“Withstanding ambivalence is of particular importance”—Controversies among experts on dealing with desire to die in palliative care

Kremeike, Kerstin; Dojan, Thomas; Rosendahl, C.; Jünger, Saskia; Romotzky, Vanessa; Boström, Kathleen; Frerich, Gerrit; Voltz, Raymond

doi:10.1371/journal.pone.0257382

Cited by 12 publications

(16 citation statements)

References 64 publications

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“…12 Further results of the project have been published elsewhere. 13,14 Within study phase 1, the clinical approach on dealing with desire to die was developed. 12,13 Subsequently, in phase 2, health professionals from all palliative care settings within a radius of 80 km were invited to take part in multi-professional 2-day trainings.…”

Section: Methodsmentioning

confidence: 99%

“…7 Conversations about it are often avoided due to perceived taboos surrounding the topic, for example, fear of causing or increasing suicidality. 14 Moreover, starting conversations about medical assistance in dying is forbidden in some jurisdictions, such as Victoria (Australia)—a heavily criticized regulation. 8 This contrasts a societal shift toward demands for a self-determined end of life: the last decades saw a trend toward more liberal regulations regarding medical aid in dying worldwide, for example, in Canada, USA, The Netherlands, Belgium, Swiss, or Germany.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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“…Ethical dilemmas, insu cient training in how to relate to patients who express a wish to die [31] and the belief that dealing with this issue is not the responsibility of nurses are all factors that may lead to missed nursing care [32]. In this respect, the de nition of a nursing diagnosis for the wish to die would raise awareness within the profession and help to focus attention on improving the care that is offered to patients who express such a wish.…”

Section: The Nursing Response To a Wish To Diementioning

confidence: 99%

Definition and validation of the nursing diagnosis label “wish to die”: A research protocol.

Monforte-Royo,

Goni-Fuste,

Crespo

et al. 2023

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Background: Euthanasia has been incorporated into the health services of seven countries. The legalisation of these practices has important repercussions for the competences of nurses, and it raises questions about their role. When a patient with advanced disease expresses a wish to die, what is expected of nurses? What are the needs of these patients, and what kind of care plan do they require? What level of autonomy might nurses have when caring for these patients? The degree of autonomy that nurses might or should have when it comes to addressing such a wish and caring for these patients has yet to be defined. Recognising the wish to die as a nursing diagnosis would be an important step towards ensuring that these patients receive adequate nursing care. This study-protocol aims to define and validate the nursing diagnosis wish to diein patients with advanced disease, establishing its defining characteristics and related factors; to define nursing-specific interventions for this new diagnosis. Methods: A prospective three-phase study will be carried out. Phase-A) Foundational knowledge: an overview of systematic reviews will be conducted; Phase-B) Definition and validation of the diagnostic nomenclature, defining characteristics and related factors by means of an expert panel, a Delphi study and application of Fehring’s diagnostic content validation model; Phase-C) Consensus validation of nursing-specific interventions for the new diagnosis. At least 200 academic and clinical nurses with expertise in the field of palliative care will be recruited as participants across the three phases. Discussion: The definition of the wish to die as a nursing diagnosis would promote greater recognition and autonomy for nurses in the care of patients who express such a wish, providing an opportunity to alleviate underlying suffering through nursing-specific interventions and drawing attention to the needs of patients with advanced disease. The new diagnosis would be an addition to nursing science and would provide a framework for providing care to people with advanced disease who express such a wish. Nurses would gain professional autonomy about identifying, exploring and responding clinically to such a wish.

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“…In contrast, we propose a more open approach toward desire to die in palliative care which can take on various forms and is not limited to requesting MAiD (German Guideline Programme in Oncology, 2020). Our broad definition conceptualizes a desire to die as an idiosyncratic and dynamic phenomenon on a continuum of increasing suicidal pressure to act (German Guideline Programme in Oncology, 2020; Kremeike et al, 2021a), including the wish to hasten death (WTHD) and requests for MAiD as only a few of various possible forms of desire to die (Balaguer et al, 2016). While some patients receiving palliative care merely express their acceptance of death or tiredness of life without a WTHD, some harbor latent wishes to die in case of worsening symptoms and only a few may develop acute suicidality (German Guideline Programme in Oncology, 2020; Kremeike et al, 2021a).…”

Section: Introductionmentioning

confidence: 99%

“…Our broad definition conceptualizes a desire to die as an idiosyncratic and dynamic phenomenon on a continuum of increasing suicidal pressure to act (German Guideline Programme in Oncology, 2020; Kremeike et al, 2021a), including the wish to hasten death (WTHD) and requests for MAiD as only a few of various possible forms of desire to die (Balaguer et al, 2016). While some patients receiving palliative care merely express their acceptance of death or tiredness of life without a WTHD, some harbor latent wishes to die in case of worsening symptoms and only a few may develop acute suicidality (German Guideline Programme in Oncology, 2020; Kremeike et al, 2021a). Our open approach thereby corresponds to other international efforts to re-conceptualize dealing with desire to die or administering MAiD as a "relational care process that occurs over time" (Wright et al, 2017, p. 61).…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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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.

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“Withstanding ambivalence is of particular importance”—Controversies among experts on dealing with desire to die in palliative care

Cited by 12 publications

References 64 publications

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

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

Definition and validation of the nursing diagnosis label “wish to die”: A research protocol.

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

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