A New Chapter for Children with Cancer
Documentary profiles an innovative Texas doctor who seeks to meet the emotional, social, and medical needs of kids and their families living with illness
Nov. 3, 2010
The camera focuses on a smiling, dark-haired teenage girl wearing oversized sunglasses. Emily Garcia is sitting in the back seat of a moving car. “This is my cup holder,” she jokes, gesturing to an object that the viewer gradually realizes is the open top of a prosthetic leg. She draws a bottle of soda from the prosthetic. “How does that taste after being in your nasty leg?” teases her friend, who is holding the camera.
“Well, it tasted nasty before I put it in there,” Emily says, grinning.
“Let’s see what’s in there,” her friend says, and Emily pulls out one object after another—a camera, a cell phone—while the girls giggle, as teenagers do, just as teenagers do.
Emily has osteosarcoma, a cancer that develops in growing bones, usually in children or teenagers. Her right leg has been amputated to stop the spread of the disease, and now she wears a prosthetic. She is a patient of Dr. Pete Anderson, a pediatric oncologist who specializes in osteosarcoma and who appears in a new documentary by Ohio University professors Lynn Harter and Casey Hayward.
The Art of the Possible documents Anderson’s efforts to practice family-centered medicine at the University of Texas MD Anderson Cancer Center in Houston, Texas. Instead of treating only a patient’s medical needs, he uses inclusive communication practices that also fulﬁll the emotional and social needs of children and their families and that give them more control over their medical treatment.
Harter and Hayward focused the documentary on ﬁve of Anderson’s patients from around the United States and their struggle to ﬁnd a “new normal” that allows them to enjoy life in the midst of their cancer treatments. Hayward, an assistant professor of media arts and studies, says that The Art of the Possible is a participatory documentary.
“It’s an emerging technique in which the subject is an equal and active participant” in the ﬁlm’s creation, he says.
Emily Garcia was one of several young patients undergoing treatment for osteosarcoma who ﬁlmed scenes of her daily life for the documentary The Art of the Possible by Lynn Harter and Casey Hayward, above.
Harter and Hayward gave the participating families high-deﬁnition video cameras so the children could ﬁlm their own stories and show the viewer what they thought was important about living with cancer. Why make the ﬁlm in that style? “I felt it had to have a storytelling arc,” he says. “We don’t think you really understand what effect (Anderson’s) practices have unless you see patients being helped by them.”
Harter, the Steven and Barbara Schoonover Professor of Health Communication, says that the staff at MD Anderson considers Anderson a “maverick,” both for his treatment protocols and for the way he develops personal relationships with his patients. Anderson “is practicing medicine with narrative sensibilities,” she says. “We make sense (of the world) through storytelling, and it’s the doctor’s job to enter into the story.”
And indeed, Anderson speaks of cancer treatment in a literary manner. “Many of the patients have a rich, long narrative full of detail,” he says in The Art of the Possible, “but they come to MD Anderson to write a few more chapters, and they hope they can start a whole new book.” In the ﬁlm, he describes the “art of the possible” as “the family resources that you can put to bear to have a good outcome and to try to make things—I won’t say simple—but so organized and understandable to a family that they can do it.”
In the documentary, Hayward and Harter show Anderson’s unconventional but common-sense methods in action. For example, at every visit, he puts a patient’s medical information on a ﬂash drive so they can take it with them. “It gives them a sense of empowerment, a sense of ‘You own this,’” Harter says. Patients seeing other doctors don’t have to spend time and energy requesting copies of X-rays from hospitals or repeating their entire medical history—they can just hand the new doctor the ﬂash drive.
For every patient, Anderson’s staff makes calendars that include all their important upcoming events, such as band concerts or family vacations. “We plan (cancer treatments)around these things so they can still enjoy life,” Wanda Nolan of MD Anderson says in the ﬁlm. “Communication is such a key when taking care of these kids. … (Anderson) really wants everyone to know what’s going on.”
Doctors often dictate the details of a patient’s visit to an audio recorder, and the notes are later transcribed and added to a patient’s records. Anderson prefers to do his dictation at the end of a visit, right there in front of the patient and his or her family. He wants them to feel included and to be present if he has a question about something he is dictating. Because some children are self-conscious about their appearance when taking cancer treatments, in his dictation he describes the children’s haircuts and what they’re wearing. It makes them feel good that he noticed.
One of Anderson’s most effective innovations is encouraging his patients to do out-patient chemotherapy. They come to the hospital to get hooked up to a new bag of chemo, and then return home. In The Art of the Possible, Anderson explains that fewer people are involved in the visit, and families feel more in control than they do dealing with large hospital staffs. Out-patient chemo also allows children to be home with their families and friends rather than spending long, lonely periods of time in a hospital. “These are quality of life considerations,” he says. To illustrate his point, the viewer sees shots of Logan Boyd, a teenager from Medina, Ohio, who received treatment from Anderson for osteosarcoma. Harter and Hayward included footage of the boy at home playing with his potbellied pig and playing video games with his friends.
