From Machine to Medicine
Walking through Notes from a Family Meeting
As I enter the third year and fifth volume of Notes from a Family Meeting, I wanted to connect some dots among the issues that trace a common theme.1 This theme, as best as I can now summarize it, is humane presence and practice in the medical machine.
None of this suggests I’ve finalized my thinking in any way. I want to instead make more apparent how these details fit together (if they do; my path has meandered quite a bit), and test the strength of any connections that already seem obvious.
Last updated: 23 September 2024
I believe the purpose of medical care is to sustain and restore health. Defining health is a challenge, but one critical for our time when medical technology has become unmoored from this purpose. As I wrote, it’s not the mere absence of disease, it’s not whatever’s normal, it’s not the WHO’s definition, and, controversially, it’s not whatever someone wants. Objectively, relying on Leon Kass, health is the well-working of the organism as a whole. Subjectively, relying on Hans-Georg Gadamer, it’s the ease with which one is at home in the world. As I’ve made my way here, I’ve returned time and again to test my reflections against this understanding of health. What serves to sustain and restore health, and what doesn’t? What do we focus on instead of health? Why?
Medicine has three ways it can intervene on the human body to sustain and restore health. It helps people to live longer, to do things (e.g., walk, graduate from school, see), and to be more comfortable. When one is well, one need not consider these; no trade-offs are necessary among these goals for minor, temporary ailments. However, when one is seriously ill, trade-offs are inevitable. This is the existential reality of medical care: it’s limited, and may even harm. The goals of care become the limits of medical intervention. Keeping these in view help us to appreciate what medical care can accomplish - wonderful things! It also acknowledges the limits of medical care. Perhaps health involves more than those things upon which medicine can intervene?
In the abstract, health and the goals of care might seem so obvious. In the real world, however, they’re elusive amidst medical technology, difficult decisions, broken relationships, and tumultuous emotions. Wisdom is one quality clinicians need to discern and pursue health via the goals of care. Wisdom involves knowing the good of things: what’s good health? What’s a good physician? What’s a good nurse? In the words of Michael Sacasas, “We’ve gone from creating tools to accomplish what we desire to desiring only what our tools can accomplish.” Wisdom helps clinicians to resist that deforming influence by keeping the good of humans in view and humbling clinicians under humane limits. How do we cultivate it?
Some have in mind other purposes for medicine. One such purpose, increasingly popular across the world in various forms, is death. Can death exist as one goal among longevity, function, and comfort, or does using medicine for this purpose change something about the entire practice? Relying on the work of Farr Curlin and Christopher Tollefsen, I argue that the virtues required to engage in medical practice in pursuit of health are different than whatever qualities might be necessary to end the lives of one’s patients via assisted suicide and euthanasia (ASE). What does this do to the practice of medicine?
The other use toward which medical technology can be aimed is enhancement. Relying on Joseph Vukov, I try to complicate the binary question of whether we should or should not seek enhancement. If we stop with that question, we’ve already settled it because we already engage in a great deal of enhancement! But should we? How do we handle enhancements well if we so often struggle to handle therapies well? What resources exist to guide us along the way? Ultimately, I argue that the clinical encounter usually isn’t the appropriate place to consider enhancement, though I don’t rule out enhancement as a possibility to pursue in other venues.
The idea that death could become a goal of medical intervention has political roots. To claim that a desire to end one’s life is merely an individual choice is to overlook the important link between the cultural milieu of values which form us (and which our individual choices form). “For our society, the chief value is individualism. If one is unable to express this, death is ready at hand to give final expression to it and avoid becoming a burden, the greatest sin of such a society.” Reclaiming a shared understanding of dignity, as articulated by Daniel Sulmasy, might help to reorient us toward those interventions which are appropriate and contribute to health, and those which are wrong and harmful. What stands in the way of embracing a shared conception of dignity?
