Living Medicine for Living People
Notes from a Family Meeting, Vol. 4, No. 3
Morning in the intensive care unit. A herd of clinicians graze amidst the hiss and sigh of critical, but not chaotic, illness. They shuffle, evermore caffeinated, from one room to the next, “running the board” with their mobile computers. Lab values spring from a resident. Others nod. Infusion rates spring from a nurse. Others nod. Ventilator settings spring from a respiratory therapist. Others nod. There’s an occasional scuffle over an appropriate diagnostic or management strategy, settled either by fiat from the attending or after the ritual of entering one of the rooms to examine someone under a heap of plastic tubing and wires.
Life is laid bare here. It’s hard to see it with the naked eye, so it’s drawn from the veins (or, with more pain, the arteries), sensed with electrodes, and illuminated with radiation. But that’s not really what the clinicians see. They see through the life to find the disease. Medicine has become the process of refining life so disease can be seen and managed. Where is that lesion hiding?
Sometimes families wait for the doctors, stiff from a night spent in a bedside recliner. Other rooms are empty. Well, except for the patient.
Paul Smith’s room is never empty. He’s diminishing, but his wife fills the room.
Early in my intern year, I stumbled across a book with an intriguing title. Despite the rigors of training, I couldn’t stop reading it. The problems raised by the book compelled me to keep reading. It spoke to, and spoke for, deep suspicions in my heart about modern medicine:
“Rather than explore the meaning and purpose of life, medicine’s response is to create the patient as the master of her own body. She must decide whether to embrace or to reject technology. Rather than addressing the very human questions of meaning and purpose, medicine simply changes who is in charge, who has the sovereignty to control life and death efficiently and effectively.”
So writes Jeffrey Bishop in The Anticipatory Corpse. The problem with the book is it leaves the reader (that is, me, trying to look like a doctor a few months after graduating medical school) with no answers. But the questions remain branded on my mind. They’ve pressed me on toward a better practice of medicine than simple answers ever could have.
Bishop’s critique is too complex for me to retrace here. You just need to try to read the book, but here are a few sentences to start us off in a worthwhile direction. Bishop describes how medicine has succumbed to sustaining the barest physiologic motions of the human body while ignoring deeper questions of health: “…medicine is primarily about pragmatic doing and efficient control, ordered to utilitarian maximization and its own practicality.” The firm foundation from which to launch this project, in Bishop’s estimation, is the dead body, where things are frozen under the inquiring gaze of the anatomist (or aspiring physician). We re-enact in the living bodies of patients what we learned in the dead bodies of cadavers (or, writ small, histology slides, and smaller, biochemistry textbooks). The human, per se, isn’t what we really care about, but the process born in their biological frame.
I once heard someone tell a patient, “The urologist who is going to care for your prostate cancer will see you soon.” The person is secondary to the disease itself. Yes, the cancer is alive, but it doesn’t have a life like the person does. Medical training as it’s often structured better facilitates the care of diseases than of people because, while diseases are played out in the bodies of living people, they are better considered frozen in the lifeless anatomy and physiology Bishop described.1
Consider also Jack, who has severe dementia. He lays in bed, his arms and legs contracted by years of disuse. He doesn’t speak. He’ll open his mouth to accept soft foods, but struggles to swallow. He’s incontinent and can do nothing for himself. Some people, clinicians included, might say that he “died long ago.” They might observe that his “isn’t a life worth living.” Or imply as much, when they say they wouldn’t want to live like that. They may shake their heads, wishing for themselves a “death with dignity.” What’s different about Jack to make others think such things? Bereft of his personality and will, what others see is not a person, but a body that’s incapable of “really living.”
So, too, with Paul Smith, our companion of many issues of the newsletter. He languishes in the ICU. All the interventions of that place are aimed at a body, the humanity of which, as we’ve seen over several issues, the clinicians struggle to see. Alasdair MacIntyre could have been sitting in any ICU watching the care of almost any patient as he described what medicine in that world looks like:
“Part of our inheritance from this period, in which successful medicine was successful applied science, is a view of the patient as essentially either an object for an exemplification of the results of scientific research. Viewed thus, the patient is no longer envisaged as a whole person, but only as a body; and the body itself is envisaged as a collection of parts and subsystems, each of which may fruitfully be studied in isolation from the rest. According to the views of medicine, the physician reenacts with the parts of a patient’s body what the scientist had first achieved on the laboratory bench, and it follows that the specific complaints uttered by the patient and the care of the patient are not really part of the genuine practice of medicine at all.”
Claude Bernard’s description of the physiologist from the 19th century fits here too: “A physiologist is not a man of fashion, he is a man of science, absorbed by the scientific idea which we he pursues: he no longer hears the cry of animals, he no longer sees the blood that flows, he sees only his idea and perceives only organisms concealing problems which he intends to solve.”2
What this also means, according to Max Weber, is that the world of medicine, just like the world as a whole, has been disenchanted: “…we are not ruled by mysterious, unpredictable forces but that, on the contrary, we can in principle control everything by means of calculation.” That’s a good thing, though. Uncertainty in this world is too often associated with death: not knowing where your next meal will come from, not knowing the weather forecast, not knowing if those berries are poisonous, not knowing how to treat leukemia. Less mystery means less death, right?
Weber continues: “Natural science gives us an answer to the question of what we must do if we wish to master life technically. It leaves quite aside, or assumes for its purposes, whether we should and do wish to master life technically and whether it ultimately makes sense to do so.” The presence and possibility of technology is permission for its use. As living is subjected to ever greater technical scrutiny and management, it’s ironically drained of vitality even as physiologic homeostasis is maintained. If living were an amalgamation of physiologic processes, that’d be alright. But most people know that living is more than mere physiology.
The experiences of Jack, Paul, and others like them, even those who consider themselves well, sitting in the waiting rooms of their doctors’ offices, reveal that medicine is often about restoring and preserving homeostasis instead of fostering health in any meaningful, personal sense of the term. Bishop and others suggest that one root of this (if not the main root) is found in providing medical care aimed at nothing more than biology; that’s why the corpse is the standard, because it’s biology is frozen in stillness of death. Now, of course patients are alive. But medicine struggles to acknowledge anything beyond keeping matter in motion. To the extent that it does (e.g., mental health, social determinants of health, “getting to know your patient”), that too is bent in service to efficiency.
Medicine does honor one thing patients have that corpses don’t: a will. If medicine isn’t in service to health, then it also has little to say about how any one person manages their sovereign domain of physiology (i.e., their body). The work of the physician devolves to that of technician who serves a customer. Their job is to satisfy the preferences of those customers. What else is there? All that is before them is a bundle of physiology and a will. Autonomy rules. This is also why so many ethical dilemmas devolve into a single question: “Who decides?” If a person is still somewhat physiologically intact but has lost their will, we need to find someone who will serve in that role and decide for them. And so Bishop writes:
“The power of technology renders the practitioner forgetful of meaning and purpose. For medicine, then, the important question becomes, Who holds the power over physiological functioning? This question is an ethical question. The debate in medicine has not been about philosophically exploring ways in which life as such might be meaningful; instead, its focus has been on who can invest meaning back into, and who should exert power over, the meaningless mechanism, and on how to carry it out.“
I don’t think Bishop means that anyone else the authority to dictate for individual patients what gives their lives meaning. Instead, I think he’s acknowledging that it must be a communal project to answer the question, “What is health for?” This needs to be a part of the conversation about what it means to practice good medicine. But instead, we offer interventions designed to satisfy preferences or budge metrics in the right direction.
The clinicians’ way of seeing patient, health, and illness has evolved to foster this project. Drew Leder writes:
“Physicians sought to free themselves from the patient's restricted perspective and the subjectivity of their own perceptions. 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.”
Treating the number - making the creatinine drop or manipulating the blood pressure - without any respect to the person who holds those numbers in their body (their very living) is to treat a corpse. This isn’t white tower academia stuff; it has deep practical consequences, even if many clinicians wouldn’t have the patience to follow Bishop’s often opaque writing.
He continues:
“The problem is that in focusing on efficient and material causes [that is, the interventions and the physiology, respectively], medicine alienates the bodies of patients from their capacities, histories, projects, and purposes, which are molded in communities. In other words, bodies have an integrity prior to and independent of the post hoc investment of meaning and value that is added onto living and dying.
…
What is suffered in the body is a loss that reaches further back and further ahead than materiality. What is lost exceeds the body precisely because bodies exceed themselves.”
