Here I share a pixel-roll of recent clinic appointments in my effort to beautify clinical contexts. I then write about celebrating a clean bill of health "with no restrictions," relief, and perspective:
|Note the confusing "One Way" signage (above)|
|The clinic displays/sells artwork (above)|
|Camoflauged in the painting... |
or vice/versa? (above)
|Smiling for the camera (above)|
|Look Up to the Hills...|
from where my Help comes from...
just look up! (above)
|Levers N more Levers (above)|
|My favorite shirt + hat! (above)|
|Scary vials (above)|
|Happy people-like sentinels (above)|
|Flowers at front desk (above)|
|Meal w/my coupon for the clinician being late (above)|
|Ah, outside again (above)|
|Signifying the ironies and tension of "Care" (above)|
|Tweeted: Finally idle-free signs (above)|
|Veggie pakora + biryani rice to celebrate (above)|
Last year we had a scare with abnormal test results and an infection. This amid our on-going efforts to locate other enigmas with a series of tests and diagnostics. At least two friends told me to not worry as the infection would be gone and tests would be normal and I could move on with my life. Yet I worried.
Today as I photographed and reflected on my clinic visit, I find it entirely awkward yet fitting to say I've a "clean bill of health." When does that occur precisely? How do we locate, document, and pay for health? Just because we can locate and diagnose via lab tests does not preclude other possibilities, either. Who could divine when I was "better" conclusively and when I wasn't? Often it seemed clinicians were only willing to intervene with a diagnostic protocol based on their criteria and that of insurance companies. Rarely did I feel my concerns were addressed or a plan of inquiry concocted, save recently when I decided to go the nurse practitioner route. The inquiry became uni-directional with ex-clinician even submitting test results to me via certified mail. Have we gone that far to protect ourselves as a society? What happened to inquiry as a multi-directional conversation, equal participation, and input? Anyway why do I perceive a need for health to "move on with my life?" Why worry, be happy, right?!?
Yet the phrase fits... awkwardly. In a way health is something that costs us as a "bill," but more than that, here in the Western world health is denoted as a legal record that strives at all costs to be "clean." Health is that which is purveyed, dispensed, and directed. As for the human experience, we exist in a constant dual-bind, a state of flux between living and dying. Mortality awareness burns on our minds' backburner. This context persuades me of the need to transform health inquiry methods.
Legal records are more than "facts." There's an art to persuasion that need not be pitted against veracity, except in cases of social injustice. While veracity seems akin to authenticity, I prefer to frame authenticity in Rogers' (1989;1994) process of becoming. I become as I am congruent in thoughts, spirit, and deed. These, too, seem in movement, an ebb and flow, and almost in constant tension (to mix metaphors).
On documenting health, I do not proport that just because something is written, broadly conceived, such as photographed, that it serves as veracious truth. Nor do I proclaim that produced texts are fabricated or untruthful. Claiming either pole perpetuates the dual-bind. In any case, this text here cannot bear the burden of telling the experience exactly as it was; only as I designed it to be within the boundaries of the systems that I used to produce and share my experience.
Yet I can't help but feel pretentious if I'm trying to divine the veracity of someone else's experience as expressed in an art form. Does an art form possess the power to embody experience? Again, perpetuating the dual-bind here, and we're left with the descriptive or normative assumption that art is "supposed" to tell truth. I regard art as a channel that mediates, hence intermedia, experience relationally. After all, something privately shared or publically viewed takes place among people. Even if you only see a text yourself you still are a people, er, or a person more precisely. In other words, art texts communicate. "Co-" means "with."
Health as Inquiry Process
So understanding art texts such as photographs or blogs involves understanding the in-between, the inside/outside, the mindful/aware, or the reaching in to reach out and vice versa. When I visit a clinician, I'm asking for help. Ideally they want to help me. Yet help with what? Understanding one's own and another's goals, concerns, fears, desired outcomes, and pain requires the courage and willingness to draw near to the person, to inquire, and the wisdom to know that the inquiry process influences outcomes as much as it treats or mistreats, and I use those terms with dual-meaning.