One concern many people who avail themselves of ASE is that they’ll burden those whom they love. Perceived burdensomeness is itself a risk factor for suicide, something we otherwise try to stop. Relying on the work of David Velleman, I observe that the mere offer of the choice to die places the recipient in the position of weighing their life by whatever scales our society provides them. If we reframe the talk of burdens, we might instead help people to live. What kind of culture do we want to create here?
Part of what makes technology so slippery is that it rarely only has one effect. Among the many effects it does have, it rarely operates only in one space or plane. For medical technology, this means something intended to have an effect at the level of a cellular process may also influence patients psychologically, socially, financially, and even spiritually. Relying on the work of Neil Postman, I highlight how technology obtains a sense of agency with which we must learn to contend. What do clinicians and patients need to perceive and handle the pharmakon to medicine?
In speaking with many clinicians, you might think that medical decision-making merely involves providing the right information to the patient and they spit out their response, like entering a query into Google. Not so. Medical decision-making is highly sensitive and, in today’s hospital and clinic, particularly sensitive to the influences of technology. What would it look like to choose better now?
In an attempt to wrest back medicine from its biological reductionism and recover a more holistic appreciation for health, calls have gone up in favor of “caring for the whole person.” Such a rallying crying has occurred at a time when clinicians give greater deference to the “autonomy” of their patients. Relying on the work of Jacques Ellul, I note how the ever increasing pursuit of efficiency for its own sake insidiously supplants an earnest support of the autonomy of patients. Therefore, “whole person care” becomes totalizing care; medicine that surveys and intervenes upon every aspect of life. Health is lost in the shuffle. What does it look like to honor a person in their entirety without subjecting them to the totalizing influence of medical technology? Is it even possible?
In this issue, I delve deeper into what medicine for the sake of autonomy becomes. I wrote, “Severing health from the practices of medicine is one attempt to continue the broad work of this Enlightenment project to free the individual from the constraints of institutions. In so doing, we hope to give medicine to individuals to do with what they will. It doesn’t work out that way. In attempting to set ourselves up to do whatever we want, we actually become enslaved to our own techniques and technologies.” This doesn’t mean we disregard autonomy. Rather, clinicians and patients must come together to discern how best medical technology can serve health. How do we come together to situate patient autonomy in a broader landscape of values in medicine?
Ancient people believed stars were heavenly beings. Some meant humanity well, but some would lead people astray. We may not share those beliefs anymore, but sailors and dreamers alike know the truth: stars can lead you home or straight into the rocks. Knowing how to read the stars requires a careful and particular form of attention. The machine of medicine stunts that attention and now we’re lost. What have we seen in the daylight? Where are the stars leading us?
Relying on the work of C. Thi Nguyen, I reflect on how the gamification of medicine is one way clinicians can be distracted away from health. Games are, of course, alluring: they “flatten the existential hellscape of real life,” to quote Nguyen. This means we’re tempted to avoid real life situations that aren’t like games, or to gamify real life. This fits well with the hidden curriculum of technique (Ellul) and technopoly (Postman) already ascendant in medicine and broader society. Gamification serves bureaucracy and technology well. Should we stop playing or change the game?
One of the consequences of poor attention while wielding immense power through deeply formative tools is the dehumanization of oneself. This is readily apparent when real people enter the “uncanny valley,” the revolting almost-humanness that robots sometimes inhabit. Human clinicians can embody in their own being the mechanical grasping after efficiency and others see it in their faces, hear it in their words, and feel it in the presence. Leaving the uncanny valley begins by seeing differently. What lures us into the uncanny valley, and how do we find our way out?
The electronic medical record (EMR) is a major instrument in the formation of clinicians in the uncanny valley. “It teaches us not only what to think but how to think. We really do come to see our patients as bundles of problems because that’s what we spend half the day writing about. I doubt the EMR is teaching anyone to be an evil clinician, but insofar as the aim of medicine is health, it might be teaching us to be bad clinicians, if caring for the EMR distracts us from caring for the patient. We become more skilled in clicking than comforting.” We need to ask different, better questions of our tools, like, “What is the EMR for?”
