature and can enhance understanding of multiple facets of public perceptions about ACP [13]. The review followed the Joanna Briggs Institute methodology for rapid scoping reviews based on a framework by Arksey and O’Malley with additional recommendations from Levac et al [13,14,15]. This ensured transparency and rigor in a process designed to provide a focused overview of evidence on public perceptions of ACP in the UK and internationally.

Search strategy

A protocol for the search strategy and its conduct was drawn up by a project researcher (AC) in conjunction with an information specialist (MD) and piloted in January 2021. Following review by the project lead and other researcher (KB, BM) the protocol was revised. The revised search was run 16th June 2021 by a project researcher (AC).

We used the OVID platform to search Embase, MEDLINE, and APA PsycInfo. As this was a rapid scoping review, studies were limited to those written in the English language due to time constraints and a lack of translation resources. We chose 1st January 2016 to the present (at the time of the search) to enable us to focus on recent studies. Inclusion and exclusion criteria are shown in Table 1.

Table 1 Rapid scoping review public perceptions of ACP—inclusion and exclusion criteria
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The information specialist (MD) recommended a search strategy based on key words and inclusion of two additional text terms (hospice, palliative) alongside advance care planning. Anticipatory care planning is the preferred term in Scotland so was included in the search terms. Search terms were developed in line with the PCC framework (Population, Concept, Context) [13]. Concept terms searched were: advance care or anticipatory care or hospice or palliative. Context and Population terms were combined and defined as: public awareness or public perception or public opinion or social marketing. Studies could come from any country or care setting including home, care home, hospice or hospital. The search strategy, as performed on OVID, is presented in Fig. 1.

Fig. 1
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Ovid search details

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Search results were uploaded to Covidence by a project researcher (AC): an online platform that supports systematic data handling for literature reviews. [16] After checking and removal of duplicates, two researchers (AC, BM) conducted independent screening of article titles and abstracts then full text review before data extraction of relevant studies from the search results. Areas of conflict were resolved through discussions in online meetings (BM, AC). Members of the research team and project steering group were asked to suggest relevant, key articles published or in press through to June 2021. These were checked against the results and added if missing from the searches.

Study selection process

Two researchers (AC, BM) read all the full text articles and agreed final selections guided by the inclusion and exclusion criteria (Table 1) and supported by a third-party reviewer (KB). Search results are shown in Fig. 2 in line with PRISMA-ScR guidelines [17,18,19]. One researcher (AC) extracted data from the included studies to an Excel spreadsheet that collated information on year of publication, study title, authors, country of origin and study design/methodology/population. This was reviewed by the second researcher (BM) and conflicts resolved through online-meetings. (Tables 2 and 3).

Fig. 2
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PRISMA 2020 flow diagram

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Table 2 Overview of nine systematic, scoping, and rapid reviews
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Table 3 Overview of 11 primary and secondary data analysis studies
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Data analysis

We employed a simplified form of inductive coding to identify patterns in the data and aid interpretation [36]. After collating article details and content, reported themes and subthemes were categorised by the researchers (AC, BM) starting with findings from the two key review papers used to inform this study before moving on to the other review papers and finally each primary study. From these data, we generated domains covering key aspects of published research into public perceptions of advance care planning. Themes and domains were developed by a project researcher (AC) in the first instance before being reviewed by the full research team including our three Patient and Public Involvement (PPI) representatives, who are members of the public with a wide range of experiences as patients, carers and advocates.

Results

Titles and abstracts of 336 articles (after removal of 402 duplicates) were screened. From these, 60 articles were included for full text review. After full text review, 40 records were excluded as they failed to meet the inclusion criteria (n = 38) or had been included in either of the 2020 scoping reviews (n = 2) (Fig. 2 – PRISMA diagram). Under 5% of articles required collective decision making. All the papers suggested by experts from the research team and steering group that met the inclusion criteria were present in the database searches.

