This is the sixth and last article in the clinician-associated trauma series. Soon, all six articles will be released in a downloadable e-book available at Chronic Pain Partners’ website. If you have any questions or comments, feel free to leave a comment below or email the author of the series at kate [at] chronicpainpartners [dot] com.
Dear Doctors,
Do you have a second? Probably not, which is why I put this in writing so you can read it when you find a minute to breathe. (You’re probably going to need more than a minute, unless you’re a really fast reader.)
I know it probably seems like I’ve been ragging on you for the last couple of articles in this series, but clinician-associated trauma (CAT) is real–Colin Halverson and some other smart people said so. It’s been great for patients to realize that the pain and, yes, trauma they’ve been feeling and dealing with has a name. You know us chronic illness folks—always looking to put names on things.
I know there are a lot of doctors and other medical providers who are just as appalled as patients are that something like CAT exists. You might be one of them, and you do your best to prevent it from occurring. You probably also know a colleague who needs to read this article but probably won’t because they are oblivious to the harm they are causing. Whichever category you fall into, I hope you’ll indulge me a few paragraphs about how you can help prevent CAT. I don’t have a Smokey the Bear-type spokes animal (you know it would be a zebra if I did!), but I do have 30+ years seeing doctors for a complex, rare chronic illness, so I’m kind of an expert in experiencing the behavior of doctors. However, we’ll turn to the research first to see what it has to say.
“Because of the frequency with which many of our interviewees interact with clinicians, even small difficulties can quickly compound, resulting in lasting trauma that leads to worse patient–provider relations, decreased trust in the healthcare system and the self, and adverse health outcomes.” (Halverson et al., 2023)
The Two E’s: Education and Empathy
In the “Conclusion and future directions” section of the paper, Halverson, et al. discuss two ways providers can help prevent CAT: education and empathy. They say, “Educating clinicians about hEDS and similar conditions has the potential to be instrumental in reducing the negative outcomes described in this article.” They refer to the EDS Echo program as one possible educational opportunity for providers to learn about EDS and potentially feel less overwhelmed or frustrated by patients presenting with a host of unrelated symptoms. Halverson et. al cite Huynh and Dicke-Bohmann’s January 2020 paper, saying that “education that builds clinician humility” can also be beneficial to building patient trust and satisfaction.
Sometimes admitting that you don’t know matters more than having an answer. CAT is often found in patients who tried to explain something to their clinician, offered a suggestion, or provided guidance and were shut down. Sure, it can hurt the ego a little to admit that you’re fallible. But saying, “I don’t know, let me find out,” then turning to a search engine or informational database can make the patient feel as though you’re willing to learn about the things you don’t know and find the proper treatment or therapy. Maybe the two of you can learn something together and that can open the door for shared decision-making.
Halverson et al. cite Huynh and Dicke-Bohmann’s research again, mentioning that education, “in particular, an openness to other ideas and experiences and an emphasis on listening attentively to one’s patients’ complaints,” is also important. He is referring to education about empathy. All the education in the world doesn’t matter without empathy or a good bedside manner. There have been numerous studies showing that patients are more satisfied, follow their treatment plan better, trust their doctors more, have better outcomes, and experience a host of other positive attributes and outcomes when the clinician shows empathy. It can be for a specific problem, symptom, or general empathy for what a patient with a complex, chronic illness goes through while navigating a healthcare system that isn’t built for them. Saying these things out loud is important. It helps the patient know that you’re on their side.
“EDS is a rare syndrome about which many patients have spent significant time and resources educating themselves. An EDS-naïve clinician’s refusal to listen to his or her patient’s understanding of the disease can do more than simply invalidate that patient: It can lead to medical harm based on uninformed decision-making” (Halverson et al., 2023). Listening is one of the most important skills in being empathetic. Look, we know you have a difficult job, limited time, and are pressured to deliver care as quickly and accurately as possible. But each patient has a story they need to tell you. Even if you know what to do after the first sentence: Let. Us. Talk. Sure, if it seems like we’re rambling, gently redirect us, but cutting us off after 18.2 seconds, possibly missing the other 27.7 seconds we were going to speak (Coyle et al., 2022 ) makes us feel unimportant and insignificant. You may think you know why we’re here and what to do—you’ve maybe read the chart (maybe) and reviewed some images, but trust me when I say our own words will provide you the information you need and possibly some surprising information you might have missed.
Empathy is a hard skill to teach, and it’s wrapped up in things like body language, communication skills, language use, implicit and explicit biases, trust, vulnerability, sharing, and much more. It seems like everyone, from the American Psychological Association to WebMD to The New York Times, has guides for how to develop empathy, so I won’t reinvent the wheel. It really comes down to what Atticus Finch told his daughter, Scout, after her first day of school, in the Pulitzer Prize-winning novel, To Kill a Mockingbird: “You never really understand a person until you consider things from his point of view. Until you climb inside of his skin and walk around in it” (Lee). That’s much ickier than walking around in someone else’s shoes. Kinda got a psycho killer vibe there, Atticus.
