What’s in a Name?
Notes from a Family Meeting, Vol. 3, No. 12
“Out of the ground the Lord God formed every beast of the field and every bird of the sky, and brought them to the man to see what he would call them; and whatever the man called a living creature, that was its name.”
Genesis 2:19 (New American Standard translation of the Bible)
“When you contract an illness that the medical system can’t diagnose or cure, it feels like falling through [the solid floor of medical knowledge that every modern person takes for granted] into the basement underneath. But if you find a group of outside-the-consensus doctors who tell you not to worry, they know what they’re doing and there’s a good explanation for what’s happening to you, then even that basement can seem reassuring … It’s a hidden consensus underneath the official one, maybe not as solid, but strong enough to raise a ladder back to health.
If those treatments don’t help you, though, or if they only help you slowly and you start trying things yourself, and those things are associated with cranks and charlatans but also seem to work, well, then, guess what: You’ve fallen through the floor again … and you’re down in whatever is underneath the basement, down in the rag-and-bone shop, the deep underground, where the lights are flickering and you’re groping with your hands, feeling weird shapes in the half darkness, looking for the ladders but not sure whether they take you back up to normalcy or somewhere else entirely.”
Ross Douthat, The Deep Places
White coats gather ‘round as one of their own, guided by an attending, introduces them to a bundle of pathology. Their collective task is to sift elements of the history, physical exam, labs, and scans to diagnose the problem and, if there’s time, discuss its treatment. The object of inquiry is the story of a real patient afflicted with something interesting to stoke their learning. Who this person is doesn’t matter so much as what they have, flipping old William Osler’s adage on its head: “Treat the disease, not the patient who has the disease.”
Lakshmi Krishnan and Michael Neuss write that this aspect of a physician’s identity is captured in the metaphor of a detective:
“The image of a ‘half detective, half virtuoso’ remains central to the teaching of clinical reasoning, medical licensing (which tests clues-based investigative skills), professional identity formation, and the linear problem-solving of daily practice.
…
This paradigm reflects one species of clinical reasoning. In it, rare or puzzling diagnoses are paramount, not prevention or therapy, and clinical acumen reflects primarily our ability to solve a mystery. Through its focus on exemplary cases, it overlooks the many forms that clinical work takes, neglecting other pluralistic or quotidian efforts in favour of what Dr Gordon Schiff describes as ‘this heroic, lone ranger thing the doctor does with the doors closed in their office’.”
They go on to explore how this metaphorical part of the physician’s identity has been disrupted by the electronic health record (EHR). But let’s stick with this idea of diagnosis for a while longer. Krishnan and Neuss provide one way we think about diagnosis in modern medicine: the disease is hidden within someone’s body and clinicians sleuth through all manner of storytelling, physical exam findings, and technical testing to finally arrive at… a name.
Reading Names
Drew Leder described this practice of medicine that both precedes and involves naming with another metaphor. He said clinicians read the body like a text. The medical text, as he calls it, “is never just a disease abstract from the personality, life-history, existential concerns of the sufferer.” It contains several different parts:
The experiential text. “…medical help is most frequently sought when there is a felt sense of hermeneutic incompletion. The patient contacts the doctor knowing the full story has yet to be told … Hence the doctor is needed not simply to interpret the text but to help bring it into being.”
The narrative text. “The narrative produced is … the collaborative product of three different authors,” that is, the body, the patient, and the clinician. “The doctor … assumes primary authorial voice when speech is converted into writing in the chart.”
The physical text. “Now the patient’s voice largely drops out - the doctor confronts the body alone,” through the physical exam.
The instrumental text. Because the three aforementioned texts offer an incomplete story, “machines are employed to co-author a fuller story. … The body is assisted to speak forth in a variety of machine languages, its physiological processes translated into images, graphs, and numbers. … Here the disembodiment of the clinical text reaches its limit: the person-as-ill translated into a series of numbers.”
Leder saw a great advantage in seeing medicine this way: “…by acknowledging the interpretive nature of clinical understanding, we leave behind the dream of pure objectivity. Where there is interpretation there is subjectivity, ambiguity, room for disagreement. The personal and provisional character of clinical judgment cannot be expunged.”
