Original Research••

End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland

Abstract

Introduction Population ageing, technological advancements and an increasing emphasis on patient empowerment imply that individuals are increasingly confronted with intricate end-of-life decisions. Personal end-of-life health literacy skills may help empower individuals to participate more actively in their own end-of-life decisions, including engagement in advance care planning (ACP). This study thus investigates the associations between individuals’ end-of-life health literacy and their knowledge and behaviours toward ACP among a population-based sample of adults aged 58+ years in Switzerland.

Methods We used data from 1319 respondents from Wave 8 (2019/2020) of the Survey on Health, Ageing, and Retirement in Europe. The Subjective End-of-life Health Literacy Scale (S-EOL-HLS) served as the measurement tool. Respondents’ end-of-life knowledge was assessed using test-based questions about 11 end-of-life medical situations. Behaviours toward ACP were measured by whether respondents have discussed their end-of-life wishes, completed advance directives (AD) and appointed a potential surrogate for medical decisions in case of incapacity. Associations were estimated using separate ordinary least square and probit regressions, controlling for social, health and regional characteristics.

Results Respondents with higher end-of-life health literacy tended to have better end-of-life knowledge and were more likely to have discussed their end-of-life wishes, to have completed AD and to have appointed a surrogate for medical decisions in case of incapacity. On regressing the outcomes on the three end-of-life health literacy dimensions, interactive health literacy positively correlated with end-of-life knowledge and the three behaviours toward ACP, while critical health literacy was only associated with having an AD and appointing a surrogate for medical decisions.

Conclusions Our findings suggest that end-of-life health literacy may play a significant role in individuals' level of end-of-life knowledge and their behaviour toward ACP. Thus, developing public health policies that aim at strengthening their end-of-life health literacy skills may increase individuals’ engagement in the ACP process and make ACP more effective.

What is already known on this topic

  • Individuals’ health literacy significantly impacts their behaviours toward advance care planning (ACP), yet existing research relies on general health literacy measures; thus, this study employs the Subjective End-of-life Health Literacy Scale (S-EOL-HLS) to comprehensively assess the relationship between end-of-life health literacy and ACP behaviours in older Swiss adults.

What this study adds

  • This study reinforced that higher end-of-life health literacy is correlated with better end-of-life knowledge and positive behaviours toward ACP. Those with higher end-of-life health literacy are more likely to discuss end-of-life preferences, complete AD and appoint a medical surrogate. Among three end-of-life health literacy dimensions, the interactive dimension—focused on effective communication and engagement—stands out as the most influential.

How this study might affect research, practice or policy

  • The findings underscore the need for interventions that provide tailored information and support to older adults in engaging in ACP. Solutions such as specific consultations with healthcare professionals, a national day focusing on end-of-life discussions or the introduction of a ‘Personal Healthcare Guide’ can help improve individuals’ end-of-life health literacy. Future research should explore the impacts of different demographics on end-of-life literacy and work on developing objective measures for a more comprehensive understanding. The results lay a foundation for strategies that prioritise the needs of older adults, facilitating a more dignified and respectful end-of-life process.

Introduction

Over recent decades, the need to make important end-of-life (EOL) healthcare decisions has increased drastically.1 This growth can be attributed to medical advancements that extend life, potential concerns about overtreatment and an evolving relationship between patients and healthcare providers, which now emphasises patient autonomy and self-determination in medical decisions.2 3 Furthermore, EOL decisions present their own set of challenges, often asking individuals to contemplate future hypothetical scenarios or confront current situations burdened with emotionally charged decisions. The complexity of EOL decisions arises from the acuity of the situation, the multitude of options available, uncertainties particularly concerning prognosis, a common lack of preparation and often impaired decisional capacity, whereby relevant scenarios frequently require individuals to weigh the trade-offs between quality and quantity of life.4 5 As a result, individuals may have to make challenging decisions about situations that are highly uncertain and about which they often have very little knowledge.6 7

