By Mary Jackson Scroggins
Sugarcoating Leaves Bitter Taste
Let's use terms that reflect the reality of unequal treatment and uneven recruitment
By Mary Jackson Scroggins
“Special populations”—the term of choice for medically underserved and underrepresented people—has a less negative feel than “vulnerable populations,” the term used in federal regulations to describe many of the same patient groups. Although easier on the national conscience than “underserved” or “vulnerable,” the word “special” neither describes nor defines the reality of membership in such groups.
Language informs our thinking and actions. Calling a group or behavior what it is keeps all of us on our toes. Vulnerable or “special” populations may be categorized in many ways: by race, ethnicity, age, gender, socioeconomic status, sexual orientation, physical “ableness,” geographic location, education level or other factors that put individuals at a treatment and care disadvantage. Using euphemisms such as “special” for these populations may downplay the significance and reality of their disadvantaged status. Likewise, investigation of the reasons for health disparities and the struggle to overcome them must unflinchingly reflect reality—in words and actions.
I have never heard, and I suspect that I never will hear, public assertion that health disparities are acceptable. There is no allowable level of unnecessary death and suffering—something akin to acceptable collateral damage. However, the ongoing public discourse on the disproportionate death and suffering from cancer amounts to acceptance of the unacceptable, if we don’t take decisive action toward understanding, reducing and eliminating these disparities.
Recent research reports and news headlines document the unequal, disproportionate burden of cancer: “Rectal Cancer Treatment Gaps Persist, Especially for African-Americans,” “Study Debunks That Blacks Are Wary of Medical Research: Minorities Are Willing to Volunteer But Often Are Not Asked” and “Docs Fail to Offer Life-Saving Cancer Procedure to Blacks.” Such articles speculate on the reasons for disparities in cancer treatment, clinical trial recruitment and patient care. The list of potential culprits is long and includes genetics, the medical system and patients’ distrust of it, health policy, a lack of routine primary care or referrals to specialty care, language and cultural barriers, lifestyle choices, racial and other biases, the patient-physician communication process, unequal access to clinical trials and physician selectivity in offering patients advanced treatments or informing them of care options.
The last four causes combine to be the proverbial elephant in the middle of the health disparities crisis. Physician selectivity, or bias, for instance, may contribute significantly to disparities in clinical trial enrollment, less aggressive treatment regimens, decreased quality of life and higher death rates. It is often characterized as a lack of conversation and information exchange—a result of communication problems. However, like the label “special” populations, “patient-physician communication problems” is a palatable term that may cloak unacceptable practices.
Physicians are essentially the gatekeepers to clinical trial participation and treatment options. Any bias or unequal selectivity on their part is therefore significant and worthy of rigorous investigation, as a precursor to change. Let’s document its extent, frequency and effect; examine its underlying causes; and find ways to end such practices, rather than waste time and effort calling an elephant a mouse.
To frame the discussion fairly and honestly, let me be clear: Physician bias is only one of many factors contributing to the unequal burden of cancer on the most needy and the least well served among us. However, I believe it to be a significant contribution—with devastating consequences. Thus, it requires open, candid debate—free of disclaimers—no matter how uncomfortable that discussion makes us.
If we are to move steadfastly to reduce health disparities and then to eliminate them, we must not use euphemized, sanitized terminology, and we must have no protected class of contributors—in other words, no individuals or groups of individuals whose actions are beyond scrutiny. Should an overwhelming protective urge arise, it should be directed toward those patients who don’t receive optimal health care: rectal cancer patients who must wear waste-collecting colostomy bags for life because they didn’t receive appropriate sphincter-sparing surgery; patients with treatable lung cancer who didn’t receive an appropriate staging procedure and, as a result, are ineligible for potentially life-saving surgery; low-income patients who receive suboptimal pain management; and patients who were never invited to benefit from clinical trials.
All patients should be protected from whatever combination of forces work against their optimal medical well-being. Period.
Unequal treatment and uneven clinical trial recruitment can yield nothing except unacceptable and unsurprising results. All contributors—patients and physicians alike—must acknowledge and be held accountable for their roles and hasten an end to this national disgrace.