A total of 20 studies met our inclusion criteria. They consisted of 9 reviews: systematic review (n = 6), rapid review (n = 2) and scoping review (n = 1), primary studies (n = 10), and secondary data analysis (n = 1). The eleven primary and secondary studies encompassed more than 9,400 participants. Studies originated from Europe (n = 9), North America (n = 6), Australasia (n = 3) and Asia (n = 2). Studies represented a combination of qualitative, quantitative and mixed-methods designs. They included exploration of ACP viewpoints from disease specific cohorts, ethnic minority populations, and vulnerable groups. The included studies are listed in Tables 2 (reviews) and 3 (primary and secondary research).

Findings of this rapid review are grouped into four domains: knowledge and engagement; fear, mistrust, and avoidance; misconceptions and misinformation; and public expectations of healthcare practitioners. See Tables 4 (reviews) and 5 (primary and secondary research) for a summary of key findings from the two sets of studies.

Table 4 Summary of key findings from nine systematic, scoping and rapid review studies
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Table 5 Summary of key findings from 11 primary and secondary data analysis articles
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Knowledge and engagement

Knowledge of ACP was described as low in all the review studies with authors reporting this as a key contributing factor behind poor uptake of ACP. Participants in many of the primary research projects were unaware of ACP before participating in the research study with cited quotations such as ‘I’ve never heard of them’ or ‘I didn’t know it existed’ and ‘Where does the man in the street get this information from? A lot of people go through life and have never heard of it’. [25]. Dixon et al.reported inequitable access to palliative care services and opportunities for care planning among travelling communities and a lack of knowledge of what services were available [24]. Additionally, Jerwood et al.examined views and experiences of patients and carers with severe mental illness and incurable physical conditions; they found that all participants highlighted their own lack of knowledge of available services; ‘Actually, I don’t know what support is out there, it would be helpful for us to know, you know, what we can do is … even if it isn’t for now, so we know when we do need it’. [34]. Even with good knowledge, engagement with ACP may be poor. Grant et al. found four studies in their review reporting high public awareness of ACP where 80–90% of people were informed but just 23–32% had started an ACP process. Familiarity with ACP concepts did not necessarily translate into active participation in ACP [11].

Several studies reported that increased knowledge and engagement with ACP was associated with older age, white ethnicity, female gender, a higher educational level and income, and being a healthcare professional [2, 26, 30]. Lack of easily accessible and straightforward information seemed to exacerbate poor knowledge and understanding and limited people’s ability to engage with ACP. This was evident in findings from an Australian interview study; ‘The complexity of the form is likely to be a significant factor in preventing people from completing the formal process, particularly as support with the process is limited or difficult to access’. [25]. Having found evidence of inequities of access to ACP among informants, Selman et al.recommended provision of information and resources in other formats to help support informed decision-making about future care [7]. ‘Video decisions aids and video and web-based ACP resources are particularly valuable. An important benefit is that these kinds of resources are effective among people with limited English proficiency, poor health literacy or from otherwise disadvantaged groups. Use written resources and ACP forms which are understandable, acceptable, sensitive, honest, and reliably capture patient wishes’. [7].

One Canadian study found that although many participants reported having little knowledge of the term ACP, a substantial proportion were doing a form of ACP by having conversations or making decisions with their family and friends rather than with their doctor [26]. In their review, Selman et al.supported these inferences that some people preferred informal discussions with family members [7].

Fear, mistrust, and avoidance

In the studies reviewed, researchers frequently identified fear, mistrust and avoidance as key factors behind a lack of engagement with ACP. McLennan et al., reported that patients feared they would be ‘tempting fate’ if they became more open to ACP conversations [22]. Other studies highlighted the finding that by recording an ACP, people thought they would lose their autonomy and independence. A commonly reported concern for many of the study participants related to mistrust of ‘what someone might do’. [23, 25]. Several studies found that people believed their expressed preferences and wishes would not be carried out irrespective of having a documented ACP [23, 28]. In contrast, another study interviewed participants who said they were motivated to initiate ACP as a direct result of lacking trust in family members to make correct decisions on their behalf [31]. Mistrust was also identified in a rapid review of ACP in prisons by McLeod et al.; ‘Both prisoners and health practitioners described prisoner lack of trust in correctional health practitioners and/or saw the corrections system as barriers to engaging in ACP in prisons’. [27]. Some studies highlighted previous negative healthcare experiences among participants as a driving force behind ACP avoidance, particularly with vulnerable groups and marginalised communities [24, 34]. For instance, Jerwood et al.recorded rich patient data from those with severe mental illnesses and a terminal illness; ‘Participants’ accounts were compounded by earlier experiences of prejudice and stigmatization when trying to access healthcare services’. [34].