Advance care planning (ACP) is a proactive approach involving structured discussions between healthcare professionals, (potential) patients and often their families, anticipating possible health deterioration leading to decisional incapacity.8 Its primary objective is to prepare for communication and decision-making, thereby enhancing patient well-being throughout their healthcare journey and leading to improved EOL experiences as perceived by the patient.9–11 This process often culminates in the drafting of an advance directive (AD), that is, documented decisions that encapsulate patients’ medical preferences, particularly regarding treatments they would have to accept or decline in situations where they may have become incapacitated, and information regarding the person they designated to make medical decisions for them in case of incapacity.12 These processes and documents can play a pivotal role in protecting patient autonomy, ensuring that medical interventions resonate with their personal wishes, and offering guidance to families and healthcare practitioners in challenging decision-making situations.13 Despite the potential benefits of ACP, such as enhanced patient satisfaction, greater respect for patient autonomy and care more in line with patients' wishes,14–16 there remains a noticeable lack of awareness and engagement in ACP and AD use among the general population.17–19 This gap is especially pronounced among vulnerable older adults and those with limited health literacy.20

Individuals’ behaviours toward ACP often appear to be shaped by their health literacy, which has been shown to affect their understanding of health challenges, their communication with medical professionals and their ability to make informed medical decisions.21 22 Specifically, prior research showed that limited health literacy is associated with suboptimal self-care behaviour for diabetes,23 poor health-related knowledge of chronic diseases,24 communication gaps between patients and healthcare providers when discussing EOL care,25 misunderstandings about EOL treatment options,26 an increased probability of undergoing aggressive EOL care,27 lesser engagement in ACP28 29 and fewer chances of having an AD.30 Moreover, health literacy has emerged as a pivotal factor in determining ACP engagement.31 32 While associations between health literacy and knowledge regarding ACP have been documented in existing literature,33 much of the existing research has relied on rather general health literacy measures such as the Test of Functional Health Literacy in Adults.34 These broad measures may often fail to capture important nuances related to EOL decisions, especially in emotionally charged situations of life and death, the heightened role of uncertainty and potential trade-offs between length and quality of life. Such decisions demand a deeper comprehension, given their sensitive nature. To the best of our knowledge, no studies are exploring the associations between specific EOL health literacy measures and EOL knowledge and behaviours toward ACP.

To fill this gap, the present study uses the recently validated Subjective End-of-life Health Literacy Scale (S-EOL-HLS)35 to investigate the associations between individuals’ EOL health literacy and their knowledge and behaviours toward ACP among a population-based sample of adults aged 58+ years in Switzerland. The new measure of EOL health literacy was the first instrument developed to assess the level of competencies individuals perceive in dealing with EOL care situations and decision-making. The tool was demonstrated to be a reliable and valid instrument for measuring older adults' self-perceived EOL health literacy.35 In this study, we define EOL health literacy as the capacity to obtain, process and understand basic health information and services needed to make appropriate EOL decisions. In contrast, EOL knowledge refers to an individual’s understanding of specific aspects of EOL care, such as palliative care options, legal aspects of ACP and medical interventions commonly used at the EOL. Another distinctive feature of this research is its use of the three dimensions within the S-EOL-HLS: functional, interactive and critical EOL health literacy. Designed to provide a multifaceted perspective on EOL health literacy, these dimensions allow our study to shed more light on the intricate associations between EOL health literacy and ACP, offering a comprehensive perspective absent in prior research on general health literacy and ACP.

Materials and methods

Study design and participants

We used cross-sectional data from the Wave 8 of the Survey on Health, Ageing, and Retirement in Europe (SHARE) that was collected between October 2019 and the beginning of March 2020.36 37 SHARE collects data every 2 years from targeted respondents and their partners aged 50 years and older in 28 European countries and Israel using Computer-Assisted Personal Interviewing. The internationally harmonised, questionnaire-based in-person interview collects information on individuals' health, socioeconomic status and social networks. In addition, each country can add a country-specific Paper-and-Pencil Self-Administrated questionnaire. Our analyses include respondents from Switzerland who participated in the main questionnaire and the National Paper-and-Pencil questionnaire from Wave 8 on EOL issues. Respondents consented to participate twice, when they agreed to schedule an interview and when they attended the in-person interview. SHARE samples are designed to be nationally representative of the target population of adults aged 50 years and older. However, as the Swiss sample has not been refreshed since 2011, we only include respondents aged 58 years and older in our analysis. In Switzerland, 2009 respondents participated in the main SHARE questionnaire; 94.4% also answered the National Paper-and-Pencil questionnaire (n=1896). After excluding respondents’ partners aged 50–57 years and those with missing responses on variables used in the analysis, our final analytical sample includes 1319 respondents.

