What Keeps the Family Caregiver Motivated to Care for Their Dying Relative at Home? A Brief Report of a Qualitative Interview Study.

Background: Dying at home poses many challenges for family carers and is particularly distressing for those with limited social support. In addition to financial hardship, this perceived burden may be a deciding factor in providing care at home. Aims: To explore what motivates people to provide care at home until death. Methods: Qualitative interviews with 43 family carers of deceased patients about factors enabling death at home. Interviews were audio-recorded, transcribed verbatim, and analyzed using content analysis. Results: Participants who rated their end-of-life experience positively reported that they particularly benefited from encouraging feedback and gratitude from their dying loved ones, as well as appraisal support. It takes courage to care for someone at home and to feel responsible for them. These themes made the participants' home care efforts meaningful, gave them confidence in what they were doing and helped maintain their motivation to care. Conclusion: Encouraging feedback and appraisal support are both minimally invasive techniques with maximum impact for continuing care at home.

How can a community be successfully empowered to deal with death, dying, and bereavement?-formative evaluation of the Caring Community Cologne using focus groups.

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.

Dying at home: What is needed? Findings from a nationwide retrospective cross-sectional online survey of bereaved people in Germany.

OBJECTIVES: According to the "Last Year of Life in Cologne" study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home - if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home. METHODS: Germany-wide quantitative cross-sectional online survey of bereaved adult relatives. RESULTS: The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care (p < 0.001), financing (p = 0.012), preparing and organizing home care (both p < 0.001), communicating with the patient and medical staff (p = 0.012 and p = 0.009, respectively), and pain management (p < 0.001). Relatives whose next of kin did not die at home had higher needs, suggesting that these factors are key to home care of the dying. SIGNIFICANCE OF RESULTS: The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.

'I see the high level of interpersonal support during the pandemic as proof that the good in people prevails': the COVID-19 pandemic as a catalyst for building a caring community?

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.

["The total time spent by the general practitioner decreases": The referring physician's view of a palliative day care clinic]. / "Der zeitliche Gesamtaufwand für den Hausarzt sinkt": Die Sicht der Zuweisenden auf eine palliativmedizinische Tagesklinik.

BACKGROUND: Palliative day-care clinics (PDCCs) can complement inpatient and outpatient specialized palliative care. Some studies have shown improvements in the patients'́ symptoms, functional level and psychological well-being, while others have not. This study aimed to document the experience of referring physicians with PDCCs. METHOD: A postal questionnaire was sent to referring physicians between 11/2020 and 3/2021. The questionnaire included open and closed questions about professional background, symptom control, medical / psychosocial benefits for patients and challenges in the collaboration. Closed, 5-point scaled questions were analyzed descriptively with IBM SPSS Statistics 25®, open questions with a thematic content analysis using MAXQDA 2020®. RESULTS: Of the 96 referring physicians contacted, 76 questionnaires were returned (79%), 73 of which could be analyzed. Most referring physicians were general practitioners (57%), followed by oncologists (28%). 12% had completed further training in palliative medicine and had been working with patients with palliative care needs for an average of almost 19 years. On average, they had referred 24 patients (range 1-200) to a PDCC. 93% said that inpatient stays were delayed or avoided by PDCCs. 97% were of the opinion that their patients achieved a (great or rather great) benefit from medical treatment, and 96% thought that they benefited (to a great or rather great degree) from psychosocial treatment. 58% said that their own time spent with patients treated at the PDCC had decreased. In addition, a total of 227 open comments on challenges in cooperation, suggestions for optimization, reasons for referring patients and general wishes for PDCCs were analyzed. DISCUSSION: The high response rate to the questionnaires shows that PDCCs are of great importance to referring physicians. They consider the cooperation with PDCCs to be supportive and helpful for both themselves and their patients. CONCLUSION: PDCCs make an important contribution to palliative care. Almost all respondents believe that treatment at a PDCC prevents or delays hospitalization.

"Such an institution represents the circle of life" - bringing an inpatient hospice into an academic setting: a pre-implementation exploratory study.

