Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations. If you want to come along with me, subscribe and every new edition of the newsletter goes directly to your inbox.
For those of you just joining, consider starting here to trace how I’ve been thinking about medicine and technology, a conversation I’ve been returning to time and again.
I stared at the telephone, the pulse of other patients’ needs beating behind me, underneath me, all around me. Colleagues shuffled in and out of the workroom.
Asking for help as an intern is a double-edged sword. Despite encouragements to the contrary, you can’t ask for help too often and there are such things as dumb questions. These would show weakness, something medical students don’t learn about, and we carry that ignorance into internship. However, being an intern, I didn’t know everything (or anything, really; not really).
The balance tipped in favor of asking for help this time. I picked up the phone.
The occasion for my need was my patient’s need: their kidneys and liver both were failing. The longer they languished in the hospital, the sicker they became. Sometimes liver failure can cause kidney failure; sometimes the kidney failure is the primary driver of the patient’s ill health and the liver just struggles to keep up. Possible diagnoses sifted through our fingers, useless as sand.
“I know you’re saying the liver isn’t the biggest problem here,” I sighed, “But can you help me think through this? Like, what else could this be?”
The liver doctor declared, starkly, authoritatively, dismissively, “It’s not the liver. That’s all I can say.” He ended the conversation. I looked at my patient, at my patient’s chart. Nothing gave up the secret. Another day passed in which my patient’s grip of life became a bit more tenuous.
That liver doctor might be surprised to learn how often I remember our brief conversation. It also makes me wonder what I’ve said that I no longer remember but left some indelible mark on someone’s memory.
In my memory, I can turn the doctor around and around, seeing him in different ways.
He was the harried physician, burdened by all the things with which I was also burdened and more, just trying to get through the day and with no time to spare for chin-scratching.
He was the machine built for precision, incapable of sparing a compassionate glance in my (our) patient’s direction.
He was my older brother in the fraternity of medicine, smirking with approval that I would endure the struggle with ignorance just like he did.
Perhaps that first image is the most charitable remembering. It suggests some people “play doctor.” I, in no way, mean to denigrate their expertise or authority or the importance of their work. To paraphrase C. Thi Nguyen, people may choose particular career paths to flatten the existential hellscape of modern medicine. Some specialties have easily quantifiable outcomes and therefore appeal to our deep need for moral simplicity.1 Nguyen calls this need “value clarity,” in which values become easily applicable, commensurate, and rankable. Real life usually doesn’t afford much value clarity.
I previously wrote, quoting Nguyen,
There’s a danger here for those practicing medicine:
“If we expect value clarity, we may be drawn to those social milieus and institutions that present values as artificially clear. … We might start to expect our value systems to be applicable, easily commensurately, and rankable - and so avoid the use of subtler value systems. In other words, we will be drawn to systems institutions, social practices, and activities that closely resemble games, and we may be tempted to adjust our own goals to make our lives more closely resemble game play.”
I’m not knocking on interventional sub-specialties. I’m only drawing attention to the pitfall of gamification that exists for all of medicine, and certainly for sub-specialties where value clarity is more imminently possible (e.g., change a number, complete a surgery, stent a lumen, etc.). “Games,” Nguyen writes, “threaten us with a fantasy of moral clarity.” It’s not straightforward in real life, if we’re really going to behold suffering and strive for health.
If I’m right about that liver doctor from years ago, he was an individual instance of a bigger crisis afflicting all of medicine.
If We Avoid Limits, We Can Avoid Purpose
In many fields, the outcomes are quantifiable or even binary (something did or didn’t happen), like a blood level of a substance, a vital sign, or a procedural outcome. In other fields, they’re tempted to follow the metrics of population health. That doesn’t mean other, abstract, narrative-bound outcomes don’t exist, but they’re overshadowed by these things that promise objectivity.
Drew Leder, describing this process of moving from the subjective history to the subjective assessment to the objective laboratory or radiologic study, wrote, “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.” Neither specialist nor generalist is spared this temptation.
By focusing on the outcomes given to us by our techniques and machines, we can avoid a question lurking about in the basement of our society: what is health care for? That’s a really big, hairy question, with sharp claws and teeth.2 Metrics are one club we use to beat that creature back away from all the polite company we’re hosting upstairs - clinicians, patients, ethicists, and the like. The other is deference to mere patient preference, which I discussed here.
Okay, that’s not fair. Maybe we don’t intend violence against this innocent question. And maybe the question isn’t a monster after all; just misunderstood! Jeffrey Bishop put it this way in The Anticipatory Corpse: “The power of technology renders the practitioner forgetful of meaning and purpose.” Maybe we’ve suffered a collective amnesia, and struggle to ask the right questions. Magic, of which medicine is an example, has this potent amnestic quality because with its power, anything seems possible. We forget limits. Never mind that the limits eventually reassert themselves, often during a death entombed in wires and plastic in an ICU somewhere.