CAT Got Your Tongue?
Since it’s the main way we communicate with others, language plays a huge part in developing relationships, trust, and empathy. Innocuous words and phrases can sometimes have different interpretations and connotations, so consider the following:
- Avoid saying, “Oh, I know [exactly] how you feel…” and then telling a story about how you’ve been in the same position. Your patient will immediately shut down. Not only have you taken over the conversation, but you’re also not listening. A single mother trying to work two jobs who says she’s exhausted and in pain all the time will have a difficult time feeling like a doctor—someone afforded a lot of privilege in our society and more than likely makes more money than she does—truly understands her situation. Try something like, “I don’t know what that’s like. Can you tell me more about X?” or “Wow, that’s a difficult situation. What can I do to help?”
- The phrase “Why don’t you just…” is usually followed by something like “lose weight,” “exercise more,” “get more sleep,” “reduce your stress,” “work less,” and other things of that nature. If it were “just” that easy to do those things, your patient probably is smart enough to have thought of them and tried them already.
- When things don’t go well, many people—including medical professionals—try to “at least” the patient to death. If a particular procedure didn’t work: “Well, at least you didn’t lose the leg!” If a particular medication gives a patient awful side effects: “At least we know that one doesn’t work.” If an appointment goes poorly: “At least you know not to go back to that doctor.” This is the cousin of toxic positivity. Negative emotions are okay when something goes wrong or is disappointing. Our culture tries to rush people out of sadness, disappointment, and frustration when it’s more productive to feel those feelings and get to the other side of them.
- Avoid toxic positivity: “it could be worse,” “look on the bright side,” “no bad vibes here,” or not allowing negative feelings to be expressed. As stated above, these phrases and others make a patient feel like their anger, sadness, and other negative emotions are wrong. It can make them feel as if their problems are insignificant and unimportant.
- Be careful with the word “should.” Telling patients they should do something removes their agency as decision-makers in their own healthcare. Telling them they should lose weight, should take a particular medication, should get surgery, should start going to counseling sets the stage for the patient to feel like they are disappointing you if they don’t do those things. For patients with chronic illnesses who depend on medical providers for medications, care plans, referrals, and more, “should” holds a lot more meaning–not doing something they “should” can feel like putting future care at risk.
- Avoid words that imply culpability (Goddu, et al., 2018). Even if a diabetic patient shows up with high blood sugar from eating too much sugar with their breakfast, it does no good to blame the patient. They are still deserving of care, even if they “brought it on themselves,” “know better,” or “deserve it” based on their actions. So much of how our body acts and reacts is out of our control (only about 30% of our health is the result of our behavior); sometimes people make bad decisions; sometimes people are choosing the lesser of two evils (is a sugary breakfast better than no breakfast?).
- Avoid the word “normal.” Saying something like, “In a normal patient, X happens. In you, Y is happening.” It doesn’t feel good to know you’re abnormal. I’ve had doctors who refuse to answer my question when I ask if a lab value or symptom is normal. They’ll usually respond with “it’s expected” or “within the range we would expect for you.” I thought they were just being cagey, but now I know they were trying to avoid the word “normal.” Same with “abnormal”–“unexpected” and “outside the expected range” or “higher/lower than we like to see” is better.
- Don’t tell us that our situation is difficult or that we’re such unique patients, and therefore, it’s hard to find the right treatment. We know. I’ve been the “come here and look at this!” patient my whole life. I don’t mind helping medical students learn about Ehlers-Danlos syndrome. I do mind being treated like some kind of bizarre scientific display for other doctors to marvel at.
- The words “refused” and “denied” carry heavier connotations to patients than they do with medical providers. You patient didn’t refuse treatment if he said he’d think about it and get back to you at his next appointment. If a patient says she doesn’t have any abdominal pain, is it more difficult to write “patient reports no abdominal pain” than “patient denies abdominal pain”? Denying implies that it exists, but the patient is refusing to acknowledge it.
- This one is on behalf of the patients with rare diseases: when we report a symptom and you say “that can’t be happening” or otherwise doubt that the symptom exists, you’re calling us a liars without saying the word “liar.” Patients aren’t statistics and averages found in research papers, especially those with complex illnesses. So, if a patient says she’s having vaginal dryness even though she’s on estrogen-based birth control, telling her it shouldn’t be happening does not help the situation. Sure, it’s weird, but how are you going to help this patient? Does she need more estrogen? Does she need to see a gynecologist or endocrinologist? How old is she? Is she going through menopause? Could she be going through early menopause? Does her rare illness have anything to do with gynecological and/or endocrine function? What about her medications? Stopping at “well, that shouldn’t be happening” is lazy doctoring. Finding out that the opioid medication that she’s been using for a year for chronic pain blocks the signals that make estrogen—that’s amazing doctoring.
