*Article* **Lessons Learned from Introducing Last Aid Courses at a University Hospital in Germany**

**Evelyn Mueller <sup>1</sup> , Georg Bollig 2,3,4 , Gerhild Becker <sup>1</sup> and Christopher Boehlke 1,\***


**Abstract:** In recent years, so called "Last Aid courses", concerning end-of-life care for people dying, have successfully been established in community settings in several European countries, Australia, and South-America. To date, they have not been evaluated in hospital settings, where educational needs (concerning care of the dying) are especially high, and may differ from the general population. To evaluate if Last Aid courses are feasible in hospital settings, and if informational needs of hospital staff are met by the curriculum, we introduced Last Aid courses at a university hospital. Five courses were offered; participants of courses 1 and 2 completed surveys with open-ended questions; the answers were used to develop the evaluation questionnaire employed in courses 3–5. In these three courses, 55 of the 56 participants completed an evaluation survey to explore their learning goals and obtain feedback. Courses were fully booked; participants were heterogeneous with regard to their professional background. The most prevalent learning goals were "preparation for emotional aspects in care of dying" (65.5% ratings "very important"), "preparation for medical/care aspects in care of dying" (60.0%), and "knowledge of supportive services and facilities" (54.5%). Overall, the evaluation showed that Last Aid courses were more suitable to educate non-medical hospital staff about care of the dying. Medical staff, in contrast to non-medical staff, more often requested courses with an extended curriculum in order to meet their learning goals. Last Aid courses were well accepted and helped to reduce information deficits on care of the dying in a heterogeneous population of hospital staff.

**Keywords:** Last Aid course; palliative care; hospital staff; education; survey

### **1. Introduction**

Estimations of individuals in need of general palliative care at the end-of-life exceed 60% [1,2]; numbers will increase in the decades to come due to expected demographic changes [3]. While the medical needs of seriously ill and dying people must be met by professionals, many needs (e.g., practical and emotional support) can be supported by citizens and compassionate communities [4]. Citizens of a compassionate community care for the old, sick, and dying people in their midst; "death" is integrated as a part of life in society. However, the public is often not aware of the needs of dying people and their relatives, or people are inadequately educated or prepared to support them [5].

The Last Aid course curriculum was created by an international working group to educate citizens about the care of the dying and palliative care; it was successfully implemented in community settings in several countries [6–8]. Furthermore, a special Last Aid course curriculum was developed for children and teenagers, and is well accepted by them [9].

**Citation:** Mueller, E.; Bollig, G.; Becker, G.; Boehlke, C. Lessons Learned from Introducing Last Aid Courses at a University Hospital in Germany. *Healthcare* **2021**, *9*, 906. https://doi.org/10.3390/ healthcare9070906

Academic Editor: Robbert Gobbens

Received: 31 May 2021 Accepted: 11 July 2021 Published: 16 July 2021

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

Hospital staff (medical and non-medical) face death and dying in various ways; thus the need for information on palliative care is possibly even higher than for the general population. At the same time, professional courses on palliative care are not common in many medical disciplines, and are not intended for non-medical professions. We therefore implemented Last Aid courses with only four teaching hours (45 min each) in a hospital setting, and asked if the courses were suited for the needs of the staff. We investigated the participants' reasons for course attendance, their professional and private burdens (concerning death and dying), general feedback on the course, and suggestions for improvements.

### **2. Materials and Methods**

We implemented Last Aid courses in a tertiary university hospital in Germany in 2018. Each course was open to 20 participants. The courses were announced for non-medical staff on the hospital's intranet platform. However, courses were open to all employees (including medical staff) of the hospital and no participation fees applied. The curriculum was comprised of four sessions, 45-min, named, "dying as a normal part of life", "planning ahead", "relieving suffering", and "final goodbyes". Teaching methods included lectures, group discussions, and practical exercises (for details, see [6]). Overall, five courses took place. Each course was fully booked and 17–20 persons participated. The interest in the courses was high—another five courses could have been held without need for additional announcements, but courses were paused due to time constraints of the teachers (two physicians, three nurses). Courses were taught in teams of two (physician and nurse).

### *2.1. Pre-Survey and Item Development*

In the first two courses, participants were asked to complete a pre-survey of mainly open questions, so researchers could collect information for item development for the survey in courses 3–5. The pre-survey was completed by 33 participants (n = 4 medical staff; n = 29 non-medical staff; n = 27 female, n = 2 male, n = 2 no answer; age: m = 49.6 (sd = 10.2)). The pre-survey resulted in written descriptions on various topics, e.g., their goals and concerns (see Appendix A), as well as their burdens, due to death and dying. The answers were categorized by clustering similar descriptions and formulating subcategory labels by C.B. and E.M. For goals and expectations, five subcategories were identified. The subcategory descriptions formed the basis for the item wording of the "goals and concerns before attending the course" in the survey, of courses 3–5 (see Appendix B; item 8). For "burden due to death and dying", only generalized items on burdens in professional work and private life were included (see Appendix B; items 4 and 5). A range of other items was developed based on information from literature and the pre-survey (see Appendix B; not all results reported).

All newly developed items were pre-tested regarding face validity, suitability of Likert scales for questions, and comprehensibility through three cognitive interviews (physician, nurse, social worker), and modified by a team of three experts in the field (palliative medicine, psychology, and psychometrics). As the sample size in the pre-survey and cognitive interviews was limited, we included open-ended questions in the questionnaire in courses 3–5, ensuring participants could add new aspects, if they were not reflected in the pre-survey.

### *2.2. Evaluation Survey*

In courses 3–5, the actual evaluation survey was conducted, the results of which are reported here. Participants were informed that the evaluations—aimed at further development of the course and data collection, analysis, and reporting—were anonymous. They were asked to complete the survey immediately after the course or send the form back via mail. The questionnaire is included in Appendix B. The survey comprised: (a) sociodemographic and occupational characteristics of participants; (b) items for evaluation of course contents, extent of new information, recommendation, and comprehensibility

(drawn from standard evaluation questionnaires); (c) the specially developed items on goals and concerns, as well as burden due to death and dying. The items employed Likert-scales as answer options and open-ended questions. Additionally, participants could include comments and suggestions in an open-ended question.

