Chapter 9 224 The Surprise Question, “Would I be surprised if this patient died within one year?”, is used as an instrument to early identify patients with palliative care needs.14 Its use as a screening tool is recommend by the Netherlands Quality Framework for Palliative Care.2 The prognostic value of the Surprise Question in the ED had already been studied in patients with heart failure and in elderly patients.15, 16 No studies had been conducted yet in patients with advanced cancer visiting the ED. After identification of patients who may benefit from a palliative care approach, clinicians should assess which palliative care needs patients and their family have, in order to tailor palliative care. Comprehensive assessment includes multidimensional assessment of symptom burden and information needs. The Center of Expertise in Palliative Care of Leiden University Medical Center, the Netherlands, makes use of the Leiden Guide on Palliative Care (LGP) to guide their consultations with patients and family. The LGP exists of two parts. The first part comprises the Utrecht Symptom Diary, which is a translated and adapted Edmonton Symptom Assessment Scale.17, 18 The Utrecht Symptom Diary is used for measuring and monitoring symptom burden in the palliative phase on numeric rating scales of 1-10 of twelve symptoms that often occur in the palliative phase. The second part is a question prompt list on palliative care, a Dutch adaption of the version developed by Clayton et al.19 Patients and family can indicate in the question prompt list which topics and questions they wish to discuss during consultation. Patients and family who had used the question prompt list asked twice as many questions compared to those who had not.20 Before conducting the studies included in this thesis, no Dutch question prompt list on palliative care had been evaluated. Moreover, the relationship between symptom burden and information needs, and what this could mean for initiating tailored conversations about palliative care, had not been studied before. Appropriate education, insight into the use of trigger moments such as ED-visits, timely identification of patients in need of palliative care, and comprehensive assessment including assessment of symptom burden and information needs, are all key elements contributing to palliative care warranting a proactive approach. This thesis aims at identifying opportunities to improve patient-centred and proactive palliative care. The research objectives of the studies in this thesis were the following: 1. To assess the extent to which end-of-life care is taught at medical schools in the Netherlands and to find opportunities to improve Dutch medical curricula. 2. To explore palliative care needs and the extent of proactive care in patients with advanced cancer who visited the emergency department (ED) in the last three months of their lives.
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