The Best End-of-Life Care Begins With TRUTH.

Abstract

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.