Whose narrative is it?

Dry eye patients taught me about specificity of words and how perspective matters in clinical encounters.

She sweeps away a tussle of sandy hair so it stays above the headrest and does not disturb the microscopic examination. The warmth of her breath hits the transparent insert placed between her and the doctor--a COVID19 pandemic device. She continues to speak, even when she is told that speaking makes her eyes tremble and hard to examine. “My eyes have sandpaper rubbing against them. Other times, they water like when I peel onions.”

That’s the narrative that emerged from a patient. We heard the voice. These weren't some profound words from the wilderness of a desert. We chose to ignore, refuse to record those words as part of the complaint--no surprise there, God forbid we may sound uneducated if we write those words verbatim–doctors are used to subverting the patient’s narrative for one that is more familiar. The terms used in aged textbooks such as "grittiness" and "foreign body sensation'' certainly sound more professional. Off we typed into the patient's record: “She complained of foreign body sensation in her eyes.”

We could be wrong. Why do we fit the narrative to what we learn? Can it be that physicians only see the world through one lens, and they can only tell the story from one point-of-view? Will this process destroy empathy?

In the course of a career spanning more than two decades, I've heard many answers to this: We don’t have time. There are well over twenty patients waiting for me outside the consultation room. We've got to be efficient.

Is this about arriving at a diagnosis, or really about making a patient fit a pattern that is recognisable by a tired physician? You see, as a doctor, it is only understandable to try and portray the image of an expert. One looks foolish if he cannot tell what is wrong by providing a label. Wait a minute. So is making a diagnosis a form of stereotyping?

This is how physicians view the situation:

I know you'd like to describe exactly what you feel-- you say it wasn't stinging, wasn't burning, it sure wasn’t pain or blurring of vision, but you feel that your vision is not quite normal, especially when you had to read in the evening and get so frustrated. You saw something like...red blisters every time you close your eyes. The moment you feel the back of the head aching, things get worse. And guess what, it was okay for two weeks, then it started again the day before yesterday, when they finally started the construction work in the apartment next door…

Do patients really want to be given a label as a proxy for what they feel? Can human suffering or in fact any malady be simply described with medical lexicon? If so, what is the meaning of individualised care–a de facto admission that patients cannot be dealt with by a simple classification, that each complaint must be regarded as unique and personal? Maybe we don’t need to have a one word diagnosis for each patient that we encounter. It might be enough to hypothesize, to explain to the patient the process we suspected had gone on. This won't make us a failure.

Six months after cataract extraction and implantation of multifocal intraocular lens, the visual acuity of a woman was recorded as 6/6 in each of her eyes--as good as any other cases with satisfactory outcomes. “Doctor, my vision was kind of not so good in my right eye. I tried using night time gel for one month. Following that, I stopped the gel and applied a lipid-containing eyedrop for 3-4 months; and somehow, the vision in that eye seems to be normal again. Now, I'm here for this consult because the same thing is happening to my left eye. This eye doesn't feel dry at all; it's purely a visual problem. What is wrong with it?” The woman was biting her nails.

Well, one way to deal with this is to explain that she has dry eyes. Tear film disturbances cause aberrations which can then be perceived as visual blurring or disturbances. This narrative is sound but unlikely to be accepted by the patient because it clearly subverts what she feels and somehow appears antagonistic to her viewpoint. True enough, she strongly rejects the idea, because who in the right mind appreciates being told that they are wrong? "Why would the two eyes behave differently when they had been operated about the same time, had the same surgery and the same type of intraocular lens implanted?"

I approached this from another perspective. I said that human vision is a function dependent on perception--it involves interpretation of visual signals from the eye in the higher cortical centers of the brain.

