Standards for Psychosocial Cancer Care Under Development

NEW YORK—“There are no minimum standards for the quality of the psychosocial care given at institutions,” said Jimmie C. Holland, MD, leadoff speaker at the Pan-American Congress of Psychosocial and Behavioral Oncology. “We would never let that happen with infectious disease,” said Dr. Holland, Wayne Chapman Chair of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center.

The founding president of both the American Society of Psychosocial and Behavioral Oncology and the International Psycho-Oncology Society, Dr. Holland is working with the National Comprehensive Cancer Network (NCCN) to develop such standards.

The NCCN, a coalition of 17 leading US cancer centers, has developed practice guidelines for more than 93% of all cancers. The multidisciplinary panel convened to develop the psychosocial guidelines includes psychiatrists, psychologists, social workers, nurses, clergy, and patient advocates.

The panel’s first task, Dr. Holland said, was to find a nonstigmatizing word that covered psychological, social, family, and spiritual problems. “We hit upon the word ‘distress,’” she said. Distress can describe unpleasant emotional experiences on a continuum from the normal feelings of everyone with cancer—vulnerability, sadness, fears—to disabling problems—depression, anxiety, social isolation, and spiritual crisis, Dr. Holland noted.

“Putting that definition on it,” she said, “allows us to have all the disciplines involved and to begin to develop a system of services that is an integrated phenomenon and not disjointed.”

Unrecognized and untreated distress, Dr. Holland said, may complicate the oncology team’s work. Among the effects she cited were patients making more frequent visits, having greater difficulty in making treatment decisions, and turning to alternative therapies outside the traditional system.

Preliminary recommendations of the panel, Dr. Holland said, call for each institution in the NCCN to form a multi-disciplinary committee to set up a method for rapid identification of distress in cancer patients and an algorithm for referral to the appropriate discipline.

“Patients should be screened for distress at their initial visit and when clinically indicated thereafter,” she said.

In her own practice setting, Dr.Holland has used both the Hospital Anxiety Depression Scale and a “thermometer” to screen for distress. With the thermometer, patients are asked to rate their distress on a scale of 0 to 10, just as they would their pain. “If patients mark a level of 5 or above, they ought to be triaged for evaluation and for possible treatment,” she said.

Patients are also asked to check off problems they are facing on a form that includes items such as child care, family relationships, emotional and spiritual problems, as well as a long list of physical symptoms that are relayed to the patient’s oncologist.

A nurse can do such screening in the waiting room, evaluate the findings, perhaps ask a few questions, and quickly make appropriate referrals, Dr. Holland noted. One benefit of the proposed model, she said, is that “all of our disciplines are indeed working together in a seamless unit for people with distress.”

Dr. Holland emphasized the importance of including clergy in the referral system since “cancer creates an existential crisis in most people.” Referrals might be made, she said, for concerns about death or afterlife, grief, conflicted belief systems, hopelessness, and conflicts between religious beliefs and recommended treatment.

With adoption of standards, Dr. Holland hopes that reimbursement for services to manage distress will be less of a problem. She also expects quality assurance assessment to become routine and perhaps incorporated in JCAHO reviews.

In Canada, national standards for psychosocial oncology were adopted in September, John M. Farber, MA, reported at the conference. Mr. Farber is director of psychosocial oncology, CancerCare Manitoba, Winnipeg, and founding president of the Canadian Association of Psychosocial Oncology (CAPO).

Developed under the auspices of CAPO, the standards were devised and adopted within 18 months. They cover organizational structure, professional issues, patient services, research and program evaluation, and patient and staff education.

During the drafting process, the Canadian Association of Provincial Cancer Agencies and the Canadian Council on Hospital Services Accreditation were invited to participate. As a result, the standards may be referenced in the next Canadian Cancer Center standards.

“Among the 11 principles established,” Mr. Farber said, “are that psychosocial oncology must be an integral part of cancer care. It is no longer acceptable to be considered a nice addition dependent on resources and available funds.”

The most contentious issue, he noted, was the standard that at least two of the clinical disciplines of social work, psychology, and psychiatry must provide the care, and the leadership of the service must come from one of these three disciplines. “Concern was expressed that pastoral care and nursing felt excluded,” he said. However, the valuable contributions of these professionals to psychosocial oncology programs are clearly recognized in the standards, he noted.