“It helps me see with my heart”: How video informs patients’ rationale for decisions about future care in advanced dementia

Abstract 

Objective

To explore how a video of a patient with advanced dementia impacts the rationale for patients’ decisions about future care.

Methods

Participants were read a verbal description of advanced dementia and asked their preferences for future care—either life-prolonging, limited, or comfort care—and the rationale for that choice. Participants then watched a video of a patient with advanced dementia and again stated their preferred level of care and the rationale. Thematic content analysis was utilized to develop common themes among the rationale of participants in each response category.

Results

We interviewed 120 participants. The rationale of those who initially chose life-prolonging or limited care (47/120) emphasized lengthening life and cited an inherent good of medical treatment. Those who initially chose comfort care (60/120) focused on avoiding suffering and quality of life. Post-video, 107/120 participants chose comfort care and the rationale focused on the experience of the patient and family rather than treatment-centered considerations. Participants found great value in the video images.

Conclusions

While pre-video reasoning reflects general beliefs about extending life and the inherent good of treatment, the post-video reasoning reveals more focus on the experience of the actual patient and family.

Practice implications

Video may serve an important role in advanced care planning by enriching the understanding of the condition and allowing one to imagine a future health state.

Keywords: Advance care planning, Advanced dementia, Decision aids, Video, End-of-life decision making, Communication, Death and dying, Advance directives