Death and grief literacy are increasingly recognised as crucial public health resources for responding to serious illness, dying, death, and bereavement. This critical essay summarises key discussions from a three-day international symposium, “ Fostering Connection in Existential Phases of Life: How Do We Enhance Death and Grief Literacy? ” (July 2025), which brought together experts from palliative care, caring communities, LGBTQ+ advocacy, migration studies, social work, volunteering, and psychosocial support. The symposium did not include members of the general public but focused on academic, clinical, and practice-based expertise. The symposium explored how enhancing death and grief literacy can improve individual and collective responses to loneliness, particularly among marginalised and vulnerable populations who are at higher risk of experiencing loneliness and poorer outcomes in the context of serious illness, dying, and bereavement, and foster deeper connections during life’s existential phases. Discussions addressed the relational, communal, and practical dimensions of death and grief literacy; the entanglement of loneliness and desire to die in severe illness; experiences of grief-related loneliness; and the potential of compassionate communities. Outcomes included concrete recommendations for policy, practice, and education, emphasising community-based support, cultural humility, public engagement, and the integration of death and grief literacy into curricula across multiple educational and professional settings, including school curricula, university education, and relevant workplace training programmes. Overall, we argue that strengthening death and grief literacy can shift societies from pathologising loneliness towards shared responsibility, solidarity, and compassionate care at the end of life and during bereavement.

Background: Patients receiving palliative and hospice care frequently experience high symptom burden alongside altered body perception due to progressive disease and physical decline. While acupressure has demonstrated beneficial effects on symptoms such as nausea, pain, fatigue, and anxiety, its potential influence on body awareness has not been systematically investigated. Furthermore, evidence regarding the feasibility and implementation of nurse-led acupressure interventions across different palliative and hospice care settings remains limited. This study aims to explore the feasibility, acceptability, and potential effects of acupressure on symptom burden and body awareness in palliative care settings. Methods: This pilot study evaluates a nurse-led acupressure intervention aimed at improving body awareness in patients receiving palliative and hospice care across specialized inpatient and outpatient settings. This study is designed as a prospective, exploratory, mixed-methods pilot and feasibility study using a pre-post design across multiple care settings, including a palliative care unit, specialized palliative home care (SAPV), an inpatient palliative consultation service (PMD), and a hospice. A total of 60-80 adult patients with incurable illnesses will be recruited. The intervention consists of standardised acupressure administered by trained nursing staff, with at least two sessions per participant. Primary outcomes focus on feasibility and acceptability indicators, including recruitment, retention, adherence, intervention documentation, and data completeness. Exploratory clinical outcomes include symptom burden, body awareness, and use of on-demand medication. Quantitative outcomes include symptom burden (MIDOS), body awareness (State Mindfulness Scale-Body subscale), and use of on-demand medication. Qualitative data will be collected through brief patient interviews using the Body Image Assessment (BIA) and semi-structured interviews with patients and healthcare providers after the completed intervention. Data will be analysed using descriptive and exploratory inferential statistics, alongside a linguistic and thematic analysis. Quantitative and qualitative findings will be integrated using a convergent triangulation approach. Discussion: This study will provide first insights into the feasibility and acceptability of acupressure in palliative and hospice care and generate hypotheses regarding its potential effects on symptom relief and body awareness. Findings will inform the design of a future randomized controlled trial and contribute to the implementation of complementary therapies in integrative palliative care.

Background Experiences of serious illness, dying, death, and grief in the workplace significantly affect employee well-being, productivity, and organizational culture. Despite increasing recognition of their importance, there is limited understanding of workplace perspectives in Germany. This study addresses this gap by examining the attitudes and experiences of employees and employers regarding these issues to inform workplace policies that promote well-being and resilience.Methods We conducted a nationwide representative cross-sectional online survey (n = 1,127) using a self-developed questionnaire with closed and open-ended items. Data were collected from managers and non-managers across multiple sectors to identify key themes, challenges, and opportunities for improving workplace practices. Closed-ended questions were analyzed quantitatively, and open-ended responses qualitatively.Findings More than sixty-three percent (63.1%) of respondents reported having been affected within the past five years. Workplace support was limited, with 42.7% seldom or never receiving managerial support. Informal support from colleagues and managers was more common and often preferred over formal provisions. Employees valued understanding, empathy, and availability, whereas managers emphasized structural measures such as leave policies. Barriers, uncertainties, and a strong need for guidance and training were frequently reported. Employees in smaller companies expressed greater concerns about legal consequences and stronger support needs, while larger organizations more often offered formal guidelines and programs.Conclusions The mismatch between employees' needs and managerial focus underscores the importance of aligning workplace practices with employee expectations. Training, guidance, and initiatives that integrate psychosocial and structural support could strengthen well-being and enhance organizational resilience.

