Skip to main content
Download PDF

Public perceptions of advance care planning (ACP) from an international perspective: a scoping review

BMC Palliative Care volume 22, Article number: 107 (2023) Cite this article

Abstract

Background

Advance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations.

Objectives

To explore public perceptions of ACP to inform increased public engagement and empowerment.

Methods

Joanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus.

Results

Of 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences.

Conclusions

Studies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.

Peer Review reports

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
Full size table

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
figure 1

Ovid search details

Full size image

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
figure 2

PRISMA 2020 flow diagram

Full size image
Table 2 Overview of nine systematic, scoping, and rapid reviews
Full size table
Table 3 Overview of 11 primary and secondary data analysis studies
Full size table

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
Full size table
Table 5 Summary of key findings from 11 primary and secondary data analysis articles
Full size table

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.

Availability of data and materials

Original data is available upon reasonable request from the corresponding author: Dr Anne Canny.

Abbreviations

ACD:

Advance care directive

ACP:

Advance/anticipatory care planning

CPR:

Cardiopulmonary resuscitation

PCC:

Population, Concept, Context

POLST:

Physician orders for life sustaining treatment

References

  1. Brinkman-Stoppelenburg A, Rietjens J, Vander HA. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25.

    Article  PubMed  Google Scholar 

  2. Jimenez G, Tan WS, Virk AK, Low CK, Car J, Ho AHY. Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. J Pain Symptom Manage. 2018;56(3):436-459.e25.

    Article  PubMed  Google Scholar 

  3. Rietjens JAC, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017;18(9):e543–51.

    Article  PubMed  Google Scholar 

  4. Zwakman M, Jabbarian LJ, van Delden JJM, van der Heide A, Korfage IJ, Pollock K, et al. Advance care planning: a systematic review about experiences of patients with a life-threatening or life-limiting illness. Palliat Med. 2018;32(8):1305–21.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  5. Back A, Tulsky JA, Arnold RM. Communication skills in the age of COVID-19. Ann Intern Med. 2020;172(11):759–60.

    Article  PubMed  Google Scholar 

  6. Johnson H, Brighton L, Clark J, Al E. A rapid virtual stakeholder consultation with people affected by serious illness in England. 2020. Available from: https://kclpure.kcl.ac.uk/portal/files/130918874/PPI_COVID_REPORT_PC_25.06.2020_final.pdf%23page=2

  7. Selman L, Lapwood S, Jones N, Pocock L, Anderson R, Pilbeam C, et al. What enables or hinders people in the community to make or update advance care plans in the context of Covid-19, and how can those working in health and social care best support this process? CEBM Res Oxford. 2020;1–62.

  8. Iacobucci G. Covid-19: don’t apply advance care plans to groups of people, doctors’ leaders warn. BMJ. 2020;369:m1419.

    Article  PubMed  Google Scholar 

  9. Sudore RL, Hickman SE, Walling AM. Controversies about advance care planning. JAMA. 2022;327(7):685.

    Article  PubMed  Google Scholar 

  10. Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA. 2021;326(16):1575–6.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Grant M, Back A, Dettmar N. Public perceptions of advance care planning, palliative care, and hospice: a scoping review. J Palliat Med. 2021;24(1):46–52.

    Article  PubMed  Google Scholar 

  12. Peterson J, Pearce PF, Ferguson LA, Langford CA. Understanding scoping reviews: definition, purpose, and process. J Am Acad Nurse Pract. 2017;29(1):12–6.

    Article  Google Scholar 

  13. Aromataris E, Munn Z (Eds). JBI manual for evidence synthesis. Available from hesismanual.jbi.global. 2020.

  14. Arksey H, O’Malley L. Scoping studies: Towards a methodological framework. Int J Soc Res Methodol Theory Pract. 2005;8(1):19–32.

    Article  Google Scholar 

  15. Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5(1):69–69.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Veritas Health Innovation Melbourne Australia. Covidence systematic review software. 2021. Available from: https://www.covidence.org/. [cited 2021 Jun 16]

  17. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann Intern Med. 2018;169(7):467–73.

    Article  PubMed  Google Scholar 

  18. Moher D, Altman DG, Liberati A, Tetzlaff J. PRISMA Statement. Epidemiology. 2011;22(1):128.

    Article  PubMed  Google Scholar 

  19. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71–n71.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS ONE. 2015;10(2):1–15.

