The Rise of Clinician-Associated Trauma in the Doctor-Patient Relationship

Content warning: This article discusses difficult encounters and experiences with medical clinicians that some readers may find upsetting or triggering. Please take care of yourself as you see fit.

 

I did not receive an hEDS [hypermobile Ehlers-Danlos syndrome] diagnosis until I was 29 years old, and until 2023, I did not feel one ounce of validation from a medical professional. Rather, I was told that I was making it all up, it was all in my head, nothing was wrong with me. So, I stayed silent and suffered silently […] I was so confused and ashamed. Since getting my diagnosis, I thought things would get better and I would be taken more seriously. However, I haven’t. […] Now that I have an official diagnosis it isn’t doctors telling me nothing is wrong, you’re crazy. Now it’s ‘I know your condition, you don’t know what you’re talking about’ when in reality, the doctors don’t know what they are talking about.

 The author of this article sent out a survey earlier this year asking members of Facebook groups related to Ehlers-Danlos syndrome about their experiences with medical trauma. The above story was told by a female in her late twenties from the Midwest. (This is how she asked to be identified.) Hundreds, if not thousands, of people with Ehlers-Danlos Syndrome (EDS) and other complex illnesses and conditions could tell their own almost-identical stories, ones that potentially lead to instances of hurt, confusion, and even trauma at the hands—and mouths—of their doctors. These instances of hurt, confusion, and trauma, once without a name, have been given one in a recent study called “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes”. These regular acts of gaslighting, invalidation, and imbalance can now be called “clinician-associated trauma.”

 

Summary Of Previous Articles (with links)
Chronic Pain Partners has published three other articles about clinician-associated trauma, including one about medical gaslighting as a source of clinician-associated  trauma. To review, emotional medical trauma has generally been seen as the result of a big, traumatic event, such as a prolonged stay in the intensive care unit (ICU) or a devastating diagnosis. Sometimes this trauma leads to PTSD. The authors of the study linked above found that the hEDS patients experienced emotional trauma due to negative experiences associated with their medical care, but it didn’t fit into the current definition of emotional medical trauma. The hEDS patients’ experiences were more like microaggressions—small interactions that, if they only happened once or very infrequently, would still be unsettling but wouldn’t lead to trauma. However, microaggressions can become a major source of trauma if they happen over and over again and put the body and brain in a constant state of fear, stress, and strong negative emotions. Researchers Colin M.E. Halverson, Heather L. Powell, and Clair A. Francomano came up with a name for this problem: clinician-associated trauma. The results of their study were published in the SSM—Qualitative Research in Health journal in June 2023.

It’s important to note that most cases of clinician-associated trauma will occur in patients with chronic and/or complex conditions and disabilities, as they have the most frequent interactions with the healthcare system. Patients who use the system frequently will run into all kinds of causes for trauma, but none so immense as the very person who is there to help them: the clinician. Clinicians—doctors, providers, physicians, whatever word is preferred—are seen as a helper, someone to go to when things aren’t going well. How can it be that these very people who are called upon to help can be the source of so much trauma for patients with chronic and/or complex illnesses and disabilities? The answer lies, somewhat, in the clinician-patient relationship. While it may be a “well, no kidding” type of answer, digging into the details, as Halverson et al. did, will provide substantial answers.

 

The Foundation of a Clinician-Patient Relationship
The clinician-patient relationship is an important part of any medically-related encounter. In a paper titled “Impact of the doctor-patient relationship,”  authors Chipidza, Wallwork, and Stern, writing for The Primary Care Companion for CNS Disorders, describe the clinician-patient relationship, almost poetically, as “involving vulnerability and trust. It is one of the most moving and meaningful experiences shared by human beings.” So important is this relationship that the American Medical Association’s Code of Medical Ethics has numerous sections dedicated to defining, explaining, and restricting the patient-physician relationship. Opinion 1.1.1 discusses the patient-physician relationship: “it is based on trust, which gives rise to physicians’ ethical responsibility to place patients’ welfare above the physician’s own self-interest or obligation of others, to use sound medical judgment on patients’ behalf, and to advocate for their patients’ welfare.” Opinion 1.1.6 of the code states that the physician is obligated to provide care that is “safe, effective, patient-centered, timely, efficient, and equitable.”