So, these texts are open before a patient and a clinician. What guides their reading? Leder argues that these are read for the sake of:
Coherence. This takes the shape of the chart, in a concrete sense, and a diagnosis, in a more abstract sense. Coherence also guides the “reading” as sharp clinicians form differential diagnoses along the way, rather than shotgunning random tests.
Collaboration. “Throughout, the clinical encounter remains a multi-sided affair, a dialogue not only between reader and text but between at least two very active and concerned readers. Its success depends upon achieving a collaboration where difference and mutual understanding co-exist.”
Clinical effectiveness. Leder includes the obvious, and goes beyond it: “In medicine, unlike other hermeneutic pursuits, the ultimate object of application is the text itself. The doctor seeks not only to understand bodily events but to transform them actively. It is as if a reader studied a book’s style and meaning with the goal of taking over its authorship. If doctor and patient can understand the principles whereby the illness works, they can wrest the story from its malignant author and write a happier conclusion.” Howard Brody called this “symbolic healing,” which occurs when clinician and patient become co-authors in writing the patient’s story of health. Leder had written of the narrative text that “[t]he very telling of this story may have not only diagnostic but therapeutic significance. For it counteracts two primary features of illness that give rise to suffering: senselessness and isolation. … What was a private pain is now made public, what was senseless and random is woven into a meaningful tale.”
Leder also used this way of thinking of medicine to identify some of its deepest problems. Science strives to see the world as it really is. Medicine, being a science-using discipline, is tempted to do the same: “In immediate perception we seem to elude the vagaries of interpretation. Instead of decoding signs, inferring their meaning, we now see the thing directly before us. … Opening up a corpse, one seems to observe the disease itself. Gone is the dependence on the patient’s rambling narrative or the painstaking interpretation of surface signs.” He quotes Michel Foucault: “The living night is dissipated in the brightness of death.”
But we’ve even moved beyond that now. “Only when translated into numbers did the illness seem to take on a fully objective form. Quantitative data - clear, precise, intersubjectively available - escape the ambiguity and bias of the senses.” This leads use to conclude, as Neil Postman observed, that “we are at our best when acting like machines, and that in significant ways machines may be trusted to act as our surrogates.” This wasn’t all great, though, as it results in a devaluing of “the singular human capacity to see things whole in all their psychic, emotional and moral dimensions and we have replaced this with faith in the powers of technical calculation.”
Giving Names
Back to names. A diagnosis is just that: a name. You can see how names might figure into Leder’s metaphor, as we try to draw out of these various texts something, something worth naming. For a diagnosis isn’t just any ol’ name. A diagnosis is:
A useful name. A diagnosis should give us some indication about what to do. Even if there’s no treatment, that in and of itself tells us what to do: teach this person to cope with what can’t be treated. Eric Cassell observed, “Patients can writhe in pain from kidney stones and not be suffering (by their own statement) because they ‘know what it is.’ In contrast, people may report considerable suffering from apparently little pain when they do not know its source.” And so a name can be useful to patients even if it’s not useful for clinicians. When we name something, we can also study it: these things seem to hang together, what might be the cause? Who is most afflicted? What might prevent or alleviate the problem?
