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Background The perception of being closer to death can be experienced due to old age or life-limiting diseases, and can pose profound existential challenges. Actively confronting death-related issues and existential questions may increase psychosocial comfort and stimulate personal growth, whereas dysfunctional coping may lead to existential distress. To date, research on individual and (semi-)professional approaches to confronting the own end of life and the effects on one’s well-being remain scarce. Therefore, the aim of this study was to explore individual strategies and wishes in order to derive ideas for appropriate support concepts. Methods Twenty semi-structured interviews were conducted with people over the age of 80 ( n  = 11) and with a life-limiting disease ( n  = 10). The interviews were transcribed verbatim and independently coded by two researchers according to Braun and Clarke's thematic analysis approach. Results While the use of (semi-)professional approaches (e.g., therapeutic support) to confronting existential questions in the shape of one’s impending death was rare, individual coping strategies did have a positive impact on psychosocial comfort. There were hardly any significant differences between the participants aged 80 and over and those with a life-limiting disease in terms of individual coping strategies or how they approached the ends of their lives. Both groups reported that theoretical education, preparing for the ends of their lives (e.g., funerals), talking about death-related topics, reflecting on death-related topics, and contemplating death in a spiritual sense had positive effects on their assurance, self-determination and relief. The necessity of confrontation and a desire for low-threshold, accessible and flexible services to meet their existential and spiritual needs were highlighted. Conclusions There is both a desire and a need for the addressing of existential questions. Outside of private contexts, however, the participants possessed little awareness of support services that focused on confronting end-of-life issues, and rarely used such services. Efforts to raise awareness for psychosocial and spiritual needs should be implemented within the care system, together with low-threshold support concepts, in order to increase psychosocial well-being. More research evaluating individual approaches to confronting the own end of life are needed to better understand this determinant of well-being and its mechanisms of action. Trial registration www.germanctr.de , DRKS -ID : DRKS00020577 .

Most people in European countries die in hospitals outside of specialist palliative care wards. Healthcare professionals of all disciplines are therefore often involved in the care for dying patients. Healthcare professionals' perception of quality of care in the dying phase as well as its predictors are of interest to improve quality of care on non-palliative care hospital wards. Identification of personal and organizational predictors of healthcare professionals' perceived quality of care in the dying phase. Cross-sectional online survey with healthcare professionals of ten non-palliative care hospital wards of two university medical centers. Descriptive statistics were used to describe the data. A hierarchical linear regression model with ten theoretically derived personal (gender, age, profession, palliative care training, spirituality, two self-care items, general self-efficacy, thanatophobia, burden factors when caring for dying patients) and two organizational predictors (type of ward, interprofessional patient-centered teamwork) was developed. The dependent variable was an eleven-point Likert-scaled item (0 = extremely bad, 10 = ideal) measuring the quality of care in the dying phase at the respective ward, perceived by healthcare professionals. Predictors were categorized as modifiable and non-modifiable. Most of the n = 201 participants were female (64.7%), nurses (57.2%) and 30-50 years old (53.2%). The regression model was statistically significant (p < 0.001) and explained 30.7% of the total variance. Lower perceived quality of care in the dying phase was associated with younger age (β = 0.15, ρ = 0.020), being a nurse (β = 0.29, ρ < 0.001), and lower perception of interprofessional patient-centered teamwork on their ward (β = 0.37, ρ < 0.001). Perceived quality of interprofessional patient-centered teamwork was the most clinically relevant predictor in this model, as it had the strongest association and was modifiable. Age and profession were significant, non-modifiable predictors but can be considered when implementing interventions. As improving the perceived quality of care in the dying phase could be beneficial for dying patients, interventions strengthening interprofessional patient-centered teamwork should be implemented on non-palliative care hospital wards.

Purpose While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases. Methods Face-to-face in-depth interviews were conducted with patients who were 18–39 years old at diagnosis. The interviews took place 2–5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis. Results Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs. Conclusion AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number  DRKS00030277; September 27, 2022 (German Clinical Trials Register).

In order to investigate controversies surrounding the desire to die phenomenon in palliative care by analyzing expert opinions on the topic, we carried out a secondary qualitative data analysis of free text comments collected during a Delphi survey that was designed to develop a conversation aid for dealing with desire to die in everyday clinical practice. Between 01/2018 and 03/2018, a two-round Delphi survey was carried out with national (German) and international palliative care experts. Free text comments were reinvestigated to identify controversies surrounding the desire to die phenomenon. An additional in-depth analysis focused on statements expressing attitudes towards proactively addressing (potential) desires to die. Within the Delphi survey, 103 of 149 multi-professional participants (almost all of them with practical and only six with exclusively theoretical expertise in palliative care) generated 444 free text comments. Thereof, we identified three main categories related to dealing with desire to die: “outer framework“, “extended care system” and “health-professional-patient-relationship”. Ambivalences, taboos and uncertainties surrounding desire to die in palliative care became apparent. Experts are divided concerning the practice of proactively addressing desire to die. Even if these conversations–especially the proactive approach–are also viewed critically, we conclude that open-ended and respectful communication about desire to die between health professionals and patients can be understood as an eligible intervention in palliative care. Proactively addressing the topic is a possible way to open up such conversations.