Outcome variables

EOL knowledge

The Swiss Paper-and-Pencil questionnaire integrated 11 items on the likelihood of important potential EOL medical situations that the respondents had to evaluate on a 4-point scale: 1=very unlikely (0–25%), 2=rather unlikely (26%–50%), 3=rather likely (51%–75%) and 4=very likely (76%–100%). EOL medical situations refer to issues like cognitive impairment, medical treatment and place of death (see online supplemental appendix 1). Following the approach of a previous study that used the same set of EOL knowledge questions,6 we defined the accuracy of perceptions of different EOL situations using dichotomised variables: 1 indicates a correct answer, and 0 indicates an incorrect answer. The correct category for the answer was determined using results from recently published research articles. For instance, in the first EOL medical situation, respondents were asked to rate the chances of suffering from dementia at the age of 75 years. Given that the prevalence estimate for dementia is lower than 5% for individuals aged 75 years or younger,38 the correct category for the answer is 'very unlikely (0–25%)'. Further information can be found in online supplemental appendix 1. Then, the resulting initial EOL Knowledge Score that summed up all correct answers ranged from 0 to 9, as no respondents answered all questions correctly. Following the approach from Pelikan et al,39 missing values were treated as 0, and the final EOL Knowledge Score only includes respondents with no more than two missing values on the items. In total, 259 respondents (15.1%) had more than two missing values on the 11 items. The score was then standardised by dividing it by its SD (1.78) and finally ranged from 0 to 5.1. This standardisation was done to normalise the distribution and make the score more interpretable in the context of our analysis.

Behaviours toward ACP

Respondents were asked whether they had ever discussed their wishes for the end of their life with someone (0=no, 1=yes), whether they had completed a written statement about their wishes and refusals for medical treatments and care (AD/living will) (0=no, 1=yes) and whether they had appointed someone in writing to make medical decisions for them should they not be able to make those decisions for themselves (durable power of attorney, 0=no, 1=yes).

Exposure

Subjective End-of-Life Health Literacy Scale

The Swiss Paper-and-Pencil questionnaire included the items from the S-EOL-HLS,35 a novel instrument designed to measure individuals' self-perceived competencies in managing EOL care situations and decision-making. The scale was previously developed and validated, demonstrating that the S-EOL-HLS is a reliable and valid tool for measuring EOL health literacy, and offers insights into individuals' readiness to engage in EOL planning and decision-making. In the validation paper, high internal consistency and reliability for the overall instrument were highlighted, with a Cronbach’s alpha of 0.93. The validation paper also highlighted the potential of the S-EOL-HLS to identify individuals with limited EOL health literacy and guide interventions aimed at enhancing their understanding and engagement in EOL care planning.35 The instrument consists of 18 items (see online supplemental appendix 2) divided into three dimensions (1) functional EOL health literacy, where respondents have to rate their level of understanding EOL medical terms; (2) interactive EOL health literacy, which assesses respondents’ self-rated ease in defining treatment goals, in finding information on EOL planning options and in communicating about EOL issues; and (3) critical EOL health literacy, which asks respondents to indicate their self-rated competency in choosing medical treatments. Respondents evaluate each item on a 4-point Likert scale with answers ranging from ‘very easy’, ‘fairly easy’, ‘fairly difficult’, to ‘very difficult’. The items are then dichotomised with a value of ‘0’ for ‘very difficult’ and ‘fairly difficult” and a value of ‘1’ for the categories ‘very easy’ and ‘fairly easy’, allowing us to construct a score from 0 to 18. This means that a higher score indicates a greater level of EOL health literacy. Following the approach from Pelikan et al,39 missing values were treated as 0, and the final EOL Health Literacy Score was then computed for respondents with no more than two missing item values. In total, 116 respondents (6.8%) had more than two missing values on the 18 items. The score was then standardised by dividing it by its SD (4.6), resulting in a range from 0 to 3.9. To deepen the analysis, three standardised EOL health literacy subscores were calculated based on the three dimensions of the scale: functional, interactive and critical EOL health literacy.

Covariates

Our statistical models include information on sex (male, female), age (58–64 years, 65–74 years, 75+ years), education levels (low=International Standard Classification of Education (ISCED) levels 0, 1, 2; middle=ISCED levels 3–4, high=ISCED levels 5–640), partnership status (has a partner, has no partner), Switzerland’s linguistic regions (German, French or Italian), subjective financial difficulties (ability to make ends meet: easily, fairly easily and with difficulty), living area (urban, rural) and self-rated health (poor/fair health, good health, very good/excellent health).

