Toxic Knowledge
Notes from a Family Meeting, Vol. 3, No. 6
“A little learning is a dangerous thing; Drink deep, or taste not the Pierian spring: There shall droughts intoxicate the brain, And drinking largely sobers us again.”
Alexander Pope
Paul Smith had climbed mountains once.1 Now, he sat propped up in a bed, unable to scale even a flight of stairs. But that’s what it felt like all the time: that he’d just climbed several flights of stairs. He tried to control his breathing, to show that he was composed for this important meeting. He needed to show his wife he could be strong.
“First, your kidneys…” The doctor sounded quite excited to talk about this. Paul struggled to focus. He was a smart man, having founded his own business and invested in several others. Watching the doctor speak, though, was like watching a video from his high school biology class at two times the normal speed. Something about tubes and filtration?
Another doctor broke in, “If you go home…” Paul looked around the room. If he goes home? Someone else had already said he was going to rehab to get physical therapy; why were they talking about going home?
“Now, of course, the chance is…” A third doctor started to rattle off numbers associated with different medications. Paul hoped they would help. He assumed that’s what “response rate” meant. But he was worried too. He felt that he was getting weaker every day. Something didn’t add up.
“So what do you think, Mr. Smith? What do you want to do?”
Paul realized he had been looking at his bed sheets for the past several minutes as the doctors talked at him and his wife. He turned his head up toward the white-coated pillars stationed around his bed. “I… don’t know.”
How can we help Paul Smith? The doctors gathered in his room for this fateful meeting are certainly trying to help him. But something doesn’t work. He stalls out. Does he just need more time to make a decision, or could the physicians have done more in helping him to make his decisions? Perhaps they did something to actually impair his decision-making?
It seems that what Paul has encountered are a few forms of toxic knowledge. I found this phrase in a paper that discusses the utility of personalized risk information in medical decision-making. Confronted with certain kinds of information without proper orientation or preparation may lead patients into guessing, confusion, or pointless distress. The distress is pointless because, while information has increased knowledge, it has not aided decision-making because patients in some scenarios don’t see themselves as facing a true decision (e.g., some possibilities are a priori off the table). So, in short, toxic knowledge is unactionable information that causes distress or that impairs decision-making, or actionable information that is misleading (but not overtly untrue).
An example of unactionable information that causes distress would be repeated reminders of what undergoing CPR would look like - the broken bones, the strangers gathered ‘round in a flurry of activity, the shoving an endotracheal tube down a throat. Someone has already chosen that they want CPR in the event of a cardiac arrest. Perhaps their views are so strong that it’s not even a decision for them: they must receive CPR. Yet their clinician, steeped in moral distress at the prospect of conducting ACLS upon so frail a person, continues to raise the issue. The patient reminds them of the decision at first, but then becomes annoyed and finally irate. The visits now erode trust: just what is this clinician getting at here? This information isn’t helping anyone.
Information can also impair decision-making. Consider a man who is dying in an ICU. The family holds vigil at his bedside; they know he’s dying. Finally, after much consideration, they want to stop medical interventions that don’t foster his peace and comfort. He’s receiving pressors and dialysis, and is on a ventilator. One clinician acknowledges this, stating that anything not helping with that goal will be stopped (like these machines) while other things that would help will be started to address any symptoms that arose. Another clinician, though, feels compelled to go down the list: stopping pressors would look like this and possibly lead to this; stopping dialysis would look like this and possibly lead to this; stopping the ventilator would look like this and possibly lead to this. This latter clinician has broken one major decision into several, made the decision-making process more difficult for the family, and disoriented them regarding the goal of care.
Even true information can be misleading and impair decision-making. When clinicians tell patients something is “treatable,” they usually mean there’s something to do (not necessarily referencing prognosis), whereas patients hear this as good news. “Something to do” may be good news, but it may not be; the statement says nothing about the quality of the treatments, the trade-offs they carry, or how oriented they are toward the patient’s goals and values, yet the description alone may bias patients to venture down that path, particularly if no alternative is offered. Similarly, patients are more likely to opt for treatments when outcomes are framed in terms of relative risk (bigger numbers) rather than absolute risk (smaller numbers). That’s a big issue because we know physicians significantly over-estimate the impact of their treatments (possibly because we think in terms of relative rather than absolute risk).
