Actual timing versus GPs’ perceptions of optimal timing of advance care planning: a mixed-methods health record-based study

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 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.