Patient Empowerment is a Dangerous Euphemism
How to end the patient-physician power struggle and become a world-class patient.
It gnaws at you like a rodent, the nagging suspicion that your physician has missed something. The physical exam was rushed and the interview was abruptly halted. Your anxiety grows as your physician retreats behind the computer and its unintelligible charts and graphs. No one knows your body and how you’re feeling like you do. You’ve done your homework. You know there’s more to these symptoms than what’s been discussed and the consequences are dire if they’re misdiagnosed.
Such is the feeling of disempowerment. And if you’re advocating for your child or a loved one, these concerns can boil over to a full blown panic. No question, you have the moral high ground to do something about it. But I want to explain why you shouldn’t, at least not in the way these matters are typically negotiated.
Let me surface my bias immediately. My wife Deana and I have many inspiring, heroic, and yes, haunting memories of the last 16-years, advocating for the needs of our son. It’s hard to speak of the fragility of these things in academic terms when you’ve seen your child’s heart beating through an open cavity in his chest. In a very literal and serious way, our lives are in the hands of our healthcare professionals.
With that said, I won’t argue some weak-kneed deference to power. Quite the opposite really. I’m serious when I say patients will lead, and I’ll close with some suggestions for how to do that. But if we want to get good at this, to be world-class patients, we need to understand this issue deeply. We need to unpack what empowerment really means, and more importantly, what it entails.
I’ve learned that patient empowerment is a dangerous euphemism, masking a range of issues and competing priorities. It advances arguments for good behaviour, when what patients need most is good knowledge. There’s a deep tension between authority and knowledge. Ideally, both you and your physician are subordinate to the pursuit of good knowledge. The villain here isn’t the turf-protecting physician or the self-aggrandizing patient, it’s the prioritization of authority. Against the life and death reality of your health, knowledge rules.
What does patient empowerment really mean?
There are many definitions of patient empowerment in the medical literature. Commonly, it focuses on autonomy, the freedom from coercion and the independence to make your own decisions. It has both relational and psychological aspects: Empowerment is about the patient-physician relationship and how it makes you feel. So what could be wrong with that? Nothing, when examined in isolation. But here, in the swirling waters of relationships and feelings, any literal interpretation of patient empowerment drowns.
Patient empowerment entails a shifting of authority.
Critically, autonomy isn’t just about you. Your autonomy and freedom only makes sense when evaluated from the perspective of where that power currently resides. The Pulitzer prize-winning author and physician, Siddhartha Mukherjee pulled no punches about the fundamental relationship between a patient and a doctor. “Even today, the power lies in one direction: the doctor knows that the patients are there to try to seek help.” Physicians have always held the power, and if this is changing, it’s changing slowly. Mukherjee recognizes that his mere acknowledgement of this reality will raise hackles, and it says nothing about how the power dynamic should change in the future. But like it or not, patient empowerment needs to be understood as a shifting of authority.
Perhaps power can be shared. You’re happy to cede authority to your physician in medical matters. But you also understand the important experiential and personal aspects that demand your input. And your claims here are unimpeachable. Unfortunately, this perspective is insufficient to support the mandate of patient empowerment, to enable you to make autonomous decisions about your treatments. Where is the boundary between your symptoms, their underlying cause, and your treatment? It’s everywhere at once, your experience and the objective reality of it interwoven like a quilt. Laura Nimmon and Terese Stenfors-Hayes discovered that for experienced physicians, “power sharing” is rhetorical. Power is handled by the physicians, something they inherently own and use.
If your child’s life is on the line, would you still cherish “your right to make the wrong decision”?
People will rightly point out that medicine routinely weighs decisions where there are no universally correct answers. Treatments create a distribution of effects, some good, some bad. Here, proponents of empowerment argue that patients need all the relevant information about these compromises and trade-offs to make an informed decision. The challenge is that knowledge and expertise in weighing medical decisions is itself hard-won expertise. There’s a great deal of work in decision theory and decision-support systems directed to the problem of how highly trained physicians can make good decisions. In this, medical decision-making is better understood as a means of production for creating good knowledge. And once produced, good knowledge often leaves little room for subsequent decisions.
Consider the case of a sick child. Assuming the parents only want their child to live a long, happy and healthy life, what choice is afforded them? Good knowledge leading to safety or bad knowledge leading to death? If your child’s life is on the line, would you still cherish “your right to make the wrong decision”? There are rare exceptions, and I’ll speak to these in a moment. But given these goal-driven constraints, the question becomes, which party is better placed to assimilate the most relevant information and adjudicate it fairly? In this light, transparent and collaborative decision-making is more about how it makes us feel, satiating our scepticism and building trust, than any literal notion of autonomous decision-making. Again, laudable goals, but rarely your top priority.
Do you want to be a third-rate physician or a world-class patient?
Similarly, there’s nothing wrong with medical literacy, when examined in isolation. The internet has profoundly enabled patients in this area. I encourage people to learn as much as they can about their condition and treatment options. In a moment, I’ll introduce you to someone who’s taken medical literacy to dizzying heights. But in so doing, you have to acknowledge that there’s a limit to the understanding you’ll acquire, to say nothing of your lack of experience in applying that understanding. Peter Schulz and Kent Nakamoto, reflecting on the limits of patient literacy, are concerned with the unintended consequences. “For it may be that the precise and complete provision of information makes a patient interrupt or cancel a therapy that is beneficial to him.” There’s an old saying, “A physician who treats himself has a fool for a patient.” Do you want to be a third-rate physician or a world-class patient?
