The Desire to Die in Palliative Care: A sequential mixed methods study to develop a semi-structured clinical aproach

Abstract

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 interview 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).

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

“…We report a secondary analysis of qualitative data generated during a two-round Delphi survey. The survey aimed at building consensus on the content and structure of the 'semi-structured clinical approach on (proactively) addressing desire to die' in patients receiving palliative care [17]. It was part of a three-phase research project aiming at optimizing the handling of desire to die in palliative care [18].…”

“…The Delphi survey was carried out applying the guidelines for conducting and reporting Delphi Studies (CREDES) in palliative care [20]. Participants rated statements on multiple domains of the clinical approach draft that was based on focus groups, literature research, advisory board recommendations and patient interviews [16,17]. The survey included the opportunity to provide free text comments.…”

“…In our Delphi survey, we addressed palliative care experts in order to develop a semi-structured clinical approach on dealing with desire to die [18]. We aimed at recruiting a heterogeneous sample of practitioners and theoreticians as both groups are involved in the international debate concerning desire to die in palliative care [17]. The sample for secondary data analysis was extracted from the original survey sample by singling out all respondents who met the inclusion criteria ('experts') and provided free text comments (see Fig 1).…”

“…We thus identified 149 experts among our participants-a significantly higher number of participations as recommended as minimum according to the CREDES recommendations (50 to 70) [20] and as originally aimed at [18]. A detailed description of the source sample can be found in an earlier publication [17]. A subsample of 103 panelists was identified for qualitative data analysis of 444 free text comments stated during the Delphi survey.…”

“…Therefore, a first needs-oriented training program for dealing with desire to die was developed and a clinical approach on addressing desire to die was drafted [16]. This clinical approach has been further developed and consented, inter alia by a Delphi survey with professional experts [17]. While experts reached consensus on the design of the clinical approach for everyday practice, they voiced divergent opinions in free text comments on how to best deal with desire to die.…”