A Country Mile: Patients in Rural Areas Face Barriers to Treatment

Kimberly Buchmeier of Auburn, Neb., was diagnosed with non-small cell adenocarcinoma lung cancer in March 2011, at age 37. She underwent a lower right lobe lobectomy, followed by four months of chemotherapy, and today receives regular CT scans to ensure that her cancer has not returned.

Though she feels good now, getting the treatment she needed was a huge challenge. Auburn, a town of just 3,000 people, did not have a medical oncologist, so Buchmeier was forced to travel 150 miles round trip to the Southeast Nebraska Cancer Center, in Lincoln, for her thoracic surgery, chemotherapy and follow-ups.

Diagnosed with lung cancer, Kimberly Buchmeier was frustrated by the lack of options for oncology care in her rural Nebraska area. [Photo by Mandy Hall]

Recognizing a Health Care Gap

The experience was exhausting and often frightening, Buchmeier recalls. “If I was sick from chemo or I needed something special, help was 75 miles away,” she says. “You already have cancer, you’re going through chemo and you feel terrible, and you’re driving an hour and 20 minutes one way just to get treatment. So the distance was a huge challenge for us.” So was the lack of information about lung cancer, and of specialized treatment, which is far more accessible in larger cities. Rather than choosing from among a variety of cancer centers and oncologists, Buchmeier was simply told where to go for care, and who would treat her. “I can’t believe the lack of options I had available to me,” she says. “I feel I was limited in my care.”As Buchmeier and countless other cancer patients have learned, receiving appropriate oncology care in a rural area can pose numerous challenges, many of which can have an adverse effect on cancer outcomes and quality of life.

At the heart of the issue, experts say, is a lack of, and uneven distribution of, oncology specialists. According to a 2015 report by the American Society of Clinical Oncology (ASCO), “The State of Cancer Care in America,” just 5.5 percent of physicians practice in rural areas. Yet, according to a similar ASCO report issued a year earlier, nearly 19 percent of Americans live in such areas. Even more concerning: More than 70 percent of the U.S. counties analyzed by ASCO for the 2014 report had no medical oncologists.

Getting physicians to work in rural areas can be difficult, acknowledges Anne O’Dea, a hematologist and medical oncologist with the Dreiling/Schmidt Cancer Institute at the Hays Medical Center in Hays, Kan. Factors include a lack of amenities common to larger towns, such as theaters and museums, and fewer career opportunities for spouses.

The Symptoms of Isolation

But that doesn’t mean the medical community considers the gap acceptable. Some major cancer centers are reaching into rural areas to offer help, both by sending visiting oncologists to satellite offices of their institutions, and via the quickly growing trend of telemedicine, which allows patients and their local doctors to consult with top cancer-treatment experts by video, telephone or closed-circuit television.One result of a physician shortage is that people tend to neglect important cancer screenings, which means their cancers may be more advanced when diagnosed. “I see more advanced cancers in comparison to early-stage cancers in rural communities than I did when I was practicing in an urban area,” O’Dea notes. “That’s definitely challenging.”

Worst off are patients with rare types of cancer, because diagnosis and treatment often require high levels of specialization, says Gladys Rodriguez, a medical oncologist at the START Center for Cancer Care in San Antonio, Texas. “Pancreatic cancer, liver cancer or any bile duct cancer requires special expertise for diagnosis,” Rodriguez explains. “So, unfortunately, they are often diagnosed in the advanced stages” among rural residents.

Rural patients may also get diagnosed later because of ingrained cultural issues. Within rural Hispanic communities, Rodriguez says, there may be a social stigma associated with a diagnosis of cancer because it is erroneously believed to be always incurable. “A lot of times people hear only about the person who didn’t make it, not all the others who have been cured,” Rodriguez says. “Or they may have had a relative who got cancer 20 years ago when not as much could be done for them.”

Compounding the problem of later diagnosis is that, generally speaking, rural residents tend to be poorer, underinsured and suffering from health issues directly related to their environment and lifestyle, such as obesity, diabetes and chronic obstructive pulmonary disorder, reports Susan Krigel, a licensed clinical psychologist with the Midwest Cancer Alliance. These factors can dramatically influence cancer treatment and outcomes.

“Obesity is a powerful risk factor for the development of many cancers, so just the fact that obesity rates are higher in rural areas means we should have higher rates of certain cancers,” O’Dea says. “Obesity also impacts the care patients are able to receive. If someone is morbidly obese, it’s going to make any potential surgery more complicated.”

Finally, there’s the problem of tobacco use. In its report “Cutting Tobacco’s Rural Roots: Tobacco Use in Rural Communities,” the American Lung Association explains that individuals living in rural communities are more likely to use tobacco products. As a result, experts say, they face a greater risk of developing lung cancer.