A real name. Hopefully, in naming, we’ve identified something real, even if most diseases aren’t concrete entities that you can reach out and touch like an apple. Cassell again: “Diseases do not have independent existence; they are not things like lungs or livers. Cancer of the breast does not have free-standing concrete existence, and neither does pneumococcal pneumonia or interstitial lung disease. Diseases are abstractions, conceptual entities that serve a
concrete purpose.“ A disease’s name identifies a disrupted relationship within someone’s body. So, for example, a heart attack is a disrupted relationship among the coronary vessels, a blockage, blood flow, the oxygen-starved heart muscle, etc. The diagnosis “myocardial infarction” describes what happens to the heart muscle as a result of that disrupted relationship. Other times, diagnoses describe things that are socially conditioned (e.g., homosexuality identified as a mental illness) or misidentify what’s causing the symptoms (e.g., a curse has caused this person’s plight instead of a bacterial infection). It’s comforting to believe that when diagnoses change, appear, or disappear, that’s the fruit of scientific progress. Other times it’s the result of shifting cultural winds. Things that were once “real” now are no longer real.An authorized name. Lay people are authorized to diagnose themselves with minor ailments: scrapes, strains, and sniffles. Not everyone is qualified to diagnose more serious illnesses though. Physicians (and those like them, e.g., physician assistants and nurse practitioners) have authority to bestow these graver diagnoses. They also have the power to withhold diagnoses, much to the frustration and despair of people who have collections of symptoms are regarded with suspicion by the mainstream medical establishment (e.g., chronic Lyme disease, long COVID, chronic pain). This authorized name permits access to new social roles, some of which I wrote about in describing the role of dying.
How we think about names in these ways is shaped by whether we view the one bearing them as a “lived-body” or a “body-as-object.” My lived-body is the entirety of my experience - all my sensations, thoughts, roles, and so on. My body-as-object is just that: viewing my body as the object of scrutiny, as physiologic processes or machine parts. The lived-body is similar to how I previously discussed one facet of health. But we get into trouble, in Leder’s estimation, when “the patient presents the lived-body for treatment while the doctor treats the … object body.” You can guess what most informs the doctor’s naming in that arrangement.
The importance of naming is much older than the detective novels of the 19th and 20th centuries. Naming, in the ancient story I cited above from the book of Genesis, was an instrument of humanity’s authority over creation. Given the naming conventions of the ancient Near East, a name likely represented something about the creature. This authority to name, then, was immense and mystical. Even if you don’t come to that story with religious faith, the impact its had on the moral imagination of entire civilizations is undeniable. It describes, as only these poetic stories can, deep truths about our longing for power.
But as that story makes clear, we’re not God. We can name, but our words can’t make reality (though they can come very close). We’re desperate to break the bonds of our subjectivity. We want a re-humanized healthcare system, but our striving for more objectivity ironically takes us further away from our own humanity. Scrambling away from subjectivity, we want to see the thing for itself. We want, if I can put it this way, to regain the mythic power of that first human to name things as they really are. No subjectivity, only authority. Ironically, though, in trying to hew a way back to that state, we have, as Leder put it…
“…led medicine away from the very real presence upon which it is founded: that of the living patient. … In its attempt to expunge interpretive subjectivity, modern medicine thus threatens to expunge the subject. … When the patient is dissolved into a collection of discrete data, dissected by competing technologies and specialties, the coherent overview can become increasingly problematic. So too with the question of collaboration. The patient’s own interpretations come to seem irrelevant, even misleading, in the face of an idealized gaze or set of numbers. … Finally, such developments often work against clinical effectiveness. Misdiagnosis, loss of trust, inappropriate treatment, non-compliance, may result when the patient’s voice is too effectively silenced.”
Knowing Someone’s Name
That system, so carefully tuned toward disease management, doesn’t feel designed for people. Despite all their specialists who know the parts of their body well, a patient may have no one who knows who they are. They’re squeezed between their insurance and a hospital’s billing department. They shuffle through labyrinthian referral processes. They languish in understaffed nursing homes. They’re baptized in the deluge of jargon from someone they hear was going to care for them. They submit their body (and, in America, their bank account) to a regimen they hope will help but often also hurts. Suffice it to say, clinicians often don’t possess sufficient, let alone abundant, narrative competence.
If we consider this in light of our earlier reflections with Drew Leder, we might say that rather than interpreting the patient’s texts in the way that honors them, the healthcare system instead wrenches them away to write a new story in a language produced by the system. “This is a patient” is, of course, a big one, but so too is, “This is a customer,” “This is a schizophrenic,” “This is a feisty one,” “This is a frequent flyer,” “This one is dying-but-won’t-accept-it.” Clinicians have not become creative authors nor are we gracious readers; we have a few canned plots into which we try to cram our patients. If they don’t fit, then they suffer Ross Douthat’s fate as he struggles with what he ultimately concluded was chronic Lyme disease.