In a young person with a normal crystalline lens, the eye can view a close distance after gazing at the distance using a process called accommodation. This required autonomic nervous system activation and smooth muscle activity which results in a change in the shape of the crystalline lens and hence its focal power. There is a temporal delay between viewing the off-focus close object and getting it focused sharply in our eyes. Our brains have been taught about this delay and are perfectly accustomed to it throughout our lives. What happens when the crystalline lens is replaced by a single-focus intraocular lens? A common scenario is to use a lens power that focuses the eye to distance objects. In order to read, the patient will put on a pair of reading glasses. This of course involves a delay, between the formation of the intent and the act of putting on a pair of reading glasses.

What happens when a multifocal intraocular lens is implanted? Because light passing through different zones of the implant is used to view near and distance objects, no delay is expected between the viewing of distance to close objects. This creates confusion in the viewer's brain, who has been educated his whole life to anticipate this delay. The perceptive confusion may manifest as a visual anomaly, which is further magnified by any optical aberrations during blinking, such as those due to uneven spreading of tears. What is reality but our sensory perception of it!

Can this hypothesis be easily proven? No, not in the clinic anyway. But is it acceptable by the patient? Very likely, yes. This explanation seemed long-winded and still invoked optical aberrations from sources like tear dysfunction. The acceptability of this explanation is due to the physician aligning himself with the patient: that the problem is firstly, a visual complaint. Had the explanation began with dry eye or tear dysfunction, we could easily arrive at the same outcome, but this reasoning would have been rejected by the patient. Clearly, he has already refused to entertain ‘dry eye’ as a causation.

Having aligned with the patient’s narrative, what did I suggest about the management of this condition? Well, sometimes the patient’s narrative can also help to formulate a plan of action. For various reasons, my patient has not attempted to treat the left eye in the same way as the right. I made a simple suggestion--repeat what was previously done for the right eye on the left one (the sequence of gel and eye drops).

Only time will tell if this approach has a satisfactory outcome, but experience tells me that any strategy that arises organically from the patient’s narrative has a greater chance of success than one that tries to straightjacket the patient into a category described in conventional medical textbooks. I've been pleasantly shocked at the outcomes of these sessions because patients expressed so much gratitude after I'd done so little--in contrast to their anguish with expert surgeons and physicians who had referred them--all I'd done was to tell their story.

With patient-centered care, I suspect such a narrative to be more compelling for the patient: The genre of the story is the contemporary, realistic world, the setting is the clinic. But the physician is at most a mentor character in that story, even if sees himself as a star. The protagonist of the story is actually the sufferer with dry eye, who is constantly trying to coexist with a living, evolving entity and not some static malady described by a term from the textbooks. The dry eye sufferer is like a protagonist living with a co-protagonist who has distinct values and a character arc. Conflict arises when there are barriers to the relationship. These obstacles may include autoimmune disease, neuropathic pain, psychological conditions like anxiety and depression; and collectively these represent the antagonist. The rate these obstacles appears to our main character determines the pace of the story. The motivation of the protagonist is to have a satisfying job and the means to enjoy time, activities and resources that maximise what we call ‘quality of life.’ When the protagonist first becomes aware of his dry eye--inciting incident--he leaves his ordinary world where he can work on the computer as many hours in a day as he likes and yet not suffers, to a new and challenging world. In the new world, the protagonist is trying to first react to the hurdles he faces, then to gleam at how to be proactive and gain agency to win. As long as the antagonist is in play, the conflict between the two parties ensures that the protagonist is unable to achieve his ultimate aim without some sacrifice. It seems not possible to permanently suppress or defeat the antagonist using sheer will of the protagonist alone. Each time the protagonist struggles against the odds and gets defeated, the plot thickens in what we call a try-fail cycle. However, when the protagonist fights against these obstacles represented by the antagonist, he will reach a turning point, when he will ultimately appreciate that working together with this co-protagonist requires understanding and adjustment in his life. So this is the truth, or the thematic material that underlies the protagonist-dry eye relationship. In a climactic moment of the story, accepting the theme is the only way to provide long-lasting satisfaction--the only way to complete the protagonist's arc for the story to resolve and end.