West Virginia University Medicine is taking a closer look at a little-known approach to cancer treatment called narrative medicine with the aim of improving the treatment experience for doctors and patients alike.
The idea with narrative medicine is that if doctors get to know patients through their life stories, the physicians will be able to improve their ability to care for their patients, beyond simply managing symptoms.
The approach is still relatively new, and not very common – it takes time to sit down with a patient and record his or her story – but last year, WVU Medicine launched a clinical study of narrative medicine with cancer patients in the hopes of both improving treatment and facilitating the patients’ abilities to cope with illness.
Lacie Lee Wallace was one of the first participants. Wallace’s arms and chest are covered in colorful tattoos that stand in stark contrast to pale, almost translucent skin. Her body sustains the shocked look of someone who rapidly lost a lot of weight and isn’t quite sure what happened yet.
She’s 33, a mom of two and is being treated for stage 4 colon cancer.
None of the drugs doctors have tried have worked longer than a couple weeks before the cancer mutated and the drugs stop working.
“More doctors, more appointments, more drugs,” she said with a sigh. “Scary stuff.”
Wallace is multimedia artist who works mostly with paper, creating collages, or “art you have to interact with,” as she described it.
“We want to be feeling like we’re important. We want someone to want to hear our story, we have that need as humans to like you know convey stuff to other people. We want to communicate on a higher level,” she said.
“And I think the arts let you take it a step beyond just words. You get to go into something, you get to see something and be a part of it. I tend to make a lot of interactive art where the person can’t see the art in less they interact with the piece. And I like that because always before it’s like ‘don’t touch my art!’ But I like to make them have to touch the art or they don’t get to see it. Like then they don’t get to be a part of it if they don’t want to participate. And it’s fine if they don’t want to participate, but it’s here if you want to.
“And I think art is therapy in that way. And I think it’s the same with the storytelling. You know it builds us up. And even if it’s just for one day, or one minute or one hour you feel empowered because someone’s listening and actually cares about your story.”
Narrative Medicine Program
So for her, the narrative medicine program being conducted by doctor Carl Grey and multi and interdisciplinary studies professor Renee Nicholson was a natural fit.
“My main idea was that I do something called advanced care planning,” said Dr. Grey, a geriatrician and hospice doctor who focuses mostly on easing patients symptoms toward the end of life, practicing what’s called “palliative care.”
“And if you read about advanced care planning it’s talking to patients about what they would want if something happens to them and they’re not able to make decisions for themselves – especially when they’re very sick,” he said.
But patients don’t always fill out “advanced care” forms, even though they can make the difference between dying in a hospital or dying at home or having CPR performed, or not. Grey thinks part of the problem is that advanced care planning forms, called advanced directives, don’t include space for narratives.
“So you can look at this advanced directive and see that they have this wish or that wish, but they usually just mean whether they want CPR, but you don’t have any idea of what the context of the story was. So again, I thought getting a story might be helpful with that,” he said.
There’s also some evidence, he said, that doing writing with patients can help with quality of life.
“And as someone who works in palliative care, I care a lot about quality of life. It’s always something I’m trying to improve with patients.”
So when Grey met Nicholson, the two of them decided to work together to write grant proposals for a clinical trial of narrative medicine. The project was funded and Nicholson began collecting patient stories last August.
“Our goal is to have them talk about whatever they want,” she said.
The stories are taken orally and then transcribed and lightly edited into prose. A final version becomes part of the patient's medical file.
“It’s really what they think is important about their life and what they want to talk about,” Nicholson said.
Wallace loves that.
“Now some people choose to discuss their cancer and when they diagnosed and how it changed their life,” she said. “And I decided that instead of talking just about my cancer, which is more of a side note to my life, not the main chapter, I just started talking off about memories that make me happy. And one of the best memories that make me happy and things that inspire me is to be a model for other artists.”
Wallace said when she sits as a model for other artists she makes sure to dress up in colorful clothes or dramatic makeup to give them something interesting to work with. It’s humbling, she said, to see yourself in the eyes of another.
Nicholson said reflecting on life is the whole point. When you do that, you come to learn what’s important to you, and deciding what you want at the end of your life might be a little easier. She said it can also help you connect with loved ones or distract you from the painful monotony that is cancer treatment.
“What we try to do is see if there’s any correlation between the patient’s quality of life and we use a survey that’s well-known and well-used called the McGill Quality of Life Survey, and we measure both when we go in to take the story and when we return the stories to see if there’s any change in quality of life and then we ask some questions about the patient’s preparedness to do advanced care planning and their understanding of it and whether they would be comfortable talking to their doctor or their health professional,” Nicholson said.
“And then we also ask them after they received their story and whether doing the story was a pleasurable experience for them and helped them feel prepared to have some of those conversations.”
The project is still pretty new, so there isn’t a lot of definitive data yet, but Nicholson said anecdotally it’s showing a lot of promise. I asked her if she thought it was sustainable – gathering stories takes a lot of time and as anyone who has spent extended time in the hospital knows – doctors don’t have a lot of time to spend with patients. She said she’s honestly not sure, but hopes so. Stories are an important part of care.
“I think for the doctors it gives them a different view of the patients,” Nicholson said. “One of the things that Dr. Grey shared with me very early on was I just didn’t know the stories were going to be so beautiful. And that really struck me because I was expect people’s personal stories to be beautiful – I think people lead much more compelling lives than they think. So that was interesting and very compelling in terms of medicine because you get a certain story in medicine, but you don’t always get a total one. Patients themselves get excited and I think there’s something validating about seeing your story on a piece of paper.”
But on some level, Nicholson said, the story gathering is just about having something different and unique going on in a situation that is pretty tough. The stories, she said, allow participants to escape into the self they were before their diagnosis.
Nicholson and Grey hope to complete their study in July 2018. Nicholson said if her approach to narrative medicine improves health outcomes for cancer patients, she’d like to expand the project to other groups of patients struggling with long hospital stays. But that, she said, is a little way off.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation, Charleston Area Medical Center and WVU Medicine.