Statistical analysis

The characteristics of the study population were described using number counts and proportions. A binned scatterplot assessed the bivariate association between standardised EOL Health Literacy and EOL Knowledge Scores. Bivariate associations between average standardised EOL Health Literacy Score and behaviours toward EOL healthcare planning were computed with bar charts. The partial association between the standardised EOL Health Literacy Score and the standardised EOL Knowledge Score was assessed using ordinary least square regressions, while the respective associations between the standardised EOL Health Literacy Scores and the three behaviours toward ACP were explored using separate probit regression models. The same statistical modelling was used when considering the three dimensions of the End-of-Life Health Literacy Scale as exposures. Each regression model controlled for sex, age, education levels, partnership status, Switzerland’s linguistic regions, subjective financial difficulties, living area and self-rated health. In addition, to account for potential unobserved dependencies between the target respondents and their partners, the error terms were clustered at the household level. All estimations used STATA/SE V.17.0 software (STATA Corporation) and results were reported as average marginal effects (AME) along with corresponding SEs clustered at the household level.

Patient and public involvement

Our research was conducted without the involvement of patients or the public in its design, execution, reporting, or dissemination strategies.

Results

Selected characteristics of the study participants are displayed in table 1. Of the 1319 participants, 680 (51.5%) were female, and the mean age was 70.6 years old (SD: 7.9). The age distribution was as follows: 352 participants (26.7%) were between 58 and 64 years, 579 (43.9%) were between 65 and 74 years and 388 (29.4%) were 75 years or older. In terms of education, 848 participants (64.3%) had a middle education level, 279 (21.1%) had a high education level and 192 (14.6%) had a low education level. Regarding partnership status, 1021 participants (77.4%) had a partner. Financially, 745 participants (56.5%) reported finding it ‘easy’ and 416 (31.5%) ‘fairly easy’ to make ends meet at the end of the month. Concerning the language region of Switzerland, 960 participants (72.8%) resided in the German-speaking parts, 316 (24%) in the French-speaking parts and 43 (3.2%) in the Italian-speaking parts. Geographically, 594 participants (45%) lived in urban settings and 725 (55%) in rural areas. For health assessment, 548 participants (41.6%) rated their health as good and 557 (42.2%) as very good or excellent. Concerning EOL healthcare planning, 878 participants (66.6%) had discussed their EOL wishes, 560 (42.5%) had completed AD and 586 (44.4%) had appointed a surrogate to make medical decisions.

Table 1
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Characteristics of the study population, adults aged 58+ years, SHARE Switzerland, 2019/2020, n=1319

The bivariate associations displayed in figure 1 describe the relationship between the standardised EOL Health Literacy Score and both the standardised EOL Knowledge Score and behaviours toward ACP. The scatterplot graph demonstrates a positive association between EOL health literacy and knowledge; a higher standardised EOL Health Literacy Score is associated with a higher standardised EOL Knowledge Score. The next three bar charts show that respondents who had discussed their EOL wishes, completed an AD, or appointed a surrogate for medical decisions consistently exhibited higher standardised EOL Health Literacy Scores.

Figure 1
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Figure 1

Average EOL Health Literacy Standardised Scores per EOL knowledge and behaviours toward ACP, adults aged 58+ years, SHARE Switzerland, 2019/2020, n=1319. Note, the first graph is a binned scatterplots of standardised EOL Health Literacy and Knowledge Scores. AD, advance directives; EOL, end-of-life; ACP, advance care planning.

Table 2 shows the partial associations between the standardised EOL Health Literacy Scores, the standardised EOL Knowledge Score and behaviours toward ACP. A one SD higher EOL Health Literacy Score is associated with an increase in the standardised EOL Knowledge Score (AME: 0.17, p<0.001), the likelihood of discussing EOL preferences (AME: 0.14, p<0.001), the completion of AD (AME: 0.13, p<0.001) and the appointment of a medical decision surrogate (AME: 0.12, p<0.001). These findings have been adjusted for several confounders, including sex, age, education levels, partnership status, subjective financial situation, linguistic region, living area and self-assessed health.