Background Although palliative and hospice care are essential for individuals with life-limiting illnesses, academic inpatient hospices, which combine care with research and education, remain rare. This study explores the experiences, perceptions, and expectations of patients and their relatives regarding palliative and hospice care with the aim of informing the development of an academic inpatient hospice. Methods Semi-structured individual and dyadic interviews were conducted with patients and relatives who had experience with palliative and hospice care services in an academic setting in Germany. The data were analyzed using qualitative content analysis. Results A total of 14 interviews were conducted with 17 participants (10 patients, 7 relatives). Participants reported initial uncertainty and skepticism regarding palliative and hospice care; however, direct experiences led to more positive attitudes. Key aspects valued included psychosocial support, effective symptom management, and a non-clinical atmosphere. The preservation of autonomy and dignity, meaningful personal interactions, and the active involvement of relatives were considered essential. The transition from a hospital-based palliative care unit to an inpatient hospice was often perceived as abrupt and emotionally challenging, creating a risk of losing established familiarity. Participants responded positively to the idea of an academic inpatient hospice. They highlighted the potential benefits of integrating palliative and hospice services within a unified and familiar environment, including smoother transitions and continuity of care. Conclusions An academic inpatient hospice offers opportunities to address end-of-life care needs by strengthening existing structures and ensuring continuity and comprehensiveness of care. It can support patient-centered care, provide a platform for education and research, and promote greater public awareness and understanding of palliative and hospice care.

Background Society often perceives work and private life as separate spheres which leads to uncertainty about issues such as serious illness, dying, death, and grief within workplace settings. Last Aid Courses (LAC) are established to reduce uncertainty and insecurity towards these issues in the public, but not designed for use in the workplace. Objectives To develop an integrated framework specifically designed for the workplace context to foster compassionate workplaces. Methods After performing 102 LAC in different workplace settings, a mixed-methods design was employed, comprising (a) an online survey among participants (n = 611) including closed questions and open free-text questions, and (b) five focus groups with former course participants (n = 24). Results The vast majority of respondents (94.5%) considered both the topics addressed and the conduction of LAC in the workplace as highly relevant. This relevance was reflected in increased confidence in dealing with the subject matter (96,0%) and a high willingness to recommend the course to others (98.3%). Participants expressed the need for stronger integration of workplace-related topics, particularly concerning grief management, communication training, and labor-law-related aspects. The qualitative data revealed three interrelated levels: 1. Personal level: Dealing with those affected, consisting of shared experience, trust, and the impact of grief on employees; 2. Company level: Structural factors, including (a lack of) managerial support, attitude, and established structures; 3. Development level: Conceptual input encompassing characteristics of potential last aiders in the workplace, ideas for institutionalization, best practice, being integrated into the company structure, support for potential future last aiders, and barriers. Conclusion Our findings confirm the high relevance of the topic within workplace settings and demonstrate that LAC enhance confidence in dealing with serious illness, dying, death, and grief. The complexity of the issue highlights that sustainable implementation requires workplace-specific approaches. Personal and structural dimensions are closely intertwined and form part of a framework aimed at strengthening workplace-based confidence in responding sensitively to serious illness, dying, death, and grief.

