On Paternalism, Autonomy, and Healthcare Consumerism

Who gets to decide?

We’re continually grasping for mechanisms to drive value in healthcare while figuring out how to provide a better patient experience. It’s a precarious balancing act. To satisfy the value side of the equation, treatment must be not only high quality but also high yield — able to provide clinically impactful results that justify risk and cost. Hip replacement surgery for advanced arthritis is one of the highest yield treatments not only in Orthopedics, but in the entire field of medicine. In 2007, Lancet named hip replacement the “Operation of the Century” for its ability to provide predictable pain relief and functional improvement for patients with advanced arthritis. Conversely, routine knee arthroscopy surgery for arthritis (knee scope or “clean out” surgery) was included on the “Choosing Wisely” list of procedures to be avoided as harms of the procedure are felt to outweigh any benefits. A well performed (high quality) intervention that has dubious clinical impact (low yield) would still be considered low value. How do we determine whether a treatment is high yield or low yield? Who gets to decide what’s appropriate and when?

In medicine, paternalism refers to a care approach whereby physicians make decisions for patients ostensibly with a patient’s best interests in mind but not necessarily with the patient’s direct input. The justification for paternalism is rooted in medical complexity and information asymmetry. Simply put, doctors must drive decision-making because healthcare is too complicated and giving patients autonomy could lead to harm. Put away the pitchforks and torches — this way of thinking has (rightly) been called into question and is no longer supported by professional medical organizations. Shared decision making (SDM) is now considered the gold standard. Unfortunately, this doesn’t mean paternalism no longer exists. There is still work to be done.

It’s important to note that paternalism is different than malfeasance, negligence, greed, or unethical behavior. These concepts often get conflated with paternalism by those looking to criticize the traditional system. Though it’s a flawed approach, paternalism at least attempts to keep patients’ best interests in mind. While it’s fