Joel Vieira Vitorino
Beatriz Veiga Duarte
Amira Mohammed Ali
Carlos Laranjeira- 1School of Health Sciences, Polytechnic University of Leiria, Leiria, Portugal
- 2Palliative Care Unit, Portuguese Institute of Oncology of Coimbra, Coimbra, Portugal
- 3Department of Psychiatric Nursing and Mental Health, Faculty of Nursing, Alexandria University, Alexandria, Egypt
- 4Centre for Innovative Care and Health Technology (ciTechCare), Polytechnic University of Leiria, Leiria, Portugal
- 5Comprehensive Health Research Centre (CHRC), University of Évora, Évora, Portugal
Over the years, humanity has faced various global crises of different kinds that have caused great suffering in the community, such as wars, slavery, torture or the Holocaust, but also climate change, economic crises, or sanitary disasters. The recent pandemic posed a barrier to palliative and End-of-Life (EoL) care, as the need for physical distance made it difficult to retain essential human interactions while minimizing the risk of viral transmission. During the COVID-19 pandemic, the robustness of supportive networks (i.e., family, friends, neighbors, and community members) determined whether someone experienced a calm death at home or an unnecessary hospital admission, labeled as an ‘emergency’. In this vein, active establishment and strengthening of such networks are the foundation of compassionate community efforts. Firstly, providing both physical and emotional support to the entire network of caregivers enhances their ability to care for others and improves the overall experience of death, including the process of dying and the ensuing bereavement period. Furthermore, individuals can enhance their own physical and mental health by practicing compassion. The ability of networks to withstand and recover from physical and emotional challenges, while maintaining strong and supportive relationships among its members, depends on the health and overall well-being of those members. Therefore, we argue that active community participation and death education can strengthen a community’s capacity to assist people facing death, dying, and bereavement.
1 Introduction
Promoting the compassionate engagement of communities and advocating for death literacy are essential components in organizing populations for potential global crises. The COVID-19 pandemic highlighted how people and communities are unprepared for death, i.e., unable to deal with the psychological, emotional or spiritual issues associated with the process of death and dying. According to a recent concept analysis about death unpreparedness due to COVID-19 (1), three main attributes stand out: (1) individual attributes, including aspects related to the paucity of death and grief literacy; (2) relational attributes, in particular the issue of dying unaccompanied; and (3) contextual attributes, in particular the disruption of compassionate care and collective mourning and grieving. Death unpreparedness increases death-related anxiety and stress, conditions a positive awareness of death, increases bereavement overload and limits people’s capacity to appreciate their lives (1). Therefore, it is crucial to integrate compassionate community networks with work social services and natural support systems to promote a social approach to EoL care (2, 3).
Like health, as defined by the World Health Organization (WHO), death, loss, and care are also everyone’s duties. The Compassionate Cities movement, promoted by the Public Health Palliative Care International (PHPCI) Organization, advocates that compassionate communities are “those that publicly recognize people at the end of life and their needs, and are conscious of seeking and involving all major sectors of the city to help through care and accompaniment to reduce the social, psychological and health impact of difficult life processes and situations, especially those related to disability, aging, dependency, end of life, caregiver burden, grief and bereavement” (4). Likewise, considering the agenda for Sustainable Development Goals (5) and the WHO’s guidelines for a community empowerment strategy (6), an approach based on creating supportive environments based on people’s needs is fundamental, while attending to the needs of future generations and reorienting health services through a relationship of collective responsibility shared by individuals, community groups, health professionals, health services and government.
The purpose of this paper is to discuss how a compassionate engagement approach can promote and support the development of a common understanding of death, dying and bereavement. Besides, death literacy emerges from the need to understand how communities come together in care, especially in equipping people to cope with loss, grief, and the concept of mortality (i.e., the people’s awareness and cognitive recognition of their death as an unavoidable event). Lastly, this paper highlights some implications for the future of palliative and EoL care delivery in a post-COVID-19 world.
2 Compassionate communities: an essential transition in the post-pandemic era
Compassionate communities emerged from an international movement seeking to implement a public health strategy to EoL care, based on the empathetic assumption of shared social responsibility in the face of inevitable suffering rather than the exclusive institutionalization of responses (7–9). Aspects such as health, illness, death and loss are understood as natural aspects of human existence. This approach promotes a holistic outlook of the person, focusing on collective and individual well-being in its different dimensions: biological, psychological, spiritual and social.
Compassionate communities promote social capital’s potential by fostering and encouraging relationships of mutuality through the empowerment of citizens who are expected to play an active role in their communities. These networks of support also contributing to the creation of meaningful social connections capable of increasing individual support systems while encouraging the development of communities capable of withstanding adversity (i.e., resilient communities) (10). This community movement includes various social actors, from formal agents (health and social care networks) to informal agents, who belong to different contexts: workplaces, community centers, cultural and religious organizations, and recreational and sports associations, among other organizations with different levels of structural formality (3, 10, 11). Different levels of development derive from different political paradigms, but also from different levels of the population’s literacy, without neglecting the context and culture associated with attitudes toward the EoL (12). Considering the advancement of health sciences and medicine, the perspective of treating illness as having a successful outcome has been consolidated in modern societies, thereby sometimes overlooking the inevitability of death and neglecting the complexity of the response to EoL adjustment processes (13).