There are mysteries that the practice of modern medicine can’t even behold and one of those mysteries is the human life in all its glory and depth. Leder adds:
“Physicians have searched for an ideal of perfect presence - the immediate gaze, the unambiguous number. Yet this has led medicine away from the very real presence upon which it is founded: that of the living patient. The person-as-ill tends to disappear from view when the focus is placed exclusively on certain secondary and tertiary texts [e.g., medical data]. This is an example of what Whitehead calls the ‘fallacy of misplaced concreteness’: one's abstract model of the real comes to be mistaken for reality itself…”
C. Thi Nguyen would call that value capture resulting in value collapse, but the idea is the same: a number substitutes for the thing it’s meant to represent and desiccates the value of the thing represented. Teachers teach to the test, politicians pitch to the polls, doctors treat to the number.
Caring for People
Consider this from Wendell Berry in contrast:
“…love obstinately answers that no loved one is standardized. A body, love insists, is neither a spirit nor a machine; it is not a picture, a diagram, a chart, a graph, an anatomy; it is not an explanation; it is not a law. It is precisely and uniquely what it is. It belongs to the world of love, which is a world of living creatures, natural orders and cycles, many small, fragile lights in the dark.”
Berry’s meditation is woven together with a story of how he and his family waited in the hospital through his brother’s heart surgery and recovery:
“In the hospital what I will call the world of love meets the world of efficiency - the world, that is, of specialization, machinery, and abstract procedure. Or, rather, I should say that these two worlds come together in the hospital but do not meet. During those weeks when John was in the hospital, it seemed to me that he had come from the world of love and that the family members, neighbors, and friends who at various times were there with him came there to represent that world and to preserve his connection with it. It seemed to me that the hospital was another kind of world altogether.“
Clinicians aren’t in a position to offer the depth and breadth of love about which Berry writes. Nothing compares to family. But for many patients, their healthcare team is their family. That doesn’t speak to how very close they are with their doctors and nurses, but how lonely and empty the rest of their life is.
Even if clinicians can’t love their patients as a family would, they can attend to them in a better way than what Bishop describes of corpses. Joel Shuman writes:
“It is attention that allows us to see the other as equal to ourselves in loveliness and dignity. Elaine Scarry suggests that the experience of seeing beauty tends to bend us toward justice, and it is reasonable to suggest that the skill of attending to the beauty of another would move us to treat the other justly or advocate on her behalf.”
Shuman knows this is a daunting task: “The challenge for those who would participate in the healing of broken bodies is patiently and diligently to cultivate the habits of body and mind requisite to this seeing and loving.” The very patience required is itself a quality that also needs cultivating.
Such patience - like any virtue - can’t be standardized into a skill and marked off on a competency form at a certain point in medical training. It isn’t taught in a lecture. If we try to standardize this kind of training in the same way we might teach the management of hyponatremia, we make a category error and wind up with trainees who manufacture enough evidence to complete the “assignment.” The method of training inculcates qualities that undermine the very thing the training hoped to achieve - terrible irony! This isn’t because medical schools are admitting compassionless, unreflective people. It’s because trainees look around and see few clinicians who can show them how to see. And of those faculty who can, trainees might spend a week with them, or only encounter them for an hour in a lecture or small group discussion. Helping clinicians-in-training to see well, helping them to grow into the types of clinicians who practice good medicine for the good of their patients, requires regular, frequent contact with models who practice good medicine.
What might be possible if we beheld our patients, even one another as colleagues, as beautiful and lovely? Such a way of seeing is the beginning of justice. Justice forced by law and policy is sometimes necessary, but it will never provide the rich wholeness of community - whether in a city or a clinic, a hospital or a nation - to which the greatest ideals of democratic communities aspire. Given the dignity of each human person, it would be just to acknowledge the inherent beauty and loveliness of that dignity. We, all of us, are owed that much from one another. In healthcare, that means working as if this were true: healthcare was made for people, not the other way ‘round.
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.”
Such living medicine doesn’t see itself as a science, but a science-using discipline. It requires science, yes, and also knowledge of human persons and their idiosyncrasies. It requires responsibility and courage, in accompaniment and in making the leap from evidence to decision. It requires wisdom and compassion, companion virtues that push us beyond ourselves to go further in expertise and in practice than we thought we could, even as they set limits on each other. Wisdom bounded by compassion keeps us close to those we accompany, while compassion bounded by wisdom won’t seek the elimination of the sufferer just to eliminate the suffering. Practitioners of living medicine know their tools, and know them as tools. They don’t confuse people with tools, which is how they can see others as beautiful and lovely. Living medicine takes time. Thankfully, it’s time spent focusing on those things that matter most. Sometimes that’s kidney function, sometimes not, but always with a person in view.