But this amnesia is pleasant in that it offers clarity about value. Moving the creatinine in the right direction is clear, treating an infection is clear, stenting a coronary artery is clear. Mission accomplished. By overlooking the true limits of our therapies and focusing instead on where we measure them, we can keep that dark question locked out of sight.
So we’ve got a monster in our basement, and a wizard wielding magic-like medical technology living in our house.
What a strange place.
If We Avoid Purpose, We Can Avoid Limits Too!
Maybe you can agree with me that health care is meant to sustain and restore health. By health, I both mean the well-functioning of the person, as well as the person’s capacity to be at home in their life. Health has both objective and subjective facets. You can’t just look through one facet. You may miss an insidious tumor if only you relied on a patient’s symptomatic reports. You may ride rough-shod over someone’s existential distress if you only saw the normal tests and scans.
I’m not so naïve as to suggest health is easy to appreciate in every case. We don’t have a blood test or a scan for “health.” It’s something which we could grow in appreciation together. What does it look like to pursue health in obstetrics, pediatrics, psychiatry, oncology, hospice, and so on? What does health look like with cancer, with bipolar disorder, with quadriplegia, with Trisomy 13? We’re so inclined to let our metrics, given to us by our technology, and our diagnoses lead the way that we may miss opportunities to see, sustain, and restore health.
Without inviting that misunderstood monster up into our living room for tea with ourselves and the wizard of medical technology, we remain confused and misled about the limits of our medical interventions. Grappling with the limits of medical care under the tutelage of questions about health is more of a challenge than establishing whether a therapy modifies a surrogate marker like a blood test value. If we don’t feel ourselves responsible to this more substantial reality (health), or are confused in the belief that service to a surrogate marker or an autonomous request is indeed service to health, we can avoid a confrontation between our practice and the limits of our therapies.
Daniel Sulmasy’s (tentative, not exhaustive) list of the “canons of therapy” can help show us why good medicine is so often elusive. When we skip over the purpose of health care, we can fumble with these canons. The true limits of our therapies disappear in a fog beyond where our surrogate markers can reach, making the allure of technological intervention even greater (remember that amnesia?).
The canon of proportionality
“…it is important to consider not just the proportion between one outcome and another [end-end proportionality], but also whether the means one chooses are properly fitted to the end one seeks [means-end proportionality].”
A clinician considers end-end proportionality when weighing the burdens of a therapy against its benefits. They consider means-end proportionality when they choose the best tool for the job (e.g., the best chemotherapy regimen, all things considered, to treat this person’s cancer).
While it’s possible to consider both these forms of proportionality in a reductionistic way, a clinician and their patient are best suited for the task when they have the patient’s overall health in view - again, aiming to restore them to good functioning and home-in-their-life, to whatever extent we can. Usually deliberations about end-end proportionality are negotiated between the clinician and patient, whereas means-end proportionality is discerned by the clinician alone (while taking into account relevant patient-centered factors).
The canon of parsimony
“…one should use only as much therapeutic force as necessary for achieving one’s therapeutic goal.”
Clinicians do this all the time in a reductionistic fashion, using only as much antibiotic, for example, to treat an infection, or only as much diuretic as needed to remove excess fluid from the body, without considering impact on other areas of a person’s health and life. However, parsimony is hobbled without a clearer sense of how a therapy serves the patient’s health via their goal of care. Particularly for seriously ill people, medical interventions will come with trade-offs, and the likelihood of those trade-offs will inform judgments about parsimony. Sure, antibiotics can treat an infection, but a patient may not want to endure the burdens of the treatment and instead prioritize a different goal.
The canon of restoration
“The goal of all therapeutic intervention is to restore the patient, as far as possible, to homeostatic equilibrium. … Even for pure symptom control, when the underlying disease cannot be treated, one’s aim is restorative. In decreasing or eliminating a patient’s pain, one attempts to treat the patient as a whole person and to restore him or her as completely as possible to a normal, pain-free state.”
A common strategy of reductionist medicine is to make the numbers move in the right direction. This is satisfying in a machine-like way. It’s also a mere gesture toward Sulmasy’s notion of restoration. A deeper, richer sense of restoration comes when one has health, and not just the metrics, in view. Dialysis, for example, may remediate electrolyte disturbances and remove excess fluid from the body. More broadly understood, dialysis may help someone live longer, but with some of that time spent in health care settings, possibly receiving other burdensome medical interventions. There are other trade-offs as well, and maybe the patient is willing to make them for the promised benefits, but a clinician can only begin to see some of those trade-offs if they’ve already begun to deliberate more broadly on their patient’s health.
The canon of holism
“The idea behind this principle is that the whole patient takes precedence over specific parts and specific functions, and so while one ought never to eliminate or alienate parts or functions of a human being for the sake of preference or whim, one may do so if necessary to preserve higher functions or the survival of the whole person.”
You obviously can’t appreciate this in a reductionistic way. It forces you to consider how creatinine, blood pressure, pulmonary function, and so on all integrate to support the health of the whole person.
The canon of discretion
“Discretion indicates the critical need for clinicians to be aware of the limits of medicine - the limits of their own individual expertise and the limits of the medical craft itself.”
Sulmasy describes three forms of indiscretion:
“Indiscretions of degree involve an overestimation by physicians of the power of their therapeutic interventions.”
“Indiscretions of scope concern the totalizing tendencies of medicine to extend the reach of the craft’s social mission.”
“Indiscretions of expertise relate to the temptation clinicians face to ignore the limits of their own individual knowledge and skill.”
All of these blind us to questions about the purpose of health care. Our blindness to those questions also leads us to stumble into indiscretion. Dan Callahan’s “technological brinkmanship” is one such example that haunts care at the end of life. This is “the gambling effort to go as close to that line as possible before the cessation or abatement of treatment. … this seemingly obvious strategy assumes an ability to manage technology and its consequences with a delicacy and precision that medicine simply does not possess and may never possess.”
Think of these canons of therapy as safeguards. They help provoke important questions as a clinician tries to help their patient. Those questions won’t form, or may even be malformed, if a clinician ignores health in favor of a surrogate marker.
Joining Our Story
In After Virtue, Alasdair MacIntyre traces the history and implications of Western civilization’s loss of a coherent moral language. Relying on part of that work, I want to suggest that we cannot see, let alone address, the two problems I’ve described here (avoiding limits by avoiding purpose, and avoiding purpose by avoiding limits). We must see our context; we must know our story. MacIntyre put it this way:
“…man is in his actions and practice, as well as in his fictions, essentially a story-telling animal. He is not essentially, but becomes through his history, a teller of stories that aspire to truth. But the key question for men is not about their own authorship; 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 is through hearing stories about wicked step-mothers, lost children, good but misguided kings, wolves that suckle twin boys, youngest sons who receive no inheritance but must make their own way in the world and eldest sons who waste their inheritance on riotous living and go into exile to live with the swine, that children learn or mis-learn both what a child and what a parent is, what the cast of characters may be in the drama into which they have been born and what the ways of the world are. Deprive children of stories and you leave them unscripted, anxious stutterers in their actions as in their words. Hence there is no way to give us an understanding of any society, including our own, except through the stock of stories which constitute its initial dramatic resources.”
What is the story of a health care system that chases after metrics at great expense to both the pocketbook and the actual health it purports to serve? What is the culture and language of the characters in such a story? What are their habits? Who are the heroes and villains?
All worthy questions. Many physicians are familiar with the stack of quaintly faxed records bearing page after page of vital signs, lab values, templated nursing jargon, copy-and-pasted physical exams - so much meaningless for the decisions you need to make. That is the output of machine medicine. Who wants to claim that story as their own?
Instead, here is the beginning of one response: our story is full of misunderstood monsters and manipulative wizards, unwieldy magic and jealous dragons.3
Don’t believe you need to sign on for the story the machine tells you. The story of health care, like so many other stories, is in part how we become the kinds of people fit to do the things we need to do, recognizing we’re so often not up to the task ourselves - not yet, and not alone.
This is only true in a superficial sense. In hepatology, you could narrowly focus on biliary stents and hepatitis treatment, but once you delve just a few inches under the surface, you find a world of complexity not easily captured by surrogate markers and binary outcomes.
And never you mind the bigger, scarier creature lurking in the catacombs under the basement: What is health for?
I didn’t mention the dragons yet, did I? Perhaps you can imagine who they are…
I just discovered this piece via some Substack byway, Josh, and find myself deeply appreciating your insights and thoughtfulness. "We must see our context; we must know our story." Beautiful.
In my own work with clients in a non-medicalized setting, I often encounter very real exasperation or grief over why a particular medical specialist doesn't have the answer for a client's experience of poor health, and often it comes down to the clinical markers looking normal despite the client's experience and the practitioner perhaps either being too busy or too reliant on the numbers to hear and acknowledge the validity of anecdotal experience. On the flip side, I've worked with people who are equally exasperated because a specific clinical marker has been used as a sort of psychological cattle chute in which allowed choices are limited without respect to the client's perception of health.
Looking forward to exploring more of what you've written here.
Wonderful and eye-opening read. Thank you for your wisdom and experience and perspective. 🙏