Chipidza et al.’s paper distills the ideas from the AMA down into four main components of a successful clinician-patient relationship: mutual knowledge, trust, loyalty, and regard (regard being defined as “the patients feel as though the doctor likes them as individuals and is ‘on their side.’”) Halverson et al. found that the same traits—mutual knowledge, trust, loyalty, and regard—arose in their patient interviews. However, these patient stories described clinicians’ negligent behavior in those four areas as sources of clinician-associated trauma. Details from the Halverson et al. study, discussed below in the framework of Chipidza et al.’s four traits, show how traumatic these transgressions can be.

 

Disregarding Regard
Though listed last in Chipidza et al.’s list of traits of a positive clinician-patient relationship, the idea of “regard”—of the clinician and the patient meeting as a team to tackle whatever issues the patient brings to the appointment—is sometimes gone before the patient and clinician even meet. Chipidza et al. describe that patients “afflicted with a ‘frustrating’ disease” can be a factor that may affect the regard aspect of the clinician-patient relationship. Though in their paper they provide “substance abuse, substance-abuse comorbidity, [and] borderline personality disorder” as examples of “diseases that are generally considered difficult to treat”, many patients and clinicians would not hesitate to add Ehlers-Danlos syndrome, POTS, fibromyalgia, chronic regional pain syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, and dozens more to that list. If a clinician looks at a patient’s chart and sees that they have one of these “difficult diseases,” the clinician may already have a bad opinion of the patient before the appointment even starts.

Patient and clinician experiences bear out this disregard for the trait of regard. “If a doctor doesn’t already know me, their attitude often discernibly changes for the worse if EDS comes up. It’s very obvious, utter contempt the minute it’s mentioned,” Denise Reich, a patient advocate, says of her experience with hypermobile Ehlers-Danlos syndrome (hEDS) on the website KevinMD.com. “Utter contempt” is a harsh way to regard a patient simply due to their diagnosis. 

Another patient advocate, Benita Talati, also writing on KevinMD.com, shares that her sister, a physical therapist, “often rants about how patients with chronic pain or chronic illness don’t work and are just on disability. […] She and her coworkers spend time ranting and complaining about their patients who don’t work and use the therapy sessions as ‘social hour’.” She asserts that providers in forums on Reddit agree with his sister and her sister’s coworkers. Talati’s suggestion is not that her sister, colleagues, and providers on Reddit show more regard for their patients who are disabled or chronically ill. No, her suggestion is that clinic hours be extended so that more “professional” people who need physical therapy can be seen. It’s as though Talati, her sister, and many more providers regard patients with disabilities and “difficult” illnesses as problems rather than people. 

Havlerson et al.’s findings bear this out. In interviews with patients diagnosed with hEDS and other comorbidities, they found that “[i]ndividuals with chronic conditions may find themselves labeled ‘difficult patients’ by clinicians due to their numerous hospital visits and the amount of time they spend describing their conditions at intake […]” A majority—68% of those interviewed—says that, when they get up the courage to see a clinician, they don’t bring up hEDS. The clinicians’ negative reactions add to their clinician-associated trauma. 

One woman in the study described feeling that most doctors have a “stereotypical EDS patient…in their head, and it’s not a very gracious interpretation. I see a hysterical woman who is a hypochondriac.” Is it any wonder that patients wish to avoid clinicians who see them in this light? Society expects patients to regard their clinicians with high esteem, but the same regard is often not given to patients, especially those deemed difficult. When these negative views become known—either through articles and internet postings, as Talati stated earlier, or through clinicians’ body language and words—it’s not surprising that patients feel traumatized. No one wants to feel unliked or disrespected. Unfortunately, that’s just the first of four traits in a clinician-patient relationship that can turn sour.

