Background: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived... Show moreBackground: Timely initiation of advance care planning (ACP) in general practice is challenging, especially in patients with non-malignant conditions. Our aim was to investigate how perceived optimal timing of ACP initiation and its triggers relate to recorded actual timing in patients with cancer, organ failure, or multimorbidity. Methods: In this mixed-methods study in the Netherlands, we analysed health records selected from a database with primary care routine data and with a recorded ACP conversation in the last two years before death of patients who died with cancer, organ failure, or multimorbidity. We compared actual timing of ACP initiation as recorded in health records of 51 patients with the perceived optimal timing as determined by 83 independent GPs who studied these records. Further, to identify and compare triggers for GPs to initiate ACP, we analysed the health record documentation around the moments of the recorded actual timing of ACP initiation and the perceived optimal timing of ACP initiation. We combined quantitative descriptive statistics with qualitative content analysis. Results: The recorded actual timing of ACP initiation was significantly closer to death than the perceived optimal timing in patients with cancer (median 88 vs. 111 days before death (p = 0.049)), organ failure (227 vs. 306 days before death (p = 0.02)) and multimorbidity (113 vs. 338 days before death (p = 0.006)). Triggers for recorded actual versus perceived optimal timing were similar across the three groups, the most frequent being 'expressions of patients' reflections or wishes' (14% and 14% respectively) and 'appropriate setting' (10% and 13% respectively). Conclusion: ACP in general practice was initiated and recorded later in the illness trajectory than considered optimal, especially in patients with organ failure or multimorbidity. As triggers were similar for recorded actual and perceived optimal timing, we recommend that GPs initiate ACP shortly after a trigger is noticed the first time, rather than wait for additional or more evident triggers when the illness is in an advanced stage. Show less
Background: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for,... Show moreBackground: Appropriate timing to initiate advance care planning is difficult, especially for individuals with non-malignant disease in community settings. Aim: To identify the optimal moment for, and reasons to initiate advance care planning in different illness trajectories. Design and methods: A health records survey study; health records were presented to 83 GPs with request to indicate and substantiate what they considered optimal advance care planning timing within the 2 years before death. We used quantitative and qualitative analyses. Setting and patients: We selected and anonymized 90 health records of patients who died with cancer, organ failure or multimorbidity, from a regional primary care registration database in the Netherlands. Results: The median optimal advance care planning timing according to the GPs was 228 days before death (interquartile range 392). This moment was closer to death for cancer (87.5 days before death, IQR 302) than for organ failure (266 days before death, IQR 401) and multimorbidity (290 days before death, IQR 389) (p < 0.001). The most frequently mentioned reason for cancer was "receiving a diagnosis" (21.5%), for organ failure it was "after a period of illness" (14.7%), and for multimorbidity it was "age" and "patients" expressed wishes or reflections' (both 12.0%). Conclusion: The optimal advance care planning timing and reasons to initiate advance care planning indicated by GPs differ between patients with cancer and other illnesses, and they also differ between GPs. This suggests that "the" optimal timing for ACP should be seen as a "window of opportunity" for the different disease trajectories. Show less
