Why Psychosocial Care is Difficult to Integrate into Routine Cancer Care: Stigma is the Elephant in the Room
Authors: Jimmie C. Holland, Brian J. Kelly, Mark I. Weinberger
Journal: Journal of the National Comprehensive Cancer Network (2010)

Distress Management for 2010, updated by the NCCN Distress Management Panel.The NCCN appointed this multidisciplinary panel, which met first in 1997, to address the barriers to psychosocial care and to develop clinical practice guidelines. 1 The panel members felt that the major barrier, for both physicians and patients, was the negative meaning and stigma attached to words implying the psychological domain, such as psychiatric, psychological, and psychosocial.The panel considered descriptive words that could encompass the range of fears, worries, and concerns of patients with cancer, and proposed the word distress because it could vary in severity from a normal response to a more significant level, consistent with a psychiatric disorder requiring intervention.The word distress also encompasses the range of fears, anxieties, and sadness that patients with cancer experience.The panel then developed guidelines for the management of distress, recommending that patients be first screened for distress with a short, initial, rapid screening question, followed by a second phase during which the doctor or nurse asks about specific problems.This process should be repeated as clinically indicated as part of routine care.Learning from the success of pain management, the panel suggested using a 0 to 10 scale in the form of a Distress Thermometer (DT) to allow patients to indicate their level of distress, either verbally or with pen and paper.Those who scored above a cutoff score for "caseness" (≥ 4) were asked to identify the domains causing the distress and then were referred to a professional such as a social worker, nurse, psychologist, chaplain, or psychiatrist, depending on the problem. 2 These guidelines are updated annually.In Canada, an effort is being made to establish distress the sixth vital sign. 3n 2007, the Institute of Medicine (IOM) issued a landmark report noting that quality cancer care must integrate the psychosocial domain, because strong evidence shows the efficacy of a range of interventions, from psychological to psychopharmacologic. 4 The model for integrating psychosocial services is based strongly on the NCCN Distress Management Guidelines.There is now an alliance of more than 30 professional and advocacy groups with the mission to assure implementation of these guidelines.This issue of JNCCN contains important steps that have been taken to encourage the integration of psychosocial services in cancer care.As discussed, short screening instruments, particularly the DT, have been validated as a broad first screen. 5Touchscreen technology brings a rapid waiting room opportunity to screen for psychosocial problems. 6Jacobsen has developed a patient chart audit of quality care that is being used in the voluntary audit of community oncology practices. 7owever, attitudinal barriers persist that reduce the implementation of quality psychosocial care.We propose that stigma is a major barrier that delays patients' asking for help and oncologists' integrating psychosocial care into their practice.Stigma has been associated with cancer for centuries.In the mid 1970s, health care professionals began to tell people their cancer diagnosis and cancer "came out of the closet" and into the public media.Today, it is hard to recall when the word cancer was not spoken.Nonetheless, stigma remains, and is attached more strongly today to some cancer sites than others, particularly where "blaming the victim" occurs, as with lung cancer.Regrettably, the stigma attached to psychological issues has not appreciably diminished, even when the issue relates to a life-threatening illness such as cancer.This partially accounts for why the psychosocial domain has been slow to develop.A