Toxic But Tempting
Why aren’t clinicians more cognizant of the toxicity of certain types of knowledge?
It’s hard for experts to remember what it was like when they weren’t experts. The amount and quality of information an expert needs to decide is different than what a non-expert needs. But if the expert doesn’t appreciate that difference, then the curse of knowledge causes them to dump an expert’s worth of information onto a poor soul who has sought their help. This curse doesn’t just influence how much information a clinician gives to a patient, but how they share it. Think of medical school: you study and then are given a multiple choice exam. There is one right answer only. If you have the right information (and a little test taking strategy), you’ll make the right choice. Real world medical decision-making is far more complex but medical training doesn’t really prepare clinicians for that.
Ignorance about actionable knowledge.
What does a patient really need to know to make a decision, let alone a good decision? Most clinicians agree that patients need to know the burdens and benefits of a particular intervention, as well alternatives, among which is the possibility of doing nothing at all. But if you’ve ever looked at a package insert for a medication, you know the list of adverse effects for any medication is quite long. Do you list all of them, or only the most common and the most dreaded? What is “most common?” Occurring in 10%, 20%, or 50%? Should the clinician provide the actual numbers, or tell stories about what might occur? When should a clinician’s decision be “silent” and when should they share their deliberations? On the flip side, paternalism may creep in here: all this person really needs to know is that this surgery is going to save their life and without it they will die, now sign here please. Such an expeditious approach shows that the clinician believes actionable knowledge is constituted by only the broadest and barest of information.
Attempts to respect autonomy.
Most clinicians earnestly want to do right by their patients. There are some cynical, paternalistic, House of God-type clinicians out there, but usually clinicians defer to their patients: what do you want to do? A major way clinicians think they’re respecting someone’s autonomy is ensuring they share all kinds of information about this condition, its causes, its prognosis (sometimes…), and its management. But ironically, this may overwhelm one’s capacity to make a good decision - that is, a decision most authentically aligned with their goals, preferences, and values. When confronted with too much information or information with too little meaning and orientation, we use heuristics (consciously or unconsciously) to help us decide, and those heuristics might bias us against good decisions and undermine autonomy.
Filling silence.
A major reason we share information with patients is to help them make decisions. This part of the conversation involves things that haven’t yet come to pass but might. That “might” can be quite a significant stumbling block: clinicians are notoriously poor prognosticators. Not only that, but there is a chasm between population-level evidence and the patient with whom one is speaking. Clinicians must leap over that chasm in order to make treatment decisions, and that leap requires wisdom and courage. The simplest way for clinicians to feel like they’re doing all this (helping to provide a prognosis and connecting the patient with the evidence) is to just keep talking. If they keep sharing information, then they won’t be confronted with the existential dilemma of the future and the epistemic reality of clinical judgment that darkens the silences of medicine. They also can meet the patient’s emotion with a tool with which they’re familiar: more information. Put another way, it really freaks out some clinicians that they can’t predict the future perfectly, nor can they trace perfectly the path from population to patient when discerning how a treatment will help or harm, nor do they know what to do with patients’ emotions. That anxiety, of a merely human variety, barks at them from silence, but if they keep talking, perhaps they can stave it off. They reinforce feelings of safety and certainty from within the fortress of their explanation, cast as it often is in jargon oblivion. The cost, though, is toxic knowledge for the patient.
Detoxifying Communication
How might we help our patients without submerging them in toxic knowledge? Here are a few thoughts, framed as questions to invite further exploration from others.
What is the purpose of medicine?
If we’re all clear that the end, the purpose, of medicine is to support and restore health, then we can better orient ourselves to talking about those things that are possible and helpful in pursuit of that purpose. Toxic knowledge in a medical context is inactionable in part because it’s unmoored from any purpose except vague gestures toward “more is better” and “respect for autonomy.” But more isn’t always better if it distracts patients and clinicians from this purpose, and it doesn’t respect someone’s autonomy (let alone respect them) if they become mired in a swamp of toxic knowledge. “Is this information helping this patient make a decisions about their health? If not, why?”