Logan also helps illustrate another of Anderson’s methods—helping his patients ﬁnd activities to replace the ones they have lost to cancer. Logan was upset that he could no longer play soccer and basketball, so Anderson encouraged him to take up kayaking and sailing, activities that his body could handle. Logan loved his new “silent sports.”
Here, Hayward says, the inclusive methods of participatory documentary ﬁlmmaking came into play. He and Harter asked Logan why he ﬁlmed himself sailing and kayaking. His answer “helped us craft the ‘new normal,’” Hayward says. “It emerged organically.” The same thing happened when the professors viewed the footage of Emily Garcia playfully storing soda in her prosthetic leg. “We would never have been able to imagine that,” Harter says.
MD Anderson Cancer Center tries to help child patients have other life experiences that they might otherwise lose to cancer, Harter says. The Children’s Art Program at MD Anderson turns the artwork of child cancer patients into products, such as mugs and T-shirts, which are sold to the public. The millions of dollars raised this way each year are used to fund summer camps—where older children can even attend prom—and ski trips staffed by hospital nurses and doctors where children who have lost limbs to cancer can use special equipment to tackle the slopes. The camps and trips have the added bonus of allowing the children to develop relationships with others who are living with cancer.
In the ﬁlm, the professors also included footage of family members using Caring Bridge, a free website where people living through a health crisis can post their stories and keep family members and friends updated. The site is useful because families can share news about a health condition without having to call people and repeat new developments over and over. Anderson also encourages families to ﬁnd help with the Association of Cancer Online Resources, a collection of online support groups, and to participate in support groups and patient advisory councils offered at hospitals.
Harter and Hayward made several narrative choices that strongly affect how viewers experience the ﬁlm. From the very beginning of the documentary, the viewer can tell that Colleen Moore does not survive her illness, because her mother talks about Colleen in the past tense. So when the nine-year-old succumbs to osteosarcoma, the viewer is saddened, but not surprised.
However, the viewer assumes from Logan Boyd’s strong presence in the ﬁlm that he is going to recover. When, near the end of the documentary, scenes from a charity fundraiser dedicated to Logan’s memory are shown, the viewer is shocked by the unexpected intrusion of mortality. “That was a conscious choice,” Hayward says. “It describes cancer well. We wanted a similar impact on the audience as it was on us when we found he had passed away.”
But the ﬁlmmakers also wanted to show that some children do live through osteosarcoma, and so they recruited 32-year-old Casey Quinn to appear in the documentary. Casey was ﬁrst diagnosed with the disease when he was 17. He has battled various forms of cancer six times in his short life, but after each episode he recovers and moves on. “I was really moved by him,” Harter says. “He had a poetic way of framing his experience.”
The professors want to distribute The Art of the Possible to families affected by cancer. Hayward and Harter premiered the ﬁlm at MD Anderson in Houston in December 2009. They have since screened it in Texas and Kentucky and at several locations in Ohio, including Athens and Medina, Logan’s hometown. The ﬁlm, which is available for purchase online, has received the Broadcast Education Association (BEA) 2010 Award of Excellence in the documentary category. Harter and Hayward are pursuing other outlets for lay audiences of the documentary. They have contacted cable channels such as Discovery Health, The Learning Channel, and the Documentary Channel, and they are considering submitting the documentary for possible acceptance into ﬁlm festivals. Wherever else The Art of the Possible eventually screens, Harter and Hayward say, the ﬁlm will most likely air on WOUB, Ohio University’s public television station.
But Hayward and Harter especially want a medical audience for The Art of the Possible, because they think Anderson’s methods could improve health care for everyone. They want to distribute the ﬁlm to medical schools across the country; Brazil also has taken notice.
Starting this fall, it will be shown in a behavioral medicine course for medical students at MD Anderson. There, Harter plans to work with Anderson to teach communication skills for bedside rounds and medical charting. She is also working on a companion book to accompany the documentary, titled The Poetics and Politics of Health Activism…Imagining Possibilities Through Storytelling.
Asked if they have considered shooting a sequel to The Art of the Possible, Hayward and Harter demur, citing the emotional toll the ﬁlm took and the difﬁculty of ﬁnding an ending point to a continuing narrative. “I’m fond of postscripts,” Harter says. “But the story never really ends.”
By Karen Sottosanti
This article appears in the Autumn/Winter 2010 issue of Perspectives magazine.