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  • 1
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    “Withstanding ambivalence is of particular importance”—Controversies among experts on dealing with desire to die in palliative care
    Public Library of Science (PLoS) ; 2021
    In:  PLOS ONE Vol. 16, No. 9 ( 2021-9-24), p. e0257382-
    Details
    In: PLOS ONE, Public Library of Science (PLoS), Vol. 16, No. 9 ( 2021-9-24), p. e0257382-
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 1932-6203
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    URL: Article
    DOI: 10.1371/journal.pone.0257382
    DOI: 10.1371/journal.pone.0257382.g001
    DOI: 10.1371/journal.pone.0257382.g002
    DOI: 10.1371/journal.pone.0257382.g003
    DOI: 10.1371/journal.pone.0257382.g004
    DOI: 10.1371/journal.pone.0257382.t001
    DOI: 10.1371/journal.pone.0257382.t002
    Language: English
    Publisher: Public Library of Science (PLoS)
    Publication Date: 2021
    detail.hit.zdb_id: 2267670-3
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  • 2
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    Communication, Coordination, and Security for People with Multiple Sclerosis (COCOS-MS): a randomised phase II clinical trial protocol
    BMJ ; 2022
    In:  BMJ Open Vol. 12, No. 1 ( 2022-01), p. e049300-
    Details
    In: BMJ Open, BMJ, Vol. 12, No. 1 ( 2022-01), p. e049300-
    Abstract: 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).
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2021-049300
    Language: English
    Publisher: BMJ
    Publication Date: 2022
    detail.hit.zdb_id: 2599832-8
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  • 3
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    Online Resource
    Umgang mit Todeswünschen in der Palliativversorgung : Empfehlungen für die Gesprächsführung
    Hogrefe Publishing Group ; 2022
    In:  Therapeutische Umschau Vol. 79, No. 1 ( 2022-02), p. 61-66
    Details
    In: Therapeutische Umschau, Hogrefe Publishing Group, Vol. 79, No. 1 ( 2022-02), p. 61-66
    Abstract: Zusammenfassung. Im Zuge gesetzlicher Neuregelungen wird die Frage nach dem Umgang mit Todeswünschen kontrovers diskutiert. Aus der Perspektive der palliativen Versorgung wird dafür plädiert, das Thema Todeswunsch nicht auf den assistierten Suizid zu begrenzen, sondern in all seinen möglichen Ausprägungen und Facetten zu betrachten. Grundlegend dafür ist eine offene, interessierte und respektvolle Haltung gegenüber den Sichtweisen der Patienten. Entsprechende Zielsetzungen für den Umgang mit Todeswünschen sind in der «S3-Leitlinie Palliativmedizin für Patienten mit einer nicht heilbaren Krebserkrankung» formuliert. Unterstützung bei der Umsetzung dieser Ziele bieten Schulungen zum Thema sowie ein Leitfaden zur Gesprächsführung über möglicherweise vorliegende Todeswünsche. Offene Gespräche zum Thema dienen primär dazu, den Fokus weg vom sofortigen Einleiten von Massnahmen zu nehmen und stattdessen die Perspektive zu weiten, den Prozess zu verlangsamen und den emotionalen Raum zu öffnen. Mit dem so gewonnenen Verständnis über dem Todeswunsch zugrundeliegende Vorstellungen und Sorgen können weitere Schritte geplant werden. Dazu gehören etwa die Schmerzlinderung oder die Behandlung von Depressivität, um das mit Todeswünschen verbundene Leid zu verringern. Auch besteht die Möglichkeit, lebensverlängernde Massnahmen nicht zu ergreifen oder zu beenden. Falls bei Patienten ein ernsthafter und andauernder Wunsch nach assistiertem Suizid vorliegt, gilt es die Existenz eines solchen Wunsches anzuerkennen und angemessen darauf zu reagieren.
    Type of Medium: Online Resource
    ISSN: 0040-5930 , 1664-2864
    URL: Article
    DOI: 10.1024/0040-5930/a001329
    Language: German
    Publisher: Hogrefe Publishing Group
    Publication Date: 2022
    detail.hit.zdb_id: 82044-1
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  • 4
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    How do trained palliative care providers experience open desire to die-conversations? An explorative thematic analysis
    Cambridge University Press (CUP) ; 2022
    In:  Palliative and Supportive Care
    Details
    In: Palliative and Supportive Care, Cambridge University Press (CUP)
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 1478-9515 , 1478-9523
    URL: Article
    DOI: 10.1017/S1478951522001006
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2022
    detail.hit.zdb_id: 2121158-9
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  • 5
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    Development of a Long-Term Cross-Sectoral Case and Care Management Manual for Patients With Severe Multiple Sclerosis and Their Caregivers
    Ovid Technologies (Wolters Kluwer Health) ; 2023
    In:  Professional Case Management Vol. 28, No. 4 ( 2023-07), p. 183-193
    Details
    In: Professional Case Management, Ovid Technologies (Wolters Kluwer Health), Vol. 28, No. 4 ( 2023-07), p. 183-193
    Type of Medium: Online Resource
    ISSN: 1932-8087
    URL: Article
    DOI: 10.1097/NCM.0000000000000608
    Language: English
    Publisher: Ovid Technologies (Wolters Kluwer Health)
    Publication Date: 2023
    detail.hit.zdb_id: 2277281-9
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  • 6
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    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
    SAGE Publications ; 2024
    In:  Palliative Medicine
    Details
    In: Palliative Medicine, SAGE Publications
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163241269689
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2024
    detail.hit.zdb_id: 2027566-3
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  • 7
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    The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach
    Springer Science and Business Media LLC ; 2020
    In:  BMC Palliative Care Vol. 19, No. 1 ( 2020-12)
    Details
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 19, No. 1 ( 2020-12)
    Abstract: 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).
    Type of Medium: Online Resource
    ISSN: 1472-684X
    URL: Article
    DOI: 10.1186/s12904-020-00548-7
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2091556-1
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  • 8
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    Review of Jagna Brudzińska, Bi-Valenz der Erfahrung: Assoziation, Imaginäres und Trieb in der Genesis der Subjektivität bei Husserl und Freud, Dordrecht: Springer, 2019
    Springer Science and Business Media LLC ; 2022
    In:  Phenomenology and the Cognitive Sciences
    Details
    In: Phenomenology and the Cognitive Sciences, Springer Science and Business Media LLC
    Type of Medium: Online Resource
    ISSN: 1568-7759 , 1572-8676
    URL: Article
    DOI: 10.1007/s11097-022-09880-0
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2065657-9
    SSG: 5,1
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  • 9
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    Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study
    SAGE Publications ; 2022
    In:  Palliative Medicine Vol. 36, No. 3 ( 2022-03), p. 489-497
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 36, No. 3 ( 2022-03), p. 489-497
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163211065671
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2027566-3
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  • 10
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    Desire to Die: How Does the Patients’ Chorus Sound?
    SAGE Publications ; 2022
    In:  OMEGA - Journal of Death and Dying
    Details
    In: OMEGA - Journal of Death and Dying, SAGE Publications
    Abstract: 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.
    Type of Medium: Online Resource
    ISSN: 0030-2228 , 1541-3764
    URL: Article
    DOI: 10.1177/00302228221103393
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2066854-5
    SSG: 5,2
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