Table 6 Illustrative comments by patients, nurses and physicians

Information folder

Patient: “clear”, “good way of preparing”, “not very useful, too extensive”, “too much information”, “confronting”, “confronting, had not thought about this”, “a lot of important issues are addressed”

Preparatory questionnaire

Patient: “very positive”, “difficult to answer”, “good points to consider”, “confronting but also supporting”, “intense”, “in a nice way several issues were addressed”, “eventually positive”

Conversation manual

Nurse: “great to have questions as guideline”

Interaction nurse / physician (multidisciplinary setting)

Nurse: “physician concretised to medical decisions”, “physician outlined great examples”,

“physician clarified things”

Physician: “complementary”, “clear summary, nurse gave patient opportunity to add things if necessary”

How did you experience this conversation?

Patient: “good”, “important and sad”, “very positive”, “useful”, “clarifying”, “good and open”, “emotional”, “confronting”, “a revelation”, “I did not experience problems”

Nurse: “very good”, “open conversation about life and death and what matters most to the patient”, “important issues were discussed”, “difficult since patient did not know what the conversations was about and expectations were not clear”, “hard work”

Physician: “helped clarifying patient wishes”, “good to discuss these topics with the patient”, “difficult since it was hard to clarify patient wishes”

Did this conversation help you to express your wishes?

Patient: “more clarity”, “yes”, “yes I have been reassured”,

“certainly”, “I still need time to think about it”

What did the conversation yield?

Nurse: “well informed decision on treatment”, “a lot, patient was relieved”

“clarity concerning patient wishes”, “clarity concerning euthanasia”,

“peacefulness”, “patient realised that ageing and end of life is getting closer and that discussing this is important”, “insight in patient fears”, “clarity concerning resuscitations and ICU treatment”

Physician: “concrete decisions”, “change of medical decisions, supported by all stakeholders”, “awareness”, “the intervention stimulated the patient to think about her wishes and concrete treatment decisions”, “gratefulness and reassurance with patient”, “clear agreements”, “fears concerning suffocating taken away”, “good preparation for potential medical emergencies”

Did the benefits outweigh the burden?

Patient: “definitely, very important to discuss treatment in the last stage [of life]”, “yes, 100% worth it”, “there was no burden”, “certainly”, “I don’t know”

Nurse: “there was no burden”, “definitely”, “not sure, time investment is high”, “not sure, no clear results”

Physician: “certainly”, “I think the conversations are very important, however time investment is high”, “not sure”