HEALTH/MEDICINe
Oncology Nurses & Their Patients: A Special Bond
By Idelle Davidson

Oncology nursing is arguably one of the most emotionally draining of professions. What inspires nurses to embrace a stranger’s heartache? Bonnie Hunt, oncology nurse—turned—actress, has a way of explaining that. “I think when you go through the most important times in other people’s lives—moments of seeing families let go of loved ones, moments of hope, or seeing a tumor disappear—those are incredible moments,” she says. “You’re there to witness it and be a part of it.” It’s been years since she wore her hospital whites as an oncology nurse at Northwestern University Hospital in Chicago. But Bonnie trained as a registered nurse. Her experiences in helping to care for cancer patients were so strong that she still keeps in touch with many of them. “I have many memories,” she says. “The powerful side of nursing is the emotional side.”

Indeed, cancer patients and their nurses often share a special bond, says Linda Krebs, PhD, a past president of the Oncology Nursing Society (ONS). In part, it’s because of the caregiver’s compassion and the patient’s vulnerability. But there’s another reason. Oncology nurses serve as a kind of nexus, linking patients with all aspects of their care. They educate patients and their families about the disease, provide referrals, act as advocates, and take a central role in helping patients deal with symptoms and the side effects of treatment.

In 1983, Lewis Thomas, MD, the late cell biologist and writer, perhaps best described the role of nurses. An illness had landed him in the hospital for three weeks. Afterward, he applauded nurses as the “glue” that bound the health-care system together: “It’s an astonishment, which every patient feels from time to time…that the institution is held together…by the nurses and by nobody else.”

As never before, the 75,000 oncology nurses in the United States are partners with patients. Their roles have expanded in recent years to include specializations in chemotherapy, radiology, hematology, even genetics. And they are working not only in community hospitals but in cancer centers, hospice, and home care. “Our practice is based more on good, sound scientific research than it has been in the past,” says Dr. Krebs, herself an RN and an Advanced Oncology Certified Nurse. “We’re able to apply what we’ve learned to patients so their quality of life is improved.”

Symptom and side-effect management, especially, are areas where oncology nurses make a major contribution, says Bridget Cuihane, RN, Executive Director of the ONS. For example, an under-recognized symptom of cancer and its treatment is fatigue, she says. “For many years patients reported this symptom to their health-care providers and physicians, and those people would say, ‘You have cancer, you’ve been through a lot of rough treatments, naturally you’re going to feel tired.’ They just pushed it aside,” says Culhane.

But feeling so bone tired that you’re unable to lift yourself out of bed in the morning is devastating. “In some patients, the fatigue can last for years after the treatment stops,” she says. “It affects their ability to return to work and to enjoy activities with their children and families.”

Dealing with fatigue is a special focus of the ONS. PhD-level nurses research the subject and publish their findings in journals such as the Oncology Nursing Forum. Patients interested in ways to manage fatigue can visit a website put up by the Society (www.cancerfatigue.org).

“It almost seems incongruous,” says Culbane. “If the person is tired, why wouldn’t you encourage them to rest in bed? But nursing research has really shown that in some cases that just makes it worse.” Bedside nurses use these findings to help educate their patients.

The mission of the ONS is to promote excellence in oncology nursing and quality cancer care. Since its incorporation in 1975, the Pittsburgh-based ONS has grown from 200 members to over 29,000. More than 200 local chapters provide education and peer support.

To receive an Oncology Certified Nurse (OCN®) credential, nurses must be licensed RNs experienced in the practice of oncology nursing, and they must pass an examination. Candidates must hold a bachelor’s or higher degree in nursing.

The ONS has published a Patients’ Bill of Rights, informing consumers of their cancer-care rights. The organization actively supports legislation helping those affected by the disease.

“I don’t think it’s any secret that our healthcare system right now is being driven more by cost than quality,” says Culhane. “We’re trying to network with managed-care organizations to explain to them what we feel constitutes quality cancer care. The patient is our first priority.”

DRUG ERRORS

Nurses share responsibility for seeing that a drug dosage administered to cancer patients is correct, says Culhane. “In the most basic nursing school program, one of the first things you’re taught is that when you administer medication, you have to make sure you’re giving the right drug in the right dose to the right patient at the right rime by the right route.”

In any health-care delivery system, she stresses there should be a host of double-checks. The physician has the responsibility for correctly calculating and writing the order, and the pharmacist has the responsibility for checking it, she says.

But sometimes the system fails as it did in 1994, for instance, when several nurses allegedly administered lethal doses of intravenous chemotherapy to two women at the Dana-Farber Cancer Institute in Boston. The deaths of the patients, participants in an experimental treatment for breast cancer, forced hospitals and health professionals to examine the potential for medication errors.

Dana Farber responded with, among other steps, a physician order-entry computer system designed to catch medication errors before they get to patients.

MOST QUALIFIED

“If I were the patient looking for someone to provide care for me,” says Dr. Krebs, “I would be looking, first and foremost, for someone who had education as a registered nurse. I would prefer that they were certified and I would insist they were qualified to administer chemotherapy.”

Her tips to patients include making a point of noticing the nurse’s name tag. It should be visible and identify that person’s credentials. The nurse should be knowledgeable about the patient’s care and have the expertise to answer questions or find someone who can. The nurse should also be able to provide written and verbal information about diseases and therapies.

Dr. Krebs, an assistant professor at the University of Colorado School of Nursing, advises students to ask their patients how they would like to be approached. “For example, ‘Would you like to he addressed as Mrs. Jones or Susie?’ They should show respect for the patient as an individual,” she says.

Patients often praise their nurse’s compassion and willingness to help teach them about their disease. Amy Applehaum is one such patient. First diagnosed with breast cancer through a routine mammogram in 1994, the 55-year-old Los Angeles business attorney seemed fine after surgery and chemotherapy. Two-and-a-half years later the cancer reappeared, metastasized to her liver. Applebaum’s oncologist at the UCLA Jonsson Cancer Center recommended she take part in a clinical trial of Herceptin. Applehaum still receives the drug intravenously once a week.

“The results were pretty dramatic,” says Applehaum, now practicing law full-time. “The liver tumors shrank substantially. At this point they’re essentially gone.”

AnneMarie Siney-Yeh, RN, OCN, has been Applebaum’s nurse since she started the Herceptin treatments at UCLA. “She would tell me how other people were doing on Herceptin and would talk to me about the studies,” says Applebaum. It was Siney-Yeh who persuaded her to undergo a Port-A-Cath implant. That way Applebaum could receive the infusions internally without the trauma of a needle stick in a fresh vein each week.

They’ve become friends and Applebaum attended Siney-Yeh’s wedding. “She takes care of me and I just feel a tremendous amount of support,” Applebaum says. “You only see a doctor once every 6 weeks. But if you’re not feeling good or reacting properly to something, the oncology nurses give you all this information and they’re wonderful.”

There’s a certain intimacy that develops between oncology nurses and patients, acknowledges actress Barbara Barrie, who survived colorectal cancer and a surgical redirection of her bowel. The 68-year-old Academy Award and Tony nominee was horrified to learn that she’d need to eliminate her body’s waste into a disposable pouch. Terry Haus, an RN and certified enterostomal therapy nurse at Columbia Presbyterian Hospital in New York, helped Barrie through this life adjustment with efficiency and humor.

“She’s really some kind of special human being,” says Barrie. “Terry’s not afraid to get right there with you in the bathroom.” The actress was so grateful for her recovery that she dedicated her book, Don’t Die of Embarrassment: Life After Colostomy and Other Adventures, to her husband, her children and Haus.

MOST NEEDED

“Every hospital, big or small, should have a nurse like this,” says Barrie. “They’re the ones who pull you through.”

In rural towns especially, doctors find it hard to manage without oncology nurses. That’s the case for Mark Turrill, MD, an oncologist and hematologist in the Northern California agricultural community of Lake- port. Known for its pear crops, freshwater lake, and Indian casinos, Lakeport is about 2 hours from Sacramento. Dr. Turrill is the town’s lone oncologist. Sarah Tichava, RN, OCN, is his only full-time oncology nurse. Together they treat many types of cancer patients. Tichava says that what she treasures most about her job is the person-to-person contact.

“People ask me a lot if what I do is depressing. Surprisingly, it’s not,” she says. “Sometimes patients have a poor prognosis. They’re extremely vulnerable, especially when they’re first diagnosed and going through the first stages of shock, disbelief and anger. In that vulnerability, they just so appreciate another human being looking at them and seeing them for the people they are.”

One of her patients, 75-year-old Arnie Kuersten, has been coming to see Tichava for about 3 years, ever since he found a lump below his chin while shaving. He learned he had non-Hodgkin’s lymphoma. Kuersten began treatment, receiving six cycles of chemotherapy. Then he had a recurrence and started again.

Tichava speaks of the retired telephone engineer with affection. “He comes in and tells me a new joke every day. He’s very funny.” But what he doesn’t readily talk about are his symptoms. “He downplays them and needs to be queried,” she says.

But while Tichava observes Kuersten, he’s watching her too. The respect is apparent. “She has a certain ease about her that makes everybody else at ease,” he says. “You see the doctor for 10 to 15 minutes. But he’s not administering drugs. He’s not sitting with you for an hour and a half while you’re taking these chemicals. Sarah might be running between two or three patients and she always has a moment to smile and listen.

“Cancer patients can he lonesome, so lost, looking for anybody to console them,” reflects Kuersten. “And who do they turn to? There’s nobody there except the nurse.”

RADIATING WARMTH

Take, for instance, Carole Morgenstern, RN. She’s one of three nurses working in radiation oncology for Memorial Sloan-Kettering’s satellite facility on Long Island, New York. Their department is equipped with cobalt and linear accelerator machines and runs busily from 8 am to 8 pm.

“The hardest patients to take care of in this setting are the patients having radiation therapy to the head and neck,” says Morgenstern. “They have the potential for serious side effects and must he checked daily. We listen to them cry and are their biggest cheering section when they make it through.”

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