Over the last decade, there has been a growing recognition that communities have been marginalized and EoL care has been increasingly institutionalized. Currently, scholars analyse institutionalization as the process of relocating older, ill, and dying people to care facilities and hospitals (14). This practice involves removing dying and death from regular daily life and is linked to the societal stigma surrounding old age, disease, dying, and death. The discourse examines the spatial distribution of dying in various locations, which are significant not only due to their physical characteristics but also because of the interconnected social environments they offer for the process of dying. The quality of a person’s death is influenced not just by the location, but also by their specific social support structure. However, certain areas or situations are closely linked to either positive or negative practices of care and support. The familiar environment and the intimacy, tranquility, and steadiness provided by home care make it a suitable social context for dying, as well as for preserving ontological security and relational connection (15). Potential homes are not limited to private households but could include nursing homes that provide suitable circumstances for their residents. Conversely, societal discussions associate hospitals with onerous and potentially superfluous treatment as a component of advanced medical technology, impatience, noise, and a dearth of privacy. Hospitalization is discursively presented as antithetical to a good death (16).
In contrast, compassionate communities make use of social connections, reciprocity and trust, providing a paradigm shift in palliative care policy and practice. This shift has led to the development of new practical initiatives promoting EoL activities and models of care that are delivered within a community framework, promoting personal and community empowerment (17). Such training increases the ability to develop and maintain knowledge about EoL care in the community and is a catalyst for using support systems to solve problems, make decisions, communicate and act more effectively when someone in the community is dying (11). Specific examples of compassionate community interventions include (a) providing training for health professionals, volunteers, caregivers, and faith communities to facilitate discussions on death and dying; (b) promoting TV and radio coverage that encourages the choice to die at home; (c) organizing “cultural” events, such as art exhibitions, death cafés, and remembrance festivals; (d) establishing community group sessions in various settings such as senior housing, churches, assisted living facilities, and businesses; and (e) advocating for research organizations to prioritize EoL research, including community-based participatory studies (3, 18).
Notwithstanding, several barriers influence the involvement of communities, such as inadequate preparation due to lack of competence; the voluntary nature of programs; cultural, social and economic differences and the nature of vulnerabilities; time constraints and conflicts with individual priorities; and conflicts of interest (3, 13, 19). To mitigate these barriers, it is important to identify the main individual and social gains from the development and implementation of compassionate communities, including significant improvements in social relationships, the ability to cope with daily activities, and increased support networks. Formal services and networks are less effective in these aspects, especially in environments of greater social isolation (20). Realities are disparate when it comes to developing compassionate communities, and the emerging challenges certainly include raising awareness of compassion-based care among citizens, emphasizing social reinforcement, the helping relationship, and the ability of citizens to actively participate in the development of palliative care in their communities (21).
3 Death literacy: empower both the self and the other
Death literacy, emerging from the need to understand how communities come together in care (17), is understood as “the knowledge and skills necessary to enable access to, compression of and informed choices about end-of-life and dying care options” (17). This concept requires systemic and behavioral change, based on components such as skill, knowledge, experiential learning, and community action (22). Additionally, death literacy plays a critical role in equipping people to cope with loss, grief, and the concept of mortality. Present-day society often shies away from openly discussing death, which can lead to emotional and spiritual unreadiness when facing crises. By advocating for death literacy, we empower individuals to address questions of human existence more adeptly and mindfully, fostering a healthier approach to these inevitable aspects of life. Death literacy has a significant impact on reducing anxiety about death (23) and promotes individual awareness regarding decision-making on fundamental issues throughout life, especially at the EoL, fostering greater involvement in the definition of an advanced care plan (24). Interestingly, research suggests that responses to awareness of mortality vary between younger and older individuals. Developmentally, younger people typically focus on current worries and future ambitions, whereas older adults tend to prioritize deeper life meanings, which makes them more attuned to the broader implications of mortality (25). Hence, the progression of development implies that coping mechanisms for the fear of death change with time.
Several factors influence the existence of death literacy. They can be organized into three groups: sociodemographic factors (age, gender, level of education, spiritual and religious beliefs); professional factors (health professionals show better indicators of death literacy); and factors related to experiences of support and care in situations related to death and the EoL (in a personal, professional or volunteer context) (26). It is also important to consider moral differences and cultural diversity as relevant aspects in the different conceptual assumptions related to death and dying (27).
