May 24, 2022 - Written By: Aston Martinez
Imagine you’ve just been handed a complete copy of your medical records. As you’re skimming it, you find that one of your physicians left a note in your chart stating that you were difficult and non-compliant during one of your appointments. “That can’t be right,” you think as you try to remember what might have gone wrong during that appointment. There was that one time you refused a medication you didn’t feel comfortable taking, or maybe it was the time that you cried because the doctor suggested that it was all in your head… but surely that wasn’t enough to warrant a note like that, right?
Many of you might remember a similar story on Seinfeld. In one episode of the beloved sitcom, Elaine Benes recalls an appointment in which they were labeled as ‘difficult’ simply for declining to put on a paper gown for the doctor to examine a suspicious mole that was already clearly visible and exposed thanks to the tank top she had worn that day. She explains this to her doctor, who pretends to erase the note that Elaine already knew had been written in pen. Seemingly without examining the rash that she came into his office about, the doctor states that it didn’t seem to be anything serious and exits the room, jotting down yet another note.
After spotting the note in her chart and feeling brushed off by her doctor as a result, Elaine then seeks the help of a completely different doctor. It’s clear she was trying to avoid once again getting labeled negatively as she changes into a gown without complaint, beaming at the doctor and enthusiastically telling him how much she loves the gowns. Panic sets in upon realizing that her new doctor held a copy of the same medical charts from her previous doctor’s office, which seemingly leads to her concerns being dismissed yet again.
Unfortunately, this situation is all too real for many patients - some of which never even realizing that these notes are in their charts, let alone that those notes are impacting the quality of care that they receive. Let’s get into the nitty-gritty of how this happens, why it’s a problem, and how patients can combat it.
How Negative Labels Make Their Way Into Your Records
So what is it that makes someone a “difficult” patient? It could boil down to a number of factors, depending on the doctor and their perceptions.
“To some, a difficult patient is one who makes irrational choices that would be harmful to his or her own health. Another physician may think of a patient that he or she can't cure or satisfy as difficult. In some circumstances, it may be boil down to a clash of personalities between a patient and physician. At other times, the difficulties arise as a result of something more fundamental such as patients' beliefs and values that run counter to the physician's own,” explains Dr. Audiey Kao, MD, Ph.D. (Kao, 2003)
There are many, many other negative terms and labels besides ‘difficult’ commonly found in medical records, including:
Some of the stigmatizing language used in medical records can be a bit more subtle, such as using words like “claims”, “insists”, or “apparently” that seem to convey a sense of doubt from the physician. Although these words don’t necessarily reflect individual bias on the physician’s part, they can still be interpreted by other physicians the patient sees in a way that could stigmatize the patient, exacerbate biases against the patient, or lead to dismissal of the patient’s concerns. (Beach et al., 2021)
Who These Labels Impact
While this can happen to anybody, it’s especially impactful for those with chronic illnesses and rare diseases. Sometimes, it’s our completely valid frustrations at having to seek so many different opinions or feeling constantly brushed off that leads doctors to perceive us as being difficult. Other times, it’s that we disagree with our doctor’s opinion, which some doctors may interpret as non-compliance.
The high frequency of visits, unusual symptoms, and complaints of chronic pain are all often mislabeled as drug-seeking behavior or malingering, especially if the patient is undiagnosed. One study found that the average rare disease patient sees up to 8 different doctors before getting the correct diagnosis - and that’s not including the various new specialists you then have to see after receiving a diagnosis, emergency physicians, or doctors who manage your care during a hospital admission. Many physicians simply aren’t equipped with the resources necessary to diagnose and treat rare diseases, which can further exacerbate tensions in the doctor-patient relationship or lead physicians to dismiss patients simply because they lack knowledge about the patient’s condition. (Global Genes, 2013)
In a blog post addressing the issue of negatively labeling patients, Dr. Brian Goldman says, “Patients with chronic illnesses (and their parents) have a unique stake in this issue. As frequent visitors to the health-care system, they have special experience on its inner workings. One can argue that such experience gives them expertise that should be respected by health professionals. They would argue that some doctors don't want patients to be equal partners; they want prime jurisdiction on medical knowledge.” (Goldman, 2018)
If you’ve got both medical and mental health conditions, that’s a double whammy. Not only is mental health still a very taboo and stigmatized topic, but surveys point to a strong correlation between having mental illnesses and being labeled a difficult patient. (Koekkoek et al., 2006) Chronic illness and pain often lead to feelings of depression, isolation, fear, anger, hopelessness, and the development of moderate-to-severe mental health conditions. (Reinert et al., 2020)
Furthermore, people of color are disproportionately impacted due to the pervasiveness of racism. According to a 2022 study, black patients are more than twice as likely to have negative labels applied to their records than caucasian patients. (Sun et al., 2022) Another study from 2021 detected more markers of disbelief in the charts of black patients than that of white patients. (Beach et al., 2021)
Why It’s Problematic
The negative labels noted by physicians can follow patients forever, often without the patient’s knowledge. These labels are often applied to patients who were simply scared that something was seriously wrong, trying to be actively engaged in their healthcare, or just have characteristics and mannerisms that were deemed somehow unpleasant.
Regardless of whether or not the label may be warranted or defensible, the problem is that it can seriously harm a person's access to unbiased care from that point forward. While each person’s experience is different, some of the most common ways this issue can be problematic or harmful include:
Noting negative patient descriptors does nothing to help the patient and instead leaves the patient’s future care open to being impacted by the biases and stigma that come with those descriptors. (Preston, 2022) If it has nothing to do with your state of health, well-being, or treatment, it has no place being noted in your medical records.