Sharing is Caring
We, as patients, are expected to be vulnerable and put our trust in doctors, even when we meet them for the first time. We tell them intimate things that we might not even tell those closest to us. Doctors are allowed to look at and touch our bodies, and we’re supposed to trust them in the name of medical treatment. Please trust us as well. Trust that we know our bodies and our symptoms. Very few people like going to the doctor, and even fewer like going to the doctor and being called a liar, especially when an issue feels critical. Yes, you’re going to have a few patients who are making things up or trying to get drugs or get out of work, but do you think that’s most patients you see? If so, maybe take some time to consider if you’re in the correct profession.
It’s also okay to share with us, either what you’re thinking about a particular symptom, what you did over the weekend, or what a crazy day it’s been. These glimpses allow us to see our doctor as more than just the person typing away at the computer, already thinking about their next patient.
There’s Always More Work To Do
Beyond Halverson’s recommendations of education and empathy, there are other ways to support patients and prevent CAT at the same time:
- Be an advocate for your patient.
- Communicate with providers you have in common. When another provider tries to dismiss a patient or belittle them, stand up for them. Keep other providers informed of what you’re doing and why. Offer to provide education to patients, family, and providers.
- Share your and your patients’ knowledge
- You may know the healthcare system better than patients do (I hope you do). Provide phone numbers and contacts. Explain how a process happens. Tell the patient what their part in it is. If another patient had success, share that (appropriately) with other patients. Share things that didn’t work. It can be helpful to know other patients are struggling with similar things and that we aren’t alone, even though we don’t know the other patient. Share resources with and among patients.
- Investigate
- Sometimes the first answer isn’t the right answer. Make sure the medication you’re prescribing is the right one, in the right dose, in the correct form. Don’t write a prescription for an extended-release medication and ask the patient to cut it in half. Don’t prescribe the Narcan that has a Luer lock at the end for a patient without an IV port. (Both true stories.) Is the specialist you’re referring the patient to the correct one? Is there a specific doctor you want the patient to see? Paying attention to the details pays out big for the patient, and it only take you a few extra minutes.
- Be creative
- It’s hard to be creative in a time-limited environment like a medical appointment. But sometimes the best answer lies in a non-traditional treatment. Collaborate with a colleague, do a bit of research, listen to the patient’s idea—maybe you’ll come up with the solution the patient has been looking for.
- Be available
- This is a tough one because we know you’re busy with other patients, charting, phone calls, forms, administrative work, finding time to eat and go to the bathroom, and about seven million other things. However, patients with complex conditions and situations need to speak to you…sometimes. Sometimes a physician assistant (PA), nurse practitioner (NP), nurse, or medical assistant is the appropriate person to respond. However, those people may not know the complexity and specific details of the patient’s case and provide incorrect or irrelevant information. Then the patient has to try again or find a different way to get the answer from you.
Conclusion
One series of articles isn’t going to stop CAT throughout the medical community. However, each win, each time a provider thinks twice about what they are going to say or how their actions might be perceived by the patient, the exam room grows a little safer for people who have been harmed by CAT. Only by working as a team can clinicians and patients hope to reverse the effects of CAT—or never create them in the first place.
Kate Schultz
November 2024
Great article. The only comment I have was with the medical terminology. This is where we, the patient, need some education. Some words have different connotations in medical terminology than in the common vernacular. For example, “deny” is commonly accepted medical terminology to simply means to report or note “the absence of a symptom”. Similarly, if someone was to see the word “extraordinary” on their chart they might think “hey, I’m doing great!”. However in medical terminology, “extraordinary “ means something bad and outside of the ordinary result.
Hi Corrine,
Thanks for the comment and for the extra example! I was trying to make the point that doctors should keep in mind that this kind of language—deny, extraordinary, patient refused, etc.—can read differently to patients who are not familiar with it, and it may need an explanation. Some of it can come across as blaming or shaming, and it doesn’t hurt to try to word things differently. Obviously, this wasn’t as big of a problem before visit notes were available for all patients to see. Based on my own experiences, it seems that there’s been a learning curve for patients and providers. I see disclaimers at the ends of my visit notes, saying that the note is a communication tool between doctors, not everything that happened in the appointment will be documented, some language may not make sense, and please ask your doctor about anything confusing. I used to be an English teacher, so studying language use like this is fascinating to me. Thanks for adding to the conversation.
Wishing you the best,
Kate