How's Your Distress?

April 1, 2007

A simple intervention addressing the emotional impact of cancer can help put the "care" back in caregiving

Cancer care in the United States is considered the best in the world. However, it is seriously lacking in one important area: attention to and sufficient support for the "human side" of care. Absent or minimal coverage of mental health services for patients, who are medically ill, leads to the low numbers of mental health and social work professionals to work with oncologists in their community practices. Most mental health professionals who do attempt this work must find ways to support their salaries by research grants or gifts from private foundations or advocacy organizations that recognize the importance of these services.

There is something seriously wrong with a health-care system that disregards or minimizes the emotional impact of cancer. When patients' distress is not recognized or treated, they will likely be less able to adhere to cancer treatments that require their active participation to ensure optimal results. This glaring omission in our therapeutic resources for patients with cancer is finally being addressed by an Institute of Medicine panel, which will report in 2007 regarding "The Barriers to Psychosocial Care of Patients With Cancer in the Community."

These barriers begin with the fact that there is no routine effort to screen or monitor patients to identify those who may be seriously distressed or coping poorly and need help. All of the studies that have been done show that about one-third of patients with cancer have significant distress that should be treated (Psycho-Oncology 10:19-28, 2001). But even today, anything "psychological" continues to be stigmatized. Patients are reluctant to tell their doctor of their anxieties and fears, and physicians often feel that the patient will be offended if asked—and "besides, it might take a long time and I have 15 patients waiting." These are realistic barriers that could be diminished by adapting the example of pain management guidelines, which ask the patient "How is your pain on a scale of 0 to 10?" This has been widely accepted by oncologists, nurses, and patients.

We have found the same approach applies to the management of distress: "How is your distress on a scale of 0 to 10"? This simple question can be asked verbally or by using the "distress thermometer," a 0-10 scale on paper. Used in the waiting room, it allows patients to mark their level of distress and also to check off a list of reasons for the distress (Community Oncology 3:1-4, 2006). Validation studies have found that a patient's distress score of 4 or higher is clinically significant. This prompts the nurse or oncologist to conduct the second stage of screening, to determine if the person should be referred to a social worker or mental health professional (J Natl Compr Canc Netw 5[1], 2007).

This simple intervention would begin to identify those needing help. Often, outpatient visits with the oncologist are so short that the patients' distress is never addressed. Pain is now the fifth vital sign to be checked, with temperature, respiration, pulse, and blood pressure. In Canada, distress has become the sixth vital sign to be inquired about at each visit. We propose that this should become the practice in the United States as well.

Our current cancer care, which relies heavily on scans and laboratory data, reduces the time spent by the oncologist with the patient taking a clinical history and talking, which would likely elicit the presence of distress. Patients often feel that the doctor is concerned only with the cancer and not the individual. Some patients express their concern by saying, "But who cares about me?" This plays out with greatest poignancy in elderly patients with advanced cancer for whom the burden of illness compounds the losses that go along with aging: lessened sight, hearing, mobility, financial security, and often, loss of spouse and family members.

A randomized study reported by the Cancer and Leukemia Group B (CALGB) pointed out the value of a monthly telephone call to elderly patients on palliative chemotherapy to monitor their distress. Those who scored above a cutoff level on two standard tests of emotional distress were referred to their oncology nurse for follow-up. This simple intervention resulted in a marked reduction in anxiety and depression levels (Cancer 107:2706-2714, 2006). In addition to the quantitative data, patients reported that "a telephone call between visits meant that somebody cared." For elderly patients coping with the side effects of treatment, evidence that the oncologist and health-care team care about them as individuals can make a great difference.

Monitoring patients' level of distress at the time of office visits with the simple question, "How is your distress on a scale of 0 to 10?" would identify those who most need help in coping. This should be part of geriatric assessment in particular. It would prospectively pick up problems before they become crises or disasters. Appropriate measures could be mobilized to help. Monitoring by telephone between office visits would do much to reduce the elderly's sense of isolation and questioning, "Does anybody care?"

—Jimmie C. Holland, MD