Even earnest clinicians are jostled along at the insistence of systems that don’t have their well-being (let alone their patients’) in mind. Clinicians may feel themselves a part of a bigger, darker story, in which they joined their patients as mere batteries for a machine much bigger than they. Sure, they’d like to read the stories differently if they could, but they either don’t know how (who would have taught them?) or feel they don’t have the time.
We might find our way back onto the path toward health if we start with one small change: if we know our patients names. If we know our patients’ names, their real names, maybe we have a hope of knowing them. This starts by knowing their actual names, but it only starts there. What would it mean to honor their name as we seek their health? There’s a history there - most people are given their name by others. Even those who choose a new name do so because of a disposition they’ve inherited either from family or culture. Someone’s name, then, is an introduction to their life. Recognizing the importance of such life stories, Alasdair MacIntyre writes:
“I can only answer the question ‘What am I to do?' if I can answer the prior question ‘Of what story or stories do I find myself a part?' We enter human society, that is, with one or more imputed characters - roles into which we have been drafted - and we have to learn what they are in order to be able to understand how others respond to us and how our responses to them are apt to be construed.”
It’s not fair for clinicians to ignore this in the lives of their patients. It’s not fair when clinicians use their authority - either their knowledge of pathophysiology or the brute force of their office - to wrench the pen away from a patient. Nevertheless, clinicians are co-authors and co-readers, so we need to figure out how to accompany our patients toward health in ways that respect them. That doesn’t mean deferring automatically and mindlessly to so-called “respect for autonomy,” for autonomy is only one facet of who they are.
What can it mean to seek their health in the greater context of their own story? How can we read and write well in the clinical encounter?
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Family is a place for burdens”
What is the point of a family? Cultures throughout the world and throughout history have answered this differently, usually tacitly in how they live. Our present answer will be formed, or has already been formed, in how we perceive ourselves (independent, autonomous, able-bodied) and how we reckon with human frailty, vulnerability, and mortality. Leah Libresco Sargeant offers a brief, powerful rejoinder to those who would claim that families should avoid burdening one another.
“The harm principle, personal identity, and identity-relative paternalism”
Despite burdening this paper with a number of opaque terms that will scare off many readers, this author provides an interesting contribution in thinking about treatment over objection and honoring advance directives. If I’ve understood it correctly, we should honor someone’s decisions that impact their future self to the extent that their psychological connection with that future self is strong and the prudential and moral reasons for such are also strong. However, someone’s future self may be so far removed from who they are now that they’re effectively a future stranger, and therefore a person’s current decision should carry as much weight as, say, a close friend acting as a surrogate decision-maker. I don’t agree with everything in this paper, but this argument does highlight another weakness of advance directives.
I appreciate Jennifer Blumenthal-Barby’s careful analysis of the concept of personhood in this paper. We struggle to understand one another when we talk about personhood, so she recommends returning to more basic questions about what makes someone worthy of moral regard. While we may not agree on the answers to those questions, it at least clarifies our disagreement. Nevertheless, I think personhood remains a helpful concept to describe the category of being to whom we owe special moral regard. Whether that regard will extend to chimeras or cyborgs I don’t know, but rather than building a concept from the ground up, perhaps we could reflect on what provides the basis for such moral regard within our own human communities, whether you’re young or old, black or white, well or sick, rich or poor.
Closing Thoughts
She was Eliza for a few weeks When she was a baby - Eliza Lily. Soon it changed to Lil. Later she was Miss Steward in the baker’s shop And then ‘my love’, ‘my darling’, Mother. Widowed at thirty, she went back to work As Mrs Hand. Her daughter grew up, Married and gave birth. Now she was Nanna. ‘Everybody Calls me Nanna,’ she would say to visitors. And so they did - friends, tradesmen, the doctor. In the geriatric ward They used the patients’ Christian names. ‘Lil,’ we said, ‘or Nanna,’ But it wasn’t in her file And for those last bewildered weeks She was Eliza once again.
Wendy Cope, “Names”