END-OF-LIFE: FROM IGNORED TO INSPIRATIONAL.

Research Question This project fills a gap in the current literature by (1) understanding the current 'state of affairs' for consumers in end-of-life planning, and (2) both exploring and discovering potential intervention techniques to end the stigma around end-of-life discussions. Opening up the conversation to allow for greater transparency in end-of-life planning will undoubtedly improve overall consumer wellbeing - the ultimate goal of this project - and for researchers who study consumer well-being. As a team, we explore current financial and healthcare planning practices, observe impediments and obstacles in the way of transparent utilization of planning documentation, and work with practitioners in the field to better address and reach vulnerable populations to improve the overall healthcare system. Method and Data To explore end-of-life (EOL) planning, a Qualtrics survey panel was developed and completed by 319 respondents. Seventy percent of the respondents indicated that they had completed at least one of the documents: will, trust, power of attorney, advance healthcare directive or a health proxy. The most often completed document was a will (22%), followed by power of attorney (15%), and a health care directive (13%). Respondents indicated that they completed them because they reached a certain age (28%). Twenty-one percent indicated they completed them because of a significant life event (e.g., children or marriage). Of those who have not completed documents, the most common response was that they were too young, followed by that they had just not gotten around to it or had been putting it off. Respondents were also given two different scenarios about end of life - one about their own end-of-life, and one about that of a loved one. For themselves (loved ones), 43.9% (41.1%) said they would be comfortable talking about this. For those who stated they would be uncomfortable, the most common reason was that this would cause unpleasant feelings such as fear, sadness, anxiety, or depression. Summary of Findings Of particular interest is the extent to which consumers have engaged in EOL planning and the potential barriers to doing so. One key finding suggests that the most common barrier is that they don't need them right now. Whether it is because they are too young, they don't have enough assets, or that they haven't reached a specific milestone (e.g., marriage, birth of a child), EOL planning isn't important enough to consider at their stage in life. Interestingly, the main hindrance does not appear to be a time or money issue. Instead, people see this as an event that they will do once they reach a certain age or life event. Another interesting theme is the characterization of EOL planning as a financial event (e.g., wills, insurance, power of attorney). Not only does this enable some to put off EOL planning due to lack of assets or heirs, but it also puts EOL planning squarely in the cold, economic realm of financial responsibility. For these reasons, EOL planning, like insurance, can be characterized as an "unsought good" that must be heavily promoted in order to encourage consumption. Key Contributions The main goal of this research was to expand research findings to better inform actual medical practice and healthcare systems through scholarship with community members themselves. This has meaning for consumers who are either hurt or burdened by a broken healthcare system. We want to provide access and knowledge to all individuals, as death is an inevitability. It should not only be the wealthy, or college educated, who understand the need for and importance of end-of-life planning documents, as research shows underserved population groups are not equipped with the know-how or support to successfully communicate their end-of-life desires. Our project ultimately ends with innovative interventions to encourage conversation around a very difficult, and often stigmatized topic. This project is disruptive in the way families have learned to communicate with loved ones. Why does death need to be scary and feared? Why must families avoid talking about financial planning? It is one of our goals through this research to change the way the conversation is conducted around death in a meaningful and impactful way. [ABSTRACT FROM AUTHOR]