Dismissal of bodily experiences and loss of trust (1)

Why talk about trust?

As some of you know, I have been going deep into reading on trust lately, including Ben Ho’s book and the collection of Onora O’Neill‘s lectures on the topic. Trust is needed in times of uncertainty and imperfect information–by definition, we don’t need trust in contexts of certainty and perfect information.

The reason for my deep, if plodding, dive is two-fold.

First, trust is increasingly implicated in the disappointing handling of the present pandemic as well as past and future public health emergencies. Heidi Larson, in Stuck, writes about the trust deficit that underlies much vaccine hesitancy: “Among the driving sentiments behind the current waves of vaccine questioning and dissent are a sense of lost dignity and distrust… those who feel that they are herded like sheep, treated as if they are expected to follow without questioning, that they have no voice.” Dignity/respect and trust work side-by-side.

Meanwhile, Ezra Klein just highlighted the role of trust-in-government in effective pandemic and emergency response, including quoting Bollyky on both trust between citizens and their government as well as between citizens themselves. Alan Levinovitz just riffed on unmet needs in health-care settings: for empowerment, for having our inherent dignity acknowledged, for feeling someone has our unique case and interests at heart. In effect, in a clinical or other health-care encounter, we need to be heard (that is, have our dignity affirmed) and build trust. Trust between health care providers (broadly defined) and public health authorities, clinicians and patients, and in multiple other health-related relationships matters.

Not all of these authors are saying precisely the same things (I intend to write more on each and these readings in conversation with one another in future posts) but they are circling around similar basic ideas and ties that matter in securing and improving public health. Ties that, in many cases, need to be shored up before the next emergency as well as consciously and carefully maintained throughout. The needs for trust-building communication efforts at all levels and for trusted and trustworthy intermediaries and interpreters are pretty stark. In this post, I will focus, in particular, on respect/dignity and trust in the clinical encounter, which echoes some of what Alan Levinovitz, and certainly many before him, have said.

Second, (lack of) trust and (dis)respect were at the root of my early personal experiences that drove my early professional interests and career, into medical anthropology, then health behavior, then health systems. It still gets me fired up today, as I think part 2 of this post will make clear.

I am pretty excited about circling back to my early interests and passions in two roles: (1) my role with the Mercury Project as well as my affiliation with (2) the Dignity Project. With the former, in particular, I hope that we will dig deeper into how we might–through better communication–re/build the trust relationships required to get folks to tune into trustworthy information, tune out of misinformation, and ultimately behave in ways that are consistent with the public’s and their own health. Getting shots-in-arms, masks-on-faces, tests-in-noses now is important because way, way too many people are dead and dying. But also, simultaensouly laying the groundwork for future responsiveness to public health guidance is essential. Routine needs are, of course, ongoing and the next wave and/or the next illness are certainly coming. The risks right now seem high that we will see ‘backsliding’ on things like routine vaccination on the basis of concerns raised about the COVID vaccine–but, equally, conversations about the COVID vaccine could be used to shore up vaccine literacy and broader public (health) trust. This could have been happening all along but hopefully there is still time and will and skill to do things differently.

The key, if unoriginal, thesis of this post is that if we are worried about misinformation and/or people acting in accordance with their own and the public’s health, we should be worried about clinical trust and dignity-affirmation. When we don’t feel heard, when we don’t feel we have agency, and our bodily experience is rejected by an ‘expert’ in the intimate context of the clinic, it can tear the fabric of trust. When trust is damaged or lost in a clinical encounter, it may lead us to seek open ears and shared experiences elsewhere. These sources may seem more trustworthy, authentic, and empathic–even if the information they offer, intentionally or not, is inaccurate. This mismatch is challenging and plays out over and over (see Hammer & Das on competence versus effort in clinical encounters in Dilli for one of many examples). This echoes the comment, above from Alan, on our actual needs and the clinical encounter and the consequences of these needs not being met.

If we are worried (and I am) about people seeking information from inaccurate–if empathetic–sources, then considering how to build and maintain trust in the clinical encounter is crucial as a bulwark against this and future public health emergencies (coupled with, if course, the urgency of making sure that people have true access to a medical home and can build these relationships to begin with).

