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Patient Communication and Strategies for Managing Fatigue

Patient Communication and Strategies for Managing Fatigue

ABSTRACT: Fatigue is common in patients with cancer. Fatigue is very distressing to patients, who often view it as an indication that their disease is progressing or that treatment is ineffective. Patients with a cancer diagnosis frequently have psychological distress. Communication and information help patients cope with the diagnosis of cancer and with the management of side effects. Presenting clear, concise, and well-timed communication to patients regarding fatigue management is an important role for health care providers. This article gives an overview of cancer-related fatigue, the various attitudes that prevail among cancer patients seeking information, and interventions patients can use to help manage their fatigue. Armed with this knowledge, oncology nurses and physicians can better meet the need to provide appropriate information about fatigue to patients and families, and at most appropriate points in the illness. [ONCOLOGY 16(Suppl 10):141-145, 2002]

Fatigue is a common
complaint
of patients with cancer. It is estimated to occur in 70% to 90% of cancer patients, and in 80% to 100% of those
undergoing chemotherapy.[1] For radiation therapy, fatigue has been reported by
40% to 93% of patients depending on the mode of treatment and radiation site.[2]
Fatigue that occurs with biotherapy is related to dose and schedule and can be
severe enough to cause a dose delay.[3]

Fatigue is defined in the Medical Subject Heading Index as
"a state of weariness following a period of exertion, mental or physical,
characterized by a decreased capacity for work and reduced efficiency to respond
to stimuli." Fatigue is so nonspecific that it is difficult to state if it
is a separate symptom or a melange of many other symptoms. Fatigue is used in
the medical literature when referring to pathologic fatigue, and this has led to
the general acceptance of this term for diagnostic purposes.[4] Illness-related
fatigue differs from the fatigue that healthy people experience following
periods of exertion or insufficient sleep.

Cancer-related fatigue persists despite rest and sleep, and
treatment often compounds it. Prior to the mid-1980s, cancer-related fatigue
received little attention. In the 1990s, when quality-of-life indicators were
included as end points in clinical trials those indicators highlighted the
negative impact of fatigue.

Communication and information help patients and their
families cope with the diagnosis of cancer and the management of side effects.
The fear that is invoked with the diagnosis of cancer can be diminished with
information. The challenge for those who care for patients with cancer is
providing individualized and timely information.[5] We must recognize the
overwhelming impact fatigue has on patients’ functional abilities. This
article will address the profound clinical difficulties associated with fatigue,
discuss how and when to best communicate with patients, and present important
interventions that patients can use to manage their fatigue.

Overview of Fatigue

Fatigue due to cancer and cancer treatment can negatively
impact patients’ ability to function. Numerous studies have shown that raising
hemoglobin improves functional status and patients’ quality of life. Quality
of life is improved in correlation with increased hemoglobin and independent of
tumor response. To draw these conclusions, Glaspy, Demetri, and Gabrilove
studied more than 7,000 patients.[6-8] The three studies all concluded that
patients receiving erythropoietin (epoetin-alfa [Epogen, Procrit]) experienced
improvement in their functional status and quality of life. These study results
should motivate the health care provider to assess and aggressively treat anemia
in cancer patients.

Symptom management in cancer care has greatly improved in the
last 15 years. The ability to better control nausea and vomiting has changed the
profile of patients’ symptoms during the course of their treatment. Fatigue is
now one of the most common symptoms of cancer patients.[9] Vogelzang et al
reported that fatigue negatively affected many aspects of patients’ lives,
such as the ability to work (61%), physical well-being (60%), ability to enjoy
life in the moment (57%), intimacy with their partner (44%), ability to take
care of their family (42%), and relationships with friends and family (38%).[10]

Vogelzang studied the different perceptions of the causes of
fatigue from the patient’s, the oncologist’s, and the home caregiver’s
view points. Patients felt the treatment was the major cause of their fatigue
(54%) vs illness (13%) and both (13%). Oncologists ranked illness as the major
cause of the patient’s fatigue (54%), treatment as the secondary cause (41%),
and both as the last one (13%). Caregivers ranked treatment as the major cause
of fatigue (64%), as compared with illness (14%), or both (14%). The obvious
conclusion from this study is that the patient and the caregiver perceive
fatigue differently than the physician.[10]

Vogelzang also asked patients and oncologists which was more
important to reduce or relieve: pain or fatigue. The patients chose reduction of
fatigue (42%) as more important than pain relief (34%). The oncologists ranked
pain as the symptom that patients most wanted relieved or reduced (94%) vs
fatigue (5%). This study should strengthen the argument for aggressively
assessing and treating patients with the complaint of fatigue. Since reducing
fatigue is extremely important to patients, health care providers need to
recognize fatigue and intervene promptly. A baseline assessment is essential for
determining appropriate treatment and the patient’s response to treatment.

Fatigue can quickly lead patients down the path of decreased
function, reduced activity, inability to care for self or others, inability to
work (which has socioeconomic impacts), and cognitive deficiencies that cause
reduced self-esteem and compromised relationships that can quickly lead to
depression and further withdrawal.