Background/Objectives: Identifying patients with palliative care needs can be challenging in clinical practice. This study reports on the tailoring and evaluation of a minimally invasive intervention (MINI) to support early planning of palliative care in acute hospitals. The MINI includes the Surprise Question (SQ) and the Supportive and Palliative Care Indicators Tool (SPICTTM) for health and social care professionals, as well as a patient Question Prompt Sheet. Methods: A multi-method intervention study was conducted, including interviews and a pre-post survey of professionals on the development, implementation, and experiences with MINI. Interview data were analyzed inductively and survey data descriptively. Results: Data from 44 participants were included. MINI was generally considered acceptable and relevant, particularly the SQ, which prompted reflection among staff. Following the intervention, a significant improvement was observed in the presentation of regional specialist palliative care services for patients, as well as in the identification of psychosocial problems and their discussion with patients and relatives. While physicians reported increased confidence in initiating end-of-life conversations, other hospital staff showed mixed responses. Reported barriers for implementing MINI included limited time, the COVID-19 pandemic, staff strikes, emotional burden, and unclear responsibilities, indicating a low level of commitment. SPICT use was inconsistent, suggesting low integration into workflows. Interprofessional collaboration improved, particularly with external palliative care providers. Sustainability was hindered by a lack of institutional support, ongoing training, and formal routines. Conclusions: MINI may have the potential to shift the focus away from purely curative approaches. However, to guarantee success, future studies should ensure better alignment between intervention design, implementation and framework conditions.

Background/Objectives: Early identification of terminally ill patients is crucial for enhancing care, patient and care partner satisfaction, and healthcare staff confidence in discussing disease trajectories. Yet, timely recognition remains challenging. To address this, we developed a minimally invasive intervention (MINI) for general hospital wards. We aimed to evaluate the MINI’s feasibility in facilitating an earlier identification of terminally ill patients and improving patient reported outcomes in a hospital setting. Methods: This prospective, two-arm pre-post intervention study at a university hospital evaluated the MINI alongside usual care. Patient-reported outcomes, including quality of life (SF-12), palliative care needs (IPOS), and functional status (ECOG), were collected at baseline and every three months over 12 months. Participants were allocated to a control or intervention group. Results: Of 188 patients identified using the Surprise Question, 58 completed the baseline assessment. While physical functioning (SF-12 PCS) remained comparable, the intervention group experienced clinically meaningful improvements in mental health (SF-12 MCS) at three months, with positive trends at six months. This group also showed a decline in palliative care needs, reduced emotional symptoms, and improved performance status, evidenced by significant differences in non-parametric analyses. These findings underscore the MINI’s potential to significantly improve patient well-being. Conclusions: This pilot study demonstrated the feasibility of the MINI and suggests it may foster meaningful system-wide change in patient-centred care within acute hospital settings, leading to improved patient outcomes and more confident healthcare staff in identifying terminally ill patients. However, given the small sample size, these findings should be interpreted with caution. Future research with larger cohorts and extended intervention periods is warranted to fully elucidate the MINI’s impact and refine strategies for improving care for terminally ill patients.

Background/Objectives: As a result of demographic change in Germany, the number of people in need of care is steadily increasing, with a correspondingly larger proportion of care being provided by family members at home. Family caregivers face significant challenges in providing such care, particularly when balancing work responsibilities. Many experience a loss of income due to reduced working hours or the necessity of leaving the labor market. Additional caregiving costs, such as medical expenses, transportation, and home modifications, further exacerbate their financial burden. Methods: This study consists of an online survey, which included the German version of the Carer Support Needs Assessment Tool (CSNAT), designed to assess the support needs of family caregivers. Respondents were asked to describe their support needs in open-text responses. To illustrate their experiences, a qualitative content analysis was conducted. Results: Out of the 320 questionnaires, 304 of them contained open-text responses that could be analyzed. Important themes included the need for support in the workplace, financial security, and assistance with administrative barriers. In addition to more flexible working hours and greater understanding from employers, the need for financial compensation for loss of working time was expressed. Conclusions: Despite a growing awareness of the gaps in support, the needs of family caregivers remain inadequately addressed, leaving them financially burdened and unsupported. Ultimately, this study calls for a re-evaluation of societal attitudes toward caring, arguing for greater recognition of the economic contributions of family caregivers and the implementation of supportive policies.