Health via Frame/work
We learn not by favoring one frame or sense or text or discipline over another. We learn the purpose, process, attributes, behaviors, and skill sets needed or desired for a certain context and occasion. We apply our text prima facie. This ability to discern when, where, how, what, and why to apply a process and text for a certain context, situation, and purpose distinguishes "us" as a professional.
Humbling ourselves to locate our frames of knowing and understand that there are many (see Carey, 1999) defines us as conscientious. For example, we no longer conceive health as primarily physical, though we need our bodies to experience this life and to live. We exercise facets of ourselves, our emotions, hopes, dreams, relationships, ideas, and so on. We no longer see the "bio" as the predominant frame for health.
Yet within our profession we care for that, too. We can't reduce the bio in favor of the other frames lest we commit the same crime. Herein lies the body under the Tolerance bus. We forgot to mention that when shifting paradigms, we must recognize, as Hunter (1999) noted, that if we naysay the pitfalls of the primacy of science, neither can the arts serve as a primary text.
Health as Justice, or
Justice in Health
Justice assumes equity, or if not equity, fairness. It isn't fair or helpful to assert arts as better than what we've got now because it's the "only" way. Remember: Prima Facie. Hint: Focus on Dialogue and Process when considering Health Communication. More on that later. The imperative All is permissible, but not all is beneficial comes to mind. Note: Design systems that benefit.
What do these notions have to do with clinic narratives specifically, or health communication generally? Well for starters, I urge health contexts and professionals and constituents to conceive communicating health as a fluid and expressive process. Imagine: Gone are the days when clinicians are solely in charge of transcribing chart narratives; Arrived are the days when patients realize their contribution and become constituents and carers of their own texts.
This shift from uni-directional, top-down, and one-sided written narrative moves to a collaborative process where the constituent does more than verbally list chief symptomatic complaints. Healthy communication includes confirming someone as they present themselves to be (see Cissna & Sieburg, 2005). Doing so reduces the risk of inaccurate or harmful judgments. Allow the constituent to contribute a text for the health "record:" even better. The arts provide such a media. New are the days when constituents and clinicians locate their chief expressions with all frames, emotions, and desired outcomes attached.
In Western culture, remember, the written begets the legal. Gone are the days when people are containers for medical advice that they won't take and pills that they might take too much of. Recall that Freire (1970; 1994) and Solomon (1984) noted the pitfalls of treating people as containers of [disease]. That which we "put" into people in our language and process makes them so in our minds.
The legality comes into play when third parties make decisions that directly impact health experiences and outcomes and the public record, which impacts another person's reputation. The problem involves colonializing health by colonializing the text, or directing a health inquiry process with legal implications and outcomes top-down to a person without including their like-to-like input. Western culture reduces orality by elevating text as legal documents and in this context disempowers constituents. The "tell me your chief complaint and I will write them down" method makes the constituent dependent upon the clinician, which in Freireian terms, forces constituents to perpetuate a system that ironically oppresses them, or in the least is ineffective. I say ironic assuming that clinicians and health institutions want to help constituents and not merely monetize their suffering. Note that constituents exist at a power disparity the minute they contact an office schedule an appointment given their dependency and reduced health status juxtaposed to clinicians as experts.
Health as Perception
How we perceive and convey this process in art form, such as this clinic narrative in the form of an intermedia text, expresses our impression of our identity, experience, significance, or just a curious penchant to photograph as a means to explore and learn.
Arrived are the days when we understand health as perception because we know that it's improbable to locate what is needed for health without perception. Perception breathes soul: As I think; therefore I am. With this statement we locate uncertainty by recognizing our perception, thereby making ourselves certain. Therefore, the philosophy of art includes mediating the doubts of our perception amid the certainty of our design. I do not prescribe to reason as a primary frame, but acknowledge the human ability to think, reflect, feel, and communicate as human.