 

Mutual Knowledge Become One-Sided
When a patient knows they have one of those “difficult” diseases and may be met with a provider who already has a negative view of their condition, many try to prevent repeated traumatization by providing information. Describing their condition and symptoms in detail, providing extensive background information, bringing in symptom tracking logs or details from previous appointments, or offering informational articles is one way patients try to put clinicians at ease.  Unfortunately, this act of assistance can backfire and cause the mutual knowledge trait of the clinician-patient relationship to deteriorate.

Lack of knowledge on the part of the clinician is one of the main themes in Halverson et al.’s study. They found that “several participants underscored their belief that the clinicians’ negative attitudes were fundamentally the consequence of their limited understanding of EDS and the limited resources at their disposal to manage the patients’ complaints of pain,” causing clinicians to act dismissively, arrogantly, and with a lack of humility. This behavior reflects one of the three models Chipidza et al. describe in their article about provider-patient relationships: the guidance-cooperation model. “In the guidance-cooperation model, a doctor is placed in a position of power due to having medical knowledge that the patient lacks. The doctor is expected to decide what is in the patient’s best interest and to make recommendations accordingly. The patient is then expected to comply with these recommendations.” 

When the clinician doesn’t have the knowledge to impart upon the patient, the relationship collapses. The clinician tries to protect his or her ego by blaming the patient for having a difficult condition. The clinician, in this scenario, can’t fathom the idea that the patient would have knowledge helpful to the treatment of the patient’s own condition. The provider then becomes unhelpful, and the patient’s knowledge is seen as unacceptable. Both sides of the relationship are unhappy, and if this happens repeatedly, the patient can be left feeling as though their knowledge doesn’t matter, despite how important their input could be. The patient then may avoid getting needed medical care to avoid the retraumatization of feeling that their knowledge about themselves and their condition doesn’t matter. 

The guidance-cooperation model explicitly takes the concept of mutual knowledge—the clinician and patient working in tandem—and gives the trait to the clinician alone. Despite being harmful to the patient’s involvement in their medical care, the medical literature most clinicians are reading is, on average, 17 years behind the research world, according to Sarah Clark, who, in 2022, at the time of the publication of her article “How to Help You Patient If You Don’t Know What’s Wrong” in the Journal of Patient Experience, was a Master’s degree candidate in Clinical Development and Neuropsychology at Bournemouth University in Poole, UK. Patients may have knowledge of or have found evidence of something the clinician hasn’t had the time to learn. Clark continues by encouraging doctors “not to take such a negative view if your complex patient might know more than you on a particular topic having done some reading on ‘Dr Google’.”

The guidance-cooperation model may work for some patients whose health does not play a big role in their lives. But patients with complex and/or chronic illnesses and disabilities need a different relationship with their clinicians because the medical system is not set up to help people with long-term or complicated problems. The interviewees from the Halverson et al. study agreed that clinicians’ lack of knowledge—and not being able to admit that lack of knowledge—was a source of clinician-associated trauma. The researchers write, “Many of our interviewees felt unfairly disenfranchised from contributing their insight and knowledge to healthcare decisions that were directly relevant to them.” In these cases, the patients were meant to comply with recommendations from clinicians who didn’t know much or anything about the diseases the patients had. Those types of appointments can leave a patient feeling like their time (and the clinician’s time) was wasted, and the patient still does not have any answers or solutions.

In these cases, to avoid harm, invalidating the patient, and creating another drop in the clinician-associated trauma bucket, clinicians can adopt the mutual participation model, which Chipidza et al. describe as involving “an equal partnership between the doctor and the patient. The patient is viewed as an expert in his or her life experiences and goals […] The physician’s role is to elicit a patient’s goals and to help achieve these goals.”. Many patients who live with the effects of their illnesses every day have an abundance of information and knowledge they can share with a clinician who will just listen. Halverson et al. agree that patients with EDS invest a lot of time, energy, and resources in researching their conditions and educating themselves about them. If a clinician doesn’t listen to their “difficult” patient, they can cause clinician-associated trauma from the utter disregard of a patient’s experiences, but, equally as important, it can cause physical harm based on the clinician’s lack of humility and desire to protect their ego.

