During the fall of ‘22, I joined Professor Carol Weisse’s research team, conducting research surrounding patient quality of life, mental health, and medical management in community-run residential care homes. I extended this work into a summer research project, in which I read and analyzed anonymized patient care records obtained from three of these homes in the Capital Region– Gateway House of Peace, Joan Nicole Prince Home, and Harmony House--as well as existing nonfiction and fictional literature on the subjects of death and dying. I looked specifically for important trends and patterns between the lines of the staff notes, and I used the information to compose realistic, fact-based fictional stories. The goal for these stories was to convey the importance of having conversations about death to readers by depicting what it would be like to be in the shoes of a patient, caregiver, or other health care advocate, as we could all benefit from being more aware of and willing to consider all available end-of-life care options.
The narrative that I wrote addresses the consequences of choices made with and for individual patients in these residential care homes. I wrote this non-linear story using a software called Twine, which allows for readers to play an active role in the narrative. As they progress through the story, readers are prompted to decide between multiple hypertext links, permitting them to follow the narrative path of their choice. Twine publishes to HTML format, so these stories can be easily shared with other readers.
Presenting this completed summer research project at this year’s Steinmetz Day symposium is a perfect opportunity to expand its audience, which is critical to my mission of increasing death literacy. I plan to highlight the importance of this work on both individual and societal levels. I will give context for the project, including facts about end-of-life care in our country, examples of notable moments from anonymized patient files, and screenshots of what Twine looks like from the editor’s perspective. I will also present the story itself, encouraging audience participation when choices are encountered. Listeners will hopefully be left with an interest in the format of interactive storytelling, an increased understanding of end-of-life care, and a willingness to continue discussions about death and dying.