Despite decades of research, experts agree that, for many patients with advanced cancer, clinicians may still fail to accurately assess-or sufficiently manage-the symptoms associated with a cancer diagnosis and its treatment.
Susan C. McMillan, PhD, ARNP, FAAN
Despite decades of research, experts agree that, for many patients with advanced cancer, clinicians may still fail to accurately assess—or sufficiently manage—the symptoms associated with a cancer diagnosis and its treatment.
For this situation to improve, oncology nurses should take the lead, urged Susan C. McMillan, PhD, ARNP, FAAN, during her presentation at the 2014 ONS Annual Congress where she received the organization’s Distinguished Researcher Award.
McMillan began her career in oncology nursing in the 1970s, at a time that when people thought about cancer, they thought about death. She became deeply interested in helping patients with cancer to manage their pain and embarked on a four decade—long career investigating questions surrounding symptom management.
As the World Health Organization and others have noted, most of the resources spent in caring for cancer patients are directed to curative care; yet, there is growing awareness that a focus on palliative care should really begin at diagnosis, said McMillan.
In addition to both the occurrence and intensity of symptoms associated with cancer and its treatment, the level of distress patients have about their symptoms—what the symptoms mean to them—is also important, especially because many patients worry that if they complain about their symptoms to their providers, it may disrupt their cancer treatment.
“What I’ve been doing in my career is trying to make symptoms and quality of life better for cancer patients,” said McMillan, the Lyall and Beatrice Thompson Professor of Oncology Quality of Life Nursing at the University of South Florida (USF) in Tampa. McMillan said that the philosophy at the graduate oncology program she directs at USF recognizes that, “What oncology nurses do is palliative care. What oncology nurses focus on is quality of life.”
One of the first questions that McMillan and colleagues at the Moffitt Cancer Center explored early on was whether accurate assessment of pain might impact patient outcomes, and they found that in a relatively small sample of patients with cancer with whom the Center’s comprehensive pain assessment tool had been used at the time, these patients experienced significantly less pain intensity over a 24-hour period.
“This made sense to me, because I knew that nurses know how to manage pain,” although sometimes they may not understand it, she said, because they don’t ask the right questions.
McMillan went on to conduct further research exploring this connection between accurate assessment and pain management in patients with cancer—not just for those receiving treatment in a cancer hospital or hospice, but in other settings as well. Among this research was a study of nurse pain management in cancer patients in an ICU and a surgical unit. In this study, patients’ pain intensity was measured three times over 24 hours, and patient charts were reviewed to determine how much analgesia was provided.1
The researchers found that patients in both units continued to have pain even with pain management interventions. Intensive care nurses administered an average of 30% of the maximum pain relief dose ordered, and in the surgical unit, nurses administered 36.8% of the maximum ordered dose. Eighteen percent of patients who reported moderate pain received no analgesia over the 24-hour evaluation period, McMillan noted. In addition, 70% of the patients in this study reported opioid-related constipation.
“We found that many patients had unrelieved daily pain,” said McMillan. “I often hear nurses complain: ‘physicians won’t give us what we need.’ Well, that means that there is a good nurse advocating for the patient, but these nurses obviously were not advocating for their patients.The doctor had ordered it, it was there, but the nurses were only giving about a third of it.” “Is that what we want? I don’t think so.” Our goal, as nurses, stressed McMillan, is that the patient’s pain is completely relieved. “If the patient says, ‘No, I don’t like the side effects or gives some other reason,’ the nurse should back off, but complete pain relief should be our goal.”
Pain is not the only symptom associated with cancer and its treatment, nor does it always rank highest on scales that measure frequency, severity, and distress, noted McMillan. She noted that in fact fatigue often ranks highest on these dimensions. In a study of 275 hospice patients with cancer, fatigue, pain, dry mouth, drowsiness, loss of appetite, and shortness of breath were reported most frequently.2 McMillan added that dry mouth routinely appears in the top five or six symptoms every time she looks at data from cancer patients, and these are not all head and neck cancer patients.
Fatigue, pain, shortness of breath, constipation, and loss of appetite (especially with well-meaning family members “pushing food at them all the time,” said McMillan) also caused distress among patients in this study.
Given that these symptom outcomes are not ideal, why is this happening?
McMillan and colleagues decided to look at the impact of what nurses know and believe about pain may have on how they help patients to manage it. This research involved a self-selected sample of 85 nurses, who, though not all specializing in oncology, were all working in inpatient units where cancer patients were receiving care at two VA hospitals in southwest Florida. Data were collected on the nurses’ knowledge of pain management principles and attitudes toward managing patients experiencing pain.3
The researchers found that participating nurses knew least about the physiology of pain, the pharmacology of analgesics, non-pharmacologic methods of pain relief, and treatment goals. The mean score on the knowledge scale was 64%, and nurses knew most about the need to ask patients about their pain. With respect to attitudes, 84% of nurses disagreed that around-the-clock dosing is better, and 82% agreed that around-the-clock analgesics increase the risk for sedation and respiratory depression.
McMillan noted that around-the-clock dosing actually decreases the risk, because patients are receiving less opiate medication and reminded her audience that, “our goal is 100% relief. We want them to be completely relieved of their pain.”
