Patients tell doctors they need more
About 100 people, most of them medical professionals and many of them standing, packed the ground-floor conference room in the Strecker Cancer Center at Marietta Memorial Hospital on Thursday for a town hall meeting about cancer.
The town hall featured two physicians from the American Society of Clinical Oncologists, a group of doctors dedicated to networking cancer information for both their peers, other medical professionals and patients.
“We’ve come out to have a conversation, to raise awareness,” Dr. Monica Bertagnolli, chief of surgical oncology at Brigham and Women’s Hospital in Boston and a member of the ASCO, told the gathering. “We’re an organization of 45,000 doctors around the world, and our goal is to prevent and cure cancer. We will conquer it through research, and we promote quality care for everyone.”
The success in treating cancer has changed dramatically over the past decade, and Bertagnolli was asked how the persisting public perception of cancer being a death sentence can be changed.
“I’m already learning from my visit here and elsewhere that patients want the real story. Some have had serious and terrible challenges, and the care here has given them their lives back, given them great strength,” she said. “We are collecting videos of their experiences. We need to be honest and truthful, but we also need to tell these inspiring stories.”
Bertagnolli noted that the cancer.net website, containing information compiled and curated by members of the ASCO, is intended for patients as well as clinicians and will continue to include encouraging stories of survival and treatment.
Patients in the audience expressed the greatest concern not about treatments but about communicating with their physicians.
“We need more information,” said John Miller, a 56-year-old being treated for lung cancer. ” I’ve had to get information on my own. Doctors need to focus more on their patients and answer our questions. They don’t explain why we’re getting the treatments.”
Another patient, Sandra Rexroad, said of her experience with the Veterans Administration health system, “I had to learn to be my own advocate … you have to find someone who will give you options.”
Rexroad, a 59-year-old widow who suffers from malignant brain tumors, said she was shuttled around between veterans’ clinics in Kentucky and West Virginia before being referred to a neurosurgeon at Strecker for treatment. She said the medical community seems not to understand the hardships involved for patients who need to travel or have difficulty understanding the reasons for the treatment they are receiving.
Dr. Colin Weekes, another panel member from ASCO, recalled a patient he treated while working in a clinic in Denver. The woman, who was impoverished and didn’t own a car, had to come abut 100 miles from Cheyenne, Wyo., and was often late. Ultimately, he was asked to sign a paper indicating that her treatment would be discontinued if she didn’t get to her appointments on time.
“These stories are told but not always heard or appreciated,” he said. “We need to hear these things in a context so we can understand what it’s like to live with this problem, to think about it from the other person’s point of view, to have some mutual respect.”
Miller said after the meeting that he feels he doesn’t get enough time with his physicians.
“It just seems like the doctor is not interested in talking to me, that as patients we have to go to others for information,” he said. “I see my doctor once a month, and it’s always something hurried. But I’ve been in treatment for two years, and I’m going to win this.”
The system is complex and difficult to understand for ordinary patients, and Bertagnolli said in an interview later that doctors might not appreciate the challenge it presents to those outside the medical community.
“Think about it – if any of ourselves as doctors were put in the position of being a patient, we would know what to do, but if you’re not in the medical profession, or you live in a community where you don’t have a lot of access, it’s completely daunting,” she said. “We as doctors know what we need to deliver to our patients, but we’re not necessarily equipped to see what’s needed in terms of community support. It could be transportation, finances, babysitting, all these things that go into our everyday lives that are absolutely essential if you’re going to get the care you need.”
One way of helping is a patient navigator, someone dedicated to helping patients make their way through the system. Electra Paskett, a professor of cancer research at The Ohio State University and part of the town hall panel, urged the group to express support for a bill in Congress that would add patient navigator services to the billable services supported by Medicare and Medicaid.
Meanwhile, there are people like Tom Powell. The 63-year-old Navy veteran and Strecker volunteer helps patients get through the system.
Powell said he was diagnosed with two forms of cancer while living in Florida in 2011. He moved back to Marietta, his hometown, and the medical service he received changed dramatically for the better, he said.
“At those big hospitals in Florida, I felt like a pawn in a game, just a number. Here, it’s much better,” he said. Powell now volunteers two or three days a week at Strecker.
“I’m just very passionate about cancer patients,” he said.