How do people make decisions?
It turns out we aren’t machines. Humans don’t imbibe information and then, algorithmically, produce an outcome. How we make decisions is a complex process involving not only information, but emotion, unconscious cognition (e.g., biases), embodiment (e.g., hunger, pain), relationships, culture, and history, to name a few things. The formula isn’t information + decision-making capacity = decision. If we want to empower our patients to make good decisions, we need to better understand how people make decisions. As Peter Ubel and colleagues argue, “Good ethics often requires good communication. If we hope to promote patient autonomy, we must go beyond teaching ethical principles and improve how physicians interact with their patients. To promote patient autonomy and empowerment, we need to teach physicians how to partner with patients in making preference-sensitive choices, and reinforce these teachings throughout their training.” A good place to start surveying this landscape would be Jennifer Blumenthal-Barby’s book, Good Ethics, Bad Choices.
What’s a good decision anyway?
The classic teaching on decisions is that, if someone has the capacity to make a decision (defined by Appelbaum and Grisso’s criteria), then they should be permitted to do so, even if it’s not one with which we ourselves agree (either personally or professionally). Therefore, a “good decision” becomes whatever someone wants, as long as they can understand the relevant information, appreciate its relevance to them, use that information to weigh burdens and benefits of different choices, and ultimately communicate a choice. But once you scratch a bit at that veneer, you find there are deeper problems. What does it mean for someone to want something? Is a preference what I say I want (expressed preference)? Or is it what I show you I want by the way I live (revealed preference)? Or maybe it’s what I would want if I was best equipped to make this decision (informed preference)? Or is it what I would want if unjust forces weren’t acting on me to make me believe I wanted something (adaptive preference)?
I don’t think the tension can be settled in the abstract. Choices must be made in real life by real people as they weigh non-commensurate values and clinicians attempt to discern, by getting to know their patients, how these various facets of preference illuminate what kind of person that patient is and how they might journey forward through the rest of their life (however much of it there is, and with whatever things remain unknown). However (and Blumenthal-Barby goes into this more in her book), I do think someone can make a bad decision even if they have the capacity to make it. By bad decision, I mean one that will harm them, fail to promote or express their values, and that they may come to regret.2 Clinicians can empower or disempower their patients in making good decisions, and that involves more than just assessing their capacity to make the decision.
How are you feeling?
It’s not just the patient’s emotions that matter, but the clinician’s too. That isn’t to say the clinical encounter is the place for the clinician to process those emotions, but emotions will nevertheless influence the clinician’s conduct. Why are you frustrated even before meeting with this person? Can you allow a few moments for sadness after leaving the room of someone to whom you just delivered bad news? Is that fear you’re feeling when you consider coding this person? While you might share glimpses of these emotions with your patients (e.g., “I’m worried about you.”), it’s better to take these to others outside the clinical encounter, to trusted colleagues or your own therapist. That isn’t to say your speech should be devoid of emotion - far from it! If it’s sad, be sad. If it’s happy, be happy. Just consider how your emotions influence what you say. A few moments of reflection on how your emotions influence you with patients (and with this patient) might set you up for speaking more helpfully.
What’s the bottom line?
Major medical decisions are complicated, and emotional turmoil can make it even more difficult to discern a path forward. It’s doubly difficult when you don’t know the goal of care. Once you’ve spent some time figuring that out, you’re better prepared to help your patient. When you’ve got something to say, you might consider sharing the bottom line up front (after, yes, asking permission: “Is it okay if I share what we found…?”). Whatever needs to be said can be said in a sentence or two: “I’m worried this infection has gotten so bad we need to transfer him to the ICU. He’ll need more medicine there and possibly a breathing machine.” Sometimes it can be even simpler, “I’m really worried she’s dying,” or “Good news: the scans are clear!” People are free to ask all the questions they want thereafter, but your main point has been conveyed. That’s not enough information for informed consent, so, knowing their goal of care, you might follow it up (with permission!) describing different scenarios. You need to provide the right amount of information of the right quality. Some people will need more or less, and others of varying qualities. You figure that out getting to know them, their values, and their goals of care.
