Checking in with patients can bring positive results, since oncology nurses are able to offer interventions for most symptoms of cancer treatment. But the process is not simple. It requires a great deal of insight from nurses, who must discern when patients are withholding information about their symptoms, when they are unlikely or unable to comply with their treatment plans, and when they need immediate medical attention. And determining how best to accomplish that from afar—without exceeding a practice’s resources— involves decisions about what to ask patients, when to contact them, and how.
In general, clinics combine two strategies to track the well-being of cancer outpatients: educating them about what to expect, and then questioning them after treatment, either by phone or online, about how they are feeling and what kind of interventions they might need.
“The call is really just about reinforcing the teaching, finding out how they did, and being able to fine-tune it,” said Mary Elizabeth Davis, RN, MSN, AOCNS®, a clinical nurse specialist at Memorial Sloan-Kettering Medical Center in New York City. “For instance, one of our patients who has prostate cancer has been taking a hormone for it that causes terrible pain in his joints an hour and a half later. I suggested that he take pain medication half an hour before he takes the hormone, to see if it can prevent that from happening.”
For patients who are taking cancer medications at home, both education and symptom assessment can provide vital protection, Davis added.
“It’s a big safety concern that patients are taking it the right way,” she said, “because it can be so tragic if they don’t. An example is an oral chemotherapy drug for brain tumors, Temodar. If a patient took too much, his white blood count would plummet and he would be at risk for bleeding or infection.”
Oncology nurses know which side effects will arise from a specific chemotherapy or targeted treatment, and that is one reason education is so useful.
Nurses can warn patients if their treatment will cause a rash, hair loss, pain, fatigue, or nausea, and offer advice about how to handle those problems and when to ask for help, said Susie Newton, RN, MS, AOCN®, AOCNS®, who conducts symptom management for the outpatient Dayton Cancer Center in Ohio. More importantly, she said, nurses can explain that fever after chemotherapy can indicate sepsis, an emergent condition that patients might otherwise dismiss as a harmless cold.
“Studies show that patients who are more thoroughly educated about drugs and their side effects have better outcomes,” Newton said. “That’s the difference between doing a 10-minute shpiel right before the patient gets the drug and doing an hour-long class that includes the families four days before the patient gets the drug. Even though everybody is busy and the practice is not getting reimbursed for it and there are obstacles, it’s just critically important that these patients are well educated, because they’ll recognize when something is not right. If they don’t, and they just let it go, they’ll end up getting admitted to the hospital.”
Not surprisingly, a lack of education can lead to noncompliance with medical advice, said Carlton G. Brown, PhD, RN, AOCN®, former president of the Oncology Nursing Society (ONS), and an assistant professor in the School of Nursing at the University of Delaware in Newark. To help keep patients informed, he has written a handbook titled A Patient’s Guide to Cancer Symptom Management.
“There’s a lot of research now into compliance, particularly with oral medications,” Brown said. “Some patients have a rash with oral medications, and we’ve been acculturated to believe that a rash means we should stop. In this case, it’s the opposite—it means the agent is really working. In other cases, a patient sometimes comes back after three weeks and says, ‘I had nausea so bad that I don’t want chemo, or I want to delay it or lower my dose.’ That’s not good if we’re trying to deliver a cure or control.”Newton added that, if patients haven’t been properly educated, they might react to the cost of medications—particularly oral agents—by altering their own dosing schedules.
“They’re expensive,” she said, “and sometimes patients will try to stretch out the time period and take half the amount.”
Teaching patients is so important to leaders at ONS that they have drafted legislation that would require Medicare to fund an hour of pre-treatment chemotherapy education for each of its patients newly diagnosed with cancer. Medicare should be involved because more than half of all people diagnosed with cancer are over the age of 65, the bill states. A similar education program is already required by law for Medicare patients who have diabetes, Brown said.
Making the Call
Even educated patients can get overwhelmed, though, and forget to take a medicine or carry out a recommended intervention. To help them succeed, many nurses rely on telephone triage—a set of techniques for contacting patients and assessing how they are feeling and functioning.
Lori Williams, PhD, RN, MSN, BSN, BA
“Our standard is that patients are called 24 to 48 hours after their first chemotherapy treatment and after any change in chemo,” Davis said. “If you’re starting a regimen, the next day you’re usually feeling quite well, because medications for nausea and other symptoms last. So we call two or three days later, and that’s when the patients need the help.”
When calling patients, Davis said, Sloan- Kettering’s oncology nurses work from a computerized menu of questions.
“We have a phone triage book and an electronic manual for our phone calls,” she said. “If somebody calls with nausea and vomiting, it guides the nurse in what questions to ask to make sure you’re getting the right assessment of it. We have guidelines about what is considered emergent, when a patient may need to go to the emergency room or come see us.”
At the University of Texas MD Anderson Cancer Center in Houston, Lori Williams, PhD, RN, MSN, BSN, BA, is conducting research using another form of triage for cancer outpatients: automated telephone surveys that ask 25 questions about symptoms. A similar system is in place at the University of Utah, Brown said.A computer-generated voice asks the questions, patients type their answers into their telephone key pads, and the system sends results to oncology nurses, who save time by calling only those who are experiencing troublesome symptoms. Meanwhile, other leading cancer centers, including Duke University, use assessment systems that patients access online. In either case, the regularity of the assessments has the added benefit of allowing nurses to determine whether their interventions are succeeding, said Williams, an assistant professor in MD Anderson’s Department of Symptom Research and a member of the ONS Board of Directors.
