Abstract
Background:
Severely ill patients often express a desire to die, which can turn into suicidality. To support health professionals in managing this issue, we initially created a two-day face-to-face training to enhance self-confidence, knowledge, attitudes, and skills. Due to the increasing need for more accessible formats, we aimed to transition this training online and develop a complementary website.
Methods:
Multimethod approach to develop and evaluate an online training and a website on dealing with the desire to die in palliative care in Germany. This involved: (1) reviewing literature on effective didactic elements, (2) digitalizing the face-to-face training and creating the website with ongoing expert feedback, and (3) piloting and evaluating these resources through online surveys.
Results:
We retrieved suggestions for the development of online trainings and websites from n = 39 publications. Through these results and expert discussion, an online version of our training and a website were developed. For evaluation, we conducted two trainings (face-to-face (n = 8) and online (n = 19)) with multiprofessional participants. All improved significantly in self-confidence after the training without differences between online and face-to-face training. Website evaluation of usability, comprehension, information quality, presentation, and sustainability by n = 71 users yielded favorable feedback with improvement suggestions for structure and plain language.
Conclusions:
Dealing with the desire to die can be taught not only face to face but also through online training and an educational website. This can ensure low-threshold access to scientifically sound information and training units for those health professionals confronted with the desire to die.
Background
Patients with severe and life-limiting disease regularly report desires to die. As terminology and assessment vary, prevalence is hard to establish. 1 A recent study found that 12% report such desires as temporary and 10% persistent. 2 We apply a wide definition of desire to die along a continuum of increasing suicidal pressure to act. Our definition encompasses the acceptance of death, life satiety, and tiredness of life, as well as the (hypothetical) wish for hastened death and (in extreme forms) suicidality or the wish for (assisted) suicide. 3 The quality and intensity of desires to die are prone to change over time and across situations. 4 It may even be accompanied by a concurrent will to live.3,5 Desire to die is impacted by various physical, psychological, social, and spiritual factors such as depression, pain, or reduced quality of life. 1
Health professionals in palliative and hospice care are often confronted with patients’ desires to die and report a rising need for support in dealing with the topic. 6 To address this demand, we developed a multiprofessional training curriculum. 7 Our two-day face-to-face training promotes theoretical knowledge, communicative skills, and self-reflection regarding desire to die. It also addresses the aforementioned impacting factors on the desire to die and respective interventions. The evaluation of the training yielded a stable increase of self-confidence in dealing with the desire to die even one year after participation. 8 The training is still in high demand.
Objective
Despite the high demand, attending a two-day face-to-face training is difficult to realize for many due to the high demands on personnel resources in palliative and hospice care.
9
Additionally, legal regulations during the COVID-19 pandemic temporarily outlawed face-to-face events. To address these shortcomings, we pursued two objectives:
Providing our trainings online to be more accessible for multiprofessional palliative care providers Developing a website for low-threshold self-study with engaging and informative content on dealing with desire to die
Design
The online training and website to be developed are based on an existing two-day curriculum containing six units: 1. Exchange about Professional Practice, 2. Attitudes, Norms, and Values, 3. Scientific Perspective and Clinical Approach, 4. Reflection on Dealing with Desire to Die, 5. Dealing with Desire to Die—Practical Exercise, and 6. Self-Care.
7
For digitalization and website development, we assessed content, didactic, and design elements of digital education formats for dealing with desire to die in palliative and hospice care. Our multimethod approach included:
Literature search to gather relevant evidence of existing online formats Digitalization of the training and website development, accompanied by constant expert discussion within the project team Piloting and evaluation of the two developed (online) trainings and the website
Literature search
In PubMed, we combined key terms related to desire to die and online formats. Identified publications underwent title–abstract screening and suitable publications were subsequently fed into an EndNote library for categorization of themes. 10 The complete texts of categorized publications were examined in terms of development, conduct, and evaluation of digital education formats.
Digitalization of the existing training and website development
Throughout the study, the project team supervised the implementation of results from the literature search for training digitalization and website development. This group consisted of n = 6 experts (course instructors of the existing training and research staff) representing expertise in medicine, nursing, psychology, social sciences, teaching, and training as well as palliative care. The project team discussed and consented all adaptations of the developed trainings. For the website development, expertise from the previous implementation of an online platform for research data regarding Health Services Research was incorporated as well. 11
Piloting and evaluation of the developed online training and website
To explore the effects of the digitalized desire to die training on participants, we planned two multiprofessional trainings: one face-to-face and one online, including the same content and comparable didactic methods. The corresponding website on dealing with desire to die was to be developed as part of the University Clinic of Cologne’s main website, to accommodate its regulations and to ensure sustainability.