Death literacy can be seen as a health resource or outcome, insofar as it mediates better health indicators—if we consider the benefits of being able to deal with death and the EoL—or, alternatively, a result of individual and/or collective experiences of dealing with these processes (28). It is important to move beyond “talking about death” to an in-depth conversation that develops criticism and awareness, enabling social commitment that translates into community empowerment and, above all, active care and creating compassionate communities (22). As a community and social need, death literacy can involve formal agents or concerted actions in certain target groups, such as health professionals or students, which translates into the strengthening and development of higher levels of competence in EoL issues (29).
In recent decades, Western culture has systematically suppressed reflection about death and dying. This resulted in individuals ill-equipped to handle the overwhelming amount of news related to mortality during the pandemic time (30). Recently, certain educational programs were created to assist individuals in becoming more comfortable with the concept of death. These programs encourage open discussions about death among peers and provide opportunities for individuals to express their thoughts and emotions through artistic means. This creative approach allows individuals to explore the concept of death and dying in a more unrestrained manner (31). Interventions to promote death literacy are diverse, ranging from innate development through experiential learning about EoL situations and the death of someone significant (32, 33); classic approaches to skills development through formal education programs in a face-to-face training methodology and using pedagogical strategies such as roleplay (34) or an e-learning training methodology (29); professional interventions in health care contexts (35); but also through more or less formal community interventions, such as death cafés (36), or games using “DöBra cards”—a tool to support conversations about values and preferences for future care at the EoL (37). Another effective methodology utilized in death education is photovoice. In this approach, participants are instructed to create photographs that explore the topic of death and dying, capturing their perceptions and representations. These photographs are then shared with the group and serve as a basis for discussion and reflection (31, 38). These experiences have shown that actively addressing the topic of death and the accompanying unpleasant emotions can effectively enhance individual resilience and reduce fears (39). Death education seeks to facilitate open discussion and reflection on topics that are typically avoided in everyday conversations due to their tendency to evoke feelings of concern and sadness (40). Increased awareness of the fear of death and the subsequent protective mechanisms helps individuals confront challenges that occur from mortal circumstances and enable them to empathize with those experiencing personal loss (36, 37). Furthermore, studies have demonstrated that contemplating mortality and the fragility of human existence can also alleviate anxiety and enhance the ability to handle health-related information well (41).
4 Implications for the future of palliative and EoL care delivery
The impact of major crises has a knock-on effect on the organization of societies, with significant consequences for the health of their populations (42–47), requiring health systems to organize themselves to promote people’s health, integrating the community as an active and central element in the design and implementation of a public health strategy for palliative care (48). Clearly community empowerment, which allows people to gain control over decisions and actions that affect their lives (49). That is a path of partnership with institutional health services that can bring people’s real needs to the forefront, including them as active agents and key elements in defining solutions that respond to their problems.
Thus, it is important to develop responses addressing the transversal suffering caused by the foreseeable increase in chronic diseases (50), and to ensure a comprehensive and consistent response to possible new crises, namely in three areas: telehealth palliative care services, psychosocial support and advance care planning.
4.1 Telehealth palliative care services
The COVID-19 pandemic demanded swift adaptations in palliative care delivery by healthcare systems to address the evolving needs of patients and their caregivers. Telehealth is an essential tool for expanding the reach and availability of palliative care. It is particularly important for patients residing in remote and rural areas (51, 52) or for those without financial resources to access the required technologies. These individuals need to have guaranteed access to expert treatment. The most effective telehealth practices involve establishing rapport, setting the agenda, responding empathically to emotions, conveying information, and effectively concluding the visit to ensure a user-centered design (53, 54). Nevertheless, additional comprehensive testing is required in real-world settings. Promising areas for further investigation involve the evaluation of algorithms to determine which patients would derive advantages from telehealth, the examination of technological proficiency, the assessment of communication quality in telehealth interactions, the testing of telehealth effectiveness in diverse settings (such as cultural or clinical contexts), and the exploration of perceptions of the quality of care by both patients and caregivers (53, 55, 56).
4.2 Psychosocial support
The pandemic highlighted the challenge of maintaining consistent care, particularly in the fields of palliative care (57). It allowed healthcare teams to fully recognize the importance of comprehensive support services (including social, psychological, and spiritual assistance) that enhance the quality of experiences for both patients and caregivers. These services became more difficult to access or were no longer available during the pandemic. Furthermore, evidence suggests that patients and their caregivers frequently face difficulties in physically accessing support services located in palliative centers due to transportation or scheduling constraints. As a result, they tend to choose community-based support that is closer to their homes (58). With the shift toward outpatient EoL care, establishing stronger ties between Healthcare Professionals (HCP) and the community is crucial. This includes implementing efficient procedures to connect patients and caregivers with community partners outside of clinic visits. Previous research has provided evidence that nurse-led transitional care models are effective in enhancing the consistency of care for older persons with chronic diseases when they move between different healthcare settings (59). Palliative care nurses may benefit from utilizing modified transitional care models to enhance the provision of comprehensive and continuous community-based supportive services across the entire trajectory of care (60). Implementing proactive strategies to support palliative needs within basic palliative care can potentially alleviate the strain on already overwhelmed speciality palliative care programs.
