The double awareness of the wish to hasten death and the will to live: A secondary analysis of outlier patients from a mixed-methods study.

BACKGROUND: Patients with serious illness frequently report (temporary) wishes to hasten death. Even until the end-of-life, many patients also harbor a will to live. Although both phenomena are negatively correlated according to some studies, they can also co-exist. Knowledge about the complex relationship between the seemingly opposing wish to hasten death and will to live is limited, but crucial for delivering adequate care and understanding potential requests for assisted dying. AIM: To study the correlation of and explore the relationship between wish to hasten death and will to live over 6 weeks. DESIGN: Observatory, prospective cohort study following a mixed methods design. Analysis of quantitative (Schedules of Attitudes Toward Hastened Death, a visual numerical scale and (additional) validated questionnaires) and qualitative (semi-structured interviews) data with illustrative case descriptions. SETTING/PARTICIPANTS: Patients receiving palliative care with heterogenous underlying diseases from various care settings, before and after an open conversation on a possible desire to die. RESULTS: In n = 85 patients, wish to hasten death and will to live were strongly negatively correlated at three time points (baseline: r(65) = -0.647, p ⩽ 0.001; after 1 week: r(55) = -0.457, p ⩽ 0.001 and after 4-6 weeks: r(43) = -0.727, p ⩽ 0.001). However, visual assessment of scatterplots revealed a small, but substantial number of outliers. When focusing on these outlier patients, they showed clinically relevant changes between baseline and 6 weeks with the wish to hasten death changing in n = 9 (15% of n = 60) and the will to live changing in n = 11 (18.6% of n = 59). Interview data of three outlier cases illustrates unusual trajectories and possible factors which may influence them. CONCLUSIONS: As they can co-exist in different possible combinations, a high wish to hasten death does not necessarily imply a low will to live and vice versa. Patients receiving palliative care can hold such seemingly opposing positions in mind as a form of coping when confronted with an existential threat of serious illness. Therefore, health professionals are encouraged to proactively engage patients in conversation about both phenomena.

[Opportunities and Challenges Of The Ethics Review Of Qualitative Health Services Research: A Survey Of Qualitative Researchers]. / Chancen und Herausforderungen der Ethikbegutachtung qualitativer Versorgungsforschung ­ eine Befragung qualitativ Forschender.

Ethics committees ensure compliance with ethical principles in medical research. They are oriented towards clinical studies, but also review e. g., qualitative research. Using a semi-structured online survey, we collected data on experiences of qualitative researchers with the review by ethics committees and analysed them via content analysis. In July 2019, 73 researchers took part in the survey. Five main topics were derived from their statements regarding the ethics review of qualitative research: 1. relevance of qualitative research expertise; 2. cooperation between researchers and ethics committees; 3. transparency of review criteria; 4. dealing with formal review requirements; 5. evaluation of the review's significance for qualitative research. The results show the potential of ethics review for reflection on ethical questions in qualitative research. Prerequisites for this are the fit with the characteristics and quality criteria of qualitative research, the presence of qualitative research expertise in ethics committees, the transparency of the ethics review process as well as openness to different professional cultures and a constructive communication culture.

["This is Not at All Foreseeable from the Outset" - Research Ethics in Qualitative Health Services Research: A Survey of Researchers]. / "Das ist vorher gar nicht absehbar"? ­ Forschungsethische Fragen in der qualitativen Versorgungsforschung. Eine Befragungsstudie mit Forschenden.

BACKGROUND: Health services research is multidisciplinary and involves the use of a plurality of research methods. Medicine as a discipline serves as an important reference, also in terms of addressing ethics issues in research. At the same time, however, the highly formalized ethical reviews common in medicine, are controversial within the social sciences, especially among qualitative researchers. So far, little is known about which research ethics issues arise in qualitative health services research. METHODS: In summer 2019, an online survey was conducted among health services researchers on two main topics: a) research ethics issues in qualitative health services research and b) experiences with the ethics review procedures. The questionnaire contained ten open questions; the responses were analyzed for content. The first topic (ethical issues) is addressed within this article. RESULTS: A total of 73 researchers with heterogeneous professional background and an average of more than seven years of work experience in health services research participated in the survey. The following were reported as central research ethics issues: a) legitimacy and anticipation of ethical challenges in the planning of research, b) field access, consent and burdens during data collection, c) anonymization and data protection in data processing, d) data analysis, e) publication of results and data and f) general topics such as central principles and goals of research as well as the role of researchers. The main formats for dealing with these issues were exchange and consultation as well as referring to texts and regulations. CONCLUSIONS: On the one hand, the data documents typical central research ethics questions that researchers are confronted with in the context of qualitative health services research; on the other hand, they also point to gaps and less considered topics. A systematizing ethical reflection could take up these findings in order to develop health services research-specific principles and strategies for handling research ethics issues.

Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study.

BACKGROUND: Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it. AIM: We aim to evaluate effects of desire to die-conversations on palliative patients. DESIGN: Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire to die. Afterwards, they held conversations about it with patients. Effects on depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional-relationship, and will to live were evaluated at baseline (t0), 1 (t1), and 6 weeks afterwards (t2). Results were analyzed descriptively. SETTING/PARTICIPANTS: From April 2018 to March 2020, 43 health professionals asked 173 patients from all stationary and ambulatory palliative care settings (within 80 km radius) for participation. Complete assessments were obtained from n = 85 (t0), n = 64 (t1), and n = 46 (t2). RESULTS: At t1, patients scored significantly lower on depressiveness (med = 8, M = 8.1, SD = 5.4) than at t0 (med = 9.5, M = 10.5, SD = 5.8) with Z = -3.220, p = 0.001 and Cohen's d = 0.42. This was due to medium-severely depressed patients: At t1, their depressiveness scores decreased significantly (med = 9, M = 9.8; SD = 5.1) compared to t0 (med = 14, M = 15.2; SD = 3.9) with Z = -3.730, p ⩽ 0.000 and Cohen's d = 1.2, but others' did not. All other outcomes showed positive descriptive trends. CONCLUSIONS: Desire to die-conversations through trained health professionals do not harm palliative patients. Results cautiously suggest temporary improvement.

Network Oncolgy Specialist Advisory Service - A Survey of the Psychosocial Situation of Long Term Cancer Survivors During Childhood or Adolescents.

BACKGROUND: The number of long term cancer survivors during childhood or adolescence is increasing steadily. Survivors often suffer from physical or psychosocial long term effects. There is currently little data on the arrangement of long term aftercare in the field of psychosocial care. METHODS: In November 2017 a questionnaire was sent to 1900 cancer survivors aged between 18 and 35 years whose diagnosis dated at least five years prior. The obtained data serve as a condition and needs assessment, how the (psychosocial) long-term aftercare is perceived by the survivors and what else is desired. The analysis was conducted using descriptive statistics as well as the calculation of bivariate correlations. RESULTS: The response rate was 54.9% (n=1.043). The median interval from the first diagnosis was 20 years. In total 666 survivors (63.9%) stated that they suffered from at least one long term effect. Within this, especially neurocognitive themes played a role. 87.2% of the respondents had the feeling that they had overcome the illness/therapy well. CONCLUSION: Through a stronger patient-focussed orientation concerning the current care and advisory services, the situation of long term survivors could be improved. This especially includes access to relevant information that focuses on the available psychosocial and welfare services, as well as to advisory and care services. Additionally, the development and expansion of care structures in the areas of neurocognition and psychotherapy is important to ensure long term participation attendance. HINTERGRUND: Die Zahl der Langzeitüberlebenden nach einer Krebserkrankung im Kindes- oder Jugendalter (Survivor) steigt stetig. Survivor leiden nicht selten unter körperlichen oder psychosozialen Spätfolgen. Für die Gestaltung der Langzeitnachsorge im Bereich der psychosozialen Versorgung liegen bislang kaum Daten vor. METHODE: 11/2017 wurde deutschlandweit ein Fragebogen an 1.900 Survivor im Alter von 18 bis 35 Jahren versandt, deren Erstdiagnose zum Befragungszeitpunkt mindestens fünf Jahre zurücklag. Die erhobenen Daten dienen als Zustands- und Bedarfserhebung, wie die (psychosozialen) Langzeitnachsorge von den Survivorn wahrgenommen und was darüber hinaus gewünscht wird. Die Auswertung erfolgte mittels deskriptiver Statistik sowie der Berechnung bivariater Korrelationen. ERGEBNISSE: Der Rücklauf betrug 54,9% (n=1.043). Der mediane Abstand zur Erst-Diagnose betrug 20 Jahre. Insgesamt gaben 666 Survivor (63,9%) an, mindestens eines der abgefragten Items/Symptome bei sich zu beobachten. Hierbei spielen besonders neurokognitive Themen eine Rolle. Viele Angebote der Langzeitnachsorge sind den Survivorn nicht bekannt. 87,2% der Befragten haben das Gefühl, die Erkrankung/Therapie gut gemeistert zu haben. SCHLUSSFOLGERUNG: Eine stärkere patientenorientierte Ausrichtung der derzeitigen Versorgungs- und Beratungsangebote könnte die Situation von Langzeitüberlebenden noch verbessern. Zentral sind hierbei der Zugang zu gezielten Informationen, eine psychosoziale und sozialrechtliche Betreuung sowie der Zugang zu Beratungs- und Versorgungsangeboten. Auch der Auf- und Ausbau von Versorgungsstrukturen im Bereich der Neurokognition und Psychotherapie ist für die langfristige Sicherstellung von Partizipation wünschenswert.

