Patient navigators help streamline cancer treatment

"When a doctor tells you, 'You have cancer,' it takes the air out of the room," said Diane Stanislowski of Grand Forks. "It's a really devastating diagnosis."

"Your first thought is, 'What, me?' You can't hear or say anything because you can't believe it."

Not only are you emotionally blindsided, you're overwhelmed by unfamiliar medical terminology and the prospect of scheduling lab tests and doctors' appointments, she said.

"You only retain 60 to 70 percent of what they're saying to you. You get a lot of information at once. You can't hear and can't get your arms around it. It's all new."

"You're thrown into a whirlwind you don't understand."

A few years ago, Nancy Klatt, manager of the Altru Cancer Center in Grand Forks, recognized this gap in patient care and led the effort to develop a "patient navigator" program which launched in January 2013.

Each patient is assigned to one of three navigators who helps him or her through the process of cancer treatment.

Navigators answer questions about the care plan, coordinate medical tests and appointments, assist with transportation and lodging needs, help with prescriptions, and work to resolve financial and insurance problems-all in an effort to reduce patient stress and all without charge.

"The patient navigators are a tremendous asset to the medical care of cancer patients," said Dr. Kevin Panico, a cancer specialist at Altru, in an email to the Herald.

"They streamline a very complex process of testing and treatment for the benefit of our patients."

The navigators' goal is to decrease the time frame between diagnosis and getting treatment.

'Stressful diagnosis'

"(Cancer is) one of the most stressful diagnoses you can get," Stanislowski said. "You think, 'Oh, God, this a death sentence.' Your stress level is as high as it can get.

"Patient navigators take you by the hand and say, 'This is what you need to do, what you need to know.' "

"(The navigator) clears the fog away," Stanislowski said. "They make sure you get tests in the appropriate order, as efficiently as possible. They are compassionate and caring people.

"I liken them to Sherpas on Mount Everest," she said. (Sherpas are Tibetan people who live in the Himalayas in Nepal and are known for providing support for foreign mountain climbers.)

"They guide you and clear your path. They reassure you that you will get to the top of the mountain, that you will be successful."

Patients develop a trust with their navigator, Stanislowski said.

"They're extremely valuable. You can call any time, and ask things like, 'I have this ache-is it something important or not?'

"They're a backstop for you," she said. "They're not going to let you fail, and they're going to take care of you."

Reducing barriers

Navigators meet with patients right after diagnosis to help them better understand what their doctor has planned for their care, said Tracy Jamieson, oncology certified nurse and patient navigator.

"We go over the plan again. We can put it into layman's terms," she said.

Even so, because the information they've received is overwhelming, patients often call the next day with questions.

"We keep track of things, like tests, especially when they're getting started," Jamieson said. "We coordinate and arrange those for the patient and their families."

Navigators are on the lookout for "potential barriers to care-whether they're psychosocial, financial, emotional, transportation or lodging-and alleviate or lessen them," said Vickie Misialek, licensed social worker and patient navigator.

Sometimes it's a matter of supplying people with assistance, for example, through Altru's Filling the Gap program, to help pay for the cost of gasoline to drive to Grand Forks for doctors' visits or radiation and chemotherapy treatment.

"Just getting gas cards is huge," Jamieson said.

Other times, they may arrange for hotel reservations for the patient or refer a patient to a psychologist or licensed certified social worker to talk about the diagnosis and related issues.

They meet with cancer patients at Altru branch locations via telehealth technology.

Insurance problems

Problems with insurance can disrupt the patient's care plan, Jamieson said.

That happened to Stanislowski, who was first diagnosed with cancer about seven years ago and was re-diagnosed in April.

"I had an insurance issue," she said. "My patient navigator (LeAnne Kilzer, oncology certified nurse) took care of it. I don't think I would have had the energy or fortitude to handle it."

Eileen Marti, oncology patient assistance associate, sees situations like these arise regularly, where people "don't have adequate coverage or have no coverage," she said.

Marti searches online for foundations and other sources that will help cover some costs or provide "free product" for qualified patients.

In some cases, she seeks an appeal from insurance companies that have denied coverage.

Klatt recalled a patient who said he couldn't go through treatment because he lacked funds and insurance coverage.

Marti uncovered a foundation that agreed to cover his expenses "going back 60 days and paid going forward," she said.

"There have been changes in insurances that patients didn't know about," Klatt said. "We can put them in contact with our business personnel.

"Sometimes (patients) have coverage they didn't know was active."

The cost of cancer care and treatment can be staggering for some patients.

Due to research and the development of drugs that target certain types of cancer, new medications are proliferating, but "they tend to be very expensive," said Klatt.

Depending on their insurance coverage, patients' co-payments-the portion of medication costs that they are personally responsible for-can be very high, averaging $2,800 per month, said Misialek.

She and her colleagues strive to proactively address financial and other barriers so patients "are more prepared" to go ahead with the doctor's prescribed plan, Marti said.

Complicated care

In recent years, the need for navigators has grown because patient cases have become "so much more complicated," said Jamieson.

"There are many more comorbidities, which makes it more important for us to be proactive instead of reactive." (Comorbidity is the presence of one or more additional disorders or diseases, along with the primary disease or disorder.)

The field of patient navigators-sometimes called patient advocates-has taken shape over the past 5 to 10 years, and is driven by the increasing number of baby boomers who are dealing with chronic medical problems, said Theresa Cronan, a professor at San Diego State University.

"People with chronic conditions use the health care system more. But the health care system has become so complex that it's really hard for people to navigate," said Cronan who has studied the health advocacy industry.

The American College of Surgeons, which accredits cancer centers, "is recognizing the complexity of cancer care," Klatt said. "So many more people and departments are involved."

Altru cancer specialists have embraced the patient navigator concept, she said.

"They look for (the navigators) and have them in the room (with the patient). They really appreciate them."

When she visits with patients, Klatt said she hears many positive comments about the navigators.

"One patient wants to adopt LeAnne. Another said that Tracy is like an angel that appears out of nowhere to help her," she said. "They rave about them. (The navigators) help them in such tangible ways."

"I think they like having that one person they can call for anything. It's reassuring."