Cards on the table: I’m not always wild about MD and other clinician behavior and my starting premise is that education / a white coat does not confer trust but that, rather, clinicians must work to earn and maintain trust in each encounter even though they may have superior psychological and pharmacological knowledge. Acting like trust has already been earned is likely counterproductive.

To this end, it may be useful–for me and I hope for others–to lay out some of my past and current health care experiences that have felt disrespectful and, as a result, frayed the trust I have in any one clinical encounter, even while broadly maintaining trust in the medical and public health professions (and to be clear, both my masters and doctoral degrees are from schools of public health).

Based on my personal experiences, I know that if I were a slightly different kind of person–a slightly different education, a slightly different set of parents, a slightly different valuation of how I spend my time–I can see how I might seek legitimacy, confirmation, and answers in the kinds of online or offline fora where so much misinformation (even well-intentioned) finds fertile soil and grows. Like many, sitting stripped down in a hospital gown, I have not felt heard and not felt respected as a reasonable and reasonably intelligent person who, while certainly not expert in physiology and pharmacology, is pretty tuned in to my own body.

My experiences are surely not as severe, persistent, insidious, or structural as what many people have experienced in the clinical context. I come into this conversation with a fair amount of white, expensively-and-interminably educated privilege. Nevertheless, they have been pivotal to me personally and professionally. I have wanted to seek information, confirmation, and healing outside the clinical setting and to understand why others do so. Personally, I have sought out some of the more mainstream ‘alternative’ treatments (acupuncture, supplements) to fill gaps in what I saw as insufficient listening and incomplete advice in the clinical setting. I could have tipped farther or another way and so have some sympathy and resonance who take the first step into the rabbit hole. It also gives me an intuitive sense, in addition to all the empirical evidence, that being heard and respected could go a long way in repairing trust that is so important at personal, public, and policy levels for health.

An aside: some communication theory from the waiting room

I only took one actual communications class in college (public speaking, which in my opinion should be mandatory) but had several friends who were comms majors. One of these suitemates took me to the emergency room one night when I had stomach issues, while also studying for a test the next day (yes she was awesome). Through this mechanism, I ended up getting a dose of comms in the waiting room. In particular that day, she was studying the ‘onion theory‘ of communication, aka social penetration theory. The gist is that we often build (or dissolve) interpersonal relationships one layer at a time: I peel a layer and then you peel a layer getting deeper and more intimate at a similar pace as we move toward ‘core personality.’ When the balance or speed of the back-and-forth is off, it can cause trouble.

As we discussed that night, and as have often thought about in the doctor’s office in the years since, the clinical encounter violates this theory in many ways: you have peeled off your clothes and then you are asked extremely personal questions while, at best, knowing the doctor’s or the nurse’s name and maybe something about their personality communicated through the flair of their scrubs or nametag bobbles. You aren’t necessarily stripped down the core of your personality but you are extremely exposed on the surface and discussing the working of your innards and your less-desirable behaviors. It is a very weird, vulnerable, and uneven peeling experience that makes efforts to build trust all the more important.

[The very smart Leah Perkinson pointed out that the idea of ‘unearned familiarity’ might also be relevant here, such as discussed here. Will aim to explore this more in the future!]

“Scoliosis doesn’t cause pain”

When I was in 7th grade, I was diagnosed with scoliosis. It was first noticed by my ballet teacher. Yuri had a thick accent and it took a while to understand what he meant when he said I had an ‘ump,’ noticed during a forward fold. ‘Like a camel,’ he clarified, and I began to understand. Perhaps it is this initial experience–growing up with (appropriately) hands-on teachers who knew a lot about my body–that still makes me deeply trusting of my Pilates instructors today and their insights about my body. These are also stripped-down experiences but so much more satisfying than most clinical encounters.