Background:Palliative care units and specialised palliative home care teams are well established in many countries. Palliative day-care clinics, however, are not. Studies assessing which patients benefit from this setting of care are rare. Aim:This is the first routine data analysis of patients treated in three settings of specialised palliative care within a single geographical region. Our aim was to gain understanding of how patients in this region, where specialised palliative care structures are well-established, differ in their characteristics and treatments, and to explore the potential role of a palliative day-care clinic. Design:Retrospective data were extracted from medical records and analysed using SPSS® and R®. Data were analysed using the Shapiro-Wilk, Chi-Square, and Kruskal-Wallis tests. Setting/Participants: Patients (n = 603) were included if they received treatment at either a palliative day-care clinic, a palliative care unit, or a specialised palliative home care service. To cover the "normal" pre-pandemic period, the analysis was conducted retrospectively from 31 December 2019. Results:Patients attending the palliative day-care clinic were more likely to have cancer (90%, P < .001), were younger than those receiving specialised palliative home care (66.1, P < .001), had a better ECOG performance status (2, P < .001) and fewer high-complexity symptom domains (3.4, P < .001). Patients in the palliative day-care clinic and the palliative care unit underwent similar numbers of medical procedures and interventions. The majority of patients were admitted to the palliative day-care clinic from home (76%, P < .001) and discharged to the palliative care unit (41.5%, P < .001). Conclusions:The three care models differ in their patient populations, time-based criteria and symptom burden-with the palliative day-care clinic treating younger patients at earlier stages of the disease, with a lower ECOG score and a less complex symptom burden. These variations emphasise the importance of tailoring palliative care to the needs of patients and the progression of their disease. Recognising these differences can enhance integrated care pathways and patient-centred outcomes in various settings.

BACKGROUND:An increasing number of patients in the palliative phase of their disease are cared for at home by palliative home care services. A sense of security, normality of everyday life and symptom control are found to be active factors of quality of care in Specialized Palliative Home Care. Whether this also applies to General Palliative Home Care has not yet been systematically investigated. The aim of this study was to identify distinctions between General and Specialized Palliative Home Care from a healthcare professional's perspective concerning those factors. METHODS:With a qualitative approach, we conducted 11 semi-structured interviews with healthcare professionals from different professional backgrounds in General and/or Specialized Palliative Home Care. RESULTS:In both General and Specialized Palliative Home Care, healthcare-professionals (HCP) found a sense of security (through availability) to be most relevant for the patients. The majority saw aspects of normality of everyday life as a key component for high-quality palliative home care, especially having time for the patient and the family caregiver(s). However, statements about symptom control are mainly related to Specialized Palliative Home Care. The subcodes availability, having time and competence, symptom burden and financial resources were the main distinguishing factors between General and Specialized Palliative Home Care in sense of security, normality of everyday life and symptom control, respectively. CONCLUSIONS:Our results provide the basis for a clearer definition of GPHC and SPHC and contribute to identifying factors for a transferal between the two services to provide best care for the patient. Distinguishing (sub)factors revealed challenges and short-term solutions. Providing (financial) incentives to guarantee time and availability in General Palliative Home Care would lead to more effective care.

OBJECTIVES:In the last six months of life, many patients prefer to rely on healthcare providers to make medical decisions. Understanding the factors that shape this preference is essential for enhancing communication and tailoring care to patients' needs. This study examines the association between patients' preference to delegate decisions to doctors and their expectations of health deterioration during the last phase of life. METHODS:Data were collected via patient-reported questionnaires from patients in the last phase of life (clinician-identified based on established end-of-life criteria) enrolled in the iLIVE project in 11 countries (2020-2023) at baseline (n = 1055) and 1-month follow-up (n = 509). Probit regression models estimated the partial associations between preference for doctors to decide and expectation of health deterioration, controlling for covariates such as age, gender, living situation, education level, main diagnosis, self-rated health, and country. RESULTS:On average, 45 % of patients expressed a preference for doctors to make all medical decisions at both baseline and follow-up. At baseline, 64.6 % expected their health to worsen (61.9 % at follow-up). Patients who did not expect their health to worsen were more likely to prefer doctors to make decisions at both baseline (Average Marginal Effect (AME) = 0.11, p < 0.001) and follow-up (AME = 0.15, p < 0.001). CONCLUSIONS:Patients who do not expect their health to deteriorate, despite being in the last phase of life, are more likely to prefer that doctors make decisions on their behalf. PRACTICE IMPLICATIONS:These findings highlight the need for tailored communication strategies and patient education efforts that support realistic understanding of prognosis and promote shared decision-making at the end of life.

