Personal storytelling helps terminally ill patients find peace

Rennebohm Hall, home to the UW-Madison School of Pharmacy, is reflected in the still water of Lake Mendota along the UW-Madison shoreline.

Image By: Jeff Miller

At the UW-Madison School of Pharmacy, unique research outside of traditional medicine is taking place. For the Sonderegger Research Center, the medical field is rich in opportunities for social science, where the medicine we quickly think of is set aside and becomes only one component in the patient experience.

This research, published in 2017 in the Journal of Palliative Medicine, proved that therapy such as storytelling can be a powerful source of help for individuals who are terminally ill.

“You think of pharmacy as mixing up drugs. My research is a little bit outside of strict pharmacy,” said associate scientist Meg Wise, co-author of the article. “I am a social scientist. I’m interested in patients’ experience.”

Wise’s research with cancer patients sheds light onto possible solutions for increasing mental well-being and may have broader implications in healthcare for patients and doctors alike.

Currently, integrating in-depth storytelling into healing is not standard procedure for the terminally ill.

“You think about it, and, well, the healthcare system isn’t set up to do that kind of storytelling, you know, even traditionally nurses and psychologists, but in this more task-oriented, evidence-driven way,” Wise said. “These task-oriented professionals are interested in coming up with ways to fix a problem … to address an issue in a patient’s life and help them remedy it.”

But what if there is no issue that needs to be resolved?

“When you’re dealing with existential issues like death, you may not be thinking about ‘what problem am I going to fix?’ They’re just thinking about what makes meaning in my life,” Wise said.

Wise was working at the Center for Health Enhancement Systems Studies when she started collecting the life stories of patients willing to share. At the time, her focus was on exploring patient resilience, the phenomenon where humans start to become strengthened by challenges because of the ability to overcome them and appreciate what is important.

It was at about the sixth interview with a patient when she realized an unexpected trend.

“What was interesting was that as I was wrapping up the meeting, people would go: ‘You know, this is the first time I’ve talked about this. I’d like a copy of the transcript.’”

These patients found the written life story extremely meaningful and they were compelled to share with their loved ones. For most, this was the first time they had talked about their lives in this way. In a world that focuses so heavily on fixing tangible issues to allow healing, the value of open-ended experiences of reflection are completely overlooked.

From there, Wise began investigating a much deeper subject: Does life storytelling contribute to mental well-being? And if so, what does that look like for patients?

A trial was conducted with participants who had stage III or IV cancer. Two groups were created. A control group received access to an online information page with patient resources and support groups. An experimental group received the same page, with the added option of sharing their story.

Patients were interviewed over the phone and were given a copy of their story created from the original transcript. The online component was essential. From here, they were allowed to edit their story, add photos and quickly and easily share it with others.

“What was interesting was that some people who when I said you were randomized to be in the story group, they said, ‘I don’t want to tell my story, I just want the information! I don’t really have a story.’ Sometimes those were the people who ended up having the most interesting stories,” Wise said.

At the beginning and end of four months, mental well-being was assessed. “We used a tool called the Functional Assessment of Chronic Illness Treatments-Spirituality,” Wise said, “This had 12 questions.”

Patients responded to the questions on this assessment, which measured components of peace, meaning and religiosity.

Meaning improved slightly in the story group, whereas the control group decreased slightly. Similar results were found with peace. Across the board, the story group “was holding their own, or getting a little bit better. So, I would say this kind of intervention can either protect against this kind of natural or common decline of well-being as people are getting sicker,” Wise said.

This topic of mental well-being near the end of life would benefit from future trials. The study’s volunteers were mainly older, female, white, post-graduate educated and already involved in other forms of therapy such as journaling or meditation.

Other demographics might respond differently to storytelling, and the generation that has grown up with routine storytelling on social media may be an interesting group to assess in time.

It doesn’t matter how amazing the research is; once the project is over, real-world applications need to take place to improve quality of life. There is currently a program at the Veterans Affairs Hospital in Madison run by predominantly volunteer writers, collecting bedside stories that are uploaded to patient electronic medical records. As a result, primary care teams are allowed an opportunity to better understand each patient and who they are as a person — a human who has a past, present and future.

Innovative means of helping patients feel more contentment in their potentially last months of life does not come without a cost. Creating memoirs from phone interviews takes time and effort. But the developing of people’s life stories has an incalculable value, which is something that Wise understands.

“People would be coming to me and saying, ‘How could you be doing this?’ And I would say it’s because I’m so moved by peoples’ reflections, and their experiences and their bravery. I also kind of realized that it made me realize how appreciative I was of my health and of my life.”

Like most therapies, not everyone will benefit from the same approaches. “Probably most educational or psychosocial interventions are helpful for some people, but not for others,” Wise explained, “Because a lot of people just kind of don’t want to tell their story.”

Wise also noted some other findings. When the storytellers opened up about things that were very meaningful to them, it created a unique space that impacted elements of their speaking. “It’s like as people start to get down deep into their soul or their heart, that there’s something that opens up, that people became eloquent and almost poetic, and they used incredible metaphors. I think that just from an aesthetic point of view it was very deep.”

This exercise for patients nearing the end of their life allowed very plain spoken people to momentarily change. The meaningful conversations that Wise has shown to increase mental well-being have the potential to benefit many people. Furthermore, it can give people the ability to verbalize more of who they truly are.

“It felt really human, it just felt really human to me,” Wise said.

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