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Updated: Sep 15, 2025

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
Published on: February 16, 2011
The Best End-of-Life Care Begins With TRUTH
Julie-Kathryn E Graham1,2,3, Christina Kelley1,2,3, Gabriella Malagon-Maldonado1,2,3
1Julie-Kathryn E. Graham, PhD, APRN, ACCNS-AG , Associate Professor, San Diego State University School of Nursing. She has been teaching graduate and undergraduate nursing students for 7 years and has over 25 years of experience in critical care and emergency nursing. She is a board-certified Acute Care Clinical Nurse Specialist with an active research program dedicated to the early recognition of metabolic and immunologic dysregulation in sepsis. Please see Google Scholar for a complete list of publications.
Methods:
This study used a qualitative descriptive design. Through snowball sampling, community members who have experience with loved ones receiving end-of-life care were recruited by snowball-sampling. The interviews lasted approximately 90 minutes. Two open-ended questions were posed, and participants led the discussion by interpreting the questions in any way they wanted and telling the story they wanted to tell. Interviews were transcribed into Excel, and line-by-line analysis was utilized to group data (answers) into developed themes; themes were then broken down into subthemes. Literature was consulted to understand themes further.
Conclusions:
For decades, research has recommended truth and transparency in end-of-life care discussions with patients, families, and family-centered care. This study demonstrated that, in practice, this is often not done, resulting in further traumatization to families at the end of life. Additional research needs to be done to understand this practice gap and recommend strategies to overcome it.
Results:
Families experiencing end-of-life care are experiencing extensive acute trauma. The acute stress of this trauma makes information processing and decision-making very difficult. From the discipline of psychology, a person cannot make good decisions when they are experiencing trauma. At end-of-life, person-centered care is family-centered care. A person's individuality is inextricable from who they are to their family. If we do not care for the family, we do not care for our patients.
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