Non-specialist palliative care - question prompt list preparation 155 this topic during palliative care consultations and so invite patients and family to indicate whether they need information about intimacy and sexuality. Patients and family reported that the QPL’s content helped them to think about, formulate and discuss their questions and wishes and helped them gain an overview of what the future could hold for them, which corresponds with existing literature.4,17,26 In general, information helps patients to regain a sense of control over self-management.5 Patients felt further supported by the QPL because it educated them about palliative care and their possible needs in this regard. Our patients and family described loss of control when referred to the palliative care consultant, comparable with Rolland’s ‘crisis phase’.27 During this crisis phase, patients and family need to adapt to the situation with the new (incurable or palliative) diagnosis and only then, they can move on to adapting a more practical understanding about the illness and the new healthcare setting. Non-specialist clinicians considered the QPL helpful for patients and family to ask specific questions, corresponding with previous studies.4,28 Rogg et al. found that clinicians find discussing prognosis and future difficult for several reasons and might avoid these discussions.29 In our study, the clinicians mentioned that the QPL provided them with an overview of future scenarios to discuss with patients and family. Literature shows that the future is often an information need in patients and family.6,30 However, our findings from the analysis of the actual consultations demonstrate that patients more often selected items about Complaints or problems and Organisation of care. Discussions are facilitated when patients, family and clinicians explicitly agree on and allow each other to discuss difficult topics.31 In our study, patients and family felt that the QPL gave them permission to ask questions. By empowering patients and family, the QPL aids clinicians to formulate recommendations that are tailored to end-of-life preferences. This corresponds with Galekop et al.’s results on patient–clinician collaboration: palliative care specialists and volunteers viewed patient-centred care as the patient being either in the driver’s seat (i.e., respecting the patient ’s autonomy at all times), or in the passenger seat (i.e., collaborating with the patient and other clinicians and stepping in when the patient cannot decide for themselves; when he is too tired or insufficiently informed).32 Remarkably, items about the last phase of life were the only items that were initiated more frequently by patients and family than by the consultant. Perhaps patients and family perceive a consultation on palliative care as an opportunity to talk about the end of life, or consultants considered these to be delicate topics and adopted more of a ‘wait-and-see’ attitude. 7
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