 

Trust Turns to Distrust
The third trait Chipidza et al. list is trust. “Our [study] participants expressed a strong distrust of clinicians,” Halverson et al. state boldly, calling the statement “worrisome” and following it with numerous citations regarding the benefits of trust in clinicians: patient adherence to recommended protocols, accurate and timely diagnosis, improved continuity of care, and greater patient satisfaction. Clark, the Master’s student quoted earlier, describes what may happen when the trust between the patient and clinician erodes, in part based on her own 15-year journey to get diagnosed with hypermobile EDS: “This may even result in patients questioning their own sanity, experiences, perception, and identity. Perhaps even resulting in iatrogenic [physician-caused] anxiety, depression, or medically induced post-traumatic stress disorder leading to hypervigilance and future avoidance of seeking crucial healthcare due to past invalidation.” Clark may be referring to “medically induced post-traumatic stress disorder,” but these situations can also result in clinician-associated trauma.

As can be expected, most patients—85%—in the Halverson et al. study avoided clinicians they had negative or upsetting experiences with in the past. In fact, one woman, participant 150 (survey respondents were given numbers in order to remain anonymous), told the interviewers that she didn’t want to see doctors anymore, period. Participant 157 agreed: “I don’t want to keep going there and being made to feel like I’m crazy, or nothing’s wrong with me, or I’m a hypochondriac.” She called her clinic visits “a waste of time.” Indeed, why continue to see a clinician who doesn’t trust what the patient is telling them?

Halverson et al. found that one of the most distressing situations that patients with EDS, especially patients with previous clinician-associated trauma, find themselves in is meeting a new clinician “whose attitudes towards EDS were […] unknown to them.” Their previous experiences and resulting distrust of other clinicians caused this distress and anxiety. Despite the number of study participants who have created a team of clinicians that they could trust, several participants “still noted a sense of concern or even dismay at the thought of having to see a new clinician who was not part of this already-vetted circle.” For patients in rural areas or who have difficulty accessing medical care, this may mean staying with a clinician they don’t trust; there may be no other options available, furthering the trauma experienced by those patients. Even in areas with large medical systems, there may be only one clinician who specializes in a certain condition. If a patient doesn’t trust this clinician but still has to see them anyway, a perverse type of forced loyalty can occur.

 

Loss of Loyalty
The last of Chipdiza et al.’s traits of a positive doctor-patient relationship is loyalty—the patient is able to trust that the clinician will stay with them to help them navigate the ups and downs and will continue to collaborate with them in the clinician-patient relationship. However ideal that may be, sometimes it is far from reality. 

The beginning of this article mentions a survey given out to members of EDS-focused Facebook groups. (This was a different survey than what was given out in the Halverson et al. study.) One respondent, Callie, shared this story regarding her diagnosis and the lack of clinician knowledge and clinician loyalty that followed:

I began having major mobility issues, chronic pain, and fatigue around age 25. I sought out multiple doctors, and they all told me they didn’t know what was wrong. I finally received a diagnosis of hEDS at age 29. Since then, I have been seen by a multitude of different specialists who all tell me that they don’t know of any treatment options, and they pass me along to another doctor who says the same thing and then that doctor passes me on to another[…]

As with many of the other patient stories and comments in this article, this one could have been submitted by a number of patients with other subtypes of EDS, as well as by other patients with chronic and/or complex conditions and disabilities. Being referred to other doctors because a clinician doesn’t know what else to do creates a sense of hopelessness in many patients. As indicated previously, many patients want to consider themselves on a team with their clinician, trying to figure out how to live the best life possible. The patient places their trust in the clinician, and when the clinician seems to pass the baton when things get difficult, a profound sense of abandonment and disloyalty takes the place of that trust.

Though Clark writes, “I find much solace in a doctor who is prepared to admit if they do not know and refer to a colleague who might know,”  patients can also feel a sense of abandonment or loss, especially when the referral is done to hide clinician incompetence and fear rather than in the best interest of the patient. The patient can experience trauma when a clinician abandons them in the chaotic healthcare system.

