Tales of End-of-Life Care

An exploration of how stories improve care

Force: Quality of Care

Magnet Expectation: Resources are available to support participants in research and research utilization activities.

RESEARCH PROJECT:

Background: Department of family m edicine and OACIS (Optimizing Advanced Complex Illness Support) clinicians are conducting a qualitative study to improve end-of-life care. The study involves encouraging patients to share stories.

PICO Question: What stories do patients with complex chronic illnesses who are nearing the end of life want to tell?

Evidence: Clinicians and a local professional storyteller worked with Muhlenberg College psychology students. The students met with patients in the end stages of illnesses and asked them to share life stories. “Some patients talked about life events. Others talked about life lessons or difficult times,” says Cora Hook, coordinator for this department.

Patients and students then created projects to help portray patients’ stories, such as videos, scrapbooks and posters. They were shared with study participants and colleagues at an event.

Data Sample: One patient told stories about courting his wife. A former chemist, the man spoke eloquently and remembered the dates and times of important events in their relationship. He recorded these stories on video. His family said sharing the stories helped him prepare for his death, and the video helped them cope with losing him. His family now plays the video at family reunions.

Findings: Most patients found the willingness of someone to listen to their stories engaging and energizing. Some patients realized their legacy, while others made peace with family members. “Above all, we learned patients do not want to tell stories of their illnesses,” Hook says. “It’s not important to them.”

What was important were the relationships formed between storytellers and listeners. “Students said these experiences were the most life-altering of their college education,” Hook says.

Evaluation: The study isn’t complete. Clinicians and students plan to gather more data (stories) from patients. However, they will use their findings to improve patient care through storytelling.

ARTICLE TOOLS: