The patient navigator
AN hour before surgery, as she lay waiting in a hospital bed, Sue McKenzie smiled with relief when nurse Mary Keefe walked into her room.
They held hands and talked through last-minute questions.
“You’ll check on me Thursday and Friday if I’m here?” McKenzie asked hopefully. “Oh, yeah,” the nurse said. Making sure breast cancer patients get what they need is Keefe’s job.
She’s a pioneer in the growing healthcare field known as patient navigation.
With advances in cancer treatment, patients face far more complex decisions today than in the past. As a result, hospitals across the country are hiring nurses or other professionals to help patients navigate their way through the medical system.
The job of a navigator is not only to explain breast cancer, answer questions and arrange doctors’ appointments, but also to counsel patients through the terror of a cancer diagnosis, show them how they can survive it, and guide them through their journey.
In the Charlotte area in North Carolina, in the United States, Presbyterian Healthcare, Carolinas HealthCare System and CaroMont Health employ navigators to assist patients with breast cancer, as well as other cancers and diseases, such as heart failure. Carolina Neurosurgery & Spine Associates, a doctors’ practice, also employs a navigator for brain tumour patients.
There is no extra charge for the service. It’s part of the healthcare package.
One of three breast health navigators at Presbyterian, Keefe met McKenzie the day she was diagnosed. She was there when McKenzie had CT and bone scans before chemotherapy. And she’ll be there as long as McKenzie wants to stay in touch.
Since 2006, Keefe has done this for hundreds of patients, some of whom have referred friends, sisters or mothers.
“We connect with them on day one, and we spend as much time as they need,” Keefe said. “I tell them, ‘I don’t work for the doctors. I work for you first of all, as your educator, your supporter and your coordinator.’ ”
Patient navigation started in 1990 at Harlem Hospital Center in New York, where Dr Harold Freeman hoped to reduce health disparities by improving access to cancer screening and reducing barriers faced by low-income, African-American women.
Many studies support the use of navigators, said Angelina Esparza of the American Cancer Society. “Patients really do feel that they are able to better cope with the diagnosis and the cancer.
“There are significant differences in outcomes in terms of stress, fatigue and quality of life. For many years, these psycho-social needs were often overlooked.”
Accrediting bodies for cancer programmes – not just breast cancer – are making patient navigation a required standard. The Commission on Cancer will require accredited cancer centres to offer navigation services by 2015.
Navigators don’t have to be nurses. Some programmes use social workers or even lay leaders. Navigator is the buzzword today, but some hospitals use the term coordinator.
“The name changes but the job is the same,” said Susan Postell, breast programme nurse coordinator with Levine Cancer Institute at Carolinas Medical Center. “I think all nurses are navigators. I’ve been in this role for over 30 years. In a complex medical world, patient navigator nurses can be a breast cancer patient’s GPS.
“A lot of what I do is crisis intervention, explaining the disease, the name of the cancer and what it means, offering hope more than anything else,” she said. “This is an intimidating place to come. Every new cancer patient needs that person they know they can call.”
Keefe, 56, was one of the first official breast health navigators in Charlotte. She was working as an oncology nurse at Presbyterian when the position was advertised in 2005.
“I thought, ‘What a great thing to do for people,’ ” Keefe said.
But doctors weren’t convinced at first that navigators were needed.
“I was ambivalent about it,” confessed Dr Peter Turk, a surgical oncologist. “I didn’t know if she had the ability to make an improvement in what we were doing.”
Today, he’s a believer.
When Dr Turk meets patients who have worked with a navigator, “The discussion can be much more focused. By the time they come to see me, a lot of the emotion has calmed down. They are able to synthesise and make decisions.”
Patients who haven’t met with a navigator are “still very much like a deer in the headlights,” Dr Turk said. “At the end of the meeting, they don’t remember a thing. All they hear is the word ‘cancer.’ ”
Misty Burgie remembers the day, Oct 30, 2008, when she got her breast cancer diagnosis at Presbyterian Cancer Center.
Only 35, she had chosen not to meet with the radiologist who would give her the results of her biopsy.
“I opted for a phone call,” Burgie said. “I was working full time. I didn’t want to waste another trip downtown because I knew I didn’t have breast cancer.” The news stunned her. “I couldn’t breathe,” she said. “I remember thinking, ‘This must be a misunderstanding. I’m 35 years old. There is no history of breast cancer in my family.’ It felt as though I had been given a death sentence.”
She got a call from Keefe within minutes. “When I got off the phone, I thought, ‘OK, I can get through this,’ ” Burgie said. “She just made it sound very do-able.”
When they met the next day, Keefe gave Burgie a 200-page book about breast cancer and showed her which parts to read and which parts she could ignore. “I knew absolutely nothing about breast cancer,” Burgie said. “She helped put my mind at ease.”
Before each of Burgie’s surgeries, Keefe showed up to make sure she was OK. And earlier this year, when Burgie’s mother was diagnosed with breast cancer, Keefe was again there to guide them through.
“It just brought instant peace knowing that my mum was going to be in such good hands,” Burgie said.
Typically, Keefe spends each morning meeting one or more newly diagnosed patients. Instead of giving bad news over the phone, Presbyterian usually schedules initial appointments jointly with a radiologist and a navigator.
“Unless they absolutely refuse, we make them come in and sit down,” Keefe said. “We’ve sat here for two hours with people who have lots of questions, and with tissues, whatever they need.”
Keefe gives each patient a tote bag including a journal and a homemade pillow to elevate the arm after surgery. Mastectomy patients receive camisoles with pockets that hold post-surgical drains. Keefe also gives them lists of places that provide breast prostheses and wigs for those who’ll need them.
Some centres make appointments for patients to meet their surgeons in two weeks or more. But Keefe and her colleagues make appointments within 48 hours. They also arrange appointments with multiple doctors on the same day.
On a recent morning, Keefe made rounds in the hospital, checking on patients. She walked quickly, and her phone rang loudly and often.
In addition to visiting McKenzie, Keefe stopped to see Joy Wells, a Charlotte woman finishing a radiation treatment.
They held hands as they sat to talk. Wells, 52, cheerfully pointed out that her hair is growing back, albeit grey, after chemotherapy.
“It’s so good to see you,” Wells said. “Thank you so much for helping me. I don’t know what I would have done without you.” – The Charlotte Observer/McClatchy Tribune Information Services