General discussion 189 Symptom Diary precedes the question prompt list. Because of this order, patients may have indicated information needs about symptoms more frequently than information needs about other topics. This study included mostly patients with advanced cancer, reflecting a specialised setting of an academic medical centre. Therefore, caution must be taken when interpreting the results for patients with other diseases in the palliative phase. The LGP is selectively distributed by the palliative care consultants of Leiden University Medical Center, who estimate whether patients are fit enough to go through the LGP. If they already may be in the dying phase, the LGP is not handed out. This may have led to selection bias because the study lacks data from those in the dying phase and those who did not have enough energy to go through the LGP. In addition, it is possible that some patients did not receive or use the Leiden Guide because they were not emotionally ready to read about palliative care topics. Patients could decide themselves not to use (parts of) the LGP. In Chapter 7, a mixed-methods research design was used to evaluate how the question prompt list of the LGP is used and could be further developed. Data from interviews with patients, family and non-specialist palliative care clinicians, and audiotaped consultations of our palliative care consultation team were included. The patients who were interviewed mostly had cancer. It is possible that patients with different diagnoses have other information needs. The included generalist (non-specialist) clinicians had not used the question prompt list before. Their responses in the interviews were therefore hypothetical and may differ from clinical practice. 8.3 IMPLICATIONS OF THE OUTCOMES OF THIS THESIS The studies presented in this thesis address various themes within the broad scope of palliative care. The common theme explored is proactivity in palliative care, and how it can be improved. Opportunities are identified to improve a proactive approach in palliative care in good quality undergraduate medical education, empowerment of patients and family during palliative care consultations, timely identification of palliative care needs and in the use of a two-track approach for patients with unpredictable yet life-threatening diseases. This section includes four paragraphs: 1. Definition and meaning of proactive palliative care 2. Promoting knowledge and self-initiation 3. Intention to produce good results and avoid (future) problems 4. Thinking ahead to be able to act before things happen 8
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