Maintaining a Sense of Control at the End of Life
Background: Supporting patient decision making is a central aspect of caring for older adults near death and ensuring patient autonomy. However, the variable and fluid nature of end-of-life choices makes providing this support challenging. Much is known about end-of-life decision making, but missing in this discourse are the voices of older adults in the midst of making actual end-of-life choices.
Methods: We used grounded theory methods to explore and understand the perspectives of older adults who are near the end of their lives and are in the midst of making significant healthcare. Participants were recruited through community-based geriatric clinics and were interviewed in their homes. Interviews were analyzed using constant comparative analysis and negative cases were sought to challenge emerging themes.
Results: Despite delegating decisions to others, participants stated they were comfortable with their choices. Rather than speak of decisions directly, participants talked around the decisions and focused on their context. From within this context, the theme of maintaining a sense of control emerged wherein participants used four different approaches to describe their values and priorities: direct communication, third-party analogies, adaptive denial, and active avoidance. Through these different approaches, participants achieved a sense of control without being in control and were able to maintain a sense of autonomy.
Implications: These findings challenge current constructions of personal autonomy that require patients to actively participant in decision making. Likewise, the current treatment focus of advance care planning may not be appropriate for older adults at the end of life. By understanding the approach patients take to decision making, providers can identify key values and priorities that can guide how they support patients choices, including a willingness to take a more proactive role in patient decisions.