BACKGROUND: To combine the benefits of hospice and palliative care, the integration of both seems self-evident. Aim of this study was to explore clinical staff's and volunteers' expectations and concerns of the first university hospice in Germany planning for implementation. METHODS: Staff and volunteers of the Department of Palliative Medicine of the University Hospital in Cologne received questionnaires and were interviewed following three themes of interest: opportunities, challenges, general criteria. Questionnaire results were analyzed descriptively using mean ± SD and percentages, open-ended questions and interviews were analysed using content analysis. RESULTS: A total of 28/100 questionnaires was returned (n = 17 clinical staff, n = 11 volunteers) and 18 interviews conducted. The majority of both clinical staff and volunteers estimated the need for a university inpatient hospice as rather to very high (64.7% and 81.8%, respectively). Our findings revealed that most clinical staff and volunteers anticipated improvements with the intended university inpatient hospice, although their expectations were divided between both hope and concern while adhering to legal and general requirements, which they feared might oppose such a project. Participants expressed concern about leadership and staffing plans, albeit most pronounced among clinical staff. Nursing staff repeatedly articulated concerns about being interchanged between the palliative care ward and the intended inpatient hospice while they had explicitly chosen to work in palliative medicine. CONCLUSIONS: The overall high level of anticipated progress and excitement is very encouraging. Albeit serious concerns were mentioned, our results indicate that all participants believe in a positive impact and highlight the need of developing a solid concept. In order to implement such a hospice within a university setting, it is important to consider multilevel contextual factors such as system-level factors (funding, external and internal regulations), organization-level factors (leadership, staff motivation), and patient-level factors (adaptability to patients' needs). Our findings illustrate the importance of understanding the context of practice before implementation. Our pre-implementation study helps identify critical views from staff members and volunteers that may hinder or advance the implementation. TRIAL REGISTRATION: The study was registered at the German Clinical Trials Register (#DRKS00021258) on April 17th 2020.

"My everyday life has returned to normal"- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study.

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.

Quality of care in the last year of life: adaptation and validation of the German "Views of Informal Carers' Evaluation of Services - Last Year of Life - Cologne".

BACKGROUND: To inform quality improvement and strengthen services provided in the last year of life, measuring quality of care is essential. For Germany, data on care experiences in the last year of life that go beyond diagnoses and care settings are still rare. The aim of this study was to develop and validate a German version of the 'Views of Informal Carers' Evaluation of Services - Short Form (VOICES-SF)' suitable to assess the quality of care and services received across settings and healthcare providers in the German setting in the last year of life (VOICES-LYOL-Cologne). METHODS: VOICES-SF was adapted and translated following the 'TRAPD' team approach. Data collected in a retrospective cross-sectional survey with bereaved relatives in the region of Cologne, Germany were used to assess validity and reliability. RESULTS: Data from 351 bereaved relatives of adult decedents were analysed. The VOICES-LYOL-Cologne demonstrated construct validity in performing according to expected patterns, i.e. correlation of scores to care experiences and significant variability based on care settings. It further correlated with the PACIC-S9 Proxy, indicating good criterion validity. The newly added scale "subjective experiences of process and outcome of care in the last year of life" showed good internal consistency for each given care setting, except for the homecare setting. Test-retest analyses revealed no significant differences in satisfaction ratings according to the length of time since the patient's death. Overall, our data demonstrated the feasibility of collecting patient care experiences reported by proxy-respondents across multiple care settings. CONCLUSION: VOICES-LYOL-Cologne is the first German instrument to analyse care experiences in the last year of life in a comprehensive manner and encourages further research in German-speaking countries. This instrument enables the comparison of quality of care between settings and may be used to inform local and national quality improvement activities. TRIAL REGISTRATION: This study was registered in the German Clinical Trials Register (DRKS00011925; Date of registration: 13/06/2017).

Can we determine burdensome transitions in the last year of life based on time of occurrence and frequency? An explanatory mixed-methods study.

OBJECTIVE: Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome transitions from the perspective of bereaved relatives. METHOD: Cross-sectional explanatory mixed-methods study with 351 surveyed and 41 interviewed bereaved relatives in a German urban area. Frequencies, t-tests, and Spearman correlations were computed for quantitative data. Qualitative data were analyzed using content analysis with provisional and descriptive coding/subcoding. RESULTS: Transitions rise sharply during the last year of life. 8.2% of patients experience a transition in the last three days and 7.8% three or more hospitalizations in the last three months of life. An empathetic way of telling patients about the prospect of death is associated with fewer transitions in the last month of life (r = 0.185, p = 0.046). Professionals being aware of the preferred place of death corresponds to fewer hospitalizations in the last three months of life (1.28 vs. 0.97, p = 0.021). Qualitative data do not confirm that burden in transitions is linked to having transitions in the last three days or multiple hospitalizations in the last three months of life. Burden is associated with (1) late and non-empathetic communication about the prospect of death, (2) not coordinating care across settings, and (3) not considering patients' preferences. SIGNIFICANCE OF RESULTS: Time of occurrence and frequency appear to be imperfect proxies for burdensome transitions. The subjective burden seems to be associated rather with insufficient information, preparation, and management of transitions.