    Article  Google Scholar 

  21. Jabbarian LJ, Zwakman M, Van Der Heide A, Kars MC, Janssen DJA, Van Delden JJ, et al. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices. Thorax. 2018;73(3):222–30.

    Article  PubMed  Google Scholar 

  22. Wendrich-van Dael A, Bunn F, Lynch J, Pivodic L, Van den Block L, Goodman C. Advance care planning for people living with dementia: an umbrella review of effectiveness and experiences. Int J Nurs Stud. 2020;107:103576.

    Article  PubMed  Google Scholar 

  23. Macleod A, Nair D, Ilbahar E, Sellars M, Nolte L. Identifying barriers and facilitators to implementing advance care planning in prisons: a rapid literature review. Heal justice. 2020;8(1):22.

    Article  Google Scholar 

  24. Dixon K, Ferris R, Kuhn I, Spathis A, Barclay S. Gypsy, Traveller and Roma experiences, views and needs in palliative and end of life care: a systematic literature review and narrative synthesis. BMJ Support Palliat Care. 2021;0:1–10.

    Google Scholar 

  25. McLennan V, Boddy J, Daly M. Relinquishing or taking control? Community perspectives on barriers and opportunities in advance care planning. Aust Health Rev. 2015;39(5):528–32.

    Article  PubMed  Google Scholar 

  26. Teixeira AA, Hanvey L, Tayler C, Barwich D, Baxter S, Heyland DK, et al. What do Canadians think of advanced care planning? Findings from an online opinion poll. BMJ Support Palliat Care. 2015;5(1):40–7.

    Article  PubMed  Google Scholar 

  27. Cardona M, Lewis E, Shanmugam S, Nicholson M, Williamson M, Hanly L, et al. Dissonance on perceptions of end-of-life needs between health-care providers and members of the public: quantitative cross-sectional surveys. Australas J Ageing. 2019;38(3):e75-84.

    Article  PubMed  Google Scholar 

  28. Lum HD, Jordan SR, Brungardt A, Ayele R, Katz M, Miyasaki JM, et al. Framing advance care planning in Parkinson disease: patient and care partner perspectives. Neurology. 2019;92(22):E2571–9.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Im J, Mak S, Upshur R, Steinberg L, Kuluski K. “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study. BMC Palliat Care. 2019;18(1):113.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Flieger SP, Chui K, Koch-Weser S. Lack of awareness and common misconceptions about palliative care among adults: Insights from a national survey. J Gen Intern Med. 2020;35(7):2059–64.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Bernard C, Tan A, Slaven M, Elston D, Heyland DK, Howard M. Exploring patient-reported barriers to advance care planning in family practice. BMC Fam Pract. 2020;21(1):1–9.

    Article  Google Scholar 

  32. Kye SY, Han KT, Choi J, Jho HJ, Park SJ, Song IG, et al. Associations between the intention to use early palliative care, sources of information, and attitudes toward a good death in Korean adults. J Pain Symptom Manage. 2020;60(3):503–11.

    Article  PubMed  Google Scholar 

  33. Landa A. What is the public opinion of advance care planning within the Punjabi Sikh community. Indian J Palliat Care. 2020;26(4):411–4.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Jerwood J, Ward G, Phimister D, Holliday N, Coad J. Lean in, don’t step back: the views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care. Prog Palliat Care. 2021;29(5):255–63. https://doi.org/10.1080/09699260.2021.1887589.

    Article  Google Scholar 

  35. McIlfatrick S, Slater P, Bamidele O, Muldrew D, Beck E, Hasson F. It’s almost superstition: If I don’t think about it, it won’t happen. A sequential mixed methods study. Palliat Med: Public knowledge and attitudes towards advance care planning; 2021. p. 1–10.

    Google Scholar 

  36. Braun V, Clarke V. What can “thematic analysis” offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9(1):26152.

    Article  PubMed  Google Scholar 

  37. Curtis JR. Three stories about the value of advance care planning. JAMA. 2021;326(21):2133–4.

    Article  PubMed  Google Scholar 

  38. El-Jawahri A, Greer JA, Pirl WF, Park ER, Jackson VA, Back AL, et al. Effects of early integrated palliative care on caregivers of patients with lung and gastrointestinal cancer: a randomized clinical trial. Oncol (Dayton, Ohio). 2017;22(12):1528–34.