Table 2
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Partial associations between EOL knowledge and behaviours toward ACP on the standardised EOL Health Literacy Score, adults aged 58+ years, SHARE Switzerland, 2019/2020, n=1319

The partial associations between the standardised EOL Knowledge Score, behaviours toward ACP and the three standardised scores of the distinct dimensions of EOL health literacy are presented in table 3. The interactive dimension of EOL health literacy demonstrates the most consistent positive association with the exposure variables. An increase in the interactive EOL Health Literacy Score correlates with an increased standardised EOL Knowledge Score (AME: 0.17, p<0.001), a higher likelihood of engaging in EOL discussions (AME: 0.12, p<0.001), completion of AD (AME: 0.10, p<0.001) and designation of a surrogate for medical decisions (AME: 0.08, p<0.001). The critical dimension also exhibits associations, notably with the completion of AD (AME: 0.04, p<0.05) and the appointment of a surrogate (AME: 0.06, p<0.001). However, the associations related to the functional dimension are not statistically significant. All these associations have been adjusted for the same confounders as in table 2.

Table 3
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Partial associations between EOL knowledge and behaviours toward ACP on the three dimensions from the standardised EOL Health Literacy Score, adults aged 58+ years, SHARE Switzerland, 2019/2020, n=1319

Discussion

Using data of 1319 adults aged 58 years and older from Switzerland, this study explored the relationships between EOL health literacy, knowledge and behaviours toward ACP. A positive correlation emerged, indicating that individuals with higher EOL Health Literacy Scores tend to possess better knowledge about EOL medical situations and are more proactive in planning for it. Particularly, the results highlight the association between increased EOL health literacy and the likelihood of discussing EOL preferences, completing AD and appointing a surrogate for medical decisions. Among the three dimensions of EOL health literacy assessed, the interactive dimension emerged as the most associated with the four outcomes variables. On the contrary, while the critical dimension also presented some notable associations, the functional dimension showed a clear tendency for better EOL knowledge and more positive behaviours toward ACP, but the corresponding associations did not turn out to be statistically significant. The findings from this study reinforce and complement previous research that has demonstrated the importance of health literacy in influencing various behaviours toward ACP. In another study measuring death literacy, defined as individuals' skills and knowledge regarding the death system, the results showed that higher death literacy can be associated with better informed decisions regarding EOL and death care options.41 While the results go in the same direction, the death literacy index is primarily designed for group assessment and the items do not specifically address individuals' ability to navigate medical decisions at the EOL. Finally, what sets this research apart is its in-depth exploration of some aspects of the ACP process using a nuanced measure of EOL health literacy.

EOL knowledge and behaviours toward ACP

One significant obstacle to the wider adoption of AD and active engagement in ACP is a lack of knowledge to navigate the intricate landscape of EOL medical decisions.33 However, so far, only a few studies have focused on the general population and their understanding of EOL healthcare options. Studies conducted in North America using knowledge assessment tests consistently indicate a significant knowledge gap concerning EOL care options among the general public.42–44 Another study found that while most older adults in China value healthcare transparency and autonomy, there is a significant lack of awareness and preference for ACP, potentially influenced by traditional values and education levels.45 In addition, a population-based telephone survey in Hong Kong exploring behaviours and preferences of older adults regarding ACP revealed significant gaps between individuals’ preferences to communicate and make their own EOL decisions and their awareness of ACP, with many also unfamiliar with AD.46 Moreover, a study in Wales exploring public views on death and EOL care revealed the need to address societal taboos around death discussions, especially in light of the increased awareness brought about by the COVID-19 pandemic.47 Finally, a study on older adults aged 55+in Switzerland found notable misunderstandings about EOL healthcare and planning, potentially leading to suboptimal EOL decisions and limited patient participation.48 Given the clear knowledge gaps highlighted in multiple studies about EOL decisions among older adults and considering that improved EOL healthcare knowledge enhances participation in ACP49–53 and the completion of AD,54 55 tackling this lack of awareness is essential. Providing individuals with appropriate EOL health literacy skills could increase their awareness of ACP, potentially improving their knowledge of and behaviours toward ACP.