Performing health bears moral implications for praxis (Chvasta, 2005) and participation (Russell, 2004): Application and outcomes matter. Key in performing health narratives, as with narrative, is the interaction (see Chvasta, 2003). Here's where the digital helps. Beyond that, communicating health is not a passive noun outside of us, or health communication, or an object to locate, or a void to fill, but a Discourse. Discourse and Method. How we think, value, choose influences how we design health systems. So address such Discourse and Method.
Health as Realizing Intent
Note that performing health involves a process of realizing intent to produce aesthetic text. People’s artistic intent and interaction with a text and public constitutes performance (Conquergood, 1983; 1985; 1998; Pelias & VanOosting, 1987; States, 1996). Such intentionality broadens Mattingly's (1998) observation that healing involves reconciling unmet expectations. Is it feasible that people heal, at least psych-socially, which impacts physiology, via realizing their intent to produce a creative text about their experience? That remains the question.
Part of that humane process means finding ways to mediate fear. If it's true that humans are enslaved to fear of death, and that clinical contexts serve as a death reminder, thus increasing fear, then it serves us well to consider how to make contexts more hospitable to people's more comforting emotions. If it's true that fear distorts experience as divided, then we're well served to address and mitigate fear. Access my thesis reading list for the theory behind death terror and mortality awareness.
For that we must design sane processes, and as Einstein observed, insanity is trying to do the same thing over and again expecting a different results. Insanity is duplicating what doesn't work expecting it to. This is why a "record" or "representation" motif for health texts won't and doesn't work. Texts, as Phelan (1997) observed, reframe, and not reproduce, publicly, which makes said texts political. So what does legality have to do with health? Everything if we want to create humane inquiry processes that confirm the constituent and result in agreed upon outcomes that signify health.
Clinic narratives are political, too, or in the public realm. This political nature need not reach fear when considering public health. Each person, each outcome, together leads to public health, and the numbers speak, especially in terms of health disparities. Can a new way of communicating and inquiring for health change or improve public health and reduce health disparities? Too soon to tell, but perhaps the texts can, with a bit of foresight, inform and challenge and persuade culture to prescribe an inquiry method that better involves the constituent.
If we want different results in health/care, then we must find new ways to communicate and deliver health. On that we must find a starting point other than the problem. Again, Einstein, who, put positively, said that we solve problems by starting at a different conscienceness than the one that created the problem. Problems beget problems. If we're struggling with compliance and lifestyle management, if we're not improving our mortality rate numbers, if we're experiencing health disparities based on class or race, if we're drowning in litigation, if we're ill at ease, then we've a problem bigger than changing our list of what questions to ask in our 20-45 minutes. We must change our paradigm for how we communicate health and for what purpose.
The Role of Narrative
So health narrative involves inquiring from the position of knowing a person to locate their fears and frames to mediate fear and make an alternative pathway. That sounds too lofty. Put more simply, narrative health helps us to better understand each other, and with that, our desires and framework for health. Does this method save a life? Maybe it does and maybe it doesn't. It does if you have a shared burden and consistent method for narrating charts together. It does if you shift paradigm from survival to thrival. Aim higher. Perhaps by conceiving health and constituent as a resource, too, then we by thriving, survive. If we want humane process, then we must embed what is human in the systems we design to locate and deliver health.
Intermedia texts, these clinic narratives, show a glimpse. The images don't show all the people, relate the sounds, the beeps, or the questions through the walls. They don't show a radiographic image of my prayers and worries that took place inside my head, or even the clinicians themselves. I've often concerned myself with how to include them in the frame because I make them invisible or show only my side of the experience via my presence and their absence. However, there's some truth to that because I return home and go about my business with latent tests on my mind for pert near a year. Where is the clinician then?
Perhaps we're better suited to define understanding as compassion and process. Perhaps we can ask, What do the texts show? Who do the texts embody? Sometimes you can know such answers only by asking the author. I remember well way back in undergrad days an American literature course. An "about the author" section introduced each entry. We were required to read those sections, but seldom anyone did. Oftentimes, I understood a text by learning the context, the author's life, beliefs, etc., and then interpreted the text through that filter or lens. Arrived are the days when both parties value their communicated and recorded contribution to this process we call health care.
