How one ICU uses 'Word Clouds' to honor dying patients—and help families heal

Word Cloud project 'makes a community among those who are usually pretty separated'

Editor's note: This story was updated on July 12, 2019.

At the ICU of St. Joseph's Healthcare in Hamilton, Ontario, clinicians are creating "Word Clouds" to help humanize dying patients and comfort their families.

Download URMC's question prompt list to start improving end-of-life care for patients

A Word Cloud is a visual depiction of a person's name surrounded by words that describe him or her. Users can create a Word Cloud image on the wordle.net by entering a person's name and words they associate with the person, such as "kind" or "best sister ever."

Staff members at St. Joseph's make the Word Clouds after sitting down with patients' family members and listening to their memories of the patients.

Researchers studied the effects of Word Clouds at St. Joseph's by interviewing 73 health care providers and 37 relatives of dying patients. Specifically, they examined whether Word Clouds encouraged a "narrative orientation to medicine." Narrative medicine is a care model through which clinicians "elicit patients' stories and recognize their common humanity," Randi Belisomo reports for Reuters.

The researchers published their findings in BMJ Supportive and Palliative Care.

Findings

Meredith Vanstone, a co-author of the study and an assistant professor of family medicine at McMaster University, said researchers found that the practice "was surprisingly meaningful." Word Clouds are "a catalyst for telling stories," Vanstone said. "It's a way to get families away from thinking about negative things going on."

According to Vanstone, the Word Clouds help staff and visitors see a patient as a whole person, rather than focusing only on the details of the patient's final days.

Further, the Word Cloud image supported emotional healing, according to the study. According to researchers, family members looked at the Word Clouds regularly to feel closer to loved ones following their passing. Vanstone said, "Having it is a chance to reflect and remember."     

Melanie Wolfe still keeps the Word Cloud created for her late father, who was treated at St. Joseph's, on her mantel. "The Word Cloud encompasses everything he did," she said. "He was an avid drag racer, a supervisor at Nelson Steel. He collected cars. And Nautilus was his pet fish." She added, "It brought closure because of the way we were treated," noting that the staff "wanted to get to know him as a person."

France Clarke, a study co-author also of McMaster University, said that Word Clouds give the staff in the ICU "the opportunity to create human connection." Clarke added, "They reinvigorate the passion that brought (providers) to this career and do some healing to the people who are around."

Rita Charon, who pioneered narrative medicine at Columbia University College of Physician and Surgeons, called the St. Joseph's project, with which she was not involved, "beautiful."

Charon said, "It makes a community among those who are usually pretty separated, the family on one side and the doctors and nurses on the other side who only meet when there is bad news to be had. This is one small example of a much larger mission: to let it be known that physicians care so deeply for what happens to their patients and to learn that that matters" (Belisomo, Reuters, 12/27/16; Main Line Health Hospice, Touching Lives, June 2016; Vanstone et al., BMJ Supportive & Palliative Care, 11/24/16).

Next, download URMC's end-of-life conversation prompts

When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

Download URMC's conversation prompts to start improving end-of-life care for patients.

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