EOL health literacy and its importance for ACP

Addressing knowledge gaps in EOL healthcare and related behaviours toward ACP requires focusing on empowering individuals to take control of their EOL decisions. As highlighted in a previous study analysing health literacy and EOL healthcare preferences, to support individuals effectively, it is essential to enhance their health literacy, ensuring they are well-informed and possess the necessary skills to make informed health-related decisions.56 Two other studies supported those results, the first one showing that health literacy strongly influences knowledge, behaviours and decisions about hospice care among older adults57 and the second one that health literacy significantly influences older adults’ understanding of ACP more than their prior experience with ACP.58 Although previous studies used general health literacy measures rather than one tailored specifically to EOL situations, they underscored the significance of health literacy skills in EOL healthcare decisions. With adequate EOL health literacy skills, individuals could improve their understanding of medical terms and the different types of EOL healthcare options, reduce their emotional barriers when communicating with healthcare providers and their loved ones, and thus facilitate healthcare that aligns with their preferences.21 Therefore, as highlighted by the results from our study, individuals’ competencies for EOL decisions are crucial, as they positively correlate with EOL healthcare knowledge, discussions about EOL wishes, AD completion and the designation of a medical decision surrogate. Ultimately, enhancing EOL health literacy and increasing the adoption of ACP can foster a dignified and respectful EOL process while alleviating the decision-making burden frequently shouldered by family members and healthcare providers.

EOL health literacy dimensions

This research identifies specific dimensions of EOL health literacy that are crucial for supporting patients, their loved ones and healthcare providers in their collective aim to align EOL healthcare with patients’ values, preferences and goals. The distinct dimensions of functional, interactive and critical EOL health literacy are the first to provide an understanding of what composes the concept of EOL health literacy. The first dimension, functional EOL health literacy, measures individuals’ comprehension of common EOL medical terms.35 This dimension appeared to be the least influential, as its associations with EOL knowledge and behaviours towards ACP were not statistically significant. These non-significant results show that merely possessing the basic skills to understand EOL medical terms may be insufficient for individuals to have higher EOL knowledge and to engage in the ACP process. Although individuals might have the correct understanding of common EOL medical terms, higher skills are needed to engage in the ACP process. The second dimension, interactive EOL health literacy, evaluates respondents’ self-assessed challenges in defining treatment goals, obtaining information on EOL healthcare planning options and discussing EOL matters.35 Of all the dimensions, this one showed the most consistent associations with the outcomes of interest. Results indicated that higher scores in interactive EOL health literacy correlate with better knowledge of EOL, more discussions on the topic, higher completion rates of AD and more designation of a medical decision surrogate. These findings underscore the significance of the interactive dimension in EOL knowledge and behaviours toward ACP. It highlights the need to emphasise advanced cognitive and social skills, enabling individuals to engage in meaningful communication with healthcare providers, actively participate in ACP and gain a deeper comprehension of the dying process. In addition, it underscores that the more proactive aspects of ACP, such as seeking information and discussing EOL issues, can be challenging for some individuals. Therefore, providing them with the opportunity to initiate this process with social support could be beneficial in encouraging engagement in ACP. Lastly, the critical EOL health literacy dimension estimates respondents’ difficulties in choosing EOL medical treatments.35 Results from this dimension showed notable positive associations with both AD completion and surrogate appointment. These results from the critical dimension indicate that advanced cognitive and social skills, crucial for analysing and utilising information, are essential for individuals when translating the gathered information and informative discussions into making definitive decisions about EOL medical treatments. The results ultimately show that to complete AD and appoint a surrogate, both the interactive and the critical EOL health literacy dimensions are essential. This highlights once again that individuals need particularly high skills to achieve the decision-making part.

Practical implications and future research

Existing research has shown that limited health literacy can lead to suboptimal participation and engagement in ACP.28 29 This study emphasises the pivotal role of EOL health literacy in improving knowledge about EOL medical situations and being more proactive in planning for it. As a result, it now raises the question of how to improve individuals' EOL health literacy to ensure they have the necessary skills for engaging in ACP. In addition, when examining the distinct dimensions of the scale, the results suggest that merely providing simplified information on EOL issues seems insufficient. Instead, creating new targeted interventions to support older adults in engaging in the ACP process and strengthening their skills is necessary. Such interventions could include offering consultations with health professionals to discuss potential decisions concerning EOL medical situations. For instance, in the Netherlands, research showed that inviting older adults to information sessions about EOL healthcare led by general practitioners can positively impact individuals’ engagement in ACP.59 The authors further explained that although this approach mainly resonates with older individuals already curious about the topic, it appears to be a straightforward way to encourage ACP.59 It is also crucial to enlighten healthcare providers about the significance of assessing the health competency level of patients concerning EOL healthcare. This would enable them to tailor their communication, fostering better understanding between patients and healthcare providers. In a prospective study conducted in four palliative care units in Switzerland, the authors found that healthcare providers’ behaviours might hinder patients from discussing potential future complications or completing AD, suggesting that the approach and perspectives of healthcare providers can significantly impact patient decisions regarding EOL healthcare.60 Moreover, establishing another type of intervention for the public, such as a national day focusing on EOL issues, could serve as an excellent platform for widespread discussion, potentially equipping the general population with a deeper understanding of these intricate matters. Furthermore, when considering the significant impact that media coverage of personal ACP experiences has on health decisions,61 integrating such narratives into a national day could significantly enhance EOL health literacy among the general population. Finally, within the broader healthcare landscape, introducing a mandatory ‘Personal Healthcare Guide’ for older adults similar to vaccine booklets for children that details EOL healthcare options aligned with personal values, preferences and goals could not only bolster individual EOL planning skills but also encourage healthcare providers to initiate crucial EOL discussions, guide older adults in maintaining these records and prompt the healthcare system to prioritise the needs of the ageing population.

Future studies might expand the scope of this study and investigate the differential impact of EOL health literacy across diverse demographic groups. Given the cultural, socioeconomic and educational differences, understanding how these groups vary in their EOL health literacy can inform targeted interventions. In addition, there is a need for the development and validation of objective measures for EOL health literacy, which could offer complementary insights to subjective assessments. Also, while our study emphasised three distinct dimensions of EOL health literacy, future research might explore other facets or different breakdowns of these dimensions in the context of EOL healthcare. Moreover, as the field of EOL healthcare evolves, it is important to constantly investigate significant factors such as EOL health literacy determinants in assuring a dignified and respectful EOL process for patients, their loved ones and healthcare providers. Finally, future research should prioritise designing and rigorously evaluating interventions to enhance EOL health literacy, ensuring that new strategies are both effective and evidence-based.

Limitations

Our research acknowledges several limitations. First, despite the extensive use and convenience of subjective measures like the S-EOL-HLS, they may be subject to potential reporting biases. Depending on their familiarity with EOL issues, participants might undervalue or overstate their actual skills. Second, the S-EOL-HLS items cover only a subset of the broad spectrum of EOL health literacy skills, which can raise questions about the data’s comprehensiveness, potential bias and clinical relevance. Moreover, in measuring EOL knowledge, the use of both qualitative and quantitative labels for answer categories might have confused some participants. While some might have relied solely on one type of label when responding, others could have found the probability concepts challenging, even though such questions have been consistently used in the SHARE study. Additionally, while SHARE strives for an accurate representation of Switzerland’s older population, potential attrition, a common challenge in longitudinal studies, especially among the oldest and most frail participants, could influence our results. Challenges around sample representation might also suffer from issues such as item non-response. However, the high response rate to the Swiss questionnaire and the consistent characteristics of those excluded from our sample offer some reassurance in our findings.

Finally, the cross-sectional nature of our study limits our ability to definitively establish causality and fully address the directionality of the relationship between EOL health literacy, EOL knowledge and behaviours toward ACP. To address this, further research employing a longitudinal design is required. Additionally, regarding potential residual confounding, we recognise that there may be unmeasured variables that could influence EOL health literacy, EOL knowledge and ACP behaviours, such as cultural beliefs, personal values regarding death and dying, and previous experiences with EOL situations in a personal or familial context. Future studies should aim to identify and control for these potential confounders.

Conclusion

This study on 1319 older Swiss adults revealed a strong positive correlation between EOL health literacy, EOL knowledge and positive behaviours towards ACP. Individuals with higher EOL health literacy were more likely to discuss EOL preferences, complete AD and appoint a medical surrogate. The interactive dimension of EOL health literacy seemed to be the most influential, underscoring the importance of individuals’ cognitive and social skills to communicate effectively with healthcare providers about care preferences, engage in ACP and develop a deeper understanding of the process of dying to help them make EOL decisions. Despite the importance of ACP, barriers such as limited awareness and knowledge gaps hinder its widespread adoption. Enhancing EOL health literacy can bridge these gaps, leading to more informed decisions that respect patient autonomy and reduce burdens on families and healthcare providers. The results also highlight the need for targeted interventions such as offering older adults specific ACP consultations with healthcare professionals, improving patient-healthcare provider communication, creating a national EOL day or introducing a ‘Personal Healthcare Guide’ to bolster EOL planning and prioritise the needs of older adults. Finally, future research should explore diverse demographic impacts on EOL literacy and develop objective measures for more comprehensive insights and improved EOL patient healthcare.

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