Objectives Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection. However, all existing versions show some limitations with potential for improvement. This study aims to develop and initially validate a theory-driven and statistically sound SAHD short version based on a large multinational sample to advance the WTHD assessment in different countries and with different legislations. Methods A 3-step procedure was carried out including (1) theory-driven item selection, (2) exploratory, and (3) confirmatory factor analysis. We used a data set collected between 1998 and 2020 across 3 different countries (Germany, Spain, USA). Participants were N = 1156 complete cases ( n = 181 German, n = 101 Spanish and n = 874 US) of severely ill adult in- and outpatients. They had to be ≥18 years and give informed consent. Results The exploratory factor analysis revealed that 10 of 11 items previously selected theory-driven loaded on either of 2 factors: (1) WTHD and (2) internal locus of control. These factors showed good to excellent reliability according to Cronbach’s α and McDonald’s Ω, as well as an excellent fit of our data as an overall model for the total sample. Significance of results The developed SAHD-10 represents a reliable and valid alternative to the SAHD and an efficient means to measure and further investigate a WTHD in cross-cultural clinical and research settings.

Background The public health approach to end-of-life care has led to initiatives to promote caring communities, involving the community in supporting vulnerable dying people and their families. Our study aimed to explore how the COVID-19 pandemic affected the relevance of a caring community, whether the concept of a caring community took on a different meaning during and because of the pandemic, and how issues of death, dying and bereavement were perceived. Methods Qualitative online survey of people interested in the ‘Caring Community Cologne’ project. Participants in the survey attended the launch event for the Caring Community in Cologne. Direct invitations were sent to professionals and experts in various fields. Information about the event was also disseminated via social media and the city of Cologne’s website. Data were collected from June 2020 to August 2020 and analyzed using Braun & Clarke’s thematic analysis. Results N = 63 out of 121 people participated. The median age was 60 years; 65% of the participants were female. Most of them worked in the social sector (53%). Three respondents described positive changes brought about by the pandemic: Greater sense of community and solidarity, more confrontation with one’s own finiteness, strengthening of relationships, mindfulness and slowing down of the pace of life. Negative effects mentioned included a deterioration in mental health and well-being, with an increase in anxiety, social isolation but also forced togetherness, which can lead to conflict, and a lack of emotional closeness due to restricted contact. Conclusions Our study was conducted at the beginning of the pandemic and shows that the pandemic has raised awareness of the importance and potential benefits of community-based networks and the importance of adopting a public health palliative care approach to advocate for those most in need. The findings also highlight the role of community social capital in promoting engagement, resilience and well-being.

BACKGROUND:Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and evaluation. The aim of this study was to assess the views of members of a German Compassionate City, the "Caring Community Cologne" (CCC), and to report on its practical implementation. METHODS:The CCC consists of a citywide Round Table, a Steering Group, a Coordination Office and four Working Groups in areas where activities are already in place. We conducted two qualitative focus groups with nine members of three Working Groups. The transcripts were analysed with qualitative content analysis, using MAXQDA version 2022, and results were transferred into the logic model "Throughput Model". RESULTS:At the time of evaluation, participants felt that the structures of the CCC were adequate, but criticised the cooperation and transparency between them. A key aspect of this was the requirement for a coordinating body. They stressed the support of federal institutions as a key factor, while at the same time describing insufficient citizen involvement. The transfer of the results into the Throughput Model highlighted four areas that the CCC should address: (I) neighbourhood networks need to be established to strengthen civic support; (II) people need to be made aware of the issues by making them accessible in their everyday lives; (III) the many existing support initiatives need to be better linked and made more accessible; (IV) adequate healthcare service structures have to be guaranteed. CONCLUSIONS:The top-down approach described, supported by the city's engagement and involving existing initiatives can facilitate the development of a bottom-up civic engagement model in a large city. However, active citizen involvement appeared to be a challenge. The Throughput Model was a suitable basis for mapping work processes and developing evaluation plans.

The prospect of death influences people’s thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients’ thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.