Dying in hospital is worse for non-cancer patients. A regional cross-sectional survey of bereaved relatives' views.

OBJECTIVE: The aim of the study is to examine differences in hospital care between patients with cancer and non-cancer conditions in their dying phase, perceived by bereaved relatives. METHODS: A retrospective cross-sectional post-bereavement survey, with the total population of 351 deceased, 91 cancer patients and 46 non-cancer patients, who spent their last 2 days of life in hospital. A validated German version of the VOICES-questionnaire ('VOICES-LYOL-Cologne') was used. RESULTS: There were substantial differences between the two groups in the rating of sufficient practical care such as pain relief or support to eat or drink (p = 0.005) and sufficient emotional care needs (p = 0.006) and in the quality of communication with healthcare professionals (p < 0.001), with non-cancer patients scoring lowest in all these dimensions. CONCLUSION: In all surveyed dimensions on the quality of care in the dying phase, non-cancer patients' relatives rated the provided care worse than those of cancer patients. To compensate any differences in care in the dying phase between diagnosis groups, hospital care should be provided as needs-oriented and non-indication-specific.

"My life became more meaningful": confronting one's own end of life and its effects on well-being-a qualitative study.

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 .

Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers.

OBJECTIVES: Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers. METHODS: This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process. RESULTS: Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want. SIGNIFICANCE OF RESULTS: Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

It's like standing in front of a prison fence - Dying during the SARS-CoV2 pandemic: A qualitative study of bereaved relatives' experiences.

BACKGROUND: Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. AIM: Exploring bereaved relatives' experiences of end-of-life care during the SARS-CoV2 pandemic. DESIGN: Qualitative interview study with bereaved relatives. PARTICIPANTS: Thirty-two relatives of patients who died during the pandemic, regardless of infection with SARS-CoV2. RESULTS: Three core categories were identified: needs, burden and best practice. Relatives wished for a contact person responsible for providing information on the medical and mental condition of their family members. The lack of information, of support by others and physical closeness due to the visiting restrictions, as well as not being able to say goodbye, were felt as burdens and led to emotional distress. However, case-by-case decisions were made and creative ways of staying in touch were experienced positively. CONCLUSIONS: Our results indicate that the strong need for closeness when a family member was dying could not be met due to the pandemic. This led to suffering that can be prevented. Visits need to be facilitated by making considered decisions on a case-by-case basis. For easy communication with relatives, approaches should be made by healthcare professionals and support for virtual communication should be offered. Furthermore, the results of the study can help to implement or develop ideas to enable dignified farewells even during pandemics.

The last year of life for patients dying from cancer vs. non-cancer causes: a retrospective cross-sectional survey of bereaved relatives.

PURPOSE: To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life. METHODS: A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson's chi-square test and Mann-Whitney U test. RESULTS: We collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001). CONCLUSIONS: Non-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis. TRIAL REGISTRATION: Prospectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017).

Communication, Coordination, and Security for People with Multiple Sclerosis (COCOS-MS): a randomised phase II clinical trial protocol.

