Chapter 7 140 INTRODUCTION Palliative care aims to address needs and preferences of patients in the last phase of life, and their family.1 Effective communication is essential in determining their palliative care needs and values.2–4 Studies have shown that patients and family have information needs regarding palliative care, what their future will look like, prognosis and the dying phase.5–8 Specifically, they often do not know what to expect from palliative care consultations, which questions they may ask or what palliative care entails.9,10 Lack of knowledge decreases feelings of self-efficacy and results in perceived loss of control.11,12 Providing information can stimulate self-management, help patients and family cope with their current situation and prepare for the future.5 However, clinicians without formal palliative care training (non-specialists) often do not ask patients about palliative care needs sufficiently, especially when it concerns non-physical domains.13,14 Question prompt lists (QPLs) are structured lists of sample questions. These lists aim to support patients and family in formulating questions to obtain the information they need, in identifying their concerns, improving their communication with clinicians and, if possible, in fully participating in consultations and decision-making by expressing their wishes.15,16 Clayton et al developed a QPL for patients with palliative care needs.4 Patients who had used this QPL asked more questions, especially about prognosis and the future, compared with patients who had not used a QPL, and did not experience more anxiety than those who had not.6,17,18 Patients and family who had used QPLs in oncology memorised information better, and consultations were more tailored, while they did not take more time.19 In this study, we examined how a palliative care QPL is used and valued for hospital-based palliative care consultations from the viewpoint of patients and family and non-specialist clinicians. Using their perspectives, we further developed the QPL iteratively. METHODS Leiden Guide on Palliative Care The QPL under study is part of the Leiden Guide on Palliative Care. This conversation guide was developed in 2013 by our Center of Expertise in Palliative Care to assess symptom burden and to empower patients and family in identifying and formulating their questions and information needs regarding palliative care. The conversation guide includes the Utrecht Symptom Diary (a Dutch adaptation of the Edmonton Symptom Assessment Scale)20,21 for symptom assessment and a Dutch adaptation of Clayton et al.’s
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