Background: Despite frequent encounters with the healthcare system and high risk for secondary conditions, it is unclear how frequently individuals living with serious physical disabilities document advance directives (AD) or engage in advance care planning (ACP). Their perspectives on these topics are largely unknown.
Objective: We aimed to characterize the perspectives of individuals with serious physical disabilities receiving care from two different healthcare delivery settings on the value of AD and ACP.
Design: Key informant interviews were conducted, audiorecorded, transcribed, and analyzed using thematic analysis and constant comparative analysis.
Subjects: Twenty-five adults with serious physical disabilities were interviewed.
Results: Five organizing themes emerged as follows: (A) AD is a right versus responsibility, (B) past medical experiences influence ACP engagement, (C) ACP requires relationship-centered decision support, (D) concerns for care after death, and (E) suggestions for improving ACP experiences. Participants wished to engage in a relationship-centered approach to ACP, yet voiced hesitation due to experiences of significant medical bias and mistreatment, typically surrounding judgments of their quality of life.
Conclusions: Better health professional training in ACP and heightened awareness of the unique ACP considerations pertaining to people with disabilities are recommended.
Keywords: advance care planning; advance directive; disability; shared decision making.