Even the most knowledgeable people are prisoners of their own perspective. And when you’re sick, or worse, when your loved ones are sick, your recall and decision-making abilities are diminished. Consideration of psychological factors and biases led Oxford philosopher Neil Levy to the paradoxical conclusion that patient autonomy is increased by limiting it! This conclusion, that effective and responsible autonomy involves limiting the degrees of patient freedom, motivates the development of aids in support of patient decision-making. Based on an analysis of over 100 studies, patients that use decision aids are more knowledgeable about their options, they feel better informed, and more involved in their care. And there are no adverse effects on health outcomes or satisfaction, at least among patients.
But it begs the question, how does patient empowerment make your physician feel?
Your physician has feelings, too
As with decision-making, out of enlightened self-interest, I’ll argue that you should care deeply how your physician feels. Pamela Wible marshalled evidence from a Medline poll of physicians, as well as her personal experiences as a physician, to the question of whether patient empowerment is a myth. Remarking on the obvious skew in power towards physicians, she wonders if patient empowerment is an oxymoron. She reflects on the increasing lack of autonomy felt by physicians as we move towards “assembly-line medicine” and the deep resentments that follow from these struggles for authority. “So who holds the real power in the healthcare system? It’s not the patient. And lately, it’s not the doctor. Most docs I know are disillusioned — or worse.” You don’t want a disillusioned doctor — or worse — providing your care.
Too often, tension and conflict is what autonomy-shifts deliver. Few people welcome criticism or questions they feel are superfluous to the job at hand. But at its core, their negativity stems from a genuine concern over your health and wellbeing. You’re in their care and physicians take that responsibility seriously. This is why many are frustrated with empowerment programs. They have a duty to the quality of service, and its difficult to serve more than one master.
The most dire of circumstances may be the only time when the priority of patient authority makes sense.
In her otherwise illuminating essay, there are two aspects that Wible gets wrong. “The concept [of patient empowerment] makes little sense. And it makes even less sense in the newborn intensive care unit, and emergency department.” First, we know that patient empowerment makes a lot of sense, that’s why it’s such an explosive idea. When it fails, it fails against a competing priority. Rarely should the priority of empowerment and authority-shifts be elevated above the priority of good knowledge.
And contrary to Wible’s examples of emergencies and intensive care, the most dire of circumstances may be the only time when the priority of patient authority makes sense. I can count on one hand the moments when Deana and I felt moments of authentic autonomy, and they were the worst experiences of our life. When Sam faced particularly dire prospects, when he was expected to die, his physicians sat us down for “the talk” about the quality of his life and the balance of his experience. These are moments where subjectivity reigns, where claims to good knowledge are fuzzy at best. Patients are not empowered in this way during the less extraordinary moments of care, and for good reason!
I was reminded of the difference between knowledge and empowerment recently through a poignant essay by the physician Shekinah Elmore. She describes how she learned of the genetic condition that predisposes her to cancer, and the profound impact it had on her psyche. “My knowledge has both empowered and broken me — I don’t know which it’s done more.”
You’re the CEO!
I want to conclude with a few suggestions on how to reimagine your relationship with your physician. Meet Larry Smarr, a physicist and pioneer in the application of computer engineering to medicine. Using himself as the guinea pig, Larry is pushing the idea of the quantified self to unprecedented levels. He measures and monitors what he eats and drinks, the calories he burns, and what he excretes (seriously). His DNA has been sequenced, he’s had extensive and regular imaging, and he maintains 3D models of his insides. Supercomputers crunch all that data to support decision-making, which he uses to deliver precise instructions (some would say marching orders) to his physicians.
I don’t think Smarr is a reasonable exemplar for patients. However, he does illustrate where things are heading. Medicine is continuing its relentless march away from subjective symptoms towards objective signs, signs that may be increasingly plumbed with technology. We can debate what’s lost in the process, but it’s undeniably impacting both patients and physicians. Soon, we may no more strive for self-control in healthcare than we do in air travel. We want to choose where to go and when, but thereafter we entirely cede control to others, humans and machines, for our safety.
So where does that leave you, the patient? Smarr encourages us is to become “the CEO of our own body,” and this is the posture I recommend. CEOs are legitimately empowered people, but they don’t behave in ways routinely prescribed by empowerment programs. CEOs don’t tolerate turf wars, however legitimate the underlying feelings. They don’t get bogged down in the weeds, however collaborative the spirit. They delegate authority to those that are closest to the truth, those that possess good knowledge and the experience to apply it. They support them, giving them the context, values and purpose they need to make good decisions, but then they let them do their job.
The first question, perhaps the only question, is Why?
But with delegation comes responsibility. CEOs hold their team accountable. If the Russian proverb, trust but verify, can navigate nuclear disarmament, it can navigate patient-physician relationships. Any physician worth their salt will evolve a clinical hypothesis to guide your treatment. Your physician should be able to communicate the explanations that underlie their decisions. Start there and return there at every step through the course of your treatment.
Patient empowerment programs often come loaded with questions to ask your physician. But the first question, perhaps the only question, is Why? Why do you think this treatment will help me? You’ll frequently be surprised by the answers. You may learn that your treatment has proved effective on only a small proportion of the populations studied, or that their specific effects and mechanisms are not well established. You may learn that alternative treatments, perhaps the ones you’ve Googled, carry undesirable side effects or dubious explanations.
This focus on the upstream sources of the knowledge, the received wisdom, its limits and veracity, neutralizes the perception of a power struggle with your physician. It subordinates authority to the pursuit of the best explanation for your condition and how to evolve a treatment plan that works for you.
I won’t pretend that the role of CEO will make your job any easier. There will be times when tough decisions rise to your office, and you’ll have to assert the vision you hold. You may find your physician is uncomfortable with your role as CEO and you’ll have to make a change. But if you’re doing your job right, leading with your values, focusing your questions on the veracity of the received wisdom and the evolving explanation of your treatment plan, you’ll be rewarded, even empowered.
From The Explainable Startup, exploring the science and philosophy of problem solving.