Put a different way, one consequence of poor attention in this context is a curiosity bent toward deficient questions. In the world of efficient questions, clinicians follow after the Dodecahedron: if the answer is right, who cares if the question is wrong? But questions set our frame for thinking, our trajectory for exploration, and, if unanswerable, form us in ways as deeply as the answers themselves. The types of questions we ask also reflect the stories we see ourselves inhabiting. Therefore an appreciation for the narrative in which we’re living is critical to discerning whether that story is not only true, but good and beautiful. As I wrote, “If bureaucracy and the technical identity are insufficient for helping people pursue health, what’s the more compelling story that helps us ask more compelling questions?”
One way to begin considering different questions is to consider how one even conceives of inquiry. Relying on Thomas Aquinas’s understanding of studiositas and curiositas, I highlight the moral valence of inquiry. Cultivating the virtue of studiositas is a massive challenge when the entire clinical environment and much of medical education militates against it, so I drew on a few different voices to make suggestions about how we might even begin. “What a privilege to be here, now, with these people, tasked to help and accompany them. What testimonies of human resilience, hope, and love will we behold in such moments? To the extent that we feel we can’t do that because of one reason or another, can we find the resolve to want to do it? Can we even want to want to do it? Can we find the wherewithal to attempt to hold the space so that such wonder would be possible?”
Whether they’re asking questions or making statements, clinicians can have many different uses for language. At least two include either enclosing on a particular outcome (usually a diagnosis, but sometimes nudging a patient toward a decision), or making space. Why make space? What inhabits the space? Relying on Margaret Walker’s essay on ethics consultation, I reflect on these and other questions.
Instead of learning to ask better questions, clinicians and clinician trainees may be fooled into believing that medicine is merely a technical exercise. Certainly our testing paradigms reinforce the belief that intelligence is what makes a good clinician. Relying on C.S. Lewis’s articulation of head (cognition), belly (urge), and chest (virtue), I argue that medical education de-emphasizes (or neglects entirely) the development of the “chest.” Warren Kinghorn and colleagues provide a path forward in how we might begin to orient ourselves properly in the moral development of clinician trainees, chief among their suggestions being learning from well-establish moral communities outside medicine (e.g., religions). I add that “Perhaps what’s needed isn’t just that the medical educators reach out to these moral communities, but also that leaders within these moral communities reach in to the world of medicine to testify to a better way of seeing the world and other people.”
Medicine is not science. If not, then what is it? Relying on the invention of the blood pressure measuring machine, I track the relationship between science and medicine with Thomas Kuhn as a guide.
Medicine, ever striving for more power over the human condition, is a form of magic. Everything we know about magic from stories of old gives us lessons about how to use magic well. “Whether we call it magic or science, the endeavor has been the same: to understand and harness the power of nature.” We have so many stories about magic not only because it’s fascinating and makes for an entertaining tale, but because magic is endlessly underestimated. Why?
One way this might forced, simply out of desperation for patients and clinicians alike, is in our hoping. The machine makes certain hopes possible or even imaginable, and therefore resists other types of hope. The failure to account for one’s own faith makes the handling of hope dangerous. The answer isn’t to re-apply technique; perhaps the answer is to listen to those communities who have walked by faith for millennia. Not so that we can find the right way to “hold hope,” but so that we can remain human as we engage repeatedly with suffering under the formative influence of the medical machine. How can we hope?
In addition to asking better questions, clinicians of a living medicine perceive the narrative basis of their work through metaphors. “Our patients didn’t choose their affliction, and as they scramble for words, they often don’t choose the metaphor that fits. It takes trust and humility to walk into an unfamiliar story, not sure of what you might see or learn there. You might even find yourself changed. But you can’t know that at the beginning. At the beginning, you only know you’re setting off somewhere else. Although our patients often come to us, we’d do well to recognize that whenever we meet them, we are always setting off somewhere else: into their story for a few moments.” What resources do we need within ourselves to be these kinds of story-jumpers?