So documenting process for clinic narratives helps. For instance, I deliberately added warm hues, yellow and magenta, by adjusting the color temperature in software, or digital photography's photographic darkroom. Was I trying to show you an "accurate representation" of the weather or light? No. I wanted to convey the hope that I wanted to feel, or that I wanted to make clinical contexts less fearsome and more hospitable, warm, and dare I say, happy. I created my own foil to my experience and in the end, the good news of the day, that I "had" a "clean bill of health" (there I go again), gave cause to celebrate. Is health something that you possess, or something that you are? The images look more as a birthday party without all the fixins, or with a medical table (without the stirrups!) and a syringe container instead of cake and candles.
These images as foil present this clinic narrative in irony. The irony itself teaches us what I want differently in health communication and reveals my attempt to reconcile expectations for healthy outcomes, or "normal" lab results, with my other experiences of not being listened to in clinical contexts. Learning about my background provides a lens to process this "sigh of relief" as in tension with a larger concern at hand: transforming health communication.
In the future I'd like to find a way to include clinicians and staff in my clinic narratives. When speaking of health communication and medical anthropology, it's something that we do and produce together, or at least it should be. Here is where faith comes in. Faith (ah-hem, or amen) need not contradict science nor should it have ever been pitted against it. Basically, faith is finding that which you hope for, and living in light of that finding as though the hope were realized.
Of course you are aware that it is not yet realized; otherwise, hope would not be hope. Yet you act, and the action is the substance that is faith. To put more simply, you learn to ask for what you want and then live it. If you are [insert your hope] healed tomorrow, then you will be [healed], and if you will be, then you are. That's not to say that faith heals because I know some faithful people who still died and then I'm in a corner reducing other's experience. Mainly let me liken faith to locating and imparting direction.
I know someone, a pretty neat guy, who inspires a lot of people. I thought of him often this week. He is in a process of healing. His attitude and cheer knock me on my butt in a good way. People who love him cheer him on and they share life energy. Positive and upbeat. I know that living a full life is available no matter what. I will say I desire health as a resource because there's much I want to do. But become too preoccupied with this bod, and it contains me. It contains me because that's what idols do. Inhale to exhale, and I live. Attitude does not defeat death in the end (only Jesus alleges to do that!), but it sure helps to impart life. Thanks W. for teaching me this lesson!
In any case, much of academic study involves locating, documenting, understanding, and communicating process. Discovery-driven research involves envisioning the future and seeing that text inside your forehead and then holding that image outside for all to see and ahead of you for perspective and direction. Such is your course, and you chart ahead. Again, dual-meaning. I just indulge sometimes!
Anyway, I'm about finding a documentation process that invites people's whole person to dialogue. Dialogue means reaching in to reach out and vice-versa. To know peace you must first be at peace. To tolerate, you must first know what you stand for and who you are to identify what differs. To care, you must inquire to know the person as how they present and conceive themselves to be.
I Write; therefore, I am
Writing, broadly conceived, provides one process to dialogue. Dialogue benefits intercultural communication, cross-cultural psychiatry, and health. If we define clinics as the context for intercultural communication, where the cultures are that of clinician and constituent, then we see the context in terms of a system's perspective. We see that how we record others' experiences does not necessarily convey their meaning or situation, nor does it proffer access to a powerful resource in a situation where their health status may preclude them from other gains in life, but this is a topic for another time.
Sufficed to say, I advocate developing interdisciplinary partnerships in medical education that employ narrative, intermedia, and arts-based methods as learning and appraisal methods and medical education impact studies. Narrative methods dialogue with others and constitute a form of reflective and even therapeutic learning. Therefore, if we want to implement humane and effective health inquiry and delivery, we must start with teaching such frameworks to those culturally normalized to deliver health, such as clinicians, and invite others involved in public health to participate, such as arts/humanities scholars and learners, hospice directors, community service or church organizations, and so on. For health communication reform to succeed, we need to transform cultural values and norms for health. Again, here writing and the arts aid.