Dying in hospital in Germany - optimising care in the dying phase: study protocol for a multi-centre bottom-up intervention on ward level.

BACKGROUND: Hospitals are globally an important place of care for dying people and the most frequent place of death in Germany (47%), but at the same time, the least preferred one - for both patients and their relatives. Important indicators and outcome variables indexing quality of care in the dying phase are available, and various proposals to achieve corresponding quality objectives exist. However, they are not yet sufficiently adapted to the heterogeneous needs of individual hospital wards. METHODS: This multi-centre single-arm pre-post study aims at the development and implementation of context-specific measures in everyday clinical practice, followed by evaluating this approach. Therefore, (1) already existing measures regarding optimal care in the dying phase are identified applying a systematic literature review as well as an online survey and a symposium with experts. Supported by the thereby generated collection of measures, (2) a stratified sample of ten teams of different wards from two university hospitals select suitable measures and implement them in their everyday clinical practice. Circumstances of patients' deaths on the selected wards are recorded twice, at baseline before application of the self-chosen measures and afterwards in a follow-up survey. Retrospective file analysis of deceased persons, quantitative staff surveys as well as qualitative multi-professional focus groups and interviews with relatives form the data basis of the pre-post evaluation. (3) Results are reviewed regarding their transferability to other hospitals and disseminated (inter-)nationally. DISCUSSION: Measures that are easy to implement and appropriate to the specific situation are supposed to significantly improve the quality of care during the dying phase in hospitals and contribute to the well-being of dying patients and their relatives. Successful implementation of those measures requires consideration of the individual conditions and needs of patients and their relatives-but also of the health professionals-on the different hospital wards. Therefore, a bottom-up approach, in which the ward-specific situation is first analysed in detail and then the staff itself selects and implements measures to improve care, appears most promising for optimising care in the dying phase in hospitals. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register ( DRKS00025405 ).

[DNVF Memorandum: Health Services Research in the Last Year of Life]. / DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr.

This memorandum outlines current issues concerning health services research on seriously ill and dying people in the last year of their lives as well as support available for their relatives. Patients in the last phase of life can belong to different disease groups, they may have special characteristics (e. g., people with cognitive and complex impairments, economic disadvantage or migration background) and be in certain phases of life (e. g., parents of minor children, (old) age). The need for a designated memorandum on health services research in the last year of life results from the special situation of those affected and from the special features of health services in this phase of life. With reference to these special features, this memorandum describes methodological and ethical specifics as well as current issues in health services research and how these can be adequately addressed using quantitative, qualitative and mixed methods. It has been developed by the palliative medicine section of the German Network for Health Services Research (DNVF) according to the guidelines for DNVF memoranda.

How do trained palliative care providers experience open desire to die-conversations? An explorative thematic analysis.

OBJECTIVES: Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die, we requested trained health professionals to lead and document desire to die-conversations with their patients. In this article, we explore how trained health professionals experience an open (proactive) approach to desire to die-conversations with their patients. METHODS: Between April 2018 and March 2020, health professionals recorded their conversation-experiences on documentation sheets by answering seven open questions. A subsample was invited to offer deeper insights through semi-structured qualitative interviews. Interviews and documentation sheets were transcribed verbatim and analyzed thematically, then findings from both sources were compared and synthesized. RESULTS: Overall, N = 29 trained health professionals documented N = 81 open desire to die-conversations. A subsample of n = 13 health professionals participated in qualitative interviews. Desire to die-conversations after the training were reported as a complex but overall enriching experience, illustrated in seven themes: (1) beneficial (e.g., establishing good rapport) and (2) hindering aspects (e.g., patients' emotional barriers) of desire to die-conversations, (3) follow-up measures, (4) ways of addressing desire to die, as well as (5) patient reactions to it. The interviews offered space for health professionals to talk about (6) content of desire to die-conversation and (7) (self-)reflection (e.g., on patients' biographies or own performance). SIGNIFICANCE OF RESULTS: As part of an open (proactive) approach, desire to die-conversations hold potential for health professionals' (self-)reflection and a deeper understanding of patient background and needs. They may lead to a strengthened health professional-patient relationship and potentially prevent suicide.

