Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes

Abstract

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.

Keywords: advance care planning; caregivers; surrogate decision-making.