### *2.3. Data Analysis*

For analysis, medical expertise levels were obtained by classification of reported professions into four levels: 0 non-medical professions; 1 therapeutic and medical assistance staff; 2 nurses and midwifes; and 3 physicians. Furthermore, burden due to death and dying was asked both for work and for private context. Within a summarized category of "overall burden", any person reporting medium, high, or very high burden in at least one of the contexts was classified as "burdened by death and dying".

Missing data were not imputed. Explorative data analysis included calculation of descriptive statistics as well as correlations (Kendall Tau-b); the Friedman test was employed to test for differences in ratings between the four modules; due to the explorative approach of the analysis, alpha level was not adjusted and was 5 % (two-tailed) for all tests. SPSS 24 was used for statistical analysis.

### **3. Results**

Courses 3–5 were fully booked (n = 60), and 56 staff members attended the course; 55 of the 56 (98.2%) participants completed the evaluation survey. Characteristics of the sample are reported in Table 1. The sample was heterogeneous with regard to age, profession, and extent of patient contact. A total of 90.9% (n = 50) of the participants were female. The participants covered the full range of professions in a hospital, from hairdressers, or laboratory and administrative staff (with no medical expertise) to nurses and physicians. The majority of participants (67.3% (n = 37)) was non-medical staff. A total of 36.4% (n = 20) of the participants reported care or support for dying relatives in the private context.

**Table 1.** Characteristics of participants of the Last Aid course (n = 55).


**Table 1.** *Cont.*


#### *3.1. Motivation to Participate in Last Aid Courses and Burden by Death and Dying* To understand the motivation of participants, we asked the participants of courses 1

**Contact with patients:** 

To understand the motivation of participants, we asked the participants of courses 1 and 2 for their reasons to attend the course. For examples of open-ended answers in the pre-survey categorization, see Appendix A. We deducted categories from the answers, formulated items on that basis, and asked the participants in the main survey how important these goals were (Figure 1). "Preparation for emotional aspects in care of dying", "preparation for medical/care aspects in care of dying", and "knowledge of supportive services and facilities" were rated as "very important" by the majority of participants. Less often rated as "very important" were "reduction of own anxiety and insecurity when dealing with the subject of death" and "contribution to the social discussion on the subject of dying". However, all learning goals were rated as "very/rather important" by more than 60% of participants (Figure 1). and 2 for their reasons to attend the course. For examples of open-ended answers in the pre-survey categorization, see appendix A. We deducted categories from the answers, formulated items on that basis, and asked the participants in the main survey how important these goals were (Figure 1). "Preparation for emotional aspects in care of dying", "preparation for medical/care aspects in care of dying", and "knowledge of supportive services and facilities" were rated as "very important" by the majority of participants. Less often rated as "very important" were "reduction of own anxiety and insecurity when dealing with the subject of death" and "contribution to the social discussion on the subject of dying". However, all learning goals were rated as "very/rather important" by more than 60% of participants (Figure 1).

**Figure 1.** Goals and concerns before attending the course (n = 55).

**Figure 1.** Goals and concerns before attending the course (n = 55). As perceived burden by death and dying might be a reason for attendance, we asked if participants felt burdened by "death and dying" at work and at home (Table 2). Summarizing it in "overall burden", 33 of the 55 participants (60.0%) reported medium/high As perceived burden by death and dying might be a reason for attendance, we asked if participants felt burdened by "death and dying" at work and at home (Table 2). Summarizing it in "overall burden", 33 of the 55 participants (60.0%) reported medium/high or very high burden by death and dying in at least one of the contexts (at home/at work).

or very high burden by death and dying in at least one of the contexts (at home/at work).


**Table 2.** Burden because of death and dying (n = 55).

**Table 2.** Burden because of death and dying (n = 55).

*Healthcare* **2021** 5 of 11

The burden by the topic "death and dying at work" correlated with the extent of patient contact (Chi2 (df = 16) = 28.8; *p* = 0.03, Figure 2), participants reporting more frequent contact were more likely to report burden. Furthermore, we found associations of burden of participants and their learning goals: more burdened participants were likely to indicated a higher importance of "knowledge of supportive services and facilities" (Kendall tau r = −0.41; *p* = 0.00), "preparation for emotional aspects of death and dying" (r = 0.28; *p* = 0.02), and "preparation for medical/care aspects" (r = −0.25, *p* = 0.03). Thus, burdened participants reported another pattern of informational needs than participants who did not feel burdened by death and dying. The burden by the topic "death and dying at work" correlated with the extent of patient contact (Chi2 (df = 16) = 28.8; *p* = 0.03, Figure 2), participants reporting more frequent contact were more likely to report burden. Furthermore, we found associations of burden of participants and their learning goals: more burdened participants were likely to indicated a higher importance of "knowledge of supportive services and facilities" (Kendall tau r = −0.41; *p* = 0.00), "preparation for emotional aspects of death and dying" (r = 0.28; *p* = 0.02), and "preparation for medical/care aspects" (r = −0.25, *p* = 0.03). Thus, burdened participants reported another pattern of informational needs than participants who did not feel burdened by death and dying.

**Figure 2.** Burden by the topic death and dying at work in relation to the extent of patient contact (n = 53). **Figure 2.** Burden by the topic death and dying at work in relation to the extent of patient contact (n = 53).

#### *3.2. Evaluation of Last Aid Courses by Medical and Non-Medical Staff 3.2. Evaluation of Last Aid Courses by Medical and Non-Medical Staff*

The four modules of the course were mostly rated "good" to "very good" with only a small subset of participants rating the modules "not so good", with none rating the courses being "unsatisfactory". The best-rated module 3 "relieving suffering" was rated "very good" by 70.9% of the participants (Figure 3). The four modules of the course were mostly rated "good" to "very good" with only a small subset of participants rating the modules "not so good", with none rating the courses being "unsatisfactory". The best-rated module 3 "relieving suffering" was rated "very good" by 70.9% of the participants (Figure 3).