Many studies described ACP as being sad, depressing and too emotional or distressing for patients and families to engage with [22, 31, 33, 35]. Studies often acknowledged patients’ hesitancy in discussing or documenting future care plans. Many found participants reporting fear of the negative impact ACP might have on their family and GP and worries about being a burden, causing distress or altering family/physician dynamics [2, 4, 21, 33]. Conversely, some research cited proponents of ACP who stated that they wished to protect their close family and friends from the burden of future decision-making [11]. A study exploring ACP perceptions in patients with Parkinson disease found that some participants acknowledged the potential for future disease-related changes to their lives and their positive views of ACP led to planning trips or activities to achieve fulfilling personal goals and improved quality of life. However, a sense of hope and disavowal of future deterioration ‘prevented some patients and care partners from making concrete decisions about life-sustaining treatment or resuscitation’. [28]. One review showed that patients with dementia expressed less distress about engaging in ACP conversations than their carers who often reported finding such decision-making stressful and challenging. Reluctance to start ACP was noted to be compounded by an uncertain disease trajectory and progressive loss of capacity [22].

Misconceptions and misinformation

Many misconceptions which may hinder ACP processes were reported in these studies. For instance, terminology used by some studies conflicted with the overarching meaning and purpose of ACP found in international definitions. Grant’s review found that authors described ACP as ‘end of life planning’ in two out of four survey studies [11]. In their discussion, Grant et al. highlighted that ‘The public confuses ACP with end-of-life care’. This was noted by McIlfatrick et al.who found that members of the public often viewed ACP as ‘a last resort when all treatment had failed’ or ‘care/treatment options once a terminal illness had been diagnosed’. [35]. Similarly, Cardona et al.reported significant differences in public perceptions of an end-of-life time frame [27]. Almost half of respondents in this primary care study viewed end of life as the last days or hours before death. The authors suggested this short time-frame may have been responsible for lack of recognition of a need to discuss ACP earlier. Other misconceptions related to the age a person might begin ACP. Bernard et al.reported that people considered the process inappropriate due to perceiving that they were ‘too young’ with one of their participants noted to state: “I did not see this as necessary, it’s a bit soon. I am only 80” [31].

Even reasonable awareness of ACP may not overcome barriers if ACP processes are perceived to be difficult or are misunderstood. In two studies, public opinions of perceived ACP inaccessibility, cost, form complexity and length were viewed as significant factors in preventing participants from engaging with formal ACP [11]. A paper reporting survey data from members of the general public in 2019 found that people believed ACP conversations were merely informal rather than formally documented preferences [27]. A survey study of opinions of ACP within the Punjabi Sikh community in the UK (2020) noted misconceptions around cardiopulmonary resuscitation, intubation, ventilation and other life-support treatments; respondents believed they had no say in the decision making processes around these medical interventions [33].

Public expectations of healthcare practitioners

Several studies reported patient expectations that healthcare staff should initiate ACP conversations [7, 20, 27, 31]. However, other research found beliefs that professionals lacked the time or inclination to offer ACP, leading patients not to raise the topic of ACP with them [31]. Many participants in another study (68%) felt it was the doctor’s duty to inform them of their life expectancy if they had a chronic illness, even if they did not ask [27].

Discussion

We reviewed recent and current research reporting public perceptions of ACP to identify possible reasons for low uptake of ACP across the UK and internationally. Our findings, which are drawn from a wide range of studies with diverse groups of people in different countries and across care settings offer insights to guide conversations between clinicians, patients and families, and may inform approaches to increasing public knowledge, understanding and engagement with ACP.

Our review does not assess the quality of the included studies as scoping reviews do not undertake formal quality appraisal. It is limited to completed studies reported in English and published (either online or in paper form) at the time of the search. Grey literature was not included and the scope was kept narrow by using just three databases; this means that we may have missed some relevant reports.

