Let the Truth be Told - Misdiagnosis & Doctor Bias

by Women's Brain Health Initiative:

Could your diagnosis be wrong? Doctors are human and sometimes make mistakes. Perhaps a cluster of symptoms suggests a few different diagnoses, and a lack of time or an incomplete set of diagnostic criteria may result in a patient receiving a diagnosis that either does not seem appropriate, turns out to be incorrect, or may cause greater injury or even death.

Research published in Canadian Medical Association Journal in May 2004 found that between 9,000 and 24,000 deaths occur in Canada each year due to “adverse events” in the hospital setting (with an adverse event being defined as an unintended injury or complication that is caused by health care management, rather than by the patient’s underlying disease, and that leads to death, disability at the time of discharge, or prolonged hospital stays). According to the researchers, approximately 37% to 51% of these adverse events have been judged, in retrospect, to be potentially preventable.

Medical errors may include administering the wrong medication or dosage and misreading a laboratory result. Misdiagnosis – receiving the wrong diagnosis for your ailment – is the top offender. According to research published in JAMA in September 2012, cases of delayed, missed, and incorrect diagnosis are common, with an incidence in the range of 10% to 20% Additionally, research published in BMJ Quality and Safety in October 2013 found that in the United States, among malpractice claims, diagnostic errors appear to be the most common, most costly, and most dangerous of medical mistakes.While there are several factors that can lead to a medical misdiagnosis, including miscommunication between medical professionals and technology glitches, doctor bias has been found to play a considerable role.

Implicit Bias and the Medical Community

Some biases are explicit, such as overt racism or sexism, and are therefore easier to detect and condemn. However, often times an individual’s bias is implicit, which makes it more difficult to track and unpack. “Implicit bias is the automatic associations that your mind makes about a person or situation that you’re really not aware of,” explained Dr. Elizabeth Chapman, the lead author of an article on physicians and implicit bias published in the November 2013 issue of Journal of General Internal Medicine. She is also a clinical Assistant Professor at the University of Wisconsin’s Department of Medicine, Division of Geriatrics and Gerontology.

"Implicit bias is particularly challenging because even though you do not realize it is occurring, it is nevertheless influencing your behaviour, and it is highly dependent on the racial, ethnic, gender, and other stereotypes that are prevalent in society."

Doctors can possess the same kinds of implicit bias as anyone else, and, problematically, their unconscious beliefs about others can influence the kinds of treatments that they offer. “It’s one thing to have a negative social interaction, but it’s a completely different thing when that social interaction is in a clinic when you’re supposed to be making a diagnosis,” said Dr. Chapman. Doctors are frequently under time constraints and do not have complete information (including appropriate medical tests and/or equipment), which further amplifies the effects of implicit bias, said Dr. Chapman

.Implicit biases that can affect a medical diagnosis include gendered, racial, weight, and age-based bias.

For example, multiple studies have shown that it takes a woman longer than a man to receive a diagnosis for a physical ailment. One study published in BMJ Open in June 2010 found that being a woman was independently associated with higher odds of three or more pre-referral consultations for bladder cancer and renal cancer. In other words, it took women much longer to receive the appropriate diagnosis. The researchers therefore concluded that there are notable gender inequalities in the timeliness of diagnosis of urological cancers.

As a result of gender bias, women’s concerns are often attributed to stress and anxiety.

One study published in Chest found that in a hypothetical situation, men were more often correctly diagnosed with chronic obstructive pulmonary disease (COPD) than were women, until the appropriate testing was ordered. “By and large, the men were thought to have COPD, which is lung disease due to smoking. The women patients who were absolutely identical, except female, were more likely to be thought of as having some sort of psychiatric disease,” explained Dr. Chapman. “So maybe they're anxious or there’s something going on that isn't necessarily explained by a physiologic diagnosis.”

With autoimmune diseases, such as multiple sclerosis, celiac disease, and rheumatoid arthritis, which disproportionately affect women, an American Autoimmune Related Diseases Association study found that the average time for diagnosis of a serious autoimmune disease is 4.6 years. During that period, the patient typically has visited 4.8 doctors, and 46% of the patients were told initially that they were too concerned about their health or that they were chronic complainers. The connections between women and hysteria have historical roots and this bias is still well-established today – even if referred to as other names, such as anxiety or stress.Implicit biases can also factor into whether or not an individual with a mid- or dark-skinned complexion is appropriately diagnosed with a health condition.