Clinic Narratives as Dialogue
For now, I suggest that clinic narratives as Dialogue mean embracing a process to learn someone else's paradigm to locate what they want while expressing your own paradigm. A paradigm is, to oversimplify, a way of framing an idea or situation. I encourage clinical contexts to consider how to integrate arts-based methods as viable and relevant legal texts for their inquiry.
This paradigm for health communication provides an answer to the question, "How do we involve patient [constituent] experience in our delivery of care?" Intermedia puts the texts together and shows how interact and enlightens process to demystify texts not as reproduction, reality, or even reframing, but explains the intent behind the expression. For instance, this text here and the captions explain my paradigm and humor behind the scenes of the images that you see. So you note that while we can interpret texts, the interpretation varies and limits.
Transforming Health Communication
The important theme: I'm responding to the clinical chart inquiry method with a method that I believe better presents than another person transcribing my chief complaint on a chart to be housed in their office and used for medical decisions on my behalf. I do not give permission to others to be such an advocate. I prefer to, again, like-to-like or legalize my text for what health inquiry process I want. Observe that the psychology of complaining starts us on a negative footing and criminalizes me and burdens clinicians with the unrealistic, or too uni-directional, responsibility to rescue constituents from illness.
I want to transform this norm by discovering answers to the following question: What will it look like if we develop an inquiry method for clinical contexts that normalizes the constituent embodying her health experience and desired outcomes in a legal text in collaboration with the clinician or health inquiry contact? I want to discover if/how narrative, intermedia, and expressive arts-based methods provide such a change. I am persuaded that we need such change before we write policy on who pays for what. Such logistics are one carrot that motivates the horse to pull the wagon. We need to order and improve our health inquiry method first. Otherwise, we risk supporting a broken system and fallaciously behaving as though money is the only--one, yes, but not only--point of access to health/care.
Coda: Health Inquiry as Justice for All
So why is transforming health inquiry important? Health is justice, and systems' thinking reminds us that people are situated within a value-laden system designed by other humans for potentially other purposes or paradigms for health that may differ than that of... yours. Do you feel confident that your clinician "documented" your chief complaints and health goals accurately? Have you read your chart? Do you know how to access it?
Here the privacy act impedes social justice in health by making it more difficult for constituents to utilize communication technology and instead resort to wasteful and tedious methods such as signing a paper and faxing it every time you want to see your chart. This method treats health inquiry as waterfall instead of the iteration that health inquiry should be. We are in constant state of flux in our health and development. Therefore, we need a health inquiry method that allows each party to fully participate within their capacity and be able to access and update their legal health record as needed or desired. For instance, digitize records for multiple location access via mobile app and web-based platforms that allow each participant, including the constituent, to participate. Encrypted technology fares far better than a stack of paperwork with privacy protections fit only for an Enron-sized shredder.
It's unjust for clinicians to be the sole participants in creating your legal health record. Once a clinician wrote in my chart for other clinicians to question my presentation. Imagine the negative outcomes for me when describing my chief complaints to people biased to their peers' assessment instead of dialogically inquiring directly from me, the client whom they will then charge $300USD for their 20 minutes of fame at my expense, or my disconfirmation and dismissal.
Another clinician cut me off mid-question and replied, "You seem to be overly focused on your health." I felt perplexed as I had prepared a few questions regarding our appointment. Isn't that the point of health inquiry? To focus on health? To ask questions, develop a strategy, and inquire for desired outcomes? Don't clinicians want their clients to concern themselves about health? Why do I hear clinicians complain about lifestyle issues and the need to "educate" clients? In this context I'm the "ideal" patient if there ever was one, although in my mind an ideal patient is not one, but a constituent who can move forward to an empowered place and move on from a past of illness.