The scarcity of psychological support services for caregivers, particularly during the period of bereavement, as well as for HCP, became evident throughout the pandemic. Palliative care programs should establish more structured bereavement programs, including innovative approaches like internet and mobile-based interventions to effectively expand the reach of grief services (61).
While HCP have long been familiar with this issue, the pandemic has heightened the awareness of both healthcare institutions and the general public regarding the moral and psychological suffering experienced by HCP, and the subsequent impact on their mental health. A significant number of clinicians, particularly nurses, experienced mental health consequences to the point that they seriously considered leaving the healthcare field (62–64). However, the provision of comprehensive mental health assistance for HCP is still far from desirable levels. The widespread disparity requires healthcare systems to strengthen and enhance the mental health support services provided during the pandemic. These services include monitoring psychological distress, offering in-person and/or virtual psychotherapy, providing education on resilience and mindfulness, and offering tools for debriefing and stress management (65, 66). These interventions should be accompanied by comprehensive investments and policies at the system level to safeguard the nursing workforce and emphasize their long-term sustainability even after the pandemic’s effects have subsided (66, 67).
4.3 Advance care planning
Kellehear stated that incorporating ideas of community participation and development is a key component of the overall strategy to promote the utilization of Advance Care Planning [ACP] (11, 68). Expanding the principles of promoting health and well-being and reducing harm can provide a more comprehensive knowledge of how the usage of ACP can be further improved to better serve professionals, patients, and families. Within the framework of ACP, the promotion of health and well-being emphasizes the creation of supportive settings, not only to address the demands of care but also to foster positive connections and goals for both patients and caregiving networks. Kelley (2) explains the functioning of these networks and how they can be utilized to improve the significance and worth within the caring network, while also managing the challenges it faces.
ACP discussions are crucial to guarantee person-centered care, particularly in times of crisis. The rise in the number patients with COVID-19 requiring intensive care in hospitals complicated the delivery of medical care to other critically ill patients, leading to some patients not receiving the necessary medical attention. Healthcare facilities struggled to treat the overwhelming number of COVID-19 patients and the other seriously ill patients, hindering discussions of ACP. Furthermore, places in the hospital that ensured social distancing during the ACP discussion and signing the ACP face-to-face were lacking (69). Healthcare professionals faced difficulties in effectively addressing the beliefs and wishes of patients regarding end-of-life issues, formulating care strategies that aligned with these wishes, and providing individualized care. The typical bereavement process was hindered, placing a psychological burden on patients, families, and healthcare workers, as a result of ethical dilemmas like triage and resource management during the COVID-19 pandemic.
Research indicates that mass media and online ACP resources are essential in promoting community-based ACP (69). A vast amount of information about the COVID-19 pandemic was disseminated by mass media worldwide. For instance, an innovative and user-friendly ACP website (PREPARE) was created in the United States (70). Its purpose is to educate individuals on identifying their life priorities and desired lifestyle, effectively communicating their preferences to family and doctors, and making informed medical decisions that align with their personal values and beliefs. This website is interactive, easily accessible, and completely free of charge. Likewise, incorporating crucial ACP data into the Electronic Health Record is imperative to enable multiple clinicians, from disparate healthcare organizations, to access and understand the information that holds the utmost significance to patients. This facilitates the clarification of patients’ preferences for EoL care and allows regular review of all documents to ensure they continue to accurately reflect their wishes (71). Besides, HCP need to assert and utilize their position in facilitating ACP throughout the entire trajectory process. In this vein, the pandemic underscored the need to provide ACP education to hospital and home care workers, implementing a telemedicine-based system for immediate dissemination of ACP information among hospitals and facilities, and facilitating debates about ACP within the community (72, 73). Patients and caregivers may now be more open to these discussions due to heightened social awareness regarding their significance brought about by the pandemic.
5 Final remarks
In a changing world, the prevailing state of isolation and self-centeredness necessitates a re-evaluation of the concepts and methods of healthy communities by incorporating compassion. This entails reestablishing connections via genuine acts of care, actively engaging with others, and fostering supportive networks in caregiving. This movement integrates the experiences of death and loss into our health frameworks and infuses the notion of compassion into our health policies (10). The primary goal is to raise awareness within the community and encourage their active participation in end-of-life care. The COVID-19 pandemic has intensified the issue of communal solidarity and conviviality, and promoted Compassionate Community interventions due to the increased attention given to the experiences and support requirements of the bereaved and those nearing the EoL.
Data availability statement
The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.
Author contributions
JV: Writing – review & editing, Writing – original draft, Conceptualization. BD: Writing – review & editing, Writing – original draft. AA: Writing – review & editing. CL: Writing – review & editing, Writing – original draft, Supervision, Project administration, Funding acquisition, Conceptualization.
