“I'm in My Feelings Now”: Examination of Advance Care Planning Video Declarations by People with Advanced Cancer from a Safety Net Hospital

Abstract

Background:

Advance care planning (ACP) is underutilized among those with advanced cancer, leading to the potential of not receiving goal-concordant care.

Objectives:

To understand the experience of patients in creating a video declaration (ViDec) of their ACP preferences and their family member/caregivers' perceptions after viewing their ViDec.

Design:

Qualitative study among patients and family members/caregivers.

Setting/Subjects:

Patients were recruited from a large safety net hospital in the United States. Patients with any type of advanced cancer were enrolled to create a ViDec and participate in an individual interview. Patients also identified a family member/caregiver to participate.

Measurements:

Content and perceptions of usefulness of ViDecs among patients and family members/caregivers.

Results:

In total, 32 patients participated. Patients had a mean age of 61 (10) years, 15 (47%) were women, 14 (44%) were Black or African American, and 12 (37%) had a high school education or less; 25 family members/caregivers participated. Across all ViDecs, the most common theme pertained to ACP for preferred medical treatments (97%). We describe three case studies of patient and caregiver pairs to represent salient dimensions of our data: (1) high perceived usefulness of ViDec, (2) populations at risk for not receiving goal-concordant care, and (3) varied responses to ViDec among family members/caregivers. Recommendations to improve the ViDec process included providing structured prompts to patients.

Conclusions:

These case studies highlight the potential high-perceived usefulness of ViDecs across patients and caregivers. ViDecs have the potential to improve care among patients with advanced cancer.