[Dealing with Desire to Die in Palliative Care]. / Umgang mit Todeswünschen in der Palliativversorgung.

Dealing with Desire to Die in Palliative Care Abstract. In the course of new legal regulations, the question of how to deal with desire to die is the focus of current professional debates. From the perspective of palliative care, a desire to die should not be thought of only as the wish for assisted suicide, but should be recognised in all its possible forms and facets. An open, respectful, and interested approach towards patient perspectives is therefore essential. Goals for dealing with desire to die are formulated within the S3 guideline "Palliative care for patients with incurable cancer". Support for the implementation of such goals is provided by trainings on the topic and a clinical guideline for the discussion of a potential desire to die. Open communication about the topic primarily helps to shift the focus from taking immediate action towards a widening of perspectives, a slowing of the process and the opening of an emotional space. Decisions regarding next steps can then be made based on a richer understanding of possible underlying concerns and expectations related to desire to die. These steps can include pain management and the treatment of depression to reduce suffering associated with a desire to die. Measures may also consist of foregoing or terminating life-prolonging measures. If patients have a serious and persistent wish for assisted suicide, the existence of such a wish should be recognized and addressed appropriately.

Desire to Die: How Does the Patients' Chorus Sound?

Patients receiving palliative care often express a desire to die. Forms and backgrounds of these expressions can be diverse. To contribute to a better understanding of this phenomenon, we analyzed patients' desire to die expressions reported by palliative care providers participating in 11 communication trainings on desire to die. The 102 participants were asked to reproduce related patients' statements from their everyday practice. The 165 reported statements could be assigned to the four topics: "Putting an end to life by …," "Social death," "Death images," as well as "Specific and unspecific references to life, death and dying." Across these topics, phrasing differs particularly regarding sentence type (interrogative, declarative, propositional, exclamatory), explicitness and (the way of) referencing others (e.g. attribution of power). The compilation of statements reflects a chorus of expressions, which the palliative care providers might hear throughout their professional career as well as during a patient's process(ing) of disease.

The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach.

BACKGROUND: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. METHODS: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. RESULTS: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die". CONCLUSIONS: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Communication about the desire to die: Development and evaluation of a first needs-oriented training concept - A pilot study.

OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach. METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content. RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic. SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.

Prevalence of hyponatremia in inpatients with incurable and life-limiting diseases and its association with physical symptoms-a retrospective descriptive study.

PURPOSE: Hyponatremia is a common electrolyte abnormality seen in hospitalized patients. It may cause a variety of symptoms and is associated with longer hospitalizations and higher mortality. However, to date, only little is known about the extent of hyponatremia in patients with incurable diseases and whether it is associated with physical symptoms in this patient group. This study aims to describe the prevalence of hyponatremia, associated symptoms, and symptom intensity in inpatients with hyponatremia receiving specialist palliative care (SPC). METHODS: This is a retrospective study. Demographic and clinical data as well as symptoms, scored symptom intensity, and laboratory values were collected. All inpatients of a large German University Hospital receiving SPC in 2013 with documented sodium values were included. RESULTS: In 2013, 789 inpatients received SPC of which 710 had documented sodium values. The prevalence of hyponatremia was 38.7% (275/710). A mild degree showed 220 (31,0%), 44 (6.2%) had a moderate, and 11 (1.6%) a severe form. Hyponatremia patients experienced significantly more symptoms than normonatremic patients (mean = 7.71 vs 6.63; p < 0.001). Breathlessness, depressiveness, nausea, vomiting, poor appetite, constipation, and weakness were significantly more frequent in patients with hyponatremia. Furthermore, hyponatremia severity was associated with higher symptom intensity (mean = 13.29 vs 11.28; p < 0.001). CONCLUSIONS: More than one third of all SPC patients showed a hyponatremia, and the hyponatremia grade was associated with symptom burden and symptom intensity. A prospective analysis is needed to further examine this association and the possible influence of hyponatremia correction on symptom burden reduction.

The DEsire to DIe in Palliative care: Optimization of Management (DEDIPOM) - a study protocol.