**Figure 3.** Evaluation of the Last Aid course modules (n = 55).

**Figure 3.** Evaluation of the Last Aid course modules (n = 55).

new than non-medical staff (Kendall tau r = −0.36; *p* = 0.01).

To evaluate suitability of the Last Aid course curriculum in the hospital setting, we asked the participants about their overall rating of the course: on a 4-point Likert-scale (very good, good, not so good, and unsatisfactory): 45.5% (n = 25) judged the course as "very-good", 30.9% (n = 17) as "good", with 23.6% (n = 13) missing answers. When the participants were asked if they would recommend the course to others, a high percentage answered positively: "applies completely" was 79.2% (n = 42), "rather applies" was 18.9% (n = 10), "does rather not apply" was 1.9% (n = 1), "does not apply" was 0%, and there were two missing answers. Likewise, most participants found that the content of the course was conveyed in an understandable manner: "applies completely" was 85.5% (n = 47), "rather applies" was 10.9% (n = 6), and there were two missing answers. Similarly, participants mostly stated that they had learned something new during the course: "applies completely" was 49.1% (n = 27), "rather applies" was 38.2% (n = 21), "rather does not apply" was 7.3% (n = 4), "does not apply" was 1.8% (n = 1), and there were two missing answers. When we correlated the answers to this question with medical competence, we found that medical staff were more likely to indicate a lower level of learning something To evaluate suitability of the Last Aid course curriculum in the hospital setting, we asked the participants about their overall rating of the course: on a 4-point Likert-scale (very good, good, not so good, and unsatisfactory): 45.5% (n = 25) judged the course as "very-good", 30.9% (n = 17) as "good", with 23.6% (n = 13) missing answers. When the participants were asked if they would recommend the course to others, a high percentage answered positively: "applies completely" was 79.2% (n = 42), "rather applies" was 18.9% (n = 10), "does rather not apply" was 1.9% (n = 1), "does not apply" was 0%, and there were two missing answers. Likewise, most participants found that the content of the course was conveyed in an understandable manner: "applies completely" was 85.5% (n = 47), "rather applies" was 10.9% (n = 6), and there were two missing answers. Similarly, participants mostly stated that they had learned something new during the course: "applies completely" was 49.1% (n = 27), "rather applies" was 38.2% (n = 21), "rather does not apply" was 7.3% (n = 4), "does not apply" was 1.8% (n = 1), and there were two missing answers. When we correlated the answers to this question with medical competence, we found that medical staff were more likely to indicate a lower level of learning something new than non-medical staff (Kendall tau r = −0.36; *p* = 0.01).

### **4. Discussion**

**4. Discussion**  The Last Aid courses were well accepted and helped to reduce information deficits on care of the dying in a heterogeneous population of hospital staff, with mostly nonmedical staff attending. Participants indicated emotional preparation, the need for information on supportive services, and preparation for medical and nursing aspects of end-The Last Aid courses were well accepted and helped to reduce information deficits on care of the dying in a heterogeneous population of hospital staff, with mostly non-medical staff attending. Participants indicated emotional preparation, the need for information on supportive services, and preparation for medical and nursing aspects of end-of-life care as the most important learning goals.

of-life care as the most important learning goals. We encountered gender disparities as attendees were mostly female, which is consistent with gender distribution in hospice and end-of-life care, as well as the care for individuals with dementia [10,11]. The gender disparity was also seen in a multicenter-study from Germany, Austria, and Switzerland, which conducted Last Aid courses in the community setting with more than 5000 participants [12]. This study revealed that 88% of the participants were female and the median age was 56 years, which might indicate that people attending want to prepare for a caregiver role [12]. Despite changing social expectations, We encountered gender disparities as attendees were mostly female, which is consistent with gender distribution in hospice and end-of-life care, as well as the care for individuals with dementia [10,11]. The gender disparity was also seen in a multicenterstudy from Germany, Austria, and Switzerland, which conducted Last Aid courses in the community setting with more than 5000 participants [12]. This study revealed that 88% of the participants were female and the median age was 56 years, which might indicate that people attending want to prepare for a caregiver role [12]. Despite changing social expectations, females carry most of the caregiving at the end-of-life [10]. Within the context of a compassionate community, widespread Last Aid courses could—just like First-Aid courses—provide a low threshold learning opportunity that might facilitate involvement of men in end-of-life care and contribute to social change on the long run.

Interestingly, 30.9% of the Last Aid course participants had a medical background (physicians, nurses, or midwifes), although the curriculum is aimed at laypeople [12], and the courses were announced for non-medical staff on the hospital's intranet platform. This shows the importance and public interests in the subject of death, dying, and end-of-life care. Additionally, we speculate that the interest of medical staff in Last Aid courses could indicate deficiencies in the teaching of these subjects in the training of medical professionals.

Medical (in contrast to non-medical) staff were less satisfied with the course content. When asked if "they had learned something new", they answered with significantly lower ratings. As the Last Aid course curriculum was not designed for healthcare professionals, this finding is not surprising, but warrants an extended curriculum to meet their specific informational needs. Such a curriculum, comprising one full day with eight teaching units (each 45 min), was developed by Last Aid Germany, and is currently in the pilot-testing phase.

Furthermore, the amount of patient contact correlated with burden by death and dying. Current research gives special interest to frontline healthcare workers engaged in treating patients with COVID-19 who were at great risk of burdening symptoms of depression, anxiety, insomnia, and distress [13]; to our knowledge non-medical staff was not investigated. It is conceivable that also non-medical staff in hospitals feels burdened by death and dying especially during the COVID-19 pandemic. For medical staff, basic knowledge on palliative and hospice care is, nowadays, part of the curriculum (nurses, physicians, etc.), and advanced courses in specialized palliative care are offered in education programs. In contrast, there are no such offers for non-medical professions, even though many of them are confronted with seriously ill and dying patients (e.g., medical technologist, cleaning staff, and administration) [14]. Our results suggest that Last Aid courses are feasible to meet the informational needs in these professions. The Last Aid course curriculum addresses the core competencies recommended by the European Association for Palliative Care [15]. A recent study on online Last Aid courses for the public showed that it was feasible to hold the courses online. The results suggested that the online format enabled more people in a caregiver situation, as well as younger people, to attend [16].

Utilizing open questions, we identified and ranked reasons for participants to sign up for Last Aid courses. The three most important reasons were "preparation for emotional aspects in care of dying", "preparation for medical/care aspects in care of dying", and "knowledge of supportive services and facilities". All three aspects are covered by the Last Aid course curriculum, possibly explaining why the vast majority of participants would recommend the course to others. Future studies should investigate if meeting the informational needs could contribute toward reduce the burden of death and dying in non-medical staff with patient contact. Additionally, more research on the effects of Last Aid courses on a caregiver's willingness and capability to provide end-of-life care at home is needed.

In conclusion, Last-Aid Courses were feasible to meet the informational needs of non-medical hospital staff with high approval ratings while medical staff called for an extended curriculum.

**Author Contributions:** Conceptualization, E.M. and C.B.; methodology, E.M. and C.B.; formal analysis, E.M., G.B. (Georg Bollig), G.B. (Gerhild Becker), C.B.; writing—original draft preparation, C.B.; writing—review and editing, E.M., G.B. (Georg Bollig), G.B. (Gerhild Becker). All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding.

**Institutional Review Board Statement:** The survey was anonymous; participation was voluntary. Data are anonymous, no personal data were collected, and the data are not considered to be of sensitive or confidential nature. No vulnerable or dependent groups were included. Therefore, ethical approval was waived.

**Informed Consent Statement:** Informed consent was obtained from all participants involved in the evaluation survey. Participation was voluntary. By completing the survey, the participants consented to participate.

**Data Availability Statement:** The data presented in this study are available on request from the corresponding author. The data are not publicly available due to privacy restrictions.

**Acknowledgments:** We thank Bettina Couné for critical appraisal of the manuscript. We thank Michael Mueller, Brigitte Froeschen-Ludwig, Reiner Fritzsche and Ursula Rohrer for conducting the courses.

**Conflicts of Interest:** GBo receives financial compensation for Last Aid instructor courses.

### **Appendix A**

**Table A1.** Pre-Survey examples of answers to the question: "What were your goals and concerns before joining the course?" These can be professional or private concerns.

### **Preparation for emotional aspects in care of dying**


### **Preparation for medical/care aspects in care of dying**


### **Reduction of own anxiety and insecurity when dealing with the subject of death**


### **Knowledge of supportive services/facilities**

• My goal above all was, how to deal with relatives who are dying and what options one can get for support in care (e.g., palliative care).

### **Appendix B**

### **Table A2.** Questionnaire "Last Aid" Courses 3–5 (translated from German).


6. **Are you directly and regularly involved in the care and/or support of a seriously ill or dying person in your private environment?** O yes O no → if no, continue with question 7 ↓ **If yes, what is your relationship to the person? If yes, do you live in a flat with the person you care for and/or look after?** O no O yes **If yes, does the care and support affect your occupation?** O no O yes **If yes, in what way does the care/support affect your occupation?** 7. Whether you are currently caring for someone or not: **What support would you like to see from the University Hospital for employees caring for seriously ill relatives at home? How important are the following support options to you? Adaptation of working conditions very important rather important rather unimportant unimportant** Flexible working hours O O O O Short-term and flexible time off for end-of-life care O O O O More generous time off work in case of death O O O O Possibility of home office O O O O **Support** Palliative medicine competent contact persons here at the clinic (e.g., hotline) O O O O **very important rather important rather unimportant unimportant** Courses on the topic O O O O Possibility to exchange experiences (e.g., group meetings for exchange) O O O O Possibility of psycho-social support and relief O O O O **What other suggestions do you have?** 8. **How important were the following goals and issues to you before you came to the course?** These can be professional or private concerns. **very important rather important rather unimportant unimportant** Preparation for medical and nursing aspects of end-of-life care O O O O Preparation for emotional aspects of end-of-life care O O O O Reduce (my) fear and insecurity in dealing with the topic of death. O O O O Contributing to the social discussion on the topic of dying O O O O Knowledge about possibilities of support through special services and facilities O O O O **Other** 9. **Evaluation of the course content:** Please rate how you found the teaching of the different course topics. Tick one box for each topic. **Topic very good good not so good unsatisfactory** 1. Dying as normal part of life O O O O 2. Planning ahead and decision making O O O O 3. Relieve suffering O O O O 4. Final goodbyes O O O O **Assessment of the whole course** O O O O 10. **Please indicate to what extent you agree with the statements. strongly agree agree disagree strongly disagree** I have learned new things. O O O O The topics were taught in a comprehensible way. O O O O I will recommend the course to others. O O O O 11. **Age:** 12. **Gender** O male O female 13. **Comments**

**Table A2.** *Cont.*

Not all results of this survey are reported in the publication.

### **References**


## *Article* **Last Aid Course—The Slovenian Experience**

**Erika Zelko 1,2,\*, Larisa Vrbek <sup>3</sup> and Melita Koletnik <sup>4</sup>**


**Abstract:** Educating and raising awareness among lay members of the public about palliative care can significantly improve the care for terminally ill patients and their quality of life. This paper reports on the survey aimed at assessing the experience and expectations of participants in the Last Aid course launched in Slovenia in 2019 to train hospice volunteers and promote dialogue on death and dying. The course implementation was supported by materials prepared, translated, and/or adapted from German under the PO-LAST project, which linked Slovenian medical and healthcare professionals, hospice representatives, and university students. The Last Aid course follows an international four-module curriculum that has been successfully applied in 18 countries so far. In Slovenia, the course was delivered 30 times with 21 in-person deliveries and 9 online events attended by 450 participants of different sexes, ages, and professions. The surveyed population included 250 people who returned the evaluation questionnaires by October 2020. The aim of the analysis was to gain insight that can be applied broadly in future work and research on adult education on palliative care and the erasure of death-related taboos.

**Keywords:** palliative care; education; lay public; Last Aid course

**Citation:** Zelko, E.; Vrbek, L.; Koletnik, M. Last Aid Course—The Slovenian Experience. *Healthcare* **2022**, *10*, 1154. https://doi.org/ 10.3390/healthcare10071154

Academic Editors: Paolo Cotogni and Ingalill Rahm Hallberg

Received: 4 May 2022 Accepted: 16 June 2022 Published: 21 June 2022

**Publisher's Note:** MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

**Copyright:** © 2022 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https:// creativecommons.org/licenses/by/ 4.0/).

### **1. Introduction [**

Globally, life expectancy has been steadily increasing over the past two centuries. Based on the latest United Nations Population Division Estimates [1] the average life expectancy at birth in 2022 amounted to 73.2 for both sexes and was the highest in developed eastern and western countries, e.g., Hong Kong with 85.3 or Switzerland with 84.7 years. Driven by increases in life expectancy and by falling fertility rates, the world population is aging at an accelerated pace. If, a few decades ago, the most common cause of death in the developed world was infectious disease, today, it is noncommunicable illnesses, such as heart disease, stroke, cancer, and diabetes, which according to the WHO data [2], collectively accounted for more than 70% of all deaths worldwide—even during the recent COVID-19 pandemic.

In modern society, death is an important process. However, talking about death is still painful and agonizing for most people [3] and commonly referred to by negative metaphors, e.g., "a foe to be conquered" or the "loss of the battle", frequently resulting from the long "war against disease" [4]. Moreover, in our consumer society, death is often marginalized [5] and placed outside the confines of our everyday existence.

A similar, uneasy status is attributed to palliative care, which is regularly conceptualized as specialized (medical) care that supports the patients diagnosed with life-threatening and terminal illnesses, provides relief from pain and other symptoms, and aims to improve the quality of life for both patients and their families "by means of early identification and impeccable assessment and treatment of pain and other problems" [6]. Palliative care is a holistic approach that actively addresses an individual's total needs—physical, psychological, social, and spiritual suffering of patients and psychological, social, and spiritual

suffering of family members—and should be based on good teamwork and collaboration between its providers [7]. Among the general public, there is substantial misunderstanding of and lack of awareness about palliative care [8], and lay people are frequently unaware of its fundamental principles. Consequently, palliative care is underused [9,10]. A terminal or life-threatening illness is an illness or condition which cannot be cured and is likely to lead to someone's death [9]. End-of-life care is defined as support for people who are in the last months or years of their life [11,12]. Last Aid comprises both palliative and end-of-life care, and offers support to patients who need long-term care or palliation to the very end of their lives, in life situations where death is known to be close, and in the dying process.

Greater public awareness, education, and training, on the other hand, support the implementation of palliative care. These elements positively affect people's quality of life and contribute to wider acceptance of death as a natural part of life [13].

The idea of a Last Aid course and a public knowledge approach to palliative care were first described by the future emergency care physician and consultant Georg Bollig in the late 2000s. The original aim was to discontinue the discourse on death and dying as a taboo within many communities and to teach the public about palliative care. Consequently, the course educates participants about palliative and end-of-life care, while at the same time, it provides information on how and where to obtain help from professionals and the local community. The Last Aid course is modelled on the First Aid course because Last Aid should be considered as important as first aid, with which we all have been acquainted at some point in our personal or working lives [14].

On the other hand, we know little about dying and death, although at some time, we all will be faced with the process and the transience of our loved ones or ourselves. End-of-life care, when partnered with community efforts to provide support and care for death, dying, and loss, leads to the establishment of compassionate communities, as described by Kellehear [15], whose members can participate in the provision of palliative care within the limits of their skills and abilities [16].

The recent COVID-19 pandemic exposed the vulnerability of the individual, e.g., to mental health problems [17,18], and of the society, e.g., to highly disrupted rehabilitation services, including the delivery of specialist palliative care [19]. Developing truly compassionate communities which can face illness, death, and bereavement as part of the life cycle and preserve human dignity to the very end helps build resilience on the personal and the societal level, with all members contributing to the best of their ability to the good of all.

### **2. Barriers to Palliative Care, Compassionate Communities, and the Last Aid Course**

The barriers to accessing palliative care are very well-known, and the policy reports describing them keep emerging. Very often, relatives who need to care for a loved one diagnosed with a life-threatening and/or terminal illness face a crisis. Dionne-Odom et al. [10], e.g., reported that more than one-half of unpaid family caregivers in the US caring for relative with a medical, behavioral, disability, or other condition had never heard of palliative care. Even among those who had, most had not distinguished it from hospice care and death. Based on their findings, authors appealed for more awareness of palliative care among the lay public, focusing on the needs of the patient and their family. Further to this, Bollig [16], acknowledged an urgent need to educate nonprofessionals in palliative care and end-of-life care. The involvement of lay people in palliative care is necessary and important for several reasons, which range from demographic changes, increasing numbers of elderly suffering from chronic diseases, and a shortage of care professionals, to changes in family structure and the preservation of human dignity of the dying.

Nevertheless, raising public awareness on such a difficult subject requires a subtle approach. Compassionate communities, pioneered by A. Kellehear in the mid-2000s, are perfectly positioned to achieve this by placing palliative care within everyone's responsibility [15]. Compassionate communities are defined as naturally occurring networks of support in neighborhoods and communities, surrounding those experiencing death, dying, caregiving, loss, and bereavement [20]. They are formed around a group of people who are

concerned about the quality of life of the community's members and play a much stronger role in the care of both people at end-of-life and their families. However, compassionate communities represent only one of the four pillars that comprise palliative and end-of-life care. The others are specialist palliative care, i.e., a medical specialty within medical and nursing training programs; generalist palliative care, i.e., care at the end-of-life that is not provided by specialist palliative care teams; and civic end-of-life care offered or rather supported by, e.g., schools, workplaces, or churches. Their effective coordination contributes significantly to access to palliative care and the wellbeing of the terminally ill [20].

In their recent article, reimagining access to palliative care, Abel, Kelleher, Mills, and Patel added that "the community itself must become part of the palliative care offer/provision to help regulate and mediate its own internal differences and services". This should go beyond merely volunteering toward recognizing that every citizen has a role to play in palliative care, thus allowing that community engagement evolves into "community development and self-provision (changing the power dynamics)" of end-of-life care [21].

An important achievement supporting the objective that palliative care become everyone's responsibility is the Last Aid course, a recent course concept for educating the public about palliative care. It is based on the premise that knowledge about palliative care should become part of public education, which is frequently very limited or totally absent in most communities [16], and relies almost exclusively on personal experience as the main source of information [22]. Stemming from the idea presented by Bollig, the course encourages public discourse on taboo topics of death and dying and educates the lay public about them [13,16,23].

The method pursued by the Last Aid courses is a combination of situated learning, which is conditioned by interaction between participants and builds on prior knowledge and experience [24], and of community of practice, where participants with similar interests are brought together to improve their knowledge for practice and future action [25].

The course follows a public knowledge approach and consists of four modules: Care at the End of Life, Advance Care Planning and Decision Making, Symptom Management, and Cultural Aspects of Death and Bereavement. Comparable to the Chain of Survival in emergency medicine, the Chain of Palliative Care is used to visualize the networks of palliative care in a community. The Chain, presenting the cooperation between nonprofessionals and healthcare professionals in palliative care, establishes a link to Kellehear's pillars that make up palliative care, and the public knowledge approach centered on widespread education of the lay public aims to change attitudes and behaviors in the community in the direction of a more positive attitude toward participating in palliative care.

It is important that the course be adapted to the cultural diversity and constraints of the environment. Thus far, localized versions of Last Aid courses have been implemented and well-received in several countries including, e.g., Australia, Ireland, Brazil, Switzerland, Scotland, Germany, and Denmark. Furthermore, 99% of Last Aid course participants say they would recommend them to others [26].According to them, the course contributes to improving the discussion about death and dying in families, at the workplace and elsewhere. The participants' overall response has been thus very positive [27]. A special edition of the Last Aid course was recently developed to address bereaved children and teenagers. A pilot study showed it was met with a positive response and proved that most children and teenagers want to talk about death and dying [28].In total thus far, Last Aid courses have been attended by over 26,000 people, and more than 2000 Last Aid trainers have been educated to implement Last Aid activities in their local communities [16].

### **3. Organization of Palliative Care in Slovenia, Last Aid Slovenia, and the PO-LAST Project**

In Slovenia, the strategy for palliative care is set out in the National Program for Palliative Care [12].The plan requires all hospitals to provide from 10 to 15 beds for palliative patients, depending on the demographic and socio-economic profile of the region where the hospital is located. Consequently, the two main medical centers in Ljubljana and Maribor have two separate palliative care wards, while smaller hospitals provide individual palliative care beds. Additionally, the hospice house *Hiša Ljubhospica* was built in 2010 in Ljubljana, and six mobile palliative care teams attend to palliative care cases throughout the country. Nevertheless, most patients in need of palliative care are cared for by palliative care nurses and family doctors. Some are placed in nursing homes or have home caregivers. No official data on how many patients receive palliative care in Slovenia are available, but it is estimated that some 20% of those in need of palliative care also receive it [29].

The first edition of the Last Aid course was organized in 2019 by the Institute for Palliative Medicine and Hospice Care at the University of Maribor's Faculty of Medicine Maribor. Since then, it has been delivered, in cooperation with the Slovenian Lions clubs and the Slovenian Hospice Association, twenty-five times over a period of two years, with five deliveries taking place online during the COVID-19 pandemic. A special online course (webinar) was developed for the deaf and hard of hearing using sign language so that an even more diverse population could be reached. To allow for unimpeded interaction and active participation, the number of participants did not exceed 15 per delivery. The professional profiles of the participants included, e.g., medical and healthcare students and practitioners (nurses and physicians), teachers, social workers, business professionals, lawyers, engineers, priests and nuns, homemakers, and people without current employment.

The course implementation was supported by materials prepared, translated, and/or adapted from German under the Slovenian government-financed Assistance for a Better Quality of Life in the Last Phase of Life (PO-LAST) project, which connected Slovenian medical and healthcare professionals, hospice representatives, and university teachers and students. The Slovenian Hospice Association and University of Maribor's Medical Faculty and the Faculty of Arts cooperated with the project, as well as Alma Mater Europaea, an independent higher learning institution.

The main objective of the project was to provide information and/or access to information for people with life-threatening illness and their caregivers, which would also be of use for the implementation of the Last Aid course. The thirteen project members (1) prepared the Slovenian Atlas of Palliative Care [30], dealing with support options and information sources for the terminally ill and their caregivers; (2) translated the manual for Last Aid instructors from German into Slovene and adapted the content for the Slovenian context; (3) prepared a brochure with essential information on palliative care in Slovenia; and (4) organized and implemented dissemination workshops. The four-month project was successfully concluded in June 2020. All materials that were produced during the project support the implementation of Last Aid courses in Slovenia, which have been, thus far, received extremely well by the participants, as is detailed below.

### **4. Methods**

To gain a more in-depth insight into the implementation of the Last Aid course in Slovenia, we decided to analyze the participants' responses in 2021. Our overarching research question was to investigate their experience and to identify suggestions for improvement of the course. For this purpose, we used the pre-prepared international Last Aid questionnaire with open-ended and closed-ended questions. The used tool was a validated questionnaire including both quantitative and qualitative data, which has been previously used in Germany, Switzerland, and Austria [27]. The questionnaire was administered to our participants immediately after the course, irrespective of whether it had been held online or in-person, and it was sent or given to them with documents confirming their participation on the course. In total, 386 questionnaires were distributed personally or sent out by e-mail, of which 250 were returned. The response rate was thus 64.7%. The nonrespondents were not analyzed, and we cannot speculate or draw any conclusions about the reasons why the questionnaires were not returned. All participants were informed that participation in this evaluation was voluntary and that they could choose not to complete the questionnaire if they did not want to. Data were collected from June 2019 to December

2021.The questionnaire was divided into three sections. The first section included four closed-ended questions evaluating the total course as well as individual modules on a 5-point rating scale. The second section summarized personal reflections of the participants and consisted of two open-ended questions and four yes or no questions exploring the participants' understanding of the specific topics covered in the course, while an additional open-ended question elicited the "highlights" of the course and suggestions for future work. The third section collected the participants' demographic data. Our sample was limited with the available resources. Thus, we are aware that the participants of the course and of our study do not constitute a representative sample of the entire Slovenian population and cannot be immediately generalizable to the entire population. However, we believe the number of respondents to be large enough to give the data validity and attention. The advertising for the course was interest-based (e.g., to hospice volunteers and healthcare providers), and we used chain referral. Registration and attendance were voluntary, and the size of individual course groups was limited to 15 participants as recommended by Last Aid International.

We used descriptive statistics combined with qualitative analysis of the open-ended questions to investigate the data obtained. Included in the analysis were 250 questionnaires: 243 were fully answered and 7 were missing one answer, but we nevertheless considered these relevant and included the answers in the analysis of the relevant sections. The coding of qualitative answers was carried out by three independent researchers. For quantitative answers, statistical significance was assumed at the *p* < 0.05 level. Descriptive answers to open-ended questions were qualitatively thematically analyzed to identify, analyze, and report themes, i.e., patterns, within the data. A cumulative understanding of the results was created by identifying themes and patterns and organizing them into categories. We believe that the methodological conditions (qualitative and quantitative) guarantee the overall quality of the study in terms of internal validity (risk of bias), external validity (generalizability), and reporting quality. The quantitative and qualitative results are mutually supportive, and it is our belief that they will contribute to the further improvement of the Last Aid course and deliver suggestions for advancement to the Last Aid International group, which is responsible for the international course development and quality.

### **5. Results**

Table 1 below shows basic course participants statistics.


**Table 1.** Last Aid participants—sociodemographic data.

Table 2 presents participant ratings for the entire course and for the individual modules. In relative terms, most participants rated both the entire course (87.7%) and individual modules (more than 75% for all modules) as "excellent" (5).


**Table 2.** Participant ratings for the course and individual modules.

SD—standard deviation

Based on the age of the participants, we defined three age brackets: young (under 35), middle-aged (35–64), and elderly (65+). We used these to compare the participants' evaluations of the overall course and the individual modules to establish any age-based differences. Table 3 presents the ratings by age bracket. The results showed that satisfaction both with the course as a whole and with individual modules was highest among middleaged participants, who on average assessed the course better than the young or the elderly.

**Table 3.** Participant ratings by age bracket.


\* Indicates statistically significant values at *p* < 0.05.

On average, female participants rated the entire course better than their male counterparts (4.89 vs. 4.69). The average grades for individual modules also differed by sex and its represented in Table 4.

Given the very limited number of participants with primary education (only three), we subsequently created only two categories to analyze education-based differences in satisfaction with the course: secondary or lower education, and higher education. The average scores showed that better educated participants rated the total course more favorably than those with less education (4.86 vs. 4.83). However, these differences were small and not statistically significant. The results were similar with regard to the individual modules. On average, the more educated participants rated the modules higher than the participants with a high school degree or lower. The most significant differences in participants' average scores by education category were found in relation to Module 2 (Advance Care Planning and Decision Making) (0.12), and the least significant in relation to Module 3 (Symptom Management) (0.03). The difference for Module 1 (Care at the End of Life) amounted to 0.06 and for Module 4 (Cultural Aspects of Death and Bereavement) to 0.07.


**Table 4.** Participant ratings (the entire course and individual modules) by sex (Mann–Whitney U test).

\* Indicates statistically significant values at *p* < 0.05.

A total of 185 (72.5%) participants answered the open-ended question about which topic particularly spoke to them, what they missed from the course, and their opinion about it. The results are represented in Table 5.

**Table 5.** Thematic analysis of open-ended questions—results.


After conducting a detailed thematic analysis, the following two themes were identified: time, with participants' comments related to different periods of taking care of patients diagnosed with a life-threatening and/or terminal illness, and suggestions for improvement of the course in Slovenia. The responses were grouped into the following categories: (1) period before death; (2) period after death; and (3) support for the bereaved and perceived needs as the disease progresses. The second theme, suggestions, included the following categories: ethical and cultural aspects, regular education, spirituality, and children. Almost a quarter of participants (23.1%) suggested that such courses should be held more frequently or on a regular basis to raise awareness and educate people. The following two salient statements testify to this: ". . . the topic should be taught in secondary schools, e.g., in the school of nursing . . . " (No. 135) and "A lecture that makes you realize there are more important things in life because too often we don't realize that death is part of life, and we don't learn enough about it at the faculty" (No. 101). Additionally, the participants recognized the benefits, quality, and usefulness of the course, with over 99% of them writing that they would recommend it to their friends. Other interesting ideas and suggestions were advanced by the participants in regard to the future implementation of the course. "There is too little talk about the subject; when my relative was dying in hospital, I didn't know where to turn for information, all [I got] referred to his medical condition. To spread the news about the course in the community" (No. 123). Other

participants suggested an "upgrade and expansion of the module" (No. 10) on how to "communicate with aggressive relatives, and more [information] on spiritual care" (No. 54). Finally, combined quantitative and qualitative results showed that the Last Aid course was useful for the participants, with almost 95% of them confirming that they had heard and acquired new information and knowledge.

### **6. Discussion**

Palliative and hospice care education initiatives, such as the Last Aid course, are needed to increase awareness of and reduce misperceptions about palliative and end-of-life care conceptions and services reported by more researcher [8,31–33]. The introduction of the Last Aid course in Slovenia, supported by materials prepared by the PO-LAST project, has aimed to achieve just this.

In terms of general population statistics, statistically significantly more women attended the course (Table 1), which was expected. In Slovenia, women are more likely to be employed as health and midwifery care professionals and health and midwifery care assistants. According to the data of the Statistical Office of the Republic of Slovenia, at the end of 2019, "87.5% of nursing and midwifery professionals were women and only 12.5% were men, while 82.5% of associate professionals were women and 17.5% were men" [34]. In average all participants rated the course and the modules very positive (Table 2). Statistically significantly more higher-educated participants and those aged between 35 and 64 were more satisfied with the course (Tables 3 and 4). According to Slovenian statistic agency, 24.5% of Slovenians are higher educated. Adapting the course in an easy language may help to reach less educated people. In particular, the modules Care at the End of Life and Advance Care Planning and Decision-making showed a slight positive deviation from satisfaction with other course modules as reported by participants. Further research is needed to account for this difference. The structure of the participants and their responses are not surprising in relation to international research, which shows that also informal caregivers are most often middle-aged women [35–37].

As presented above, the evaluation of the course by the participants showed a high level of satisfaction with both the content and the delivery of the course. The average rating of the total course was "excellent" (5) as evidenced by 87.7% of the returned questionnaires. Moreover, 75% of the questionnaires also rated individual modules as "excellent" (Table 2). Socializing and sharing of personal experience on the course were seen as a major benefit of the course by our participants. They also gave interesting suggestions and orientations for future work. Similar results have been reported by researchers in other countries, e.g., Germany, Denmark, and Switzerland, as described by [26]. Furthermore, in line with results from other countries, the Slovenian participants advised expanding some of the currently addressed topics and organizing courses in schools [28]. Based on this, we can assume that in Slovenia, there is growing recognition of the need to "normalize" death and to provide opportunities for individuals and communities to recognize death and dying as a social process, in line with observations made by Abel and Kellehear [38]. The need to educate the public about palliative and hospice care and to increase public awareness of and reduce misconceptions about the topic were also reflected in our participants' qualitative answers, which included, e.g., the appeal to "spread the news about the course in the community". Their opinion corresponds to the recent findings by Zelko and her colleagues in the Slovenian context that, in order to widely implement palliative care in Slovenia, the awareness of and education about palliative care need to be improved [39]. Consequently, if we want to successfully raise awareness of this topic, which is still too frequently taboo, we need to find ways to reach out to the lay public and involve them in the process of exchanging views and information. "Cultural interventions" such as Death Cafés [40], and intensified promotion of palliative care by healthcare providers and education about death and dying, as well as the creation of truly compassionate communities [41], are all examples of strategies that aim to jointly encourage individuals and communities to reflect on death and respond to end-of-life issues. Another promising example of good

practice is the Japanese educational program using stories as a primary learning tool, which showed that it is possible to deepen understanding among the lay public of the concept of end-of-life care through a narrative [9]. It is important that palliative care education initiatives be adapted to the cultural context of the environment where they are delivered, as highlighted by, e.g., Shen et al. [42], Isaacson [43], Hayes et al. [11], or in the Australian context by McGrath and Holewa [44]. The particulars for such adaptation, also in the Slovenian context, include the institutional and legal framework(s), organization of palliative care, and the level of public awareness of palliative care, as discussed above. In terms of palliative care organization, McGrath and Holewa [44], highlight the following important factors: equity (equal access); autonomy and empowerment (respect for the patient's choice); trust (recognition of and respect for the historical context, and empathy during the provision of care); humane approach (non-judgmental care with an emphasis on quality of life and choice for patients and their families); high quality of care (involvement of a multidisciplinary team of healthcare professionals and community-based organizations working together throughout the care pathway); emphasis on living (rather than dying); and honoring of cultural identity (respect for cultural practices, beliefs, and lifestyle). Thus, even though some steps have been undertaken in this direction, including through the Last Aid course and the PO-LAST project, much still needs to be done in Slovenia. Therefore, a key future challenge for the implementation of the Last Aid course in Slovenia is to take greater account of the country's socio-cultural diversity, which stems from the fact that the course has been developed in an international environment. Consequently, an important objective is to pay more attention to the needs of individual local communities. In the past, the importance of responding to local needs was highlighted by both international [43,43]. and Slovenian researchers [45]. The need for greater socio-cultural diversity in the delivery of the Last Aid course in Slovenia is also reflected in the fact that we were unsuccessful in attracting course participants with lower levels of education and representatives of minority ethnic groups (e.g., the Roma ethnic community).

### *Limitations of the Study*

Selection bias could be one limitation of the study since all informants chose to participate in our course voluntarily. The fact that informants were asked about their opinion directly after the course limits the recall bias, but it does not provide any information about the impact of the course on the provision of palliative care. We also did not reach people with lower education, possibly partly due to the pandemic, which led to altered formats and delivery modes of the course, and partly due to rather limited advertising opportunities in local communities. However, the data we were able to analyze are interesting not only because of the extremely positive evaluations of the course but also because of the suggestions for organizing future discussions and training on this topic.

### **7. Conclusions**

The Slovenian Last Aid experience is comparable to that reported by countries where the course had been previously organized. In all those countries, the course has raised awareness among the lay public about death, dying, and palliative and end-of-life care. In Slovenia, the courses were extremely well-received and favorably rated, with participants lauding both content and delivery. However, the pandemic has impacted the in-person experience and encouraged new, web-based formats. We are aware that, in the future, it may be necessary to develop standards for online delivery of the course and to ensure that this is promoted in different communities and considers the socio-cultural diversity of the local environment. Socio-cultural diversity is a part of the Slovenian reality, and this has to be taken into account when preparing community education programs [46].

Nevertheless, the adaptation to Slovenian cultural requirements with information from the local communities was supported by materials prepared by the PO-LAST project, which entailed cooperation among Slovenian medical and healthcare professional, hospice volunteers, and university students. We are convinced that this work has also contributed

to the excellent acceptance of the Last Aid course by the Slovenian community, but we are aware there is still a substantial amount of work to be done.

**Author Contributions:** Conception and design: E.Z. and M.K.; collection and assembly of data: L.V. and E.Z.; data analysis and interpretation: E.Z., M.K. and L.V.; manuscript writing: E.Z., L.V. and M.K. All authors have read and agreed to the published version of the manuscript.

**Funding:** PO-LAST Project (part of the study), was founded and supported with EU Grands and Ministry for Education, Research and Sport Republic Slovenia.

**Institutional Review Board Statement:** For this study we did not need the approval of Institutional Ethic board. On 2 September 2021 we receive that written statement.

**Informed Consent Statement:** Informed consent was obtained from all subjects involved in the study.

**Data Availability Statement:** The data presented in this study are available on request from the corresponding author. The data are not publicly available due to (language of it).

**Conflicts of Interest:** The authors declare no conflict of interest.

### **References**