Notably, 51% agreed that the doctor or nurse pain assessment is more valid than that of the patient. McMillan said that the clinician assessment can be especially unreliable for chronic pain, because the patient will typically not have the symptoms of acute pain (eg, rise in blood pressure, turning pale, and/or sweating). Forty-one percent of nurse respondents indicated that concerns over addiction, dependence, and respiratory depression would allow them to reduce the dose of pain medication, and 46% would not increase pain medication in a patient grimacing in pain if vital signs were stable. Moreover, McMillan said, some nurses would lower doses in older patients (>72 years) because of their age.
“They [nurses] didn’t know enough, they had negative attitudes, and the pain management was poor.” This study took place almost 15 years ago, McMillan acknowledged, so one of her graduate students replicated it for her master’s thesis, which has been accepted for publication this year in the Journal of the Advanced Practitioner in Oncology4. The range of scores on the knowledge scale was 39% to 81% (mean = 62%), which was two points below what it was 10 years earlier, McMillan observed. “Only 17% of nurses had scores higher than 70%.”
Attitudes from the more recent study were actually worse, said McMillan, noting that 95% of nurses in this survey disagreed that around-the-clock dosing was better. “It’s very disheartening that we’re still seeing this kind of data.”
McMillan presented research at ONS on a new tool she designed to assess the intensity, frequency, distress, and interference with quality of life of 35 common cancer symptoms (Box).5 The tool employs a 0-10 scale to make interpretation of findings more straightforward, McMillan explained, and the questionnaire is computer-based so that patients can easily rate multiple symptoms across the four dimensions.
The value of this tool is that a nurse can look at the printout and decide which are the priority symptoms for each individual patient and then use the findings to begin the discussion—and, importantly, let the patient decide which symptom is most distressing to them. With the information captured with the CSS, the practitioner can begin by saying, “I see you have this list of symptoms, and we’re going to deal with them one at a time. What would you like to start with?”
This study evaluated a Cancer Symptom Scale (CSS) in 234 adult outpatients who were being treated for cancer or cancer symptoms. Participants were asked to rate 35 symptoms on a 0-10 scale. The researchers concluded that the tool performed well on both validity and reliability in assessing multiple dimensions of symptoms.5 Data were collected from patients (average age = 60 years) an average of 28 months after diagnosis.
Diagnoses included leukemia (15%), breast cancer (12%), lymphoma (11%), and colorectal cancer (9.4%). CSS findings included the following:
In this study, approximately 25% of patients reported problems with sex, sweats, and diarrhea, McMillan pointed out. “These are highly sensitive symptoms when they happen.”
Among the symptoms causing most distress was “feeling irritable.” McMillan was not surprised by this finding, she said, because patients don’t want to be perceived as being difficult by their family and friends. For the study participants, diarrhea interfered most with quality of life, in part, explained McMillan, because the fear of having it might prevent patients from going out, or if they do go out, they feel the stress of needing to know that a restroom is nearby. “I really encourage nurses to use a multisymptom type of assessment, so that we don’t only ask patients about pain.”
Who should be the primary source for symptom assessment? Of all those who interface with the patient—eg, the oncologist, the nurse—it’s the caregivers, usually family members and most often spouses, who are with patients 24 hours a day, listening to the patient, and giving the medication, said McMillan. Another research question, then, is whether caregivers may be best positioned to provide information about a patient’s quality of life.
Research has shown, however, that caregiver assessments are not reliable. In a study of hospice patients with advanced cancer and their caregivers designed to evaluate consistency in symptom reporting, researchers found that caregivers significantly overrated symptom intensity for pain, dyspnea, and constipation, suggesting a role for healthcare practitioners in training family caregivers to conduct more systematic assessments, rather than assuming that they know the patient’s symptoms.6
For the most accurate information about symptoms, McMillan stressed, “The patient remains the gold standard.”
McMillan is leading a multidisciplinary team of researchers and experts in the study of a self-care approach to managing cancer symptoms through a $2.1 million grant award from the Patient-Centered Outcomes Research Institute. The research will evaluate the American Cancer Society’s COPE intervention (Creativity, Optimism, Planning, Expert information), as a tool to educate cancer patients about how they can manage their high-priority symptoms. She has previously studied the intervention in four patient populations, as well as in family caregivers of hospice patients where the intervention significantly decreased symptom distress among patients whose caregivers were trained to better manage patients’ symptoms.7
She expanded briefly on the COPE intervention’s four dimensions from the perspective of the oncology nurse. Creativity, she explained, means seeing problems differently and developing new strategies for problem-solving targeted to the specific situation. To encourage optimism, nurses need to help patients to understand that symptoms do not have to be “crosses that they must bear,” but rather, “We want them to be optimistic and believe that it can be fixed.” Some examples of planning, she said, are being prepared for an episode of breakthrough pain before it happens or helping the patient to be able to attend an important family occasion.
Finally, the COPE resource offers specific information from experts that can be shared with patients and caregivers. They should also be reminded that their staff nurses are experts, too, said McMillan.
McMillan concluded by raising the question in the title of her talk, “Symptom Management: Are We There Yet?” Audience members concurred that the answer remains “No,” but there is also consensus on who can make a big difference in improving the situation. As McMillan noted: oncology nurses are uniquely positioned to take the lead in their units and help other nurses in making sure that patients’ pain and other symptoms are addressed.