INTRODUCTION: Patients with multiple sclerosis (MS) have complex needs that range from organising one's everyday life to measures of disease-specific therapy monitoring to palliative care. Patients with MS are likely to depend on multiple healthcare providers and various authorities, which are often difficult to coordinate. Thus, they will probably benefit from comprehensive cross-sectoral coordination of services provided by care and case management (CCM). Though studies have shown that case management improves quality of life (QoL), functional status and reduces service use, such benefits have not yet been investigated in severely affected patients with MS. In this explorative phase ll clinical trial, we evaluated a CCM with long-term, cross-sectoral and outreaching services and, in addition, considered the unit of care (patients and caregivers). METHODS AND ANALYSIS: Eighty patients with MS and their caregivers will be randomly assigned to either the control (standard care) or the intervention group (standard care plus CCM (for 12 months)). Regular data assessments will be done at baseline and then at 3-month intervals. As primary outcome, we will evaluate patients' QoL. Secondary outcomes are patients' treatment-related risk perception, palliative care needs, anxiety/depression, use of healthcare services, caregivers' burden and QoL, meeting patients' and caregivers' needs, and evaluating the CCM intervention. We will also evaluate CCM through individual interviews and focus groups. The sample size calculation is based on a standardised effect of 0.5, and one baseline and four follow-up assessments (with correlation 0.5). Linear mixed models for repeated measures will be applied to analyse changes in quantitative outcomes over time. Multiple imputation approaches are taken to assess the robustness of the results. The explorative approach (phase ll clinical trial) with embedded qualitative research will allow for the development of a final design for a confirmative phase lll trial. ETHICS AND DISSEMINATION: The trial will be conducted under the Declaration of Helsinki and has been approved by the Ethics Commission of Cologne University's Faculty of Medicine. Trial results will be published in an open-access scientific journal and presented at conferences. TRIAL REGISTRATION NUMBER: German Register for Clinical Studies (DRKS) (DRKS00022771).

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

OBJECTIVE: A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

"Saying goodbye all alone with no close support was difficult"- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection.

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).

The effects of confronting one's own end of life on older individuals and those with a life-threatening disease: A systematic literature review.

BACKGROUND: Awareness of the impending end of one's life can pose profound existential challenges, thereby impairing well-being. Confronting one's own end of life may be an approach to meet the psychological needs and consequently enhance overall well-being. Different approaches of confrontation have been evaluated positively using measures of psychosocial comfort. To date, there exists no systematic overview on the different ways of confrontation (e.g. psychosocial or individual coping approaches). AIM: To synthesize the existing knowledge on the effects of different approaches of confronting one's own end of life on older individuals and those with a life-threatening disease. DESIGN: A systematic review of quantitative, qualitative, and mixed-methods full research reports was conducted. The retrieved studies were screened and appraised for methodological quality by two independent reviewers based on MMAT and CASP. The findings were synthesized narratively using the meta-summary technique by Sandelowski and Barroso. DATA SOURCES: Medline, PsycINFO, and Web of Science were searched from inception to 12/2020. RESULTS: N = 49 studies reported on different approaches of confronting one's own end of life, including psychosocial interventions, meaning-enhancing approaches, educational programs, and learning from lived experiences. The results suggest a clear trend toward beneficial effects on psychosocial comfort (e.g. anxiety, sense of meaning, well-being). CONCLUSION: Low-threshold opportunities of confrontation have the potential to improve well-being and should be emphasized in practical implementation. The results can serve as a comprehensive basis for future research aiming to investigate the determinants of psychosocial comfort for people nearing the end of life.

Last Year of Life Study-Cologne (LYOL-C) (Part II): study protocol of a prospective interventional mixed-methods study in acute hospitals to analyse the implementation of a trigger question and patient question prompt sheets to optimise patient-centred care.

INTRODUCTION: The Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) focuses on optimising patient-centred care in acute hospitals for patients identified to be in their last year of life. LYOL-C II aims to test an intervention for hospitals by using a two-sided (healthcare professionals (HCPs) and patients) trigger question-based intervention to 'shake' the system in a minimally invasive manner. METHODS AND ANALYSIS: Prospective interventional mixed-methods study following a two-phase approach: phase I, individual interviews with HCPs and patient representatives to design the intervention to maximise ease of implementation and phase II, exploratory study with two arms and a prepost design with patients in their last year of life. The intervention will consist of the Surprise Question and the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for HCPs to identify patients and provide patient-centred care, plus question prompt sheets for patients, encouraging them to initiate discussions with their HCPs. Data on transitions, changes in therapy, quality of care, palliative care integration and death of patients will be analysed. Furthermore, a staff survey (pre/post) and guided interviews with staff, patients and relatives (post) will be conducted. Finally, a formative socioeconomic impact assessment to provide evidence regarding the sustainability of the intervention will be performed. ETHICS AND DISSEMINATION: The study was approved by the Ethics Committee of the Faculty of Medicine of the University of Cologne (#20-1431). Results will be published in peer-reviewed journals and presented at national and international conferences. TRIAL REGISTRATION NUMBER: DRKS00022378.