Why is my loved one so tired since we started hospice?
By Lorraine Thayer, CRNP
One of the questions I hear frequently as a nurse practitioner working in hospice is: “Why is my loved one sleeping so much since hospice came on board?”
Families question the pain medications or the hospice team’s suggestion that a patient be permitted to nap as they choose. Patients and families frequently focus on the symptom rather than its underlying cause. Many believe that a person’s strength is under his or her control, and feel that the patient is “giving up,” “not fighting,” or “not eating enough.” This is not the case.
Fatigue is a complex symptom. There can be multiple causes for fatigue towards the end of a patient’s life, such as:
- progressive physical deconditioning (weakness),
- anemia (breathlessness with activity),
- psychological distress from loss of independence (frustration),
- social distress from growing isolation, and
- depression (sadness with apathy and helplessness)
are all causes of terminal fatigue. Other potential sources might include medications. Concurrent symptoms, such as mild anxiety, breathlessness or pain and possible undiagnosed metabolic or endocrine disorders such as hypothyroidism or cancer, are all potential contributors to fatigue at the end of life. Fatigue can worsen with activity or episodes of pain, and abates somewhat during time spent with family or friends.
Fatigue, like pain, is viewed as a self-perceived state. Meaning it is what the patient says it is and it is relieved when the patient says it is relieved. Patients at the end of their lives may describe fatigue as feeling tired, weak, exhausted, lazy, weary, worn-out, heavy, and slow. “I have no energy or any get-up-and-go,” some say. This type of fatigue is typically disproportionate to the activity. A patient at the end of their life may feel exhausted after being assisted with personal care. They may sleep for several hours. After awakening they state only mild or even no relief from their fatigue. This generalized fatigue is what causes them to sleep more towards the end of their life.
Can anything be done about this fatigue?
A thorough assessment examining patterns of fatigue, activity, sleep, and interpersonal relationships is essential in determining appropriate interventions. On admission and on an ongoing basis a fatigue scale, similar to a pain scale, will be completed. The hospice team will help determine the impact of fatigue on the patient’s and family’s quality of life. There is sometimes a disconnect between the patient’s desire to sleep and the family’s desire to have their loved ones present with them in an awake coherent state. Interventions will be determined by the patients desire to accept treatment. These might include educating patients and families about the disease process and reviewing their goals of care. Energy conservation or rest periods, along with good sleeping habits, enable patients to “bank” energy for more active times. Patients can also conserve energy by using devices such as walkers, wheelchairs and bedside commodes.
Although fatigue can interfere with quality of life in patients with terminal illnesses, it also may serve a protective function and help patients cope with their perception of suffering. For this reason, the hospice team will advocate for the patients to decide how active they prefer to be or which activities they can tolerate. At the same time they will assist the family to understand and accept their loved one’s choice as they continue on their journey.