Honoring agency
A common role for health professionals, including researchers and healthcare providers, is to protect and empower patients. For example, researchers commonly test if interventions “work” so that patients can know what solutions are useful and safe vs. not. Healthcare providers commonly take what works and translate those insights into support for patients to empower them towards health. These are laudable goals and activities.
And yet, something we’ve been increasingly struck by is the possible unintended consequences of protecting and empowering. We believe strongly in the good intentions of people (good apples); we are trying to understand how the system and social norms may be, unintentionally, facilitating poor outcomes (bad barrels, see here). We think there’s a barrel problem here that needs to be addressed.
The Pixar movie, A Bugs Life, sets up the struggle well. For those of you that have seen it, feel free to skip to the next paragraph. For those of you who have not, the movie is about an ant colony and, in particular, one ant named Flick, who is constantly trying to make things better for the colony, but keeps messing up. At the beginning of the story, Flick messes up big time! The grasshoppers - who provide protection to the ant colony from bigger bugs in exchange for a yearly offering of food - are coming for the Offering. Everything is going according to plan when Flick accidentally drops all of the food that the colony collected into the river. The movie is about how Flick finds a way to make it right. In the end, the way Flick fixes it is by helping the ants to each see their own individual agency and, by extension, their collective power. Once the ants realize their personal agency and collective power, they chase the grasshoppers away and live happily ever after.
Now, forget for a moment that the grasshoppers act a lot more like the mafia than a chivalrous protective force; the offering is really a bribe so that the grasshoppers won’t hurt the ants. For the sake of this analogy, imagine the grasshoppers really are doing a service of protecting the ants and ask for payment in return for this valuable service. What might go wrong?
In brief, the potential unintended consequence of protection is the moral of the story: the ants each have individual agency to act and, collectively, have great power, BUT they don’t know that because they think the grasshoppers actually have all of the power. This is illustrated by a quote from the queen ant at the beginning of the movie, “It’s our lot in life. It’s not a lot but it’s our life.” Why does that matter?
On one level, it means that any ant, like Flick, who is trying new things to make the colony better, are viewed as strange, trouble-makers, etc. They are not viewed as valuable members of the colony precisely because they have a sense of agency that is separate from the colony. This makes it hard for any possible aspiring ant to try to improve their own life and that of the colony in ways that don’t fit with the norms of the colony. Listen to Dana’s or any other patient innovator’s stories, and it is easy to see parallels.
This can likely also lead to learned helplessness for some, which is a well-researched psychological phenomenon. Basically, an individual tries to act to improve their own situation but can’t and, instead, is punished. When that happens over and over again, the individual learns that they are helpless, hence the name learned helplessness. The queen’s quote, “it’s our lot in life. It’s not a lot but it’s our life;” is an implicit statement of learned helplessness, and this is from the ant with power in the colony. While the movement towards patient empowerment is most definitely a step in the right direction, think about the classic doctor/patient interaction. It’s quite literally built into the name; a patient must be, above all else, patient, while the doctor comes to fix them. The classic model was that of the doctor with power and expertise, doling the answer, in the form of drugs and other biomedical solutions, with little time taken to account for the patient’s desires or opinions. Sadly, this is still far too common.
Extending the analogy outside of the story a bit, this becomes a systemic problem when the grasshoppers believe they have the power. Why? It can set up a self-reinforcing cycle whereby the only way things change for the ants is by the good graces of the grasshoppers. The grasshoppers become the doers, the makers, and solvers and the ants are the receptacles of the goodwill of the grasshoppers.
It’s easy to see how this is a fairly common problem that has been going on for quite some time within the healthcare/research ecosystem. Researchers devise new sexy tools and drugs, which get commercialized. Healthcare professionals are then advertised to sell the new drug, device, etc, even if cheaper approaches might be more appropriate and useful for a given patient. Patients are then instructed on what to take or do by the healthcare provider, and, here’s the key point, given a choice architecture that is limited to only those options that researchers, healthcare providers, and insurance companies (i.e., various professionals) agree on. As this list of stakeholders highlights, patient agency is subordinate to professional stakeholders. However, an egalitarian culture and values-based care is likely better for everyone involved and, in our view, in alignment with our vision of a better balanced system, biased towards the patient, but, again, that is still not the default system by any means.
In summary, a potential unintended consequence of protection is driving patients to forget their agency and power. This can result in a collective sense of learned helplessness, which is debilitating for individual patients, particularly if professionals do not help them in the way they actually need. It can be even more problematic for patient innovators who are shunned by other patients, viewed as troublemakers by professionals, and potentially viewed as deeply “dangerous” to the status quo. At a systems level, it breeds an unhealthy system that squanders innovation because the unique lived expertise of patients do not permeate the system.
What to do?
Honor the agency of all individuals, especially people formally known as patients.
Recognize each person as human, with unique lived experiences, skills, knowledge, and, yes, problems and also recognize that each person can choose and, thus, has agency, even if they have forgotten it. A central task of professionals should be to constantly remember the agency of those they serve and to support that agency, particularly when the person has learned to be helpless. This can mean a person using their agency to choose to let professionals make decisions for them to being a super agenic person like Dana building their own solutions and all of the choices in between.
Beyond this, build the system to honor the agency of individuals. The movement for patient-centered care, patient “empowerment,” and values-based care is a vitally important part of this, but it is not the whole answer. The phrase patient empowerment tells the story; empowerment implies that the professionals have the power and that they are giving it to patients. Patient empowerment is a step in the right direction, but a health/research ecosystem that honors the agency of all involved should be the ultimate goal.