Fatigue might be the symptom that is assessed the least, but a recent Clinical Care article posted by the Center for the Advancement of Palliative Care (CAPC) writes that fatigue is the most common symptom of serious illness, affecting “more than 80 percent of patients-regardless of their diagnosis.” The article also asserts that fatigue is “one of the most underreported and undertreated” symptoms.
Unless a person has experienced illness related fatigue, it is difficult to understand how debilitating fatigue can be for patients. Fatigue is not just “really tired”, it is a qualitatively different experience that can be associated with a feeling of weakness and deep heaviness. Empathy for how the patient experiences fatigue matters.
At times patients experience guilt for their fatigue, believing they should push themselves to do more but at the same time feeling unable. Fatigue limits all experiences and can especially drag down any desire to socialize and interact with others, which can seem like a potential drain. Patients may feel frustrated as fatigue with missing out on activities or angry if the fatigue is difficult to understand.
There are many potential causes of fatigue, including direct effects of the illness or from treatments, including medications, deconditioning, depression and anxiety, sleep disturbances and uncontrolled or poorly controlled pain. Poor nutrition, low blood counts, and too much going on in the environment can contribute to fatigue.
Interventions naturally need to be responsive to particular causes, but there are also some practices that may help no matter what the cause. The CAPC article discusses education, exercise, cognitive-behavioral therapy, and integrative approaches like acupuncture. Motivational interviewing may be helpful for patients who feel too exhausted or unwell to stick with a fatigue management plan.
There are assessment tools to unpack fatigue and there are also interviewing questions that may be helpful. The Marie Curie: Care and Support for Terminal Illness website has an article that suggests that conversation about fatigue can be helpful as “Patients and those around them often assume that nothing can be done to help fatigue. They might not tell healthcare professionals unless they’re specifically asked." Ask about how fatigue is impacting activities and relationships. Patients and family might be asked to notice what makes fatigue better or worse. Scaling questions might be helpful, a patient is asked to give a number from 1-10, with 10 being the most energy and one being least. For example, the patient gives their fatigue a three. The question is then, “what do you think it would take to get your energy from a three to a four?"
Fatigue can be stubborn and pervasive. One approach is to help the patient make the best of what energy they do have, by plans on how to use and conserve energy. The Spoon Theory is a metaphor by Christine Miserandino that helped her explain her limited energy to a friend and has been widely adopted by people living with chronic illnesses.
The Spoon Theory addresses a key difficulty with fatigue, helping others understand so that the patient does not feel vulnerable to judgement. Fatigue is not a moral issue, or any sort of failure. It is also invisible so others can misinterpret unless educated.
Energy can also be imagined using a metaphor, banking deposits and withdrawals. This metaphor’s strength is the integration of energy deposits, recognizing who or what helps replenish energy.
Here are some energy conservation tips:
• Notice (and ask others to help notice) what time of day energy is lowest and when it is best.
• Plan the day to do the highest priority activities first, at the time of day when energy is best.
• Rest in between activities
• Sit down, when possible, for tasks, like sitting to prep a meal.
• An occupational therapist may have ideas for equipment or ways of completing a task that will make some tasks easier.
• Be around the people who deposit rather than withdraw energy when possible.
When fatigue limits energy, there are tradeoffs. A parent may decline activities with friends to save energy for their children. Healthcare appointments and treatments may be particularly draining, and those days may have limited energy for other activities.
The hardest challenge for some people is accepting help from others. Most of us prefer to be the helper rather than the helped. Next time, we will tackle the psychological dynamics of caregiving within intimate relationships, and the saga of the helper and the helped.
Pat Justis, Washington State Department of Health