Funding
The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. This work was funded by FCT-Fundação para a Ciência e a Tecnologia, I.P. (UIDB/05704/2020 and UIDP/05704/2020) and by the Scientific Employment Stimulus-Institutional Call-[https://doi.org/10.54499/CEECINST/00051/2018/CP1566/CT0012, accessed on 20 August 2024].
Conflict of interest
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Publisher’s note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
References
1. Costeira, C, Dixe, MA, Querido, A, Rocha, A, Vitorino, J, Santos, C, et al. Death unpreparedness due to the COVID-19 pandemic: a concept analysis. Healthcare. (2024) 12:188. doi: 10.3390/healthcare12020188
2. Kelley, ML. Developing a compassionate community: a Canadian conceptual model for community capacity development. Palliat Care Soc Pract. (2023) 17:26323524231193040. doi: 10.1177/26323524231193040
3. Dumont, K, Marcoux, I, Warren, É, Alem, F, Alvar, B, Ballu, G, et al. How compassionate communities are implemented and evaluated in practice: a scoping review. BMC Palliat Care. (2022) 21:131. doi: 10.1186/s12904-022-01021-3
4. PHPCI. Become a Compassionate City — PHPCI. Available at: https://www.phpci.org/become-compassionate-cities (2024).
5. United Nations. Sustainable development goals: 17 goals to transform our world. Available at: https://www.un.org/en/exhibits/page/sdgs-17-goals-transform-world (2024).
6. World Health Organization. Community engagement: A health promotion guide for universal health coverage in the hands of the people. Geneva: World Health Organization (2020).
7. Aoun, SM, Abel, J, Rumbold, B, Cross, K, Moore, J, Skeers, P, et al. The compassionate communities connectors model for end-of-life care: a community and health service partnership in Western Australia. Palliat Care Soc Pract. (2020) 14:263235242093513. doi: 10.1177/2632352420935130
8. Wegleitner, K, Heimerl, K, and Kellehear, A. Compassionate Communities. Case Studies from Britain and Europe (2017) UK: Routledge.
9. Kellehear, A. Compassionate cities: public health and end-of-life careCompassionate cities: public health and end-of-life care [1st edition]. (2005) UK: Routledge.
10. Abel, J. Compassionate communities and end-of-life care. Clin Med. (2018) 18:6–8. doi: 10.7861/clinmedicine.18-1-6
11. Kellehear, A. Compassionate communities: end-of-life care as everyone’s responsibility. QJM. (2013) 106:1071–5. doi: 10.1093/qjmed/hct200
12. Gómez-Batiste, X, Mateu, S, Serra-Jofre, S, Molas, M, Mir-Roca, S, Amblàs, J, et al. Compassionate communities: design and preliminary results of the experience of Vic (Barcelona, Spain) caring city. Ann Palliat Med. (2018) 7:S32–41. doi: 10.21037/apm.2018.03.10
13. Barnestein-Fonseca, P, Nebro-Gil, A, Aguiar-Leiva, VP, Víbora-Martín, E, Ruiz-Torreras, I, Martín-Rosello, ML, et al. Barriers and drivers of public engagement in palliative care scoping review. BMC Palliat Care. (2024) 23:117. doi: 10.1186/s12904-024-01424-4
14. Lang, A. The good death and the institutionalisation of dying: an interpretive analysis of the Austrian discourse. Soc Sci Med. (2020) 245:112671. doi: 10.1016/j.socscimed.2019.112671
15. Funk, L, Krawczyk, M, Cherba, M, Cohen, SR, Dujela, C, Nichols, C, et al. ‘The beauty and the less beautiful’: exploring the meanings of dying at ‘home’ among community and practitioner representatives and advocates across Canada. Palliat Care Soc Pract. (2023) 17:263235242311569. doi: 10.1177/26323524231156944
16. Coret, M, and Martimianakis, MAT. Conceptualizations of “good death” and their relationship to technology: a scoping review and discourse analysis. Health Sci Rep. (2023) 6:e1374. doi: 10.1002/hsr2.1374
17. Leonard, R, Noonan, K, Horsfall, D, Kelly, M, Rosenberg, JP, Grindrod, A, et al. Developing a death literacy index. Death Stud. (2022) 46:2110–22. doi: 10.1080/07481187.2021.1894268
18. Roleston, C, Shaw, R, and West, K. Compassionate communities interventions: a scoping review. Ann Palliat Med. (2023) 12:936–51. doi: 10.21037/apm-22-867
