Background Patients and family often do not know what to expect of an advance care planning (ACP) consultation. Question prompt lists (QPL) help them to gain insight into and express their wishes and questions. We developed the ‘Leiden Guide for Palliative care’ (LGP), combining an adapted Edmonton Symptom Assessment Scale and a translated QPL on palliative care,1 to hand out before the ACP consultation with palliative care specialists. The goals of this study were to evaluate personal experiences of patients and family with the LGP, and to further develop the LGP.
Methods In this qualitative study semi-structured interviews with six patients and seven family members were conducted. Manual coding and thematic analysis were done by two researchers.
Results Three main themes for optimal use of the LGP were identified: 1. Prerequisites: early in disease trajectory; adequate introduction by the healthcare professional (HCP); positive first impression. 2. Benefits: provides complete overview of ACP topics and relevant questions; facilitates end of life discussions, also between family members. 3. Practical use: preferably the LGP is reviewed with family 1–2 days before the consultation. With detailed suggestions on content and format we constructed an improved LGP.
Conclusion Patients and family consider the LGP as helpful and useful in preparation and during ACP consultations with palliative care specialists, provided that the prerequisites are met. The usefulness of the LGP in ACP discussions with generalist HCPs and in different settings is subject of further study.
Clayton J, et al. Br J Cancer 2003.