Intelligence without wisdom allows us to create tools with immense power that go on to seemingly possess their own agency. This is the lesson from Johann Wolfgang von Goethe’s poem “The Sorcerer’s Apprentice” as well as Mary Shelley’s Frankenstein. Ironically, when we realize what’s happened, we scramble to apply even more technique and technology to remediate things, which only exacerbates our dilemma. How do we use our power well?
The power of medical technology can make us forgetful of the goals and limits of medicine. This is a little bit pleasing for us, though, because in avoiding any reflection on the ultimate purpose of medicine, we can trick ourselves into feeling limitless. Likewise, by avoiding reflection on the limits of medicine, we can avoid the uncomfortable business of asking deep questions about medicine’s ultimate purpose.
One example of this unwieldy power making promises, if not yet making good on those promises, is in the area of machine caregiving. We don’t yet have robots caring for older adults in nursing homes, but the hope is growing that this might be possible. “The lesson for those who would seek their healing from machines (or the Machine) is to behold how easily technology slips between humans, promising to enhance their relationships. Instead, it modifies them. It sets the tone. It frames the questions. It shapes the vision. For health and medicine, does that matter? Only to the extent that we believe people are more than machines themselves. If all we need is technical repairs to return us to health, then a machine will eventually be able to do most of that work - whether in one hundred years or a thousand. But if we’re more than parts upon which technique can intervene, then we may miss our healing.” What cannot be replaced by machines in caregiving?
I further explore this question, relying on Cormac McCarthy’s The Road, calling even the mere hope of robotic companionship an “apocalypse,” a revealing. “In the pallid light of this apocalypse, we see that the promise of the machine threatens to set the standard for human companionship. If we no longer care about those qualities that make human caring possible (they’ve atrophied), we’ll replace them with qualities manufactured within the machine. … The Road shows us that at the end of all human ingenuity, when every tool has failed, two people might carry each other along in love. That’s what we need: a willingness to bear with our companions as we accompany them in love, even when it feels like we’re wandering in a wasteland. It’s something only humans can share.” What tempts us to believe otherwise?
Machines have relieved us of all kinds of hardships. One hardship that has resisted technical intervention thus far (in the form of advance directives) as been surrogate decision-making. Maybe, though, the machine can help here to, in the form of the so-called “patient preference predictor,” an algorithm that would predict what patients would have chosen based off demographic or personal data collected by the machine. This has all sorts of consequences not yet considered by both proponents and detractors of the idea.
The medical machine struggles to contend with belief in miracles. Whether you believe they’re possible or not, part of practicing a living medicine is recognizing the “larger, looser, darker order of merely human love” from which such a hope springs. Talk of miracles sometimes becomes so contentious because of how one faith resists another. If clinicians listened, though, what might they learn?
Discussion of miracles at the bedside often goes hand-in-hand with discussions of futility. The medical machine conceives of futility in utilitarian, physiologic terms. This is often not at all how families consider futility (if they consider it at all). “We want to rush ahead to talk about how the things we’re doing won’t work to keep someone alive. That plastic and those chemicals may even harm them. There will come a time for that. But for now, do we have eyes to see that in this barren, futile wasteland of someone’s dying, there’s the verdant growth of love? For some, it’s just a small shoot, nurtured after years of estrangement. For others, it’s a mighty tree that has weathered the years and will weather this too - come life or death. For still others, there’s only the memory of love, but enough to remind us that this person was someone’s son or daughter. This love testifies that death doesn’t have the last word.” How is our understanding of futility shaped by the machine, and is that what we want?
The medical machine, as well as the rest of our society, forces people to evaluate the worth and quality of their lives using metrics founded in ability and utility. Anytime we consider whether “life is worth living,” we risk sinking into very dark waters. Leopold Alexander, an early 20th century psychiatrist and attendee at the Doctor’s Trial, knew the power of such beliefs. Instead of applying economics, I wrote that “We can resist the belief that there are lives unworthy of living by testifying to the inviolable, inherent, undiminished worth of the person in front of us. This requires more than technical expertise. It requires a different way of seeing - less efficient, more humane.” How do we find such eyes to see?