    Google Scholar 

  39. Nipp RD, El-Jawahri A, Traeger L, Jacobs JM, Gallagher ER, Park ER, et al. Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial. Palliat Med. 2018;32(4):757–66.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Kermel-Schiffman I, Werner P. Knowledge regarding advance care planning: a systematic review. Arch Gerontol Geriatr. 2017;73:133–42.

    Article  PubMed  Google Scholar 

  41. Siden EG, Carter RZ, Barwich D, Hassan E. Part of the solution: a survey of community organisation perspectives on barriers and facilitating actions to advance care planning in British Columbia. Canada Health Expect. 2022;25(1):345–54.

    Article  PubMed  Google Scholar 

  42. Slyer JT, Archibald E, Moyo F, Truglio-Londrigan M. Advance care planning and anticipatory decision making in patients with Alzheimer disease. Nurse Pract. 2018;43(6):23–31.

    Article  PubMed  Google Scholar 

  43. Wilson E, Caswell G, Turner N, Pollock K. Talking about death and dying: Findings from deliberative discussion groups with members of the public. Mortality2022 11;1–17 Available from: https://doi.org/10.1080/13576275.2022.2136515

  44. Seymour J. The impact of public health awareness campaigns on the awareness and quality of palliative care. J Palliat Med. 2018;21(S1):S30-6.

    Article  PubMed  Google Scholar 

  45. Kavalieratos D, Ernecoff NC, Keim-Malpass J, Degenholtz HB. Knowledge, attitudes, and preferences of healthy young adults regarding advance care planning: A focus group study of university students in Pittsburgh, USA Health behavior, health promotion and society. BMC Public Health. 2015;15(1):197.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Seymour JE, French J, Richardson E. Dying matters: let’s talk about it. BMJ. 2010;341(7774):1953–2648.

    Google Scholar 

  47. Graham-Wisener L, Nelson A, Byrne A, et al. Understanding public attitudes to death talk and advance care planning in Northern Ireland using health behaviour change theory: a qualitative study. BMC Public Health. 2022;22:906. https://doi.org/10.1186/s12889-022-13319-1.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  48. Combes S, Gillett K, Norton C, Nicholson CJ. The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning. Palliat Med. 2021;35(6):1137–47.

    Article  PubMed  PubMed Central  Google Scholar 

  49. NHS Inform Scotland. Adults with incapacity 2022. Available from: https://www.nhsinform.scot/care-support-and-rights/palliative-care/planning-for-the-future/legal-and-practical-issues#adults-with-incapacity. [cited 2022 Nov 30].

  50. NHS Wales. Advance and future care plans. 2022. Available from: https://collaborative.nhs.wales/programmes/national-palliative-and-end-of-life-care-programme/advance-and-future-care-plans/. [cited 2022 Nov 30].

  51. Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Report of the lancet commission on the value of death: bringing death back into life. Lancet  (British Ed). 2022;399(10327):837–84.

    Google Scholar 

  52. Moody SY. “Advance” Care Planning Reenvisioned. J Am Geriatr Soc. 2021;69(2):330.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Authors wish to thank Marshall Dozier, our library specialist who was very generous with her time in guiding the search strategy. Thanks are also extended to our valuable steering group and PPI members for contributing to emerging themes, theme refinement and their offers of additional articles relative to the research.

Funding

This study was funded by Marie Curie UK, grant ID MC-19–909. The funder had no role in the study design, data collection, analysis, interpretation or publication decisions.

Author information

Authors and Affiliations

  1. University of Edinburgh, Edinburgh, UK

    Anne Canny, Bruce Mason & Kirsty Boyd

Authors
  1. Anne Canny
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Bruce Mason
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Kirsty Boyd
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

KB conceived the study. AC developed the search strategy and conducted the literature search. AC and BM extracted and screened articles. All authors reviewed the analysis process and were involved in writing the manuscript. All authors approved the final version of the manuscript.

Corresponding author

Correspondence to Anne Canny.

Ethics declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

All authors declare that they have no other competing interests.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Canny, A., Mason, B. & Boyd, K. Public perceptions of advance care planning (ACP) from an international perspective: a scoping review. BMC Palliat Care 22, 107 (2023). https://doi.org/10.1186/s12904-023-01230-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1186/s12904-023-01230-4

Keywords

BMC Palliative Care

ISSN: 1472-684X

Contact us