Are you just checking boxes?
“Getting consent” can boil down into two varieties: a mere formality where the goal is to have the patient sign the form as quickly as possible, and a massive overload of meticulously provided information offered under the presumption of medico-legal protection. Either approach can be guided by the same philosophy: this is just another requirement to meet, and I need to make sure I do what’s required. The result can be the toxifying of information (and a stumbling into the uncanny valley). What if, instead, clinicians spoke so that they could more clearly listen for their patient’s values and goals? What if they asked better questions? Informed consent is critical, but the differences between truly informed consent and captured, toxified consent are vast.
How can we respect people?
At the root of all this is learning to respect people as people, not merely as bearers of autonomy. Modern medical ethics might trick us into believing that autonomy is the only thing worth respecting, but really we aim to respect people by way of empowering them. If they could have tackled this health issue on their own they probably would have done it already. Respecting someone as a person looks different depending on the circumstance. For one person, it may mean providing information succinctly and clearly, then receiving a decision about which they’ve clearly thought deeply and aligns with their values. For another, steeped in emotional turmoil, substance abuse, and interpersonal conflict, it may require tightening up the boundaries of the decision-making process, perhaps using gentle nudges. Some people are ambivalent, others are just evolving in their decision-making, and still others are apathetic. Each requires a different approach. A clinician may attempt to persuade their patient toward a particular course of action, they may recommend a course of action, they may even nudge this way or that. The appropriateness of any of these approaches again varies depending on the circumstance, but maternalistic grounding on the patient’s values and goals will go a long way toward ensuring you remain on the right path: “While paternalism relies on an individualistic conception of autonomy and identifies decision-making in which the clinician assumes decision-making control based on the sense that they know what is best for the patient, in maternalistic decision-making the physician guides decision-making within a relationship such that interests and autonomy are mutually reinforced…”
This aligns with what Alasdair MacIntyre observed about autonomy: “Autonomy is not, as Kant thought, a property of every rational agent. It is an achievement and a social achievement, as is rationality itself. It is in and through our network of relationships that we achieve or fail to achieve rational control of our lives. … if we are to look for autonomy and rationality, we should seek them not in individuals abstract and isolate from their social roles and relationships, but in individuals at home in those roles and relationships.”
I don’t have my hands all the way around this - detoxifying information and all that. Sometimes I get flustered and speak when I should remain silent, or say this when I should have said that. But these things provide a useful, humbling reminder that helps me keep my eyes open.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
A powerful retelling of triaging dilemmas after Hurricane Katrina in Louisiana and the earthquake in Haiti. Triage can sometimes feel frustrating and mundane (e.g., waiting in line), but other times it carries life-or-death consequences. When mishandled, it devolves rapidly to catastrophe, as happened at one hospital after Hurricane Katrina. How we triage reveals what we value, and it’s really important to have systems in place well before the need to triage arises.
“GeriPal: Evidence-based Messaging for Serious Illness Care”
It turns out talking about a “good death” and showing photographs of clasping frail hands isn’t a good way to garner support for palliative care. People want to talk about living well. I appreciate the conversation about public messaging in palliative care. I also appreciate the pushback: hospice and palliative care clinicians often see themselves in a role of challenging the status quo of ableism and death denial, but that doesn’t make our services broadly popular. A challenge.
“The Karamazov Complex: Dostoevsky and DNR Orders”
A clever reflection on the parallels between the plot of Dostoevsky’s The Brothers Karamazov, and the many-layered, subtle communication that occurs between physicians and patients. Spoiler alert for those who haven’t read The Brothers Karamazov.
Closing Thoughts
Dad’s in his chair. Mama’s on the phone. TV’s makin’ all of us angry and alone. Talkin’ makes us yell, yellin’ makes us sad. Comin’ home used to feel right, now it just feels bad. But they’re my family. Let’s just have supper. Here, pull up a chair. It’s hard to feel so far away, sittin’ with you here. Cornbread’s in the oven, chicken’s on the stove. Let’s just have supper, before the beans get cold.
Let’s Just Have Supper, Nora Jane Struthers and Korby Lenker
A fictionalized case, but nevertheless shared to demonstrate a deeper truth.