Relying on the work of Drew Leder, I trace how the medical encounter moves from the patient’s own intuitions and sensations, to the co-development of a story with a clinician, to the removal of the patient from that story as the clinician extracts information from the patient’s body via the physical exam, to finally the removal of both people as objective data is harvested from the body via scans and laboratory tests. This trajectory reveals an epistemic development in which the clinician (and sometimes the patient) distrusts narrative in favor of the data gleaned from technological studies. This results in the giving or withholding of certain names (i.e., diagnoses) to or from patients which drastically alter the shape of their life story. This is in stark contrast to something we could in pursuit of a living medicine: “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?”
In this issue, I tried to pull together many of the threads about which I had recently been writing. I echoed Jeffrey Bishop’s concern that medicine has become a practice of “keeping dead matter in motion” - matter divorced from any deeper, broader, more meaningful sense of human living. This doesn’t assert any ableist presupposition (as in, we’re keeping someone alive who “has no life,” or “no life worth living”). Rather, it presumes a practice of medicine intervening on the minutiae of medical technology without any acknowledgment of how it’s serving the health of the person to whom those physiologic processes belong. That’s dead medicine. “Patients aren’t bundles of physiology; they aren’t anticipatory corpses. Nor are other clinicians tools in service to physiology and patient will. These are people, irreplaceably unique. The relationships they form with one another are human relationships, also unique. There are some things in medicine we can’t standardize nor should we try. Call this ‘living medicine.’” Is it possible for living medicine to survive the advent of the machine?
Humans can be just so… human. It’s tempting to want to scrub their fingerprints from the clinical encounter and offer only the cool, objective enclosure of reports produced by machines. Striving to do that, though, dehumanizes both clinicians and patients. We need clinicians with consciences.
One hallmark of living medicine would surely be the capacity to be present to another human and their need. Here, relying on the work of Les Todres and Kathleen Galvin, along with others, I propose the uncomfortable suggestion that the clinician’s health is integral to being present to their own patient. I deepen the understanding of health I had previously developed to include their definition of “dwelling-mobility,” a sense of rootedness coupled paradoxically with a sense of movement and agency. “So, when I consider what it means to be shaped by limits, it doesn’t first mean figuring out how to act when one has reached a limit. That will come. It first means living under the tutelage of the question, “In light of this human frame [all the things I listed earlier and more], who then should I be and how then should I live?” One’s way of life comes before any particular action (“Should I prescribe A, B, or nothing at all?” “Should I take medication A, B, or nothing at all?”). This is the question for both the clinician and the patient, first as humans, and then in their respective roles.”
The practice of medicine is a craft. It requires risk and responsibility. It requires judgment, dexterity, and care. We want to standardize these, but to standardize them is to turn the craft of medicine into a factory-line production. Who wants to be treated that way? Who wants to work that way?
When we start to asking questions about how we ourselves, the clinicians, are embodied in the clinical encounter, hopefully we’ll soon realize we’re not machines - and that’s a good thing! But the fact that we need to rest might be counted as a disadvantage in systems that never tire. “The machine sets the standard for the expectations we have for ourselves. It’s not just that our tools don’t live up to our expectations, but we ourselves don’t either. Machines don’t rest, neither should we. We’re continuously contending with this limit.” In response, I argue that rest offers space and a repudiation of the utilitarian telos of human living. The hard news is that this kind of rest might not feel relaxing. In a world bent on turning you into a machine, rest is resistance. How can we cultivate it? Or, if the machine has made the question hard to comprehend, why should we cultivate it?
It’s not really five volumes. The first eight issues were references to resources that began as a regular email to some of my clinical mentees.
Wendell Berry reminded us that "Health is Membership". A far cry from the images of ChatGpt leading us to the promised land.