19. Kumar, S. Community participation in palliative care: reflections from the ground. Prog Palliat Care. (2020) 28:83–8. doi: 10.1080/09699260.2019.1706272
20. Aoun, SM, Richmond, R, Gunton, K, Noonan, K, Abel, J, and Rumbold, B. The compassionate communities connectors model for end-of-life care: implementation and evaluation. Palliat Care Soc Pract. (2022) 16:263235242211396. doi: 10.1177/26323524221139655
21. Leão, D, and Carqueja, E. Compassionate communities: a response to palliative care challenges. Motricidade. (2024) 20:1. doi: 10.6063/motricidade.33970
22. Noonan, K. Death literacy-developing a tool to measure the social impact of public health initiatives. Ann Palliat Med. (2018) 7:AB007. doi: 10.21037/apm.2018.s007
23. Tang, ML, Goh, HS, Zhang, H, and Lee, CN. An exploratory study on death anxiety and its impact on community palliative nurses in Singapore. J Hosp Palliat Nurs. (2021) 23:469–77. doi: 10.1097/NJH.0000000000000782
24. Meier, C, Vilpert, S, Wieczorek, M, Borrat-Besson, C, Jox, RJ, and Maurer, J. End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland. BMJ Public Health. (2024) 2:e000600. doi: 10.1136/bmjph-2023-000600
25. Maxfield, M, John, S, and Pyszczynski, T. A terror management perspective on the role of death-related anxiety in psychological dysfunction. Humanist Psychol. (2014) 42:35–53. doi: 10.1080/08873267.2012.732155
26. Johansson, T, Tishelman, C, Eriksson, LE, Cohen, J, and Goliath, I. Factors associated with death literacy among Swedish adults: a cross-sectional exploratory study. Palliat Support Care. (2023):1–11. doi: 10.1017/S1478951523000548
27. Hayes, B, Fabri, AM, Coperchini, M, Parkar, R, and Austin-Crowe, Z. Health and death literacy and cultural diversity: insights from hospital-employed interpreters. BMJ Support Palliat Care. (2020) 10:e8–8. doi: 10.1136/bmjspcare-2016-001225
28. Noonan, K, Horsfall, D, Leonard, R, and Rosenberg, J. Developing death literacy. Prog Palliat Care. (2016) 24:31–5. doi: 10.1080/09699260.2015.1103498
29. Vivekananda, K, Parratt, C, Tucker, M, and Leonard, R. The impact of online death literacy education on psychology students to have better end-of-life conversations. Aust Psychol. (2020) 55:410–22. doi: 10.1111/ap.12444
30. Testoni, I, Iacona, E, Corso, C, Pompele, S, Dal Corso, L, Orkibi, H, et al. Psychology students’ perceptions of COVID-19 in a death education course. Front Public Health. (2021) 9:625756. doi: 10.3389/fpubh.2021.625756
31. Testoni, I, Piscitello, M, Ronconi, L, Zsák, É, Iacona, E, and Zamperini, A. Death education and the Management of Fear of death via photo-voice: an experience among undergraduate students. J Loss Trauma. (2019) 24:387–99. doi: 10.1080/15325024.2018.1507469
32. Li, X, Che, SL, Zhu, M, and Ng, WI. What we learnt from parents’ death experience: a cross-sectional study of death literacy and parent’s death quality among adult children in China. Palliat Support Care. (2023):1–9. doi: 10.1017/S1478951523001657
33. Şimşek Arslan, B, and Başyiğit, Ö. Death and grief literacy in the family. Psikiyatride Güncel Yaklaşımlar. (2024) 16:644–57. doi: 10.18863/pgy.1384342
34. Vitorino, J, Querido, A, Semeão, I, and Laranjeira, C. Promoting death literacy in palliative care nursing education using narrative pedagogy In: 10th international conference on higher education advances (HEAd’24). Valencia: Universitat Politècnica de València (2024). 1–8.
35. Bahrami, M, and Behbahani, M. The effect of a health literacy promotion program on the level of health literacy and death anxiety in women with breast cancer. Iran J Nurs Midwifery Res. (2019) 24:286–90. doi: 10.4103/ijnmr.IJNMR_178_18
36. Laranjeira, C, Dixe, MA, Querido, A, and Stritch, JM. Death cafés as a strategy to foster compassionate communities: contributions for death and grief literacy. Front Psychol. (2022) 13:986031. doi: 10.3389/fpsyg.2022.986031
37. Eneslätt, M, Johansson, T, Stoor, K, and Tishelman, C. “The DöBra cards.,” culture, spirituality and religious literacy in healthcare. London: Routledge (2023). p. 163–179.