Measurements
For evaluation, a questionnaire on self-confidence in dealing with the desire to die was handed out before (t0) and right after (t1) the two trainings. 7 The self-developed questionnaire contains 22 items on knowledge, skills, and attitudes regarding desire to die. For the online training, we transferred the questionnaire into an online survey using the platform LimeSurvey. Open questions at t1 were added to access participants’ views on the suitability of the online format.
For website evaluation, we also developed an online survey using the platform LimeSurvey. Based on results from the literature search on website development, we utilized items from existing questionnaires to cover the dimensions of interest, usability, comprehension, information quality, presentation, and sustainability.12–14
Ultimately, the online survey comprised 20 items on a 7-point Likert scale.
12
Additionally, seven open questions allowed to gathering deeper information for further development. Except for question 7, all open questions were only triggered if participants rated the respective quantitative item 3 (“tend to disagree”) or less:
What would you like to change about the existing website? Have you had any difficulties using the website? Why do you find the information on the website (rather) of poor quality? Why do you find the information on the website (rather) untrustworthy? What form of presentation would help you to better understand the content? Why would you not want to use the website in the future? Is there anything else we have not addressed that you would like to add?
Age, gender, belonging to the group of professional/volunteer/informal caregivers, as well as the electronic device used to access the website, were assessed as basic sociodemographic data.
Results
The literature search and project team discussions yielded a pool of information that could be used for developing an online training format and a website. The implementation of results focused on applicability in the given context.
Literature search
In July 2021, we identified n = 70 publications with our search strategy. After title-abstract screening, we included n = 38 for full-text screening, both by two authors (K.B. and T.D.). Full-text screening included another publication added through hand searching, 12 as well publications on criteria as well as two quantitative scales for evaluation of educational websites.13–18 No existing online training on desire to die was identified. We summarized the results on development and conducted online education formats in Table 1.19–50
Summary of Literature Search Results on Development and Conducting of Online Education Formats
Evaluation criteria exist for: (1) user satisfaction (efficiency, attractiveness), (2) quality of video material, (3) quality of online material, as well as (4) usage time.13,14 Based on these and with the inclusion of items from the Federal Center for Health Education (BZgA) toolbox identified by handsearching, 12 we developed a questionnaire to evaluate our educational website (see Appendix Table A1).
Digitalization of the existing training program
The project team held three meetings to elaborate a strategy for digitizing the curriculum of the two-day training utilizing the results of the literature research. Subsequently, a concept for (online) training on dealing with the desire to die and a corresponding website was developed.
The current course curriculum was adapted for an online conduction. Using the communication platform Zoom, 51 all six original education units could be digitized. For structure and the used didactic approaches of the online training, please see Figure 1.

Structure and used didactic approach of the online training, based on the original six training units1.
Results from the literature search that were implemented include recommendations concerning technical tools (video conference, chat tool and reactions, “breakout rooms”) and teaching methods (case vignettes, role-play information, publications, and presentations). This multimedia and multimethod approach was selected because it most closely resembles the interaction possibilities of our original training. Results from Table 1 that were rejected by the project team due to impracticability (e.g., due to financial and timely limitations) include didactic goals of the AVIVA-rationale, 15 inclusion of analog media, networking via other channels, and networking for participants.
Development of a low-threshold website
To provide low-threshold access to the desire to die knowledge, an educational website was created (accessible via palliativzentrum.uk-koeln.de/umgang-mit-todeswuenschen). A self-study area provides information about desire to die, and there are information and registration options for various training formats.
Besides information on all six content units of the original training curriculum presented for self-study, two new topics were added: a self-study unit for informal caregivers provides material and information as well as contact addresses of hospice associations and self-help groups. Another self-study unit explores the role and special availabilities of hospice volunteers. These topics were added due to the special demand by participants of previous trainings. For structure and used media of the final website, please see Figure 2.

Structure and used media of the developed website, based on the original six training units.
Implemented results from the literature search include recommendations on media: all units used text and videos or informational graphics, such as interviews with experts from the research team and slides with voice-over. The project team finalized the website’s layout and language through multiple rounds of internal feedback. To guarantee lay comprehension, an external media communication agency also revised the website texts. These technological tools were used to counter text heaviness and promote engagement with the website.
Piloting and evaluation of developed online training and website
Evaluation of the online training
To evaluate the developed online desire to die training, two training courses were held for multiprofessional palliative care providers: a two-day face-to-face training with n = 8 participants employed at a local interdisciplinary palliative care center and a structurally identical two-day online training with n = 19 multiprofessional participants working for an ambulatory palliative and hospice service in home palliative care. Table 2 shows sociodemographic information of participants of the two conducted trainings.
Sociodemographic Data for All Participants of the (Online) Multiprofessional Trainings
Multiple answers possible.
All participants who chose the “informal caregiver” option also chose another profession as a primary option.
Participants of the face-to-face and online trainings completed the evaluation questionnaire before and directly after the training. 7 As mean values were not normally distributed (Shapiro–Wilk test up to p = <.001), we carried out a Wilcoxon test to compare mean values. Mean values and standard deviations of all items can be found in Table 3.
Mean Values and Standard Deviations (in Brackets) of All Items at t0 (Before Training) and t1 (After Training) for the Face-to-Face and Online Trainings of Multiprofessional Palliative Care Providers
Significant with p ≤ 0.05.
Bold data is significant with p ≤ 0.05.
Multiprofessional palliative care providers showed significant improvement between t0 and t1 after both trainings, in 4 and 6 of 22 items, respectively. In this small sample size, we exploratorily tested for differences and found no significant differences at t0 and t1 between the face-to-face and the online training group.
Participants of the online training were asked to answer open questions regarding the suitability of the digital format. Answers were predominantly positive, emphasizing the “broader access”. Regarding content, participants reported ambivalent requests regarding information on the topic of assisted suicide (“Go into more detail about assisted suicide and give some examples.” and “A little less assisted suicide, more ‘simple’ desires to die”).
Website evaluation
The website link was sent to mailing lists of stakeholders already known to the research team with a request for evaluation. With two reminders, overall, 244 interested parties could be contacted (individuals and mailing lists). They were asked to share the website and the invitation to evaluate it via their networks.
A total of n = 71 participants completed the online survey consisting of open and closed questions. The vast majority visited the website via their PC (n = 56; 78.9%), few used a tablet (n = 4; 5.6%), or smartphone (n = 8; 11.3%). Participants were mostly female (n = 55, 55.5%), ages varied between 18–39 years (n = 10, 15,4%), 40–59 years (n = 33, 50.7%), and 60 to over 70 years (n = 22, 33.9%). Most participants reported to work as a professional in palliative and hospice care (n = 55, 79.5%), with only a few being volunteers (n = 14, 20.3%). No one reported to be an informal caregiver.
In a range from 1 “very good” to 5 “inadequate,” users rated the website with an overall mean grade of 2.24 (SD = 1.2). For mean ratings on all items of the five dimensions usability, comprehension, information quality, presentation, and sustainability on a Likert-scale from 1 “completely disagree” to 7 “completely agree,” please see Table 4.
Mean Ratings with Standard Deviations of All Items from the Online Survey on Website Evaluation
M, mean; SDs, standard deviations.
A few participants (n = 13) used the possibility to give feedback on the open-ended questions. Repeated requests concerned an even more visibly structured layout [“Use subheadings (especially on the introductory page)”] as well as an easier language for laypeople (“I wish for paragraphs or the whole website written in easy language”). A few users expressed confusion upon the connection to and corporate design of the official website of the University of Cologne, claiming that “it is not logical or helpful”. All in all, most open feedback emphasized the value of the data provided and gave suggestions for further improvement, e.g., by adding further topics such as the desire to die in old age or in children and youth.
Conclusions
International legal trends increasingly support a liberal approach to assisted suicide, 52 making it essential for health professionals to effectively address patients’ end-of-life desires. Following a two-day training we developed, health professionals demonstrated enhanced self-confidence, knowledge, skills, and attitudes. 7 Despite a substantial demand for both in-person and online training (we conducted 35 trainings between 2021 and 2024), the workload constraints of staff have limited their ability to attend face-to-face sessions. 53 Consequently, we aimed to address this demand, informed by our evaluated face-to-face curriculum.7,8 Using literature search and expert discussions, we were able to develop an online version of the training and a low-threshold educational website.
Exploratory evaluation of our digital training indicates no significant difference in outcomes between online and face-to-face formats, consistent with other end-of-life trainings. 54 Online trainings offer advantages, such as reduced costs, flexibility for participants, and effective use of technology, for in-depth discussions of existential topics. However, feedback highlighted a lack of informal team-building opportunities, such as coffee breaks. The provision of online trainings can therefore be seen rather as one additional possibility among education offers. While online training expands educational options, some participants sought more detailed guidance on handling requests for assisted dying, both inpatient interactions and institutional ethics. As requests for assisted dying increase, this need becomes urgent. 55 We view the desire to die as a broader phenomenon, with realized assistance in dying as an extreme and rare expression. 3 However, health professionals in many countries are confronted with requests for assisted dying. 56 Therefore, understanding and dealing with the desire to die should be fundamental—independent of national legal regulations. Further development of trainings for institutions to find an ethical and practical stance maybe helpful.
To provide optimal care for patients expressing a desire to die, it is essential to offer easily accessible online information. Educational websites are increasingly used to convey medical and health information to both professionals and the public. 57 While social media is popular for health information, it often suffers from low quality and misinformation.58,59 Our website offers free, low-threshold, evidence-based information on dealing with desire to die and has been rated “good” on the main criteria of website quality (usability, comprehension, information quality, presentation, and sustainability).12–14 The credibility of our website is enhanced by professional credentials and reliable sources. 60 In a landscape where health information online can be confusing and misleading, source credibility can be an important demarcation from low-quality information websites. 61 This is particularly valuable in the emotionally charged discourse on medical assistance in dying.
Website ratings might be impacted by selection bias, as our evaluation sample was already known to the research team. However, participants also gave a substantial amount of criticism: user evaluations suggest that, despite using videos, graphics, and text, our website prioritizes “essence over esthetics”. 62 Health professionals in our evaluation and other studies highlight the need for more diverse media use to enhance accessibility. 63 Additionally, feedback often points to the need for simpler, more inclusive language, as plain language has been shown to improve accessibility. 64 To accommodate this need, future development should include plain language text alternatives and extensive pretesting, beyond the efforts of a media agency focused on accessible health information. Connecting the website to the server and design format of the University Clinic Cologne, we faced the challenge of limited possibilities for creative design. However, it also enables the research team to keep website information up-to-date according to the current legal framework and best-practice advice, independent on individual project funding.
Strengths and Limitations
The major strength of our study lies within the sustainability of the developed trainings on dealing with the desire to die through its possibility for continuous further development according to current needs. By drawing on an already existing successful training curriculum for adaptation, we tried to ensure that existing knowledge becomes available to a larger audience. For website development, we could draw on a previous project on the translation of research data for health care practice, 11 thereby making use of experiences on website development.
Our study is limited in several ways: With a literature search in PubMed (Medline) only, we might have overlooked relevant publications in other databases. 65 The questionnaire used for online training evaluation is not validated. Also, contrary to our face-to-face-trainings, 8 we cannot be sure of the practice transfer learned knowledge and skills from our online trainings yet. Additionally, our sample size is small and limited in its generalizability (e.g., age and gender distribution). While developing the website, we were limited by the necessary connection to the website domain of our employing institution. Although the use of its corporate design likely increased credibility, it also limited possibilities in multimedia use.
As a perspective for future research, it is important to ensure adequate education in dealing with the desire to die for an even wider audience. Therefore, effects of the developed training should be evaluated using both a larger and more diverse sample size. This could also adequately assess the effectiveness of online trainings compared to face-to-face trainings. To also reach target groups like hospice volunteers or informal caregivers of people with severe and life-limiting illnesses would require a tailored approach specific in content, form, and language560. This issue is especially true for elderly persons or those with a language barrier. 66
Ethics Approval and Consent to Participate
All research was conducted according to the Declaration of Helsinki and received a favorable vote from the ethics committee of the University of Cologne (Nr. 21-1412_1, 04.11.2022). All participants gave written informed consent.
Footnotes
Disclosure Statement
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: K.B., K.K., and R.V. all teach the desire to die trainings on an honorary basis. Other than that, K.B., T.D., and K.K. declare no support from any organization for the submitted work; no financial relationships with any organizations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work. R.V. reports grants from the Federal Ministry for Social Affairs, Senior Citizens, Women and Youth during the conduct of the study. Grants from the Federal Ministry of Education and Research, the Federal Joint Committee (G-BA) Germany, Innovation Fund; EU—Horizon 2020; Robert Bosch Foundation; Joseph-Carreras Foundation, Jackstädt Foundation, Charité, Trägerwerk Soziale Dienste in Saxony GmbH, Paula Kubitschek-Vogel Foundation, Marga and Walter Boll Foundation, Association Endlich Palliativ & Hospiz e.V.; German Cancer Society, Association of the Scientific Medical Societies, German Cancer Aid.
Funding Information
This work is funded by the German Federal Ministry of Family Affairs, Senior Citizens, Women and Youth (Grant No. ZM I 8-2521BAP366).
Authors’ Contributions
K.B., K.K., R.V., and T.D. made substantial contributions to the concept and design of the study, the acquisition, and analysis and interpretation of data. K.B. and K.K. drafted the article. R.V., A.D., and T.M. revised it critically for important intellectual content. K.B., K.K., and T.D. participated sufficiently in the work to take public responsibility for the content. R.V., T.D., K.K., A.D., and T.M. approved the final version to be published.