Background During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients’ end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed. Methods An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis. Results 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient’s condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals. Conclusions Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed. Trial registration German Clinical Trials Register (DRKS00023552).

Introduction . Globally, hospitals are an important place in end‐of‐life care and most frequent place of death in Germany (47%), but at the same time, the least preferred one—both for patients and their informal caregivers. As hospital care in the dying phase on non‐palliative care wards has rarely been studied systematically, we assessed the current state of care in the dying phase in hospitals as a first step. Methods . In an online survey, N  = 165 national health experts were invited to answer eight open questions on care aspects, facilitators, barriers, and needs for improvement as well as COVID‐19 pandemic specifics regarding hospital care in the dying phase. Sociodemographic data were analysed descriptively, and responses were analysed using qualitative thematic analysis. Results . Of n  = 65 experts, 52% work as nursing staff and 30% as physicians. We identified facilitators, barriers, and needs for improvement regarding 11 topics on the following three levels: institutional level (general institutional conditions, hospital culture, and integration of specialist palliative care), team level (attitude towards and dealing with death and dying, competencies, communication, and teamwork) and care level (dying phase, symptom control, patient centredness, and involvement of informal caregivers). Conclusion . Improving care in the dying phase has to overcome barriers on various levels. We assume that rather “small” measures will find their way into clinical routine and contribute to the improvement of hospital care in the dying phase.

Purpose Palliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life. To evaluate one of the first PDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing the experiences, satisfaction, challenges, wishes of patients and relatives and possible alternatives to treatment in the PDCC. Methods Qualitative study using semi-structured telephone interviews. Data was analyzed using qualitative structuring content analysis according to Kuckartz with deductive a priori categories and inductive subcategories. Results A total of 31 patients and 38 relatives completed telephone interviews. The majority of patients were diagnosed with a cancer or tumor disease. The following four main themes emerged: (1) alternatives to treatment at the PDCC, (2) symptom relief, (3) sense of security, (4) “everyday life framing” (normality of everyday life). Participants valued the medical treatment (especially for pain), psychosocial support given and having direct access to a range of services (e.g., wound care and pleural drainage), while relatives valued being provided respite services. A sense of security, availability of therapies, and devoted time that healthcare providers spent to explain e.g., treatment options were mentioned most positively, as well as confidence in dealing with the illness. As to whether there was an alternative to treatment in the PDCC, some saw further inpatient stays, the emergency room or care by general practitioners as options (although not preferred). Patients expressed concern that they were not treated and informed according to their needs in other care settings. Conclusions PDCCs may close a gap between inpatient and home palliative care. Participants mentioned that hospital stays can be delayed or even prevented.

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.

Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a potentially curative treatment, which carries a high risk of complications and mortality, highlighting the necessity of discussions about life threat. This study explores the perspectives of patients, informal caregivers (ICs), and healthcare professionals (HCPs) regarding the timing, content, and challenges of these discussions. Multicenter cross-sectional survey in comprehensive care centers across Germany, involving patients with allo-HSCT, ICs, and HCPs. Questionnaires assessed perceived concerns about life threat, communication needs, and attitudes toward death. Statistical analyses included descriptive statistics, group comparisons, and multivariate logistic regressions. A total of 61 patients, 31 ICs and 125 HCPs participated in this study. Patients and ICs had a high need for discussion about life threat at diagnosis, which was corroborated by HCPs. At further time points in the transplant trajectory, there were more discrepancies between patients‘/ICs‘ and HCPs’ perceptions towards conversations about life threat. While 61.7% of patients preferred having their ICs present during discussions, ICs often felt overlooked, with only 50% finding conversations with HCPs helpful. HCPs’ avoidance of death was associated with a reduced likelihood of reporting a need for conversation in patients in the event of severe complications. These findings highlight a discrepancy between patients’ and ICs’ preferred timing for conversations about life threat and HCPs’ perceptions of when patients actually express such a need. To bridge this gap, earlier and ongoing conversations are essential. Training programs should address HCPs’ discomfort in discussing prognosis and improve interdisciplinary teamwork to standardize end-of-life communication. Trial registration number : DRKS00027290 (German Clinical Trials Register) on 10.01.2022.

The Fourth International Last Aid Conference was held from 4th to 6th September 2024 in Cologne, Germany. Seventy-three participants from 16 different countries and nationalities participated in the Fourth International Last Aid conference in the Mildred Scheel Academy and the Department of Palliative Medicine at the University Hospital of Cologne, Germany. The main topics of the conference were experiences with Last Aid Courses, research on public palliative care education (PPCE) and networks in community palliative care from different countries. The speakers from different countries around the world presented experiences with networking in community care, PPCE and lessons learned from the implementation of Last Aid Courses and different course formats in different countries. The contribution of research and the past and future work of the Last Aid International Research Group (LARGI) for the development of Last Aid was presented and discussed. This report provides an overview of the conference topics, the presentations by international experts from around the world and the most important results and implications.