In any case, the observation came before the pain started. Muscle spasms, occasional loss of feeling in one arm. For 8th grade, I was fitted for and wore a torso brace. It was molded plastic with big velcro straps and various custom-fitted foam bumps inside to nudge my spine closer to where it was supposed to be. Maybe it would help me grow straighter, the orthopod said, if I wore it all the time. It was uncomfortable to sit in, digging into the tops of my thighs or riding up into my armpits. It was hot and horrible to sleep in. I named it Spongella.

The issue here, though, isn’t that I went through this, nor that I effectively ended my dancing career by having my full thoracic spine fused after 9th grade, freezing me at 5′ 5.5″ and a very low arabesque forever. It was the clinical encounters and how they made me feel. I was told surgery was the answer–but the full set of problems I was experiencing was denied. Yes, I blatantly had scoliosis and the spinal angle was worsening each year as I went through puberty and a growth spurt. These were solid reasons to pursue surgery. But I also had pain, spasms, muscle locks and it wasn’t clear if the surgery would do anything here.

The orthopod would make incredibly unhelpful statements: “Scoliosis doesn’t cause pain,” he said. Mmmmk. But then why was I in pain and, in turn, what was I going to do about it? The question was never answered. The symptoms and the primary diagnosis didn’t fit and that was enough for him to dismiss the symptoms.

And so, it was through the owner of the dance studio that I was introduced to pain-management options like acupuncture and massage and, through this, began taking Chinese herbal medicine. All of this helped; not enough to make structural change and stave off surgery but it helped to manage the pain and to turn me into a convert of acupuncture and massage. In addition to the actual healing effects of this work, I was treated like a human (to the extent that teenagers are, in fact, human) and my pain was acknowledged as real. This is an excellent way to convert people.

My ‘alternative’ explorations only went this far. But at a different point in the internet’s ubiquity, in my own development, or under a longer wait-and-see period before deciding to have surgery, all of this could have been different. And so began my visceral understanding of the importance of being heard and having one’s symptoms acknowledged and addressed in building trust.

Fear and diabetes in Winston-Salem

After I dispelled–through two undergrad summer digs–the idea that I was going into archeology, I settled more comfortably into medical anthropology and health economics. I was lucky in that service-learning was en vogue and, for class, I did both work (filing) and research at a local free clinic that catered to a poor and often undocumented Hispanic population. This was a clinic staffed but a pretty cool group of clinicians dedicated to the population.

I was steeped in early Kleinman–Illness Narratives–at the time, appreciating the structure in approaching the unfamiliar, the parts you could classify, lay out, and make sense of. That we’re rational once you dig in but that you need to ask the right questions to dig in. Both Kleinman and I have moved beyond this, into deeper narratives since then, but the orderly structure is still compelling and a useful starting point.

A key component of Kleinman’s earlier framework was the importance of etiology, that by understanding how a person understood how a disease began, from where it originated, we might learn something about the treatments and illness management they saw fit, that, indeed, fit with the narrative.

It’s a simple observation and yet I was struck about how much it might matter. My question was patients thought their diabetes came about. When I saw my son fall out of a tree, one said. When I saw a gun pulled on my friend, said another. Fright is a commonly understood cause of susto, a culture-bound iteration of diabetes (simplified). How odd it might be (quite separate from the difficulties of complying) to be prescribed diet and exercise as a cure for a severe fright.

The well-meaning clinicians doing the good work of practicing at a free clinic didn’t ask patients how their illnesses came about. They just didn’t think it mattered to their diagnosis and the disease-management plan they would recommend.

I don’t know honestly if it would have been trust-building to ask about the origins of one’s illness and to tailor the (explanation of) treatment accordingly and, if turn, this would have been so impactful to see it in high compliance and lower HbA1c. What I did learn is that the questions not asked in a clinical encounter are many and they might matter for patient understanding and follow-through on clinical advice as well as propensity to seek information elsewhere.

***

In the next post, I will dive further into dismissal and consequences specifically in the case of menstrual and fertility concerns around the COVID vaccine. Because I have both a lot of rant and a lot of receipts for this argument, I decided to separate it out. So stay tuned to “the vaccine doesn’t have anything to do with your reproductive system.”

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