Three years ago, Karen Clarke got the news no one wants.
At 43 years old, she was diagnosed with stage 3 colon cancer. As a mother of three and the assistant superintendent of Alachua County public schools, Clarke didn’t have time to put her life on hold while she fought to keep it. So, after surgery, she began working again, even bringing a computer to the hospital to work during chemotherapy.
In all, Clarke soldiered through six months of chemotherapy, which she underwent at The Cancer Center on the campus of North Florida Regional Medical Center. It was a grueling process.
“I did have that moment once in a while, you know, you’re by yourself in the hospital at 2 a.m. going, ‘Why me?’” Clarke recalled.
Now, Clarke is returning to The Cancer Center, only this time, she’s coming back to help. Cancer free for two years, she has joined the patient advisory board for the Florida Cancer Specialists’ new $10 million cancer treatment facility being built adjacent to The Cancer Center, which is set to be completed June 1, 2016. The Cancer Center and FCS have partnered to fight cancer in North Central Florida. To that end, they have reached out to former patients like Clarke for feedback in order to construct the most patient-friendly, low-stress environment possible.
“We want it to be built around the patient,” said Dr. Allison Grow, an oncologist at The Cancer Center. “We want to have an integrated cancer center where patients can walk in and receive every kind of care. There is evidence that those kinds of services improve outcomes. That’s what we’re after. It’s ridiculous to try to put together an integrated cancer center and not ask the patients what they need. We feel very strongly about this.”
The evidence Grow speaks of comes from hundreds of tests at cancer hospitals nationwide that have shown that seemingly small environmental changes such as natural light, pleasant views, artwork and even certain wall colors can have a large impact on both patients and staff. Some positive effects include improved sleep, reduction in infection and greater staff productivity.
Former patients like Clarke and Shelley McElroy appreciate the chance to help future patients. McElroy was diagnosed with breast cancer two years ago and had a partial mastectomy and radiation therapy.
“The doctors know it’s not an easy thing for people to go through,” McElroy said. “They want to set up the room to make sure the doctor is looking at you. What colors should the walls be? What about the seating?”
McElroy felt that attention should be paid to the people helping the ones with cancer, be they family or friends.
“I was very concerned (with) making sure that the person that goes with the one getting the diagnosis (is) as comfortable as possible because they’re giving up a lot of their time to go through this with you,” she said. “During my treatment, they just didn’t have the room. They were busting at the seams. You brought someone with you, and you could sit down but they couldn’t. We addressed it at the first meeting.”
For her part, Clarke said she was especially concerned with helping to make the experience of cancer treatment as stress free as possible.
“Ultimately, you have to find something that enables people to relax when they get there,” she said. “You’ve got to get people as de-stressed and relaxed as possible. When you do have cancer, so much of your life revolves around appointments and schedules. Treatments can be anxiety inducing. They can be stressful. You want to make it as calm as possible for the patient.”
Clarke also said the advisory board suggested a patient-advocate system.
“Sometimes, the questions the patients have aren’t necessarily doctor questions; they’re questions about just dealing with cancer, or maybe nutrition questions, or a skin care question,” she said. “Sometimes, you’re hesitant to call the doctor. You know how busy they are. Even though, to them, no question is a silly question, but you feel a little silly calling because it seems so simple. We talked about having patient liaisons or advocates.”
Doctor Cherylle Hayes, radiation oncologist and medical director at The Cancer Center, said the new center will also focus on caring for patients even after they are cancer free — she calls it “survivorship” care.
“They have to come back for follow-up care,” Hayes said. “It’s about survivorship. I have dedicated my life to my patients…It can sometimes be all consuming, but my focus is the patient experience and having them develop this experience for future patients who will grant us the ability to treat them.”
Hayes has a unique view on cancer care from the patient’s perspective — her mother and sister both have cancer.
“We’re really talking about placing the care and the ownership back on the patient,” she said. “We’re saying, ‘How do you like things?’”
For Verdelle Robinson, that question carries particular weight. Unlike many on the patient advisory board, she is still battling breast cancer, and her husband, Jessie, also has cancer.
“It’s not easy,” Robinson said. “I had the radiation with Dr. Hayes in 2009, and I was taking drugs that we thought would prevent it from reoccurring, but it did, in the same breast. At that time, I had a mastectomy and started on a different drug. I guess it was about a month ago now that my count was up for the tumor marker, and a CAT scan revealed that the cancer had metastasized and had affected my liver. I was devastated at that point.”
Verdelle and Jesse have been married 30 years. She is 76, and he is two years her senior. Verdelle is a lifelong resident of Alachua and a retired nurse, which she said helps her know what to expect from treatment. At the same time, she admits, “Sometimes, the more you know — it’s good and bad.”
Verdelle and Jessie remain hopeful, leaning on family, faith and their doctors.
“We have children between us — he has and I have — and grandchildren,” she said. “And they all support us. We’re doing well, actually. Those people at North Florida do all they can. They are thinking for the patient. It is scary, but I trust God. I believe that things (will) turn out as he would like them to. I believe that we go through these things to make us strong. It’s life.”
Dr. Lucio Gordan, chairman for oncology services at Florida Cancer Specialists, said getting feedback from patients like Robinson, Clarke and McElroy has been very beneficial in constructing the new center and he hopes to continue the program even after the center is completed.
“We have gotten some valuable information thus far,” he said. “I hope to be able to continue to have a quarterly meeting or a biannual meeting. Buildings are always in flux, and we will hopefully continue to get valuable input on how we are treating them. We can always make it better.”
That’s good news for former and current patients, who often feel powerless in the face of cancer. Having a voice helps return a feeling of control to those who have lost it.
“In some cases, you are powerless,” Clarke said. “You can say, ‘I’m beating this; it’s not beating me.’ But, no matter how strong you are, everybody has some point where they feel powerless over this disease. Any way that we can empower patients to be able to take control of their situation, but also feel at ease when they walk in, is critical.
“Those little choices are big.”
Healing Through Evidence-Based Design
Evidence-based design is defined as “the deliberate attempt to base design decisions on documented research and well-established best practices,” according to a 2008 report in the medical journal Oncology Issues. More than 600 studies on evidence-based design have been published, and the research shows, among other things, that patients who feel a measure of control over their situations are better able to cope with stress.
Research has also demonstrated that environmental factors such as natural light, pleasant views, artwork and the use of color have the potential to impart therapeutic benefits to cancer patients. As the report notes, “Artificial light, in the absence of natural light, can lead to fatigue, depression, and elevated systolic blood pressure. Conversely, exposure to natural sunlight is associated with improvement in mood and sleep, as well as decreased use of pain medication and possibly even shorter lengths of stay for some patients.” Furthermore, research shows color can have an effect on the pituitary and thyroid glands and that organic sound design — using natural noise such as rain, moving water or songbirds — can improve autonomic nervous system function and release endorphins.