38. Madrigal, DS, Salvatore, A, Casillas, G, Casillas, C, Vera, I, Eskenazi, B, et al. Health in my community: conducting and evaluating PhotoVoice as a tool to promote environmental health and leadership among Latino/a youth. Prog Community Health Partnersh. (2014) 8:317–29. doi: 10.1353/cpr.2014.0034
39. Wong, W-Y. The growth of death awareness through death education among university students in Hong Kong. OMEGA - Journal of Death and Dying. (2009) 59:113–28. doi: 10.2190/OM.59.2.b
40. Testoni, I, Palazzo, L, De Vincenzo, C, and Wieser, MA. Enhancing existential thinking through death education: a qualitative study among high school students. Behavioral Sciences. (2020) 10:113. doi: 10.3390/bs10070113
41. Arndt, J, and Goldenberg, JL. Where health and death intersect. Curr Dir Psychol Sci. (2017) 26:126–31. doi: 10.1177/0963721416689563
42. Berrang-Ford, L, Sietsma, AJ, Callaghan, M, Minx, JC, Scheelbeek, PFD, Haddaway, NR, et al. Systematic mapping of global research on climate and health: a machine learning review. Lancet Planet Health. (2021) 5:e514–25. doi: 10.1016/S2542-5196(21)00179-0
43. Patel, SS, and Erickson, TB. The new humanitarian crisis in Ukraine: coping with the public health impact of hybrid warfare, mass migration, and mental health trauma. Disaster Med Public Health Prep. (2022) 16:2231–2. doi: 10.1017/dmp.2022.70
44. Marazziti, D, Avella, MT, Mucci, N, Della Vecchia, A, Ivaldi, T, Palermo, S, et al. Impact of economic crisis on mental health: a 10-year challenge. CNS Spectr. (2021) 26:7–13. doi: 10.1017/S1092852920000140
45. Halloran, MJ. African American health and posttraumatic slave syndrome: a terror management theory account. J Black Stud. (2018) 50:45–65. doi: 10.1177/0021934718803737
46. Rocque, RJ, Beaudoin, C, Ndjaboue, R, Cameron, L, Poirier-Bergeron, L, Poulin-Rheault, R-A, et al. Health effects of climate change: an overview of systematic reviews. BMJ Open. (2021) 11:e046333. doi: 10.1136/bmjopen-2020-046333
47. Sidel, VW, and Levy, BS. The health impact of war †. Int J Inj Control Saf Promot. (2008) 15:189–95. doi: 10.1080/17457300802404935
48. Librada-Flores, S, Nabal-Vicuña, M, Forero-Vega, D, Muñoz-Mayorga, I, and Guerra-Martín, MD. Implementation models of compassionate communities and compassionate cities at the end of life: a systematic review. Int J Environ Res Public Health. (2020) 17:6271. doi: 10.3390/ijerph17176271
49. Cicognani, E, Albanesi, C, Valletta, L, and Prati, G. Quality of collaboration within health promotion partnerships: impact on sense of community, empowerment, and perceived projects’ outcomes. J Community Psychol. (2020) 48:323–36. doi: 10.1002/jcop.22254
50. Weir, HK, Thompson, TD, Stewart, SL, and White, MC. Cancer incidence projections in the United States between 2015 and 2050. Prev Chronic Dis. (2021) 18:210006:E59. doi: 10.5888/pcd18.210006
51. Cai, Y, and Lalani, N. Examining barriers and facilitators to palliative care access in rural areas: a scoping review. Am J Hosp Palliat Med. (2022) 39:123–30. doi: 10.1177/10499091211011145
52. Salikhanov, I, Katapodi, MC, Kunirova, G, and Crape, BL. Improving palliative care outcomes in remote and rural areas of LMICs through family caregivers: lessons from Kazakhstan. Front. Public Health. (2023) 11:1186107. doi: 10.3389/fpubh.2023.1186107
53. Nwosu, AC. Telehealth requires improved evidence to achieve its full potential in palliative care. Palliat Med. (2023) 37:896–7. doi: 10.1177/02692163231182461
54. Banerjee, SC, Staley, JM, Howell, F, Malling, C, Moreno, A, Kotsen, C, et al. Communicating effectively via tele-oncology (Comskil TeleOnc): a guide for best practices for communication skills in virtual Cancer care. J Cancer Educ. (2022) 37:1343–8. doi: 10.1007/s13187-021-01959-7
55. Keenan, J, Rahman, R, and Hudson, J. Exploring the acceptance of telehealth within palliative care: a self-determination theory perspective. Health Technol (Berl). (2021) 11:575–84. doi: 10.1007/s12553-021-00535-9
56. Caetano, P, Querido, A, and Laranjeira, C. Preparedness for caregiving role and telehealth use to provide informal palliative home care in Portugal: a qualitative study. Healthcare. (2024) 12:1915. doi: 10.3390/healthcare12191915
57. Mateus, MJ, Simões, L, Ali, AM, and Laranjeira, C. Family experiences of loss and bereavement in palliative care units during the COVID-19 pandemic: an interpretative phenomenological study. Healthcare. (2024, 2024) 12:1763. doi: 10.3390/healthcare12171763
