‘Distress' in the context of cancer is defined as, “a multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms and its treatment.” Distress extends along the continuum, ranging from normal feelings of sadness or fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crises.
In keeping with this definition, NCCN has developed the Distress Thermometer and Problem List (Figure 1), a one-item questionnaire that can be used to rapidly screen for distress. Patients are asked to first circle the number from 0–10 that best describes how much distress they have been experiencing in the past week, including today, and then to check if any of the problems listed has been a problem for them in the past week, including today. The efficacy of the Distress Thermometer has been established in prior studies reporting it to be a good screening tool. Scores of > 4 indicate moderate to severe distress requiring a more in-depth evaluation.
The next step for patients who score > 4 on the Distress Thermometer is for the nurse or other healthcare team member to conduct an in-depth follow-up interview to determine potential diagnoses, referrals, or treatments (see Figure 2). Distress at all stages of disease should be recognized, monitored, documented, and treated promptly.
Without any warning, Mr. Davenport, a 67-year-old married Caucasian, developed flu-like symptoms and a nagging cough. His wife encouraged him to go to his physician, who sent him for a chest X ray. Mr. Davenport was told that he had a mass on the upper lobe of his lung that was pushing on the vessel of his heart, and that the mass was presumed to be cancerous. The doctors conveyed that surgery was critical to remove the mass and relieve the pressure. Within 2 weeks, Mr. Davenport was scheduled for a pneumonectomy. His surgery was uneventful. He was discharged with instructions to return to his surgeon in 1 week and was given a referral to a medical oncologist.
Once home, Mr. Davenport tried to quickly assume all his former roles, including helping his wife, who suffered from multiple chronic illnesses. He found that any exertion aggravated his pain to the point that it was intolerable. The surgeon had sent him home on Percocet (oxycodone and acetaminophen), but the drug did not provide adequate relief. He refused to contact his doctor about the pain stating, “it just isn't worth it.”
His wife called the surgeon's office and was told to increase the dose to two pills as needed. Within two days, Mr. Davenport had a fever, his incision looked irritated, and he was having difficulty catching his breath. As Mr. Davenport's pain persisted, he stayed in bed, ate little, and did not want to be disturbed. He was irritable and angry, refusing to contact his physician, and he told his wife, to “leave me alone and let me die in peace.”
She tearfully called her children, who lived out of state, for support and was told to contact the doctor again. She reported to Mr. Davenport's doctor that her husband had a fever; was coughing; refused to talk, except in anger; and at times seemed to “simply fade away.” She was told to give him Tylenol (acetaminophen) for the fever and to bring him to the clinic in 2 days, but to take her husband to the nearest hospital emergency department if the symptoms persisted or got worse.
Mr. Davenport woke with a high fever and in severe pain early the next morning, and his wife called an ambulance. He was admitted to the hospital with a pulmonary embolus and remained on anticoagulants, intravenous antibiotics, and pain medications for 5 days. During this time, the staff nurse evaluated him for emotional distress using the Distress Thermometer, and also administered the Problem List.