The Art of Survivorship

AS A PATIENT ON oxygen due to lung cancer, can you boost your ability to breathe without assistance?

And is playing the harmonica a good way to do it?

A comprehensive survivorship program at Charles A. Sammons Cancer Center, in Dallas, is exploring that question and others as part of a program that applies arts, mindfulness and educational concepts to life with and after cancer. Onward: the Survivorship Journey is offered in parallel to or following treatment. Its goal is to provide “soul care” for people affected by the disease, says the leader of the team that created it, Susan Sayles M.S.,RN, OCN.

“We want to create an environment where people remember that they are still alive and can flourish,” says Sayles, a cancer survivor and manager of the Cvetko Patient Resource Center at Sammons. “Whether we can cure their bodies or not, we want to heal them as much as possible.”

Part of the Baylor, Scott & White Health System (BSW), Sammons and its sister facilities have long offered a comprehensive list of holistic services to patients — who are considered survivors from the moment of diagnosis — and their families. Services have included rehabilitation and fitness, nutrition and cooking, patient navigation, help with appearance during treatment and a variety of counseling options. The new program packages all these services under one name, making it easier for patients and their physicians to understand what’s available and to take advantage of the activities. According to Sayles, all the services are provided for free except for clinical psychology appointments, which are billable to health insurance.

The new program also incorporates a structure for con- ducting scientific studies — including the work with harmonicas to increase chest expansion and diaphragmatic breathing in patients with lung cancer, a separate project looking at chemo brain, and measurement of survivorship trends. There’s a focus on “understanding where patients should be on the spectrum of survivorship services,” Sayles says; to that end, the program uses a new 16-item questionnaire to “help place patients in the right direction.”

Onward launched Nov. 4 and was set to be unveiled at other BSW facilities shortly after that — first in Waco, then in Plano.

“It’s probably a little out of the ordinary to have a pro- gram this extensive, but we want to make sure we’re building a product that other facilities would want to emulate,” Sayles says.

The program launched with an event that allowed attendees to try a variety of Onward activities. The day was rounded out with a talk by CURE ® advisory board member Wendy S. Harpham, M.D., a long-term cancer survivor, author on survivorship and patient advocate. Based on a book she recently wrote titled “Healing Hope,” Harpham discussed choosing the best hopes on which to focus.

Harpham defined a “healthy survivor” as someone who gets good care and lives as fully as possible. With that in mind, she urged attendees to use the Onward program to help them overcome obstacles to hope, which could include lack of sleep, pain or distress. Further, she asked them to re-evaluate what they are hoping for to make sure those ideas will support their own happiness and satisfaction.

“Focus your attention and energy on hopes you can do something about, such as hope to be an effective patient who is going for checkups, reporting symptoms, eating healthful foods, exercising and doing mindfulness — all things that facilitate health,” she says. “Even if hope for cure is realistic, it may not be helping you get good care or enjoy life as much as hope for shorter-term goals and for outcomes over which you have near-complete control.”

The Onward program comprises five platforms:

• Rehab and Fitness includes Pilates, yoga, a staffed exercise room and strategies for easing lymphedema. “People love to go and work out and be able to have the instructors help make them stronger,” Sayles says.
• What About My Family? This platform offers counseling about financial issues, fertility, genetics and sexuality, as well as help for distressed caregivers and referral to com- munity resources.
• Cognition includes a memory center and the chemo brain study.
• Transition to PCP guides patients in their move from oncologists to primary care physicians. This piece of the program also involves an ongoing study.
• Body and Soul offers nutrition education, cooking demonstrations, support groups and activities focused around specific cancer types or issues. Also included are behavioral health services, integrative therapies such as acupuncture and biofeedback, spirituality explorations and stress reduction techniques such as aromatherapy and meditation. Sayles manages the arts and medicine portion, which incorporates two art therapists and two music therapists who can visit with patients in groups or one-on-one. The program also includes an art studio that is open every weekday.

“There’s a story a day coming out of the art studio. One patient who has stage 4 kidney cancer says she found it more therapeutic than the occupational therapy she was prescribed. People who never thought they could draw are creating beautiful, wonderful things in there,” Sayles says. “It’s a good way to remember that you’re not just a disease — you’re whole on the inside, no matter what is going on.” Many find the music program meaningful, Sayles adds. One survivor said: “Oprah always gives something away to the whole audience; I wish could wrap up this last 20 minutes of experience with this musician and give it to everybody for Christmas,” Sayles recalled.

“We have tried to design something we know will be powerful in the hands of our patient population to help them grow stronger and have a better experience,” Sayles says. “It expands your boundaries when you feel your options are pretty limited. I love what we do.”

For patients whose treatment centers don’t offer such services, Sayles says, “there’s a lot they can do on their own, through YMCAs around the country that offer a survivorship program called Livestrong. Finally, there are meditation, yoga and Pilates classes all over, so if you don’t have a survivorship program associated with your area, you can get involved.”