58. Levoy, K, Wool, J, Ashare, RL, Rosa, WE, Barg, FK, and Meghani, SH. “It’s rougher on me than it is on him”: family caregiver–generated and prioritized illness concerns while patients undergo cancer treatments. JCO Oncol Pract. (2022) 18:e525–36. doi: 10.1200/OP.21.00164
59. Hirschman, KB, Shaid, E, McCauley, K, Pauly, MV, and Naylor, MD. Continuity of care: the transitional care model. Online J Issues Nurs. (2015) 20:1. doi: 10.3912/OJIN.Vol20No03Man01
60. Mardani, A, Azizi, M, Alazmani Noodeh, F, Alizadeh, A, Maleki, M, Vaismoradi, M, et al. A concept analysis of transitional care for people with cancer. Nurs Open. (2024) 11:e2083. doi: 10.1002/nop2.2083
61. Zuelke, AE, Luppa, M, Löbner, M, Pabst, A, Schlapke, C, Stein, J, et al. Effectiveness and feasibility of internet-based interventions for grief after bereavement: systematic review and meta-analysis. JMIR Ment Health. (2021) 8:e29661. doi: 10.2196/29661
62. De Kock, JH, Latham, HA, Leslie, SJ, Grindle, M, Munoz, S-A, Ellis, L, et al. A rapid review of the impact of COVID-19 on the mental health of healthcare workers: implications for supporting psychological well-being. BMC Public Health. (2021) 21:104. doi: 10.1186/s12889-020-10070-3
63. Muller, AE, Hafstad, EV, Himmels, JPW, Smedslund, G, Flottorp, S, Stensland, SØ, et al. The mental health impact of the covid-19 pandemic on healthcare workers, and interventions to help them: a rapid systematic review. Psychiatry Res. (2020) 293:113441. doi: 10.1016/j.psychres.2020.113441
64. Lou, NM, Montreuil, T, Feldman, LS, Fried, GM, Lavoie-Tremblay, M, Bhanji, F, et al. Nurses’ and physicians’ distress, burnout, and coping strategies during COVID-19: stress and impact on perceived performance and intentions to quit. J Contin Educ Health Prof. (2022) 42:e44–52. doi: 10.1097/CEH.0000000000000365
65. Pollock, A, Campbell, P, Cheyne, J, Cowie, J, Davis, B, McCallum, J, et al. Interventions to support the resilience and mental health of frontline health and social care professionals during and after a disease outbreak, epidemic or pandemic: a mixed methods systematic review. Cochrane Database Syst Rev. (2020) 11:CD013779. doi: 10.1002/14651858.CD013779
66. Nikunlaakso, R, Selander, K, Oksanen, T, and Laitinen, J. Interventions to reduce the risk of mental health problems in health and social care workplaces: a scoping review. J Psychiatr Res. (2022) 152:57–69. doi: 10.1016/j.jpsychires.2022.06.004
67. Schlak, AE, Rosa, WE, Rushton, CH, Poghosyan, L, Root, MC, and McHugh, MD. An expanded institutional-and national-level blueprint to address nurse burnout and moral suffering amid the evolving pandemic. Nurs Manag. (2022) 53:16–27. doi: 10.1097/01.NUMA.0000805032.15402.b3
68. Kellehear, A. Advance care planning as a public health issue. (2014). Available at: http://hdl.handle.net/10454/10888.
69. Hirakawa, Y, Saif-Ur-Rahman, K, Aita, K, Nishikawa, M, Arai, H, and Miura, H. Implementation of advance care planning amid the COVID-19 crisis: a narrative review and synthesis. Geriatr Gerontol Int. (2021) 21:779–87. doi: 10.1111/ggi.14237
70. Howard, M, Robinson, CA, McKenzie, M, Fyles, G, Sudore, RL, Andersen, E, et al. Effect of an interactive website to engage patients in advance care planning in outpatient settings. The Annals of Family Medicine. (2020) 18:110–7. doi: 10.1370/afm.2471
71. Tai-Seale, M, Yang, Y, Dillon, E, Tapper, S, Lai, S, Yu, P, et al. Community-based palliative care and advance care planning documentation: evidence from a multispecialty group. J Am Geriatr Soc. (2018) 66:327–32. doi: 10.1111/jgs.15145
72. Mayers, T, Sakamoto, A, Inokuchi, R, Hanari, K, Ring, HZ, and Tamiya, N. Situation, education, innovation, and recommendation: a large-scale systematic review of advance care planning in the age of COVID-19. Healthcare. (2024) 12:667. doi: 10.3390/healthcare12060667
Keywords: compassionate communities, death literacy, palliative care, post-pandemic era, advance care planning, psychosocial support, end of life care, telehealth
Citation: Vitorino JV, Duarte BV, Ali AM and Laranjeira C (2024) Compassionate engagement of communities in support of palliative and end-of-life care: challenges in post-pandemic era. Front. Med. 11:1489299. doi: 10.3389/fmed.2024.1489299
Edited by:
Barbara Sena, University of Bergamo, ItalyReviewed by:
Ayelet Dassa, Bar-Ilan University, IsraelCopyright © 2024 Vitorino, Duarte, Ali and Laranjeira. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Carlos Laranjeira, Y2FybG9zLmxhcmFuamVpcmFAaXBsZWlyaWEucHQ=