BACKGROUND: A desire to die (DD) is frequent in palliative care (PC). However, uncertainty remains as to the appropriate therapeutic response. (Proactive) discussion of DD is not usually part of standard care. To support health practitioners' (HPs) reactions to a patient's DD, a training program has been developed, piloted and evaluated. Within this framework, a first draft of a semi-structured clinical interview schedule with prompts (CISP) has been developed, including recommendations for action to support HPs' self-confidence. The aim of this study is the further development of the CISP to support routine exploration of death and dying distress and proactive addressing of a DD. METHODS: This observatory, prospective health services study comprises a three step study design: 1. Revision of the CISP and consensus finding based on semi-structured interviews with patients and a Delphi process with (inter-)national experts, patient representatives and relatives; 2. Increasing confidence in HPs through a 2 day-training program using the consented CISP; 3. A formative quantitative evaluation of conversations between HPs and patients (300 palliative patients at three time points) and a qualitative evaluation based on interview triads of patients, relatives and HPs. The evaluation of conversations will include patient-oriented outcomes, including perceived relationships with HPs and death and dying distress. We will also consider aspects of social inequality and gender. DISCUSSION: The intervention can provide a framework for open discussion of DD and a basis for enhancing a trustful HP-patient relationship in which such difficult topics can be addressed. The benefits of this study will include (a) the creation of the first consented semi-structured approach to identify and address DD and to respond therapeutically, (b) the multi-professional enhancement of confidence in dealing with patients' DD and an intervention that can flexibly be integrated into other training and education programs and (c) an evaluation of effects of this intervention on patients, relatives and HPs, with attention to social inequality and gender. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register ( DRKS00012988 ; registration date: 27.9.2017) and in the Health Services Research Database ( VfD_DEDIPOM_17_003889 ; registration date: 14.9.2017).

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.

The Wish to Hasten Death in Patients With Life-Limiting Conditions. A Systematic Overview.

CONTEXT: A systematic review of the wish to hasten death among people with life-limiting conditions was published in 2011. Since then, other reviews and primary studies have been published that have added to knowledge regarding the conceptual definition, aetiology and assessment of the wish to hasten death. OBJECTIVES: To provide an updated synthesis of the literature on the wish to hasten death in people with life-limiting conditions. METHODS: An overview of systematic reviews and primary studies was conducted, using an integrative review method. PubMed, CINAHL, Scopus and Web of Science databases were searched, from their inception until 2023. We included all systematic reviews published to date and all primary studies not included in these systematic reviews. RESULTS: Eleven systematic reviews and 35 primary studies were included. We propose that the phenomenon may usefully be considered as existing along a continuum, defined by the extent to which thoughts of dying are linked to action. A total of nine assessment tools have been described. The reported prevalence of the wish to hasten death appears to be influenced by the wording used in assessment instruments, as well as by the cut-off used when applying a particular tool. Depression, pain, functional disability, decreased sense of meaning in life, the sense of being a burden and reduced quality of life are the most widely reported related factors. CONCLUSION: This overview underscores the need for clinical strategies that can identify different manifestations of the wish to hasten death among people with life-limiting conditions.

'Desire to Die' in palliative care patients-legal framework and recommendations of the national evidence-based guideline on palliative care in Germany.

BACKGROUND: Desire to die, understood as a broad phenomenon, is common in patients receiving palliative care. Euthanasia ("termination of life on request", §216 German Criminal Code) is currently forbidden in Germany, the legal restrictions with regard to assisted suicide ("assistance of suicide with intent of repeated conduct", §217 German Criminal Code) has recently been repealed by the national Federal Constitutional Court. This dynamically changing legal situation adds to health professionals reported uncertainty in dealing appropriately with a desire to die. METHODS: As part of the new extended version of the German Palliative Care Guideline for Patients with Incurable Cancer, evidence and consensus-based statements and recommendations on desire to die were developed by an interdisciplinary and multi-professional working group. The best available evidence was identified through systematic literature searches and by asking experts for further known quantitative as well as qualitative literature. Included publications were assessed as recommended by the Scottish Intercollegiate Guidelines Network (SIGN). Due to the limited availability of high-quality empirical publications related to desire to die, close attention was paid to national clinical expertise to develop recommendations. Consensus for these recommendations was reached at a conference of the guideline group consisting of elected representatives from 61 professional societies and patient associations. Each recommendation was approved by at least 75% of those present. RESULTS: The expert panel developed and agreed on 21 statements and recommendations on desire to die and related phenomena. A descriptive definition was agreed upon of desire to die as a complex phenomenon with individual causes, manifestations, and consequences. The potential background of desire to die, its meanings, functions and possible interventions are described. The guideline recommends proactively addressing and exploring a potential desire to die as the intervention that should be considered before all others, because evidence from studies on suicidality found no negative effect when asking study participants about suicidality. CONCLUSIONS: The guideline informs health professionals working within the German statutory framework, how to care for and communicate with patients who are receiving palliative care and who express a desire to die.

"Withstanding ambivalence is of particular importance"-Controversies among experts on dealing with desire to die in palliative care.

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.