Using a population-based sample of 1,548 adults aged 58 and older in Switzerland, this study investigates the association between individuals’ experiences with end-of-life care support to relatives and end-of-life health literacy. The findings demonstrate a positive association, suggesting that personal caregiving experience is associated with higher end-of-life health literacy. More precisely, individuals who either made medical decisions for someone at the end of their life, accompanied a relative or friend or provided care to someone at the end of life had higher end-of-life health literacy scores compared to those who did not. Understanding the association between personal caregiving and increased end-of-life health literacy suggests the potential for targeted interventions.

Health literacy is crucial for enhancing autonomy and satisfaction in healthcare, particularly for the aging population at risk of chronic diseases, as it influences their understanding of health challenges, communication with healthcare providers, and capacity to make informed, autonomous medical decisions outcomes [20, 41]. When considering the involvement of caregivers in making healthcare decisions, managing complex medical treatments at home, and engaging in health information exchange, it seems critical to evaluate their health literacy to ensure the best health outcomes for those they care for. Previous studies showed that low health literacy in caregivers was associated with several outcomes: poorer self-management behaviors in care recipients, increased usage of health services by care recipients, and a heightened sense of burden on the caregivers [36]. Having adequate health literacy skills is essential for caregivers, particularly in end-of-life care, yet the process by which they develop these necessary skills in such a complex setting remains uncertain.

Caregivers often seek various types of information, including details about the patient’s illness, its progression and prognosis, available treatment options, and potential symptoms and side effects [42]. To obtain this information, caregivers engage in experiential learning, acquiring skills through various methods: experimenting and learning from mistakes, actively seeking necessary information and advice, applying knowledge and skills from previous experiences, and reflecting on their current experiences [43]. In a previous study, three primary areas of learning were identified: understanding the illness and its progression, mastering the skills required for caregiving, and learning how to seek and access necessary assistance [44]. These learning experiences align with the ones measured in our study, for instance, making medical decisions often requires caregivers to interact with healthcare providers and understand complex medical information, which can enhance their ability to navigate the healthcare system and communicate effectively. Managing treatments at home may involve hands-on experience with medical procedures, medications, and symptom management, which fosters a deeper understanding of care processes. Additionally, providing emotional support helps caregivers develop the skills needed to facilitate difficult conversations about care preferences, prognosis, and end-of-life wishes. These diverse experiences allow caregivers to acquire and strengthen the competencies needed for informed decision-making and engagement in end-of-life planning, which may explain the observed associations with increased end-of-life health literacy. However, even though the learning process of caregivers remains self-driven by discovery and experiences, they typically prefer and appreciate a learning approach that is supported or guided, involving instructions or demonstrations by healthcare professionals [43]. It underscores the importance of supporting caregivers with structured guidance and resources to enhance their ability to navigate the complexities of end-of-life care effectively, ultimately enriching their caregiving experience and the quality of care they provide.

The findings of the present study support the hypothesis that caregivers, through their experience in caring for others, may be more likely to have higher end-of-life health literacy. Similarly, a recent study.

shows that individuals who had previous involvement in making medical decisions for a relative were significantly more likely to engage in their own advance care planning conversations with family members [35]. This relationship was mediated by their knowledge of their relative’s end-of-life treatment preferences [35]. This suggests that caregiving experiences can facilitate better understanding and communication about end-of-life issues, reinforcing the idea that these experiences may enhance end-of-life health literacy. Caregivers who have navigated these complex decisions may be better equipped to anticipate and engage in similar discussions for themselves, which supports the hypothesis that caregiving experiences are linked to higher levels of end-of-life health literacy. Therefore, targeted interventions could utilize insights from caregivers’ experiences to enhance communication strategies specifically aimed at both family caregivers and healthcare professionals.

For family caregivers, these strategies could focus on providing them with the tools and knowledge to communicate more effectively with healthcare providers, express their needs and preferences, and navigate end-of-life care decisions. One intervention could be, for instance, to invite caregivers to participate in a training. As an example of effective interventions, the Scottish Partnership for Palliative Care offers a free course called End of Life Aid Skills for Everyone (EASE) [45]. This course helps members of the public support those dealing with death, dying, and bereavement by building confidence and addressing the emotional and practical challenges of end-of-life care. Available in both face-to-face and online formats, EASE promotes learning through group discussions, short films, and peer support activities. Similarly, the “Last Aid” course is an international public education initiative, often described as “first aid for end-of-life” [46]. Developed in Germany and now offered in 23 countries equips participants with essential knowledge and skills to support loved ones through the dying process. It covers topics such as palliative care, pain management, emotional support, and discussions about death, aiming to reduce fear and increase confidence in providing end-of-life care. Both courses demonstrate how public education can enhance end-of-life care support by improving communication and practical caregiving skills.

For healthcare professionals, interventions could center on improving their ability to engage caregivers in meaningful, compassionate conversations about end-of-life options and planning. For instance, The DöBra cards, a tool designed to facilitate conversations about end-of-life care, offer healthcare professionals a practical method to initiate and guide discussions with older adults. By using these cards, professionals can “break the ice” on sensitive topics, helping individuals reflect on their values and preferences for end-of-life care [47]. By fostering better communication, these interventions could spark broader interest in end-of-life issues among the general population, encouraging individuals to proactively seek information and prepare for potential caregiving roles. Recognizing that many individuals may eventually become caregivers themselves, facing complex decisions on behalf of their relatives, these interventions could motivate them to enhance their understanding of end-of-life care early on. Moreover, as caregivers accumulate experience in caring for others, new interventions could capitalize on their skills and encourage them to consider engaging in their own end-of-life planning. Additionally, future research should monitor changes in end-of-life health literacy over time through longitudinal studies and investigate whether experiences in providing end-of-life care to relatives serve as a catalyst for developing end-of-life health literacy skills.

Our study recognizes several limitations. Firstly, subjective measures like the S-EOL-HLS, while widely used, are prone to reporting biases as participants’ familiarity with end-of-life issues might lead to underestimating or exaggerating their skills. Secondly, the S-EOL-HLS covers only some aspects of end-of-life health literacy skills, suggesting there might be more to explore to fully understand the scope and applicability of the data. Also, while SHARE aims to accurately represent Switzerland’s older population, issues such as attrition in longitudinal studies and item nonresponse could affect our results. Nevertheless, the robust response rate in the Swiss questionnaire and the absence of any critical tendency when regressing on the covariates the participants excluded due to missing values in the variables used in the analysis lend some confidence to our conclusions. Finally, the cross-sectional design of this study restricts our ability to draw causal conclusions, calling for further research. It is also important to acknowledge that individuals with higher end-of-life health literacy may be more likely to engage in end-of-life situations, rather than caregiving experiences necessarily leading to increased end-of-life health literacy. Therefore, while our findings highlight an association, they do not confirm causation. Future longitudinal research is needed to explore whether caregiving experiences actively contribute to the development of end-of-life health literacy or if individuals with higher end-of-life health literacy are more predisposed to take on caregiving roles and engage in end-of-life planning.