MD Anderson’s automated system is particularly useful when patients aren’t assertive enough to call about their symptoms, or when they become too depressed to reach out for help, Williams said. Patients seem to be more honest when responding to the automated survey than when speaking with a “real person,” Williams added. And often, she said, the surveys bring to light symptoms that patients didn’t realize were connected with their treatments, like dry mouth and trouble sleeping.
Sometimes, the results surprise physicians, too. “We did one survey with our surgery patients who’d had thoracotomies,” Williams said. “They did well in the hospital, and surgeons said they’d be fine at home. They came back three weeks later and they were perfectly fine. We did our study and found out that when they got home and had less monitoring, they had high pain levels and many were not calling their doctors because they thought they should expect it. It changed the practices of our surgeons.”
An Idea Grounded in Science
A pilot study1 conducted by Cancer Care Associates in Michigan also found that there is value in using an automated voice response system plus nursing intervention to monitor adherence to oral chemotherapy agents. According to a study abstract, “an association between symptom management and adherence was found.”
In the clinic, I do primarily telephone triage with patients, managing their symptoms over the phone. Outside the clinic, I do some nurse education activities.
I’ve also co-edited two books published through the Oncology Nursing Society. One of them, Telephone Triage for Oncology Nurses, goes through different methods. There’s not one that’s right or wrong; it’s what works best for the practice setting they’re in. The book takes every symptom that patients would call in for and gives a quick and easy guide for what to ask. The protocols are written by nurses all over the country. The book also has a whole chapter on legal issues, because there are a lot of legal implications for giving medical advice over the phone.
Beyond asking about symptoms and suggesting interventions, are there any tactics nurses should incorporate into phone conversations with patients?
Don’t conclude that you know what’s concerning the patient. Let the patient completely describe the problem, ask him questions, and listen. It’s normal for nurses to think they know what’s going on, but you could be wrong a lot of times
Before hanging up, ask, “Can you repeat back to me what we’ve just agreed upon?” That way, you know they understand. A second question before hanging up should be, “Is there anything that’s going to keep you from doing what we’ve just decided?” Sometimes they’ll say, “I can’t afford to get the medicine,” and I’ll say, “Come get samples.”
What is the biggest obstacle to providing remote symptom assessment and management to patients being treated for cancer?
The biggest obstacle is that telephone triage is not reimbursed, even though most offices require one dedicated full-time person, or a full-time equivalent. If a nurse is giving chemo, payers reimburse for the drug and the time that the patient is in the chair. But there’s no reimbursement for education or time on the phone with patients.
Have you ever run into unexpected situations while consulting with patients over the phone?
Absolutely. Patients with cancer have all kinds of problems besides their cancer. One lady called me and said, “I just got my chemo. I’m sick and having people come help take care of me and my family, and my electricity is being cut off. Is there anything you can do to help?” I called Dayton Power & Light and explained the situation, and they said they had a program that could help. I filled out a form, faxed it back, and they kept her power on. That’s one reason I love doing the phones: You can make such a big difference for people.
I’ve also asked patients to come in when their symptoms sounded suspicious. Once, someone with an implantable infusion port called about swelling in her neck. Normally, we’d think she might have a superior vena cava syndrome, but I said, “Just come on in and let’s look.” It turned out she had this big blood clot right where her port was. You have to ask the right questions, and sometimes you just have to bring them in.
In addition, a 2002 study2 conducted by experts at the University of Utah, which considered the feasibility of using a telephone-based computerized system to monitor symptoms after chemotherapy, found that “The telephone-linked care system has the potential to improve dramatically symptom monitoring and symptom care of patients with cancer at home.”
Such systems work most effectively, Williams added, when they rely on scientifically validated assessment tools, such as the MD Anderson Symptom Inventory. There are other such tools available for quick assessment of oncology symptoms, including the Memorial Symptom Assessment Scale (which is used at Sloan-Kettering), the Functional Assessment of Chronic Illness Therapy (FACIT), and the newer Patient Reported Outcomes Measurement Information System (PROMIS), which is being tested in clinical settings.
Yet Williams believes that few oncology practices rely on standardized questions, let alone validated instruments—and she views that as a mistake.
Because they’ve been subject to research, Williams said, validated assessment tools ask questions that are free from clinician bias about what is important. And, she said, they’re easy for patients to understand and for healthcare providers to score.
A Worthwhile Endeavor
In the big picture, the remote management of cancer treatment side effects makes sense for a couple of reasons, Williams said.
“Controlling the symptoms of patients with cancer has always been important to oncology nurses, but over the last 10 years, physicians have started to look at it more,” she said. “Cancer is becoming more of a chronic illness. We’re better now, if not at curing it, then at least at controlling it for long periods, so it’s much more important if patients are living with symptoms that are fairly debilitating.”
The practice may also soon be helpful from a financial point of view.
“The FDA is more interested, in general, in patients reporting outcomes from treatments,” Williams said. “If we get into pay-for-performance systems, controlling symptoms may come out as something that would be considered a quality indicator that you might be paid on, and these systems let you collect data for that, too.”