Aim of Guideline Is to Stamp Out Distress

HAMBURG, Germany—“The next goal for psychooncology is to stamp out distress,” said Jimmie Holland, MD, chair of the Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center.

In a presentation at the Fourth International Congress of Psychooncology, Dr. Holland said that the National Comprehensive Cancer Network (NCCN), representing 17 major US cancer centers, has developed a distress management guideline that will be used for the treatment of psychological distress in patients. She presented the updated guideline at the NCCN’s recent fourth annual conference in Fort Lauderdale, Florida.

“We used the word ‘distress’ because we think that it provides the patient with a sense of dignity that using words like ‘psychiatric’ or ‘psychological’ does not,” Dr. Holland said. “Anybody could say ‘I’m distressed’ without feeling embarrassed. We don’t want to stigmatize people who may already feel stigmatized because they have the diagnosis of cancer.”

Dr. Holland said that distress can be conceptualized as psychological, social, or spiritual, or as any problem that interferes with the patient’s ability to cope with cancer. “Each institution should have an interdisciplinary team focused on stress management,” she said.

Distress management guidelines can also assist the busy oncologist who may not have the time or training to assess psychological, financial, or spiritual distress in his or her patients.

Patients may also be reluctant to share their level of distress with their oncologist for fear that this may distract the oncologist from focusing on the treatment of their cancer.

“Oncologists are busy and patients don’t want to be seen as ‘crazy.’ There are barriers to the dialog between patients and physicians,” Dr. Holland said.

There are several areas of concern in the management of stress, Dr. Holland said. Health care professionals and clergy need to be trained in the identification and management of distress. Dr.

Holland also feels that medical contracts must include, for the purposes of insurance coverage, reimbursements for the management of stress.

Finally, she said that clinical health outcome research needs to include the assessment of distress (see report on page 1) and its impact on cost effectiveness.

“More and more patient health outcome research is looking not only at how much a treatment costs and how well it works but also at how satisfied patients are with the treatment they are receiving. Patient satisfaction is an integral part of medical care,” she said.

Dr. Holland pointed out that there has been a major shift of care to ambulatory settings. “No longer are patients hospitalized for long periods; instead, they are in their homes, coming in for care, and attempting to cope with more and more cancer-related stress with less and less support from the hospital,” she said.

Consequently, the identification and management of distress is something that must be accomplished while patients are in for their brief outpatient visits. “Having efficient methods and guidelines for this will streamline the process of treating a patient’s distress,” she said.

The first goal of the distress guideline, Dr. Holland said, is to establish standards for the identification and treatment of distress in cancer patients. In developing the guideline, Dr. Holland’s group followed the footsteps of the palliative care movement, which has established guidelines to treat people in pain.

‘Stress Thermometer’

“Every cancer patient should be screened for distress on his or her initial visit and every subsequent visit,” she said. This screening provides the nature of the problem and then the appropriate referral can be made. Dr. Holland indicated that her group at Memorial Sloan-Kettering Cancer Center has used a “stress thermometer” in which people rate their level of distress. “We’ve found that when people score 5 or greater (on a scale of 10), they are experiencing significant anxiety,” she said.

Other sections of a screening instrument might ask patients if they are experiencing problems in financial, social, or spiritual areas.

Although mild distress may be handled by the primary oncologic team, the new guideline will help the primary team know when they should refer a patient and to whom, thus providing a streamlined continuum of care. The guideline also offers clinicians the freedom to refer back and forth between disciplines when it turns out that the problem is more complicated than it first appeared.

Describing the psychiatric guideline in more detail, Dr. Holland indicated that there would be an established pathway for the treatment of each psychiatric disorder. “Some patients will have distress that is identified by a screening instrument while others may be identified because they have a psychiatric history or are on a psychotropic medication like lithium,” she said.

In any event, an established treatment pathway will be available to guide the clinician in the management of the patient’s symptoms. Similar guidelines will also be written for other professionals such as social workers and chaplains.

In conclusion, Dr. Holland stated, “the goal for psychooncology today should be to ensure that no patient in distress goes unrecognized and untreated. It is clear that many patients are never questioned about how they feel.” She said that by systematic use of treatment guidelines and research on screening, more patients’ needs will be addressed.

“The pain people have a little badge or insignia they use that says Stop Pain,” she said. “I think we need exactly the same for distress, Stop Distress. No patient’s distress should go unrecognized.”