Patient and Caregiver Experiences with Surgical Decision-Making in the Context of Dementia.

Abstract

To explore patient and caregiver experiences of surgical decision-making for patients living with dementia (PLWD). PLWD face heightened risks of poor surgical outcomes. For PLWD, surgical decisions are often made in collaboration with caregivers (family or close others who support the PLWD), yet there is limited research examining PLWD and caregiver experiences of surgical decision-making. We conducted in-depth interviews with nationally recruited PLWD (n=11) and caregivers (n=36) facing a surgical decision within the past two years. Interviews explored surgical decision-making experiences. Using reflexive thematic analysis, we coded the transcribed interview data and developed themes related to decision-making priorities, strategies, experiences, and satisfaction. The following themes were identified: (1) PLWD and caregivers prioritized quality-of-life outcomes, (2) They struggled to anticipate benefits and risks of treatment options for the PLWD, (3) Caregivers felt a heavy burden to make the "right" decision when PLWD were unable to participate in decision-making, and (4) Decisional regret stemmed from a lack of alignment between the decision and what the caregiver felt the PLWD would have wanted. PLWD and caregivers navigated fraught surgical decisions and sought the 'right' balance between potential cognitive and functional tradeoffs of surgical and non-surgical options. Findings highlight the need for targeted decisional support for PLWD as well as caregivers who face decision-making on behalf of PLWD. Results inform potential mechanisms for improving surgical decision-making quality and outcomes.