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WSJ – When a Doctor Isn't Enough

WSJ – When a Doctor Isn't Enough


When Judith Nakamura tried to see a surgeon to follow up on her treatment for breast cancer recently,

she was told it would be a two-month wait. Colleen Sullivan-Moore stepped in and got Ms. Nakamura an appointment the following week.

Ms. Sullivan-Moore, at Presbyterian Healthcare Services in Albuquerque, N.M., heads a team of nurse navigators. Their job: to help steer cancer patients through the medical-system maze.

Over the course of Ms. Nakamura’s seven months of treatment, Ms. Sullivan-Moore helped her understand the diagnosis and overcome her fears. She was in the recovery room when Ms. Nakamura awoke after her surgeries. And Ms. Sullivan-Moore directed the patient where to buy a wig before she lost her hair to chemotherapy treatment.

One Patient’s Story


“She was the one who answered all the questions I was trying to figure out and coordinated every step for me,” says Ms. Nakamura, 50 years old, who works as chief judge of the Bernalillo County Metropolitan Court. “She really helped get me through that system.”

The Presbyterian service, with four nurses and a social worker, is part of a growing field known as patient navigation. At no additional charge, navigators help patients make informed medical decisions and assist with setting up multiple doctors’ appointments and tests. Navigators also provide tips on dealing with chemotherapy, make sure patients stay on track with their treatment plan and offer emotional support.

Depending on the hospital, navigators might be nurses, social workers or other staffers certified through programs that include training in care coordination, motivational interviewing skills, and cultural sensitivity. They have access to patient medical records and treating physicians. They can also run interference on insurance issues, help with translation for non-English speakers and even make sure patients have a ride to the doctor’s office.

“Cancer patients can get lost floating around in the system and they need someone knowledgeable to help anchor them,” says Dava Gerard, a breast surgeon and administrator in Presbyterian’s cancer-treatment program.

While advances in cancer treatment have helped save millions of lives over the last three decades, patients now often face far more complex treatment decisions and follow-up options than they did in the past. Efforts by hospitals to make the system clearer and to increase coordination among doctors haven’t always kept up with the changes, and patient navigation is seen as one possible solution to the problem.

Hospitals around the country have been adding patient-navigation services in recent years, helped by funding from governments and private groups. The Commission on Cancer, part of the American College of Surgeons, issued new standards this year that will require cancer centers to offer patient-navigation services by 2015 to meet accreditation requirements.

Several studies have shown that navigation services increase participation in cancer screening and adherence to follow-up care. Data from a five-year study, sponsored by the National Cancer Institute and involving thousands of patients, are being analyzed to determine the benefits of patient navigation to groups including racial and ethnic minorities, who often don’t get early screening and face multiple barriers to timely and effective care.

Sheila Profenna’s doctor had been telling her to get a colonoscopy for three or four years. But the 54-year-old says she was scared of the procedure and canceled two or three appointments. After she had some worrisome symptoms earlier this year, her doctor at Cambridge Health Alliance, a Boston-area public health-care system, put Ms. Profenna in touch with patient navigator Jennifer Murillo.

Ms. Murillo offered Ms. Profenna useful tips on swallowing the solution patients have to take to cleanse their bowels before the procedure, such as mixing it with a lemon-flavored drink. Ms. Profenna says she was concerned at first that it didn’t seem to be working, and called Ms. Murillo that day about a dozen times. On the day of Ms. Profenna’s colonoscopy, Ms. Murillo arranged transportation to and from the appointment. “I didn’t have to be alone and scared, and Jennifer made me feel as if I had someone to hold my hand through the whole thing,” says Ms. Profenna, whose test didn’t turn up any problems.

When Ms. Nakamura received her cancer diagnosis, she recalls having a sensation of darkness, and a “weird, empty feeling in the pit of my stomach.” She was unable to absorb “all this information coming at me,” she says. Still, Ms. Nakamura ignored her doctor’s recommendation to contact the hospital’s then-new nurse-navigation program. She recalls throwing the slip of paper with Ms. Sullivan-Moore’s name in the back seat of the car, thinking, “I don’t need anyone to help me,” and going home to go online for information.

Instead, Ms. Sullivan-Moore called her and set up a meeting. Using pictures and charts, the nurse walked Ms. Nakamura through every aspect of the diagnosis and pathology report. Being able to ask questions that had escaped her while she was digesting the news from the doctor, “immediately calmed me down,” Ms. Nakamura says.

Ms. Sullivan-Moore set up the oncology, surgery and radiation appointments the patient would need for the next few months. She scheduled appointments so they wouldn’t interfere with Ms. Nakamura’s court schedule, and later often scrambled to switch times if something came up. Appointments also were scheduled to allow Ms. Nakamura to keep up with her favorite pastime—hot-air ballooning.

“We spoke often about her quality of life and her doing what she loves,” Ms. Sullivan-Moore says. “Ballooning kept her going.”

After Ms. Nakamura’s first surgery, a lumpectomy, she woke up to see Ms. Sullivan-Moore in the recovery room. She was also the one who tracked Ms. Nakamura down a week later to tell her to call her doctor, who told her the frightening news that the surgery hadn’t cleaned out all the cancer. She consulted with her doctors and Ms. Sullivan-Moore and decided to skip another lumpectomy and have a mastectomy on the same side.

Ms. Nakamura says she had great support from family, friends and colleagues, but worried about expressing her own concerns and fears to them. Ms. Sullivan-Moore soon became “the only one I felt comfortable sharing my fears with, providing me with emotional support as well as information.”

At one point, she was driving to work crying and called Ms. Sullivan-Moore to ask, “Am I going to die?” Ms. Sullivan’s response immediately took away her fear: “Judy, of course not! What are you thinking!”

After the second surgery Ms. Nakamura had to go through four sessions of chemo from October 2009 until January of last year, followed by six weeks of radiation five days a week. Ms. Sullivan-Moore provided tips on how to deal with burns from radiation by putting olive oil on her skin.

Ms. Nakamura says she is happy to have a clean bill of health. She has relied on Ms. Sullivan-Moore to map out a long-term care plan “for the rest of my life,” which she says includes occupational therapy to build up a strong right arm for hot-air ballooning.