Article Text
Abstract
Background International consensus definitions of Advance Care Planning (ACP) typically capture well the scope and purpose of ACP, and central characteristics of the ACP conversation. At an operational level, however, the elements of ACP that are necessary and sufficient to ensure care consistency with care preferences remain unclear. Recent debates about the evidence supporting ACP reflect a confusion about what constitutes an effective ACP program.
Methods In the multicenter BEVOR trial, a Theory of Change (ToC) was developed, beginning with the overarching goal (impact) and the long-term outcomes to be achieved by an ACP program. From there, the necessary requirements at a management and operational level, and effective corresponding interventions, were developed step by step in multi-professional workshops with stakeholder participation. The theoretical derivation is based on scientific findings and expert knowledge (rationales). Necessary contextual factors for the success of ACP are formulated as assumptions. The ToC is visualized as a map.
Results As goals of ACP, we identified care consistency with care preferences when patients are incapable of decision making, and the relief of both related family and caring professionals. To achieve this, preconditions must be fulfilled at the individual level (conversation: empowerment for autonomous anticipatory care planning), institutional level (organizational development of relevant facilities and services to ensure implementation) and regional level (creating a regional network involving all relevant stakeholders). Treatment preferences must be (i) documented in a meaningful and valid manner, (ii) up-to-date and at hand in life-threatening situations, and (iii) respected by all relevant system players.
Conclusion A series of complex, targeted interventions at all levels, involving all relevant system players, is required to ensure the cultural change required for effective ACP. If an ACP intervention addresses only partial aspects, the goals of ACP cannot be expected to be reached.