All but one of the interviewees reported DD either as a wish for hastened death or as acceptance of death without requiring to hasten it. A desire for physician assisted suicide was reported explicitly once, and two interviewees preferred death to deteriorating symptoms. Isolation, the feeling of being a burden, hopelessness and fear of pain were reasons reported for DD.
Deductive categories based on topics from the interview guideline were complemented with inductive coding of the interviews, producing five main categories with various sub-categories: “Actively building the relationship”, “Conversation partner”, “Conversation context and structure”, “Conversation set up and framework” and „ Own Desire to Die “. Within the formulated categories, patients mainly confirmed the dimensions and recommendations of the clinical guideline draft, yet emphasized individuality:
Well, you can’t develop a very RIGID guideline, I think. It’ll need to cover a vast spectrum, starting from one point at the bottom and spreading VERY, VERY wide apart at the top. (51-year-old male with colon cancer)
However, some sub-categories added valuable insight and contributed to the revision of the guideline draft. Those sub-categories are reported below.
Almost all of the interviewees appreciated the proactive assessment of DD by HPs:
Interviewer: Would it have been helpful to you, if [the HP] had addressed [the DD]?
Patient: Yes. I think so. […] I don’t know how other patients feel, but talking about it was very difficult for me. (63-year-old female with abdominal cancer)
To initiate and discuss problems, establishing a trustful health-professional-patient-relationship is a prerequisite, which both sides have to allow for. Unobtrusively signaling an appreciative attitude best frames the setting: conscious eye contact and relational touch can help to establish intimacy, if appropriate:
Patient: Who among you [HPs] even gives hugs anymore or takes someone’s arm? […] You all have a hard time with that.
Interviewer: This would be something important to you?
Patient: Of COURSE. (57-year-old male with lower jaw cancer)
When arranging for an appropriate environment to talk about DD, privacy and the patient’s mental state should be taken into account. Furthermore, taking enough time was unanimously appreciated and considered helpful in signaling special attention.
One patient reported that thoughts concerning hastened death primarily arose upon first confrontation with her cancer diagnosis. Breaking bad news was also experienced as traumatic by other cancer patients.
While most of the patients preferred to talk to their physician, all members of the PC team were deemed fit for a dialogue about DD. If required, participants indicated that support from external experts should be sought:
Patient: [The HP said:] “We can call a pastoral worker for you […] to talk to.” […] I didn’t KNOW what to talk about with a pastoral worker. But he was here for an hour and there WAS a lot to talk about, apparently. (63-year-old female with uterine cancer)
Based on the clinical guideline draft revised after the patient interviews, a Delphi survey was conducted between 1/2018 and 3/2018. Round one was open for 22 days; round two for 16 days. There was almost no dropout (5.0%) between rounds; during the first round 210 invitees participated and 200 during round two. We excluded 61/51 panelists that did not meet inclusion criteria from analysis. Therefore, in both rounds, 149 participants were fit for data analysis according to inclusion criteria. This number goes far beyond our original recruitment plans, encompassing 50-70 panelists and is due to the overwhelming feedback from German (nursing) experts. With 91.3% of the sample reporting to work in direct patient contact, it consists largely of practitioners. For socio-demographic details on the Delphi sample see Table 1.
Suitability and usefulness
87% of the respondents (n = 129) valued the structure of the clinical guideline as ‘(very) suitable’, 95% (n = 141) rated the clinical guideline to be ’(very) useful’ for everyday clinical practice.
Importance of individual domains
Table 3 displays the results of the importance ratings for Delphi round one and two.
For all domains except ‘proactively addressing DD’, the a priori consensus criterion (≥80% agreement) was met during the first Delphi round (see Table 2). As only four domains did not reach 90% of agreement, we took reaching <90% to indicate potential for optimization and therefore asked our panelists to reevaluate all such domains (proactively addressing, classification, functions, further recommended action) in the second round. During round two, all domains except ‘proactively addressing DD’ reached an agreement ≥90%. As our panelists opposed too narrow prompts on how to address DD, we changed all interrogative clauses and prompts in the original draft into the instructions and circumscriptions found in the final version of the clinical guideline (see Additional File 2). Other modifications based on Delphi results are reported in Table 4.
No significant statistical differences in ratings for all domains were found among subsamples (e.g. gender, expertise, self-assessments).
Aside from the relatively moderate agreement on ‘proactively addressing DD’ during the Delphi process, classifying DD as thoughts of terminating life prematurely, wish for assisted suicide or active euthanasia in the clinical guideline was also met with concern. In the final version of the guideline, these classifications were nonetheless included but go hand in hand with introductory information that points out the broadness of the DD phenomenon. The introductory information in Additional file 3 shows this in more detail.