For example, Dr. Chapman noted that if a physician has implicit bias where race is concerned – if they “tended to think that African Americans were more likely to be uncooperative” or less “likely to follow through on treatment” – those beliefs could impact how the doctor treats that patient. One study found that “if someone had higher implicit bias, they were less likely to recommend guideline indicated treatment for chest pain in people of colour and women.”

In this example, “African-American women fared the worst, which is unfortunately pretty common,” said Dr. Chapman.Older adults may face additional problems if their doctors have certain implicit biases towards aging

Dr. Chapman noted that some physicians may not necessarily understand what constitutes “normal” aging, which can lead to missed diagnoses. Certain early signs of Alzheimer’s disease or other types of dementia, for example, can mimic the symptoms of depression or anxiety, especially for women, which means that symptoms might again be linked to psychological issues.

Much of the problem with implicit bias is systemic, and the medical system reflects these biases.

Women have only routinely been included in medical trials since the early 1990s, when feminist mobilization led the National Institutes of Health in the United States to mandate women’s inclusion in government-funded health research. The same can be said for African-American participants, who have also been historically excluded from large-scale medical data.

In a recent study, published in the October 2019 issue of Science, researchers found that a medical technology commonly used in hospitals in the United States was skewed towards helping Caucasian patients over African-American patients. The algorithm used patients’ past medical costs to predict how much they were likely to cost the health-care system. However, for socioeconomic and other reasons, African-American patients have historically incurred lower health-care costs than Caucasian patients with the same conditions. As a result of this faulty metric, the wrong individuals were being prioritized for certain health care programs. Importantly, the research team is partnering with the developer of a widely-used algorithm to help eliminate this bias.

What can be done to overcome bias

A more diverse physician population will help to lessen the effects of implicit bias, said Dr. Chapman. In the meantime, doctors should be aware that implicit bias exists and should be proactive in overcoming these biases. A first step for a doctor, Dr. Chapman suggested, might be to take the Implicit Association Test (developed by psychologists at Harvard University, the University of Virginia, and the University of Washington) to discover what unconscious biases she or he possesses (available online at https://implicit.harvard.edu/implicit/canada/takeatest.html).

As patients, we may have to advocate for ourselves.

Samaria Nancy Cardinal knows this truth all too well. She has personally suffered from the ill effects of not receiving the correct diagnosis for her health issues. Now, Cardinal is a volunteer patient advocate with the Canadian Patient Safety Institute, an organization whose mandate is to inspire and advance a culture committed to sustained improvement for safer healthcare. Cardinal shares her story with others so that they might avoid some of the hardships that she has endured.

Many years ago, Cardinal, who is of Métis descent, was struggling with mental health issues. Her father had to experience the devastating effects of the residential school system, and as a result “didn’t know how to parent,” said Cardinal, and he was abusive. Cardinal was traumatized from a young age and ran away from home. At one point, she was hospitalized due to severe post-partum depression and was eventually diagnosed with bi-polar disorder. However, Cardinal was not offered counselling; instead, she was prescribed various medications and at one point was taking fifteen different medications and received bi-weekly shock treatment for several years. “I entrusted doctors to help me, but instead I lost fifteen years of my life,” said Cardinal.

Fortunately, Cardinal was able to turn her life around when someone she met encouraged her to take an active role in her health care. She gained the strength she needed and found two new doctors – a family physician and a psychiatrist – who were able to work with her. The psychiatrist helped her get off of the medications that she was on, a process that took approximately two years. “The doctors say now that I have PTSD; I never had bipolar. I was treated totally wrong. If I’d had sufficient counselling, I would have been okay.”

Today, Cardinal is back in university, and owns her own house and business. “I found my way back, but there’s many people who never do.” Cardinal believes that implicit bias played a role in her misdiagnosis, or at least lack of knowledge. “I believe that if the Canadian health care system and doctors would have understood what Indigenous people have gone through, the intergenerational trauma, they wouldn’t have diagnosed me as bipolar. It would have been PTSD.”

What you should do if you are worried that you have received an incorrect diagnosis

It is important to remember that doctors are not perfect and may make mistakes. “When I was younger, I thought doctors were Gods,” said Cardinal. “I thought they knew everything. I no longer think that way.” If you do not feel comfortable with your diagnosis or particular course of treatment, then do not hesitate to vocalize your concerns, ask questions, and/or seek a second (or third or fourth) opinion. “You have to get pushy. It’s your life. Doctors aren’t living your life. They’re consultants in your life.” By being actively involved in your own health advocacy, you not only gain a greater sense of control, but also a better understanding of your condition and greater satisfaction with your care.

Source: MIND OVER MATTER V10