Chapter 7 154 palliative phase was part of the disease trajectory; they therefore considered all items in the QPL to be relevant: “These are not nice topics, of course not, (…) but I personally find these kinds of subjects challenging. Like, well yes, the time will come, so you should be as prepared as possible.” (patient 2). DISCUSSION Main findings This study evaluated the use of a QPL as part of a conversation guide on palliative care, by means of interviews with patients, family, patient/family advocates and clinicians without formal palliative care training (non-specialists), and by audiotaping consultations with palliative care consultants. Patients and family indicated that the QPL had supported them in thinking about their care preferences and sharing their needs during consultations. Some content could evoke strong emotions in them, but their real challenge was being in the palliative phase. The clinicians indicated that the QPL could help remind them to address relevant palliative care issues. The QPL was improved according to the perspectives of patients, family, and clinicians (Supplements 6 and 7). Barriers to optimal use reported by interviewees included insufficient introduction of patients and family to palliative care and the QPL, lack of time and energy to go through the QPL and patients not seeing themselves as being in need of palliative care. All interviewees considered the content of the QPL to be relevant, clear, and comprehensive, and useful to prepare for palliative care consultations. Arthur et al. shortened the original QPL on which the present one was based using a Delphi study among clinicians, because of evidence suggesting that clinicians would prefer a brief QPL.4,23 The patients, family, and clinicians in our study, similar to Clayton’s study,4 considered the QPL to be extensive, but they would not shorten it, preferring a broader scope of topics. One topic, Sexuality and intimacy, was never selected or discussed. Interviewees doubted they would initiate this topic. Cathcart-Rake et al. reported clinicians would not discuss sexuality and intimacy in palliative care because they prioritise a holistic view, have time constraints, are not used to talking about sexuality and intimacy or experience it as a taboo.24 At the same time, many palliative care patients have unmet intimacy needs: 48% reported their illness impacted their intimacy; and >75% thought discussing intimacy was helpful both for patients who died within 3 months and patients who lived longer than 3 months.25 We therefore recommend clinicians to bring up
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