The interviews in Halverson et al. show the traumatic effect these sudden referrals to other clinicians or dismissals from practice can have on patients who may have nowhere else to turn. For 73% of the people who took part in the study, using a referral or the relationship between the clinician and patient ending “more abruptly and finally” was seen as abandonment. One of the student participants (125) discussed how a clinician refused to return her phone calls requesting a review of test results. She gave up after a month but recounts the effect the experience had on her: “It was a terrible experience…it was actually really traumatic. I see pain and rehab psychology, and I talked about it a lot with [my therapist]. It was just to the point where it was really traumatic to keep thinking about [the test] and worrying about it and being overwhelmed by it.” As stated in a previous article in this series, how far has the medical system strayed from its intended goals that its already-limited resources are being used to treat trauma of its own making? How many patients are being denied care in mental health facilities across the United States because, like a snake eating its own tail, health systems are having to make room to treat the harm they’ve caused themselves?

Another result of these disloyal behaviors of referral and dismissal due to clinician ineptitude is having to navigate the confusing healthcare and insurance systems without a trusted insider. One of the respondents (116) in Halverson et al.’s study describes this feeling of desertion: “When she was told by a clinician whom she had seen for a while and had come to trust, ‘I really don’t know what to do with you. I’m at a loss,’ she wanted to cry out: ‘I understand that you don’t know what to do, but we can’t just leave me here like this!’” Again, this is a sentiment many patients with EDS and other complex disorders have wanted to shout at their medical providers from one time to another. Clark summarizes the heart-wrenching situation trenchantly when she observes, “[o]ften it seems it is the most complex patients who carry the burden of being left to figure things out for themselves in their diagnostic odyssey if their clinicians lack sub-specialist knowledge.” These patients are also the ones who suffer the most from clinician-associated trauma.

Conclusion
Ragen Chastain, author, activist, researcher, and board-certified patient advocate, often tells the readers of her Weight and Healthcare newsletter, “This may be your problem, but it’s not your fault.” While she is usually referring to issues larger people have accessing appropriate health care, the sentiment rings true with much of the clinician-associated trauma caused by fractured clinician-patient relationships. Despite the lack of regard, mutual knowledge, trust, and loyalty often not being the patient’s fault, the patient is left to deal with the problems caused by the absence of those elements in the clinician-patient relationship—problems that can cause great emotional pain and strife.

However, the clinician has just as much, if not more, responsibility for helping fix the relationship when it starts to turn negative. This can help prevent the relationship from becoming a new problem for the patient to deal with. Chipidza et al. conclude in their paper that “the doctor-patient relationship is a powerful part of a doctor’s visit and can alter health outcomes for patients. Therefore, it is important for physicians to recognize when the relationship is challenged or failing […] and to recognize the causes for the disruption in the relationship and implement solutions to improve care.” As the person in the relationship with the most institutional and societal power, it is essential that the clinician take the first and perhaps most of the steps in healing the relationship. Instead, many clinicians will blame the relationship troubles on the patient having a “difficult” condition, will refuse to have difficult communication with their patients, or will flat-out deny them care.

What would our healthcare system look like if, instead of being seen as difficult patients, providers saw patients with chronic and/or complex conditions or disabilities as difficult relationships—that, perhaps, both sides bring something “difficult” to the relationship? Would they be more incentivized to reflect on their own behavior? Clark, in another article titled “Help Me Trust You After My Misdiagnosis,” this time in the British Medical Journal, provides a list of ways clinicians can begin to repair their difficult relationships: “Rebuilding trust with patients […] requires time, compassion, and empathy. Ensure you are really listening to patients. Consider what it must be like to live with the symptoms they are describing. Be open and honest if you feel you might not have the relevant knowledge or experience to help them. Help us feel heard and respected by acknowledging our perseverance […].” In other words, assure the followin: the patient and clinician are on the same team; the patient’s knowledge is just as important as the clinician’s; the patient can trust the clinician and vice versa; and the patient doesn’t have any reason to feel a clinician may be disloyal. Not only can these actions potentially repair a broken clinician-patient relationship, but they may prevent clinician-associated trauma from occurring at all.

Kate Schultz
March 2024