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.
Highlights
The Delphi survey was carried out applying the guidelines for conducting and reporting Delphi Studies (CREDES) in palliative care [20]
Desire to die in palliative care framework”, the “extended care system” and the “health-professionalpatient-relationship”–all of which make their distinctive impacts on dealing with desire to die
Our empirical findings regarding the complexity of the palliative care situation correspond with results from a recent publication by Hodiamont et al who put forth a conceptual framework that differentiates between the subsystems “social system”, “team” and “patient” [26]
Summary
DesignWe 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 survey included the opportunity to provide free text comments. These comments were reinvestigated applying qualitative content analysis [21, 22] to categorize controversies surrounding desire to die. We report our study in accordance to the synthesis of recommendations for reporting qualitative research [23]
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