Remember that healing takes place in a context of a trusting relationship. For this reason health inquiry requires an ethos, or credibility, of social justice for all. You can't deny the value of trust or isolate yourself from the interaction. If you do, clinicians may naysay you for your attempt to "self-medicate." Yet I digress. I want to collaborate with clinicians and not alienate them. Such is the pattern of degenerative conflict.
On that Blackall, Simms, and Green (2009) provide a way to respond to stalemates by redirecting and negotiating with constituents via inquiry intended to rebuild trust. So retool clinicial interviewing methods via proven social scientific fieldwork for asking open-ended questions and other listening behaviors (see DeGraaf, Tilley, & Neal, 2004). Refer to Denzin (2003) for his comments on relationships as the context for inquiry and credibility for ethics' review.
Medical charts inform decisions that directly impact your health outcomes. Your health comprises public health. Therefore, health communication in allegedly private settings is not in effect private, for those charts go beyond that clinic room to persuade people to approve or disprove care, or worst, your mental or fit merit to present your health case.
Designing a multi-input health chart via communication technology may benefit outcomes at least with a legal record of the constituents' wishes and a consistent record with a feedback field that can correct errors. For instance, a clinician wrongly wrote that I was allergic to amoxicillin. No, I'm allergic to codeine and sulfa. Imagine if I was unavailable for comment and clinicians tried to administer said drugs in an emergency resulting in increased cost and complications. Imagine better if a constituent can log in to their chart and in a field box input the correction, an input which then would notify the clinician of the change. The clinician and constituent can manage their privacy and notification settings to whatever device or email.
Now assemble a team of people to develop this epic story and we've a new chart method that also reforms health inquiry as we know it and, ideally, benefits people by improving outcomes, satisfaction, and reducing cost, especially of errors or litigation. Collaborate with partners who can link diagnoses and outcomes to web-based research accessible by all contributors, and not just a paid-for subscription for clinicians. Finally, a constituent will feel listened to because we've designed an inquiry system with the value of listening and feedback embedded in its core requirement of mutual inquiry, contribution, and access.
In short, the human is the first point of entry to communicating and delivering health. People deserve the right to contribute to their own health record and be aware of how that health record will be used. Standardize such a research protocol for informed consent. Disclosure, too, on what information will be recorded, how it will be used, and legal implications builds trust.
Overall, constituent contribution is what I refer to as voice. I desire to support and develop narrative health to embed human value in inquiry systems with hopes that such will result in more humane process and beneficial outcomes. Such aims are doable in this day and age with available technology and creative scholarship.
Btw, I employ conceive a lot. That's intentional. It's a life-giving verb. I believe we can up the bar in health delivery from treatment to life via communicating and processing health inquiry as mediated by texts we design for a know-the-person purpose. If we create texts that show who we want to be as who we are, then perhaps we bridge the deficit of disembodied texts. Perhaps we deliver health by communicating wholeness. If God breathed life by saying "be," then perhaps there's something to designing communication processes with a bit 'o life breathing in them.
Breathe that Sigh of Relief
In the meantime, celebrate with me! Breathe that sigh of relief (if nothing else that you finished reading this lengthy post!). Do you see the life ahead just around the bend? It's an open road! Was it always? Just remember to, as a wise professor once told me, begin with the end in mind. How you design a system informs outcomes. Still confused or want to learn more about narrative health? Access my thesis, research, and review my paper on envisioning co-created chart inquiry as health/care.
What say you? How do you envision intermedia texts as contributing to health inquiry, outcomes, and/or reform?
Thank you for reading,
Blackall, G.F., Simms, S., & Green, M.J. (2009). Breaking the cycle: How to turn conflict into collaboration when you and your patients disagree. Philadelphia: ACP.
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Chvasta, M. (2003). The mediated life; ‘And I loved her’. Unpublished essay. Retrieved October 26, 2010, from http://www.cas.usf.edu/~mchvasta/luckydip/mediatedlife.pdf
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