Communicating With
Patients About Fatigue

When teaching patients about symptom management, caregivers
should remember that adults rapidly forget what they learn—especially in time
of stress (Table 1). Cancer patients are motivated to learn, but may be
overwhelmed by emotions. Patients will likely forget 90% of what they have been
taught by the end of the week. Thus, health care providers should strive to make
the 10% that patients retain a memorable "take home" message.

Adult learners are motivated to learn when learning is
task-oriented, according to Malcolm Knowles’ Adult Learning Theory.[11]
Knowles emphasizes that adults are self-directed and expect to have
responsibility for decisions. Adult programs must accommodate this fundamental
aspect of learning. Adults need to be involved in the planning and evaluation of
their instruction: experience (including mistakes) provides the basis for
learning, and adult learning is problem-centered rather than content-rich. In
educating adults, their wide variety of backgrounds and cultures must be taken
into account (Table 2).

Amount and Type of
Patient Information

How much information does a cancer patient want or need while
undergoing treatment? Does the amount and type of information change while a
patient is undergoing treatment and throughout the disease trajectory?

A small, insightful study was conducted at an outpatient
clinic in London. Leydon et al looked at cancer patients’ information needs
and behaviors. Three common attitudes of these patients appeared to affect their
desire for information: faith, hope, and charity. These attitudes affected
information needs and information-seeking behaviors differently at various times
in the course of the patient’s illness.[12] This point is important to
consider when informing and educating patients about their disease and
treatment.

Faith—The
first common attitude described by Leydon and colleagues was faith, specifically
the patients’ faith in their doctors. Faith reflected the belief that
"the doctor knows best" because of the complexity and uncertainty of
cancer treatment. Their faith in the doctors’ ability to prescribe modern and
impressive treatments often kept patients from seeking further information.[12]

At this symposium, M.L., a breast cancer survivor, shared her
treatment experiences with the audience. M.L. is a 44-year-old woman with stage
II infiltrating ductal carcinoma. She holds a stressful position and worked
during her entire treatment course even though she had mild to moderate anemia.
M.L. was extremely fatigued and unable to function at a normal level of
activity, but her anemia was not severe enough for her to receive erythropoietic
therapy under her insurance coverage guidelines. M.L. observed that faith in a
doctor could deter a patient from seeking more information. She said, "I
thought too much information was going to cloud my judgment, so I went by faith
that what he (the doctor) was doing was going to make me well."

Hope—The
second common attitude described by Leydon and colleagues was hope. The authors
concluded that all patients in the survey felt that hope was indispensable for
survival. Some patients were driven by hope to seek alternative therapy. For
other patients, an attitude of hope meant limiting the information search or the
avoidance of new information. Patients have a tendency to avoid negative
information, especially around family members, because they feel they need to
always have a brave face. Patients felt that additional or contradictory
information caused great anxiety and confused treatment decisions; therefore,
they often avoid asking questions.[12]

Herth concluded that helping an ill person to maintain hope
and avoid hopelessness is a major task for the professional nurse.[13] Nurses’
behaviors can play a major role in inspiring and strengthening hope because
nurses are around the patient at time of diagnosis, during treatment, and at the
end of life. Nowotny, from his research, claimed that a hopeful person has plans
for the future, shows confidence about the outcomes of a situation, sees the
light at the end of the tunnel, and knows that they can accomplish a task.[14]

It is important to maintain hope for patients when discussing
their disease and their treatment. However, research has shown that when
patients reach their terminal stage of disease, 95% of the time they want the
physician to be completely honest, even if there is little hope.[15] Experts
recommend asking patients how much they want to know about their illness before
discussing it with them. This question gives patients permission to decline
stressful information, and it allows full disclosure for those who desire it.

Charity—The
third common attitude described by Leydon was charity. All of the patients in
the survey felt charity. Patients felt that access to those who provide the
information was a limited resource and to be shared by all. All patients in the
study reported having been influenced by thoughts of others whom they perceived
to be worse off than themselves. Patients stated that information obtained by
family and friends was easier to accept because they were not using a limited
resource. Information was easier to accept when verbally offered by health care
providers rather than when asked for by patients.[12]

Not surprisingly, the Leydon study also noted gender
differences. Women patients often valued their own and others’ experience and
knowledge, especially that of other cancer patients. This personal experience
was often invaluable for women when making treatment decisions. In contrast, men
avoided discussing the experiences of others, and they did not address issues of
disease recurrence and death. Men on this study preferred "life as
normal" in which state they claimed that cancer could be forgotten.[12]

Leydon’s study is a small sample, but an intriguing study.
It gives insights into the reasons, at all stages of their illness, why patients
do not seek information. What can health care providers conclude? Not all
patients want extensive information about their conditions and treatment. Some
patients fear negative information, while others want to avoid conflicting
information.

Patient M.L. shared with the audience, "I thought too
much information was going to cloud my judgment. So I went by the faith that
what the doctor was going to do for me was going to make me well. Many times I
did not ask questions because I was afraid of what the answer was going to be.
There was a lot of fear in me. I could ask questions of a breast cancer
survivor, who was a nurse at UCLA. It was nice to have support around just in
case I couldn’t ask the question that I didn’t want the answer to. I could
often get the answer through e-mail—it was a lot easier to read then hear—strangely
enough."

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