As previously mentioned, patient symptoms are more likely to be dismissed as exaggerated, fake, attention-seeking, or drug-seeking. Or, in the case of patients with mental illnesses or intellectual disabilities, simply all in their heads.
Patients are less likely to receive aggressive pain management. One study gave fake medical notes to doctors in training and found that patients with negative, stigmatized descriptors received less aggressive pain management care. (Goddu et al., 2018)
Patients are less likely to receive regular screenings for serious diseases. (Goldman, 2018)
Patients face mental anguish when they either notice these labels or feel unheard/invalidated by their provider. Eventually, patients may even begin doubting and gaslighting themselves, leading them to ignore potentially serious symptoms.
Many patients are scared to disagree with their doctors or advocate for themselves for fear of being labeled negatively.
What You Can Do
There’s only so much we can do to combat this problem since we can’t control what the doctor interprets and tries to document. However, there are still some ways for us to prevent or combat being labeled negatively by physicians.
Bring an advocate with you. It’s important to advocate for yourself, but it can also be difficult to communicate clearly when you’re dealing with physical/mental distress or feeling vulnerable. It may help to have a level-headed patient advocate with you, whether it’s a professional advocate or someone close to you.
Keep an eye on your medical records and review them regularly. Many notes and files aren’t shown on the online patient portals, so be sure to ask your provider’s office for a copy of your full record. Not only is this a great way to figure out if your provider has applied negative labels to your chart, but patients who review their medical records reported an increased sense of self control, a better understanding of their medical conditions and overall health, improved recall of their care plan, and being better prepared for upcoming appointments. (Delbanco et al., 2014)
Keep in mind that the doctor-patient relationship is the same as any other social relationship in the sense that sometimes the doctor and patient cannot seem to develop a solid rapport. If that’s the case with your physician, it’s best to either have a chat with them about why the two of you might not be jiving well and how to improve your rapport. If that doesn’t work, it may be time to consider parting ways.
If a negative label or descriptor is already on your record, you have the right to request that it be removed. If possible, try having a chat with your doctor to ask for clarification and figure out how to improve care and communication moving forward if you plan to stick with them.
Though you can’t control how your doctor reacts when you disagree with them about something, it’s better to voice your concerns than to live in fear or suffer silently. When you disagree, speak confidently but with respect. Try to communicate clearly about why you may disagree and ask your doctor to also explain their reasoning. If you still disagree after they provide their rational for their medical recommendation, share your exact concerns with them, including all questions you may have.
If all else fails and you still feel dismissed or invalidated by your physician, it may be best to consider parting ways. It can be really nerve wracking and exhausting to have to switch physicians, but when it comes to your health, you deserve healthcare providers that make you feel heard and confident that you are getting the best possible care.
References and Resources
Beach, M. C., Saha, S., Park, J., Taylor, J., Drew, P., Plank, E., Cooper, L. A., & Chee, B. (2021). Testimonial injustice: Linguistic bias in the medical records of black patients and women. Journal of General Internal Medicine, 36(6), 1708–1714. https://doi.org/10.1007/s11606-021-06682-z
Delbanco, Tom; Walker, Jan; Sigall K. Bell, et al; Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead. Ann Intern Med.2012;157:461-470. [Epub 2 October 2012]. doi:10.7326/0003-4819-157-7-201210020-00002
Global Genes. (2013). Rare Disease Impact Report: Insights from Patients and the Medical Community. Rare Disease Impact Report. Retrieved from https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf
Goddu, A., O’Conor, K. J., Lanzkron, S., Saheed, M. O., Saha, S., Peek, M. E., Haywood, C., & Beach, M. C. (2018). Do words matter? stigmatizing language and the transmission of bias in the medical record. Journal of General Internal Medicine, 33(5), 685–691. https://doi.org/10.1007/s11606-017-4289-2
Goldman, B. (2018, July 4). Does your doctor think you're a 'difficult' patient? | CBC Radio. CBCnews. Retrieved May 19, 2022, from https://www.cbc.ca/radio/whitecoat/blog/does-your-doctor-think-you-re-a-difficult-patient-1.4731133
Kao, A. (2003, April 1). The difficult patient-physician relationship. Journal of Ethics | American Medical Association. Retrieved May 19, 2022, from https://journalofethics.ama-assn.org/article/difficult-patient-physician-relationship/2003-04
Koekkoek, B., van Meijel, B., & Hutschemaekers, G. (2006). "difficult patients" in mental health care: A Review. Psychiatric Services, 57(6), 795–802. https://doi.org/10.1176/ps.2006.57.6.795
Preston, E. (2022, January 19). Negative descriptors are more likely to appear in health records of black patients, study finds. STAT. Retrieved May 19, 2022, from https://www.statnews.com/2022/01/19/negative-descriptors-more-likely-black-patient-records/
Reinert, M., Adams, T., Fritze, D., & Nguyen, T. (2020). Early, Equitable, and Trauma Responsive Care for Chronic Pain and Mental Health. Mental Health America. Retrieved from https://mhanational.org/sites/default/files/Early%2C%20Equitable%20and%20Trauma%20Responsive%20Care%20for%20Chronic%20Pain%20and%20Mental%20Health.pdf
Sun, M., Oliwa, T., Peek, M. E., & Tung, E. L. (2022). Negative patient descriptors: Documenting racial bias in the electronic health record. Health Affairs, 41(2), 203–211. https://doi.org/10.1377/hlthaff.2021.01423
Aston Martinez is a writer, community-based activist, and aspiring public speaker. She lives with multiple rare diseases, and she's on a mission to bring more awareness and fairness to the rare disease community. She's also the VP of Content for Habit Nest and has a passion for writing fiction!