By Daniel Johnson MD, University of Colorado Health Sciences Center, Denver, CO.
Ms. J is a 67y/o Holocaust survivor with a history of Parkinson's disease, diabetes, iron deficiency anemia and depression. Although Ms. J has lived independently with home hospice for 8 weeks, she now requires inpatient hospice services due to progressive functional losses in the context of limited home support. During her assessment at the time of transfer you inquire about the most difficult aspect of her illness: she replies "I'm just so tired all the time".
Fatigue or asthenia (Asthenos from Greek: the absence or loss of strength) has been identified as one of the most prevalent and distressing symptoms of seriously or terminally ill patients.(1-2) The prevalence of cancer-related fatigue has been reported to be as high as 99%.(3) In a 1999 PoPCRN study, hospice providers identified lack of energy as the most prevalent (83%) and severe (when present, 46%) symptom in a sample of 348 patients.(4)
One of the barriers to treating fatigue at the end of life may be patients', families' and clinicians' perception of fatigue as an unavoidable, untreatable symptom. This perception likely reflects both the ubiquitous nature of fatigue and the lack of uniformly effective treatments. In a 1997 study of cancer patients and their oncologists, patients reported that fatigue adversely affected their daily lives more than pain (61% vs. 19%), though oncologists believed that pain adversely affected their patients to a greater degree than fatigue (61% vs. 37%). Most oncologists (80%) believed that fatigue was overlooked or undertreated, and most patients (74%) considered fatigue a symptom to be endured. However, patients and caregivers perceived treatments for fatigue, when used, to be helpful.(5) In a recent PoPCRN study, 382/ 867 (44%) hospice nurses surveyed chose either fatigue and/or weakness as one of their five most difficult symptoms to manage. Only 34 (9%) of these nurses reported success often or almost always in treating the distress associated with fatigue or weakness. Nurses identified multiple barriers to treating fatigue and weakness including the perception that these symptoms were a "tradeoff" that must be accepted as a consequence of other treatments (63%) and that other, more distressing symptoms limited their ability to effectively manage these symptoms (54%) (Johnson DC et al, manuscript in preparation). Collectively, these data suggest patients, families and their health care providers may frequently accept fatigue despite its enormous negative impact on quality of life. Challenging this paradigm may be an important step if we are to develop and implement more effective fatigue management approaches.
When assessing fatigue, there appears to be a natural tendency for clinicians to seek the causes of fatigue before seeking the meaning of fatigue from the perspective of the patient (or family). While understanding the likely underlying cause(s) of fatigue provides the framework to target interventions, clinicians must first construct a foundation by understanding the patient's meaning of fatigue and his/ her expectations for treatment:
1. What does Ms. J mean by "I'm just so tired"?
Understanding the patient's language of fatigue is a crucial first step in the fatigue assessment. Like pain, fatigue is recognized as a subjective experience based on patient self-report.(1, 6) While fatigue intensity levels can be monitored with simple clinical tools (i.e. intensity from 0-10), fatigue is better characterized as a multidimensional symptom affecting physical, psychological, social and spiritual domains. For example, a "fatigue" level of 7 for one patient may mean physical weakness with loss of function, while for another patient it may mean mental sluggishness and loss of social contact. While current multidimensional research tools remain too cumbersome for use in daily practice, clinical assessment should aim to elucidate a patient's description or "language" of fatigue. Further exploration of Ms. J's fatigue revealed that her "tiredness" included physical weakness without sleepiness, increasing episodes of breathlessness with activity, frustration with her inability to care for herself, sadness over missed visits with her grandchildren and a growing sense of apathy and helplessness.
2. What are Ms. J's expectations?
Understanding patient's expectations is a next important step in assessing fatigue. While for some patients fatigue may be minimally distressful and "accepted", most patients welcome active care interventions designed to reduce fatigue. In this case, Ms. J clearly identified fatigue as the symptom that most disrupted her quality of life and explicitly stated her desire for relief. She added that she did not want any further testing: "I'm through with all that."
3. What are the potential sources of (or contributing factors to) Ms. J's fatigue?
Fatigue is a complex symptom with multiple etiologies. As few patients have a single, isolated cause, a thorough assessment of the likely sources of (or contributing factors to) fatigue is an important next step. In addition to understanding the details of a patient's description of fatigue, a thorough assessment should gather information on fatigue intensity, onset, duration, exacerbating or relieving factors, and concurrent symptoms. A review of the patient's medical history with special attention to medications and a brief physical exam often provides important clues to likely causes. Based on Ms. J's history and her rich description of her "tiredness", likely sources might include her Parkinson's disease and progressive physical deconditioning (weakness), anemia (breathlessness with activity), psychological distress from her loss of independence (frustration), social distress from growing isolation (missed visits), and depression (sadness w/ apathy and helplessness). She notes that her fatigue (breathlessness and exhaustion) worsens with activity or episodes of pain, and abates somewhat during time spent with family and grandchildren (she describes "rallying"). Other potential sources might include her medications (opioids, zoloft and sinemet), concurrent symptoms (mild anxiety, breathlessness and pain (2/10)) and possible undiagnosed metabolic or endocrine disorders such as hypothyroidism or cancer.
This Summer, Part 2 of this article ("Managing Fatigue at the End of Life (Part 2): Making a Difference") will use the information from Steps 1-3 to design a multidisciplinary care plan to reduce Ms. J's fatigue, and review pharmacologic and non-pharmacologic approaches fatigue management.
Dr. Johnson will co-lead (w/ Jane McCabe MSN) an interactive workshop on fatigue management "Too Tired to Tire Now: Managing Fatigue at the End of Life" at the NHPCO 4th Joint Clinical Conference in Denver on 4/10/2003. All are welcome to come and contribute!
*Dr. Johnson receives grant support as a Faculty Scholar through the Project on Death in America.
1. Ferrell BR et al. Bone tired: the experience of fatigue and its impact on quality of life. Onc Nurs For. 1996; 23(10):1539-47.