Abstract
Importance
Clinicians, people living with dementia (PLWD), and their caregivers face clinical, ethical, and psychosocial challenges when making surgical decisions.
Objective
To explore clinician experiences with surgical decision-making when a patient has dementia.
Design, Setting, and Participants
This qualitative study uses case studies compiled from interviews, surveys, and resource review across 12 sites and 178 clinicians. Interviews were conducted between November 2021 and May 2023, while analysis of interview data and associated survey data continued until December 2024.
Exposure
One interview.
Main Outcomes and Measures
The primary outcome was themes describing clinician experiences with surgical decision-making when a patient has dementia.
Results
Among 178 participants (64 surgeons, 100 other clinicians, and 14 hospital leaders), mean (SD) age was 47 (10.9) years, and 92 participants (51.7%) were female. Three main themes were identified. The first theme found that challenges with clinician identification of dementia and assessment of capacity in the surgical setting were barriers to optimal surgical decision-making. Furthermore, inconsistent documentation of cognitive impairment in electronic health records (EHR) and/or lack of EHR interoperability across health systems made it difficult to rely on medical records to identify dementia in a patient’s history. Theme 2 identified that caregivers and nonsurgical clinicians were key contributors to surgical decision-making, but misaligned expectations, caregiver burden, and limited preparation complicated the process. Given the lack of EHR documentation for PLWD, clinicians needed to rely on caregivers to provide a sufficient picture of patients’ cognitive and physical functioning, as well as their goals and values that were relevant to the surgical decision. The third theme found that clinician appraisal of the relevance of dementia to surgical outcomes variably shaped the surgical decision-making process with PLWD and their caregivers. Clinicians commonly perceived that dementia negatively impacts surgical outcomes and recovery among PLWD, yet participants rarely referenced evidence, such as published data or care guidelines, supporting these views.
Conclusions and Relevance
Results of this qualitative study suggest that clinicians face challenges to surgical decision-making for PLWD, including limited documentation or resources to support identification of dementia, variable caregiver involvement, and constrained access to dementia care specialists who can support the decision-making process. Addressing these challenges may include improving communication pathways with longitudinal clinicians, EHR documentation for older adults, routine and meaningful inclusion of caregivers, and access to nonsurgical clinicians who can support surgical decision-making.