Living medicine, I’m sorry to say, is not efficient. What does that mean for the clinician who feels alone on a dark shore as wave after wave casts another suffering person in need before them? It means doing what they can, and knowing their limit. There are some encouraging words in Pirkei Avot, an ancient collection of Jewish teachings: “Do not be daunted by the enormity of the world’s grief. Do justly now. Love mercy now. Walk humbly now. You are not obligated to complete the work, but neither are you free to abandon it.” Maybe your boss or your colleagues make you feel like that’s not the rule. To the extent that they do, they demonstrate how in thrall they are to their tools and numbers. At the end of the day, you can only do what you can do. I hope you can find at least one other person with whom to commiserate and reflect. Practitioners of living medicine aren’t machines or magicians. They, too, are people, doing human work - even if they use very fancy tools to do it. They need others.
Amidst his scathing critique of modern medicine, Bishop relents and acknowledges the humanity of those who practice it: “No doctor or nurse intends for the person who is the patient to disappear in every sense except as material to be manipulated. The intensity of the drive to maintain function is an unintended consequence of the social and technological apparatus designed to sustain function and to treat grave illnesses.” We can’t practice any different form of medicine without setting aside time, energy, and, yes, money, to train our vision differently: with art, reading, writing, conversation, and thinking. Even the humanities can be co-opted in service to the technical project about which Bishop warns, a token addendum to the “real” work of medicine. That’s a bit of a dilemma, for there are real lessons to be learned in the humanities. One way to overcome such a dilemma is with regular, frequent contact with good practitioners of living medicine. Even if the system chugs along toward its efficient purposes, these clinicians testify through their practice and presence what it means to care well not for corpses, but for people.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“Science and the ethics of ‘curing’ misinformation”
A humbling article highlighting the challenge in noble attempts to “cure misinformation.” The challenge, as Neil Postman saw it, is that “information has become a form of garbage, not only incapable of answering the most fundamental human questions but barely useful in providing coherent direction to the solution of even mundane problems.” Institutions are a major filter upon which people rely to handle their info. “As the power of traditional social institutions to organize perceptions and judgment declines, bureaucracies, expertise, and technical machinery” rise up to take their place. This could explain both the conspiracy theorist and “science follower” sides of this spectrum. Both have near-totalitarian expectations for what kind of sway “facts” should have over life, skipping over the important mediating influence of democratic institutions. This also has a striking parallel in the epistemic leap clinicians must make from “the evidence” to actually helping the person sitting in front of them. Medicine isn’t a science; it’s a science-using discipline that employs many other tools, hopefully in service to health.
“Saving friends: What I’ve learned from insufferable patients”
“The poet and pediatrician William Carlos Williams writes, ‘There’s nothing like a difficult patient to show us ourselves.’ Amy, in all her suffering and insufferableness, shows us to ourselves. And sometimes what we see is not pleasant. Our reflection is just as broken and in need of friendship as the friendless patient who revealed it to us in the first place. What we do at the limits of our medical ethics reveals what kind of medicine it is that we are being formed to practice.”
“Fast Facts and Concepts #452: That’s what they told us last time”
It can be challenging when another clinician’s prognosis, wonderfully surpassed, now influences a patients or family’s decision-making in ways the current care team believe to be unrealistic. But who can blame them? A doctor once told them she had a month to live, and that was a year ago! Here are some helpful tips on how to navigate that conversation. And one particular way to avoid the conversation in the first place is to ensure your prognostic and planning conversations are humble and focused on the patient’s goals.
Closing Thoughts
“We may want something harmless, but if it’s out of place, if it comes before the right thing, then what’s benign becomes malignant. We want the wrong thing.
Andrew Peterson, Adorning the Dark
This is an error, as social determinants of health (SDOH) reveal. However, even if SDOH are incorporated into one’s understanding of disease, that may not properly orient the practice of medicine toward health, although it increases the likelihood that it will cause clinicians and policymakers alike to confront the pluralistic values on which policy decisions are made. This inches closer to the ever important question, “What is health for?” Although, in a democratic society, it’s best not to prescribe a particular use or end of health. A topic for another time!
Despite his gendered observation given the era, it applies just as much nowadays to women as to men, both of whom can fall prey to this desensitized practice of medicine.