Non-specialist palliative care - question prompt list preparation 163 Organization of care Home care 23 How can I arrange home care or household care now or in the future?t 23a How can I arrange home care now or in the future?t Household care 23 How can I arrange home care or household care now or in the future?t 23b How can I arrange household care now or in the future?t Hospice care N/A - Volunteers 24 Are there any volunteers available to help me? (e.g. to take me to an appointment or to do the shopping) Point of contact for symptoms 25 Who do I call in case of symptoms?u Role of the general practitioner N/A - Possibilities of care 26 Can I get help with an activity, travel or trip?v Last phase of life Palliative sedation 37 Can I get information about palliative sedation or euthanasia?w Euthanasia 37 Can I get information about palliative sedation or euthanasia?w Fluids and nutrition 38 How do I deal with fluid and nutrition in the event of illness or the end of life?z Practical matters of the end of life 39 Can I get information about the possibilities of care in the last phase of life? 40 What are the costs of care (for example home care / hospice)?x Course of the last phase of life 36 Can I get information about the last weeks of life?*y List of abbreviations: N/A: not applicable. Legends: Because the topic prompt list and question prompt list were separately presented in the Leiden Guide on Palliative Care, the above depicted classification was made to report how often categories and topics were indicated. Some questions did not belong to one specific topic. Topics could be grouped with more than one question and to zero questions. a-z: adaptations made to the question prompt list (see below) Construction of the question prompt list The Center of Expertise Palliative Care of Leiden University Medical Center constructed a Dutch version of Clayton et al.’s question prompt list (QPL) on palliative care in 2013. In teammeetings with the palliative care consultants, it was concluded that the QPL needed practical, cultural and organizational adaptations. The QPL consisted of 35 topics and 40 questions in 6 categories. The QPL became part of a conversation guide, the Leiden Guide on Palliative Care, which also included the Utrecht Symptom Diary for assessing symptom burden on symptom assessment scales. 1. Practical: a. Palliative care consultants estimated that many of their patients would lack energy and time to view all questions in Clayton et al.’s QPL. Therefore, they selected the most important questions and formulated a topic prompt list consisting of all relevant topics, which preceded the list with questions. Questions on “Spiritual and Cultural support” were left out. b. Questions about symptoms were specified for each symptom, because these would support the symptom assessment scales that the palliative care consultants also used as part of their consultations. c. Patients often asked questions about the truths and falsehoods about morphine and morphine-like medication, thus questions about this topic were made more specific. 7
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