“Historically, rates of tobacco use have been higher in rural areas than non-rural areas of the country, and this hasn’t changed,” confirms Kimberly Horn, associate dean of research in the Milken Institute of Public Health at the George Washington University School of Public Health and Health Services in Washington, D.C., and a contributor to the ALA report. “While cigarette smoking, a major factor in lung cancer, continues to decrease across the country, rates still remain proportionately higher in rural areas, particularly Appalachia.”

Horn notes that many states already sponsor widespread tobacco-control efforts, and suggests that they now tailor some programs specifically to the needs of rural populations.

Over the River and Through the Woods

“Knowing that access can be an issue, we must seize opportunities,” she says. “Those might include prevention programs at the earliest stage in schools and community centers, interventions when women and families come in for neonatal care or for services at local health departments, mobile treatment services or statewide quit lines that allow people to access care from their homes.”As did Buchmeier, when rural residents do develop cancer, they frequently must travel great distances to get the care they need. It’s one of the most difficult obstacles facing rural cancer patients, reports Patrick Cobb, medical director at St. Vincent Frontier Cancer Center in Billings, Mont. “It’s not only the cost of gasoline, but the cost of time,” he observes. “It’s a big commitment to get up and drive a couple of hours to see the physician, get your labs drawn, receive your chemotherapy and then drive home. It puts another level of stress on patients that people in urban environments probably do not have to put up with.”

Ultimately, that can force some hard choices. “Patients often make decisions about their treatment based on very practical things, including their geographic location,” confirms O’Dea. She recalls a breast cancer patient who declined six weeks of daily radiation, which would have saved her breast, because she had no one to care for her cattle. “This woman would have had to drive three hours up and three hours back every day for six weeks,” O’Dea explains. “She had a farm and she was caring for her ailing husband, so for her the decision was easy: She chose to remove her breast.”

In fact, it’s common for people from rural areas to find that their occupations get in the way of their cancer care. Many of the patients who come to Hays Medical Center are farmers who must wait until the seasonal harvest is over before they can see a doctor, O’Dea explains. This often means that their cancer or other illnesses have progressed before they finally make an appointment. It’s frustrating, but O’Dea understands. “Harvest is their livelihood,” she says. “If they don’t bring it in, they don’t make any money. So that’s their priority.” Similarly, day laborers are more likely to hold off seeing a physician because they can’t afford to take time off from work. Simply put, if they don’t work, they don’t get paid.

Clinical Outreach

Even after rural residents have found workable arrangements for receiving cancer treatment, their geographic separation from care can continue to pose problems. Because of their distance from specialists, Cobb says, it can be especially frightening when something goes wrong at home. “It’s not easy for patients to drive that far when they’re sick, so they may have to be seen in emergency rooms in small towns,” he says. “Oftentimes the doctors there are able to take care of them, but if they can’t, we’ll have to send a plane or helicopter to get them. That doesn’t happen often, but it’s another level of concern.”Thankfully, cancer centers in larger cities have a variety of means to assist patients in outlying areas.

At the Dreiling/Schmidt Cancer Institute, for example, medical oncologists like O’Dea regularly visit satellite clinics to see patients who cannot easily travel. And St. Vincent Frontier Cancer Center has an agreement with a stem cell transplant specialist in Denver who visits Billings monthly to see patients. “The role of visiting specialists for something like that is a very big deal,” Cobb says.

In addition, St. Vincent was an early adopter of telemedicine. “We have an outlying clinic in Miles City, which is about 150 miles from Billings,” Cobb says. “The nurses there know our patients and deliver chemotherapy under our supervision, but with telemedicine, I believe we do a better job of keeping up with the patients and answering their questions. It’s not as good as being there, but it’s better than trying to do it secondhand through a nurse or physician assistant.”

Telemedicine has been available in various forms for many years, says Tim Poe, director of telehealth for the UNC Cancer Network in Chapel Hill. UNC uses the technology primarily for discussion between medical professionals and for providing continuing education for physicians and nurses, but Poe acknowledges significant benefits for cancer patients in rural areas. Not only can they consult from afar with oncologists at a major cancer center, but their community-based doctors can confer with UNC multidisciplinary tumor boards about optimal strategies for treatment. This, in turn, can lead to opportunities for rural patients to participate in clinical trials, which otherwise may not have been suggested to them as a possibility.

Especially important, Poe says, is that patient health information be carefully protected when telemedicine is used — something that is absolutely achievable. “We have to be extremely careful that we follow all guidelines,” he notes, “and the technology has evolved significantly in terms of our ability to do that.”

