Chapter 7 152 when patients and family had just received bad news, or when they were busy arranging medical visits and care. Some patients and family indicated that patients with cognitive problems would be unable to understand the QPL. Most clinicians regarded the QPL as too extensive for discussion in a single consultation of 10–15 min. They indicated they would only discuss the topics within their expertise and refer to other clinicians for the remaining, plan a second consultation or delegate the consultation to a (specialised) nurse. Topics selected and addressed during consultations The QPL was used in 25 audiotaped consultations (Table 2). A median of 18 topics were addressed during consultations (range: 11–28). Overall, more topics were addressed than patients had selected. Thirteen topics and the categories Complaints or problems, Social or meaning and Organisation of care were always addressed if these were selected. Sexuality and intimacy was never selected, nor discussed during the consultations. Role of the general practitioner was addressed during all consultations, despite it not often having been selected. Overall, palliative care consultants initiated topics more often than patients and families did, except for topics about the Last phase of life. Patients and family most often initiated the topics Meaning of life, Practical matters of the end of life and Course of the last phase of life. The palliative care consultant most often initiated the topics Household care, Medication for when I suddenly get more complaints and Palliative sedation. Suggestions to improve the content of the QPL Overall, the QPL’s content was considered to be comprehensive and relevant. Table 4 displays suggestions for additional topics and questions that patients, family and clinicians mentioned. They all wanted to add content but had different ideas about which content should be added. The interviewees noted that all topics in the QPL can be relevant to patients in the palliative phase and their family: “Oh, you don’t want to know everything we’re thinking about now. That is basically everything that is also in there [indicating the conversation guide].” (patient 11) “Everything [in the QPL] is relevant. It is a very good list. Not too much, not too little.” (clinician 12) Patients and family recommended keeping all topics and questions: topics irrelevant to themselves might be relevant to others; and clinicians agreed. Patients, family, and clinicians commented that they would not initiate discussing Sex and intimacy during a consultation:
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