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.

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.

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 ).

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).

'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.