Our review builds on two reviews of public perceptions of ACP from 2020. Grant et al.(scoping review) reported public opinion questionnaire findings from the USA [11]. Selman et al.(rapid review) included articles from an international perspective to July 2020 [7]. This study builds on that evidence. An emergent finding in this review was an increase in studies from diverse groups and marginalised communities including prisoners, travelling communities, as well as disease-specific studies and research among people with mental health illness.

Articles in this review encompassed a broad range of social situations, cultures and contexts, and included perspectives from different health and care systems internationally. Some people clearly did value ACP as a way of expressing their goals and preferences and sharing those with family and professionals [37,38,39]. Many studies confirmed persistent lack of knowledge, low awareness and ongoing confusion around ACP [40,41,42,43]. This included poor understanding about what ACP means, its purpose, components and processes that was compounded by limited knowledge of people’s underlying health conditions and wider health literacy problems [23,24,25, 31]. A perceived lack of access to suitable information was noted as a major contributing factor to low uptake in studies among many groups of people [23, 25, 33, 34]. Careful design of content and presentation are recommended to maximise audience attention, comprehension and engagement [11, 44]. However, as highlighted by one 2020 review, merely offering better constructed information in different formats may not address persistent barriers to active participation in ACP. Exploring how different patients, carers and the general public perceive ACP could be prioritised when refining or redesigning ACP processes and practices [45].

Emerging evidence from studies in this review indicated that mistrust of health systems and practitioners may be common among minority communities and likely requires multidimensional solutions based on finding common ground between minority communities and healthcare professionals as well as building a shared understanding of specific group needs [21, 32]. Many of the papers we reviewed recommended that this should be aligned with training for healthcare professionals who work within such communities to enhance their ability to offer culturally insightful palliative care and future care planning while respecting the values and preferences of individual families and patients [4, 21, 24, 28, 32].

A common barrier to ACP conversations reported in these studies and elsewhere is the perception that ACP is intended for people who are close to the end of their lives rather than being about future care planning more generally. It has been noted that discussions around end of life care, which is only one element of ACP, were often viewed as too difficult and emotionally distressing due to social taboos and the risks of causing family members and/or professionals distress that people still fear [46, 47]. Much research around public perceptions of ACP has focused on older people who are often seen as a priority group but we found studies where elderly people considered themselves as too young and fit for ACP [47, 48]. Perceptions of personal relevance have an important impact on people’s engagement with ACP [48]. More recently, there has been a shift in the scope of ACP to include individuals of all ages living with life-limiting conditions so that they too can be offered opportunities to become better informed about their health and care and participate actively in shared decision-making and planning ahead [44]. This is particularly important for people who lack decisional capacity due to their age or illness. ACP policy and practice in some parts of the UK now encourage this wider approach and active involvement of proxy decision-makers in personalised future care planning [49, 50]. Such initiatives may also help to normalise perceived stigma around discussing death, dying, loss and caring and lead to more open honest and constructive conversations [51].

Future care planning needs to account for the uncertain and often fluctuating nature of decision-making that occurs along the continuum of different serious illnesses, multi-morbidity and general frailty. For many people, deciding what care they may wish to have when dying was too difficult to consider, whereas decision-making in the present moment or near future was easier and more tangible [52]. An individualised, flexible, and repeatedly reviewed ACP process that supports patients and families/carers through their unique life journey would seem a more acceptable approach to future care planning. Emerging models of ACP can encompass wider personal values, goals and priorities, specific plans tailored to individual health and care situations, and recommendations for emergency treatment and care to guide professionals and proxy decision-makers.

Conclusion

This review found that patients, carers and members of the public have many misconceptions in how they perceive ACP stemming from deeply held beliefs and values and not just from a lack of knowledge or due to confusing and inaccessible information. Many studies described lack of personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Research with minority communities and marginalised groups found intensified concerns. The studies included provide valuable insights about the perceptions of members of the public that could inform current professional and societal debates internationally about the future direction of ACP. Our review indicated that prevailing approaches to ACP may not be acceptable to many people. A redesign of ACP processes seems essential and timely given the growing numbers of people living with serious illness and declining health in the UK and internationally.