Indeed, telemedicine falls under the same regulatory scrutiny as in-person medical care and must meet the same HIPAA guidelines, says Krigel. “Yes, the technology must be encrypted, but that’s not sufficient,” she reports. “To ensure that the technology is sufficient, you have to be able to audit who had access and you must be able to tell if access has been breached. But even that is not enough to ensure confidentiality — you must also treat the product of it confidentially.” To guarantee that patient information remains private during telemedicine sessions, Krigel says she closes the blinds in her office so no one outside can see her computer screen. The transmission of her notes for placement in a patient’s file is also done in a confidential, HIPAA-compliant manner.

The telemedicine arrangements available to patients depend, in part, on where they live. Each state regulates telemedicine independently, with some treating remote encounters as if they were in-person appointments and others applying a variety of rules: for instance, that a physician can’t act as a patient’s doctor until after an in-person exam, or that certain prescriptions may not be issued via telemedicine.

While some states have loosened restrictions on telemedicine, citing the technology as one solution to a growing doctor shortage, others have cracked down. In April, the Texas Medical Board voted to sharply restrict telemedicine because it said the technology does not adequately establish a doctor-patient relationship. Patients can still videoconference with their physicians from a health care location, such as a clinic or hospital, but a medical professional must be present with the patient, in person, to assist.

Photo courtesy of Ellen Wengert

Ellen Wengert of Jennings, Kan., relied heavily on telemedicine after being diagnosed with breast cancer — invasive ductal carcinoma with lymph node involvement — in September 2014. Her tiny town was 110 miles from Hays, so she relied on a satellite clinic in Norton 26 miles away for in-person and teleconferencing sessions with O’Dea.

“The travel to Hays was my primary concern, both physically and financially,” Wengert says. “I have insurance, but there were still gas and food expenses, plus wear and tear on the car. The satellite clinic helped a lot and Dr. O’Dea tried to accommodate me as best she could.” During telemedicine sessions, Wengert says, a nurse was at her side to provide medical information to the physician on the other end.

Rural patients who would like to use telemedicine to connect to a larger cancer center or other specialists outside of their geographic region should set that up with their medical oncologist or social worker, advises Camille Ellard, a social worker at Dreiling/Schmidt Cancer Institute. “If telemedicine is something that interests them, they should pursue it right away. They should be comfortable with the technology before they are in any kind of a crisis situation.”

Psychosocial Care

If that doesn’t work out, patients can seek out telemedicine options on their own by signing up with companies that offer such services. Grand Rounds (grandrounds.com) promises to connect patients remotely with expert physicians who can give second opinions or weigh in on immediate, critical health decisions; it can also connect patients with expert physicians in their own geographic areas for in-person appointments. Most people who use the service get it as a free benefit through their own or a family member’s employer; those who aren’t covered for the service would pay $7,500 for an expert second opinion. Another option is 2nd.MD (http://2nd.md/), which offers personalized medical second opinions by phone or video, either as a free employee benefit or for $3,000 per case.Isolation in the face of a serious illness can negatively impact a patient’s psychosocial well-being, experts warn.

Cancer support groups can provide solace, but such opportunities may not be convenient for rural patients. And while online support groups are available to nearly anyone, anywhere, and smaller communities tend to rally around those in need, O’Dea says, isolation and loneliness are still common.

Telemedicine may be able to help patients gain some support.

For instance, University of Utah Health Care is launching a telemedicine program that will include, among many other services, psychosocial help for patients of the institution who have cancer, or who have survived the disease. Many of the health system’s patients live in rural or frontier areas, and the telemedicine program will allow them to get counseling without traveling to the main facility from remote locations in Montana, Nevada and Wyoming.

Some obstacles at the moment are that Medicare is not reimbursing for this service, and also that university professionals will need to be licensed in the states in which they provide telemedicine, a process that could be prohibitive for the institution, said Anna Beck, director of supportive oncology at Huntsman Cancer Institute, which is part of University of Utah Health Care.

Still, Krigel agrees that “Telemed provides a way to connect.” She notes that “The University of Kansas Cancer Center has a program called the Turning Point, which offers a variety of services to both cancer patients and others with other chronic and acute illnesses to meet their psychosocial needs. We collaborate with member sites of the Midwest Cancer Alliance to extend and support their existing psychosocial services.”

Whether in person or via telemedicine, patients must be their own advocates in getting both cancer care and the support they need to successfully pursue that care, experts advise. If possible, patients should seek help from a hospital social worker or patient navigator, whose job it is to guide them through the health care system and assist them in finding financial help, transportation and other resources.

“Do not let your geographic location dictate the quality of your care,” states O’Dea. “If you advocate for yourself, you can seek out local experts who have expertise in treating your specific type of cancer. Patients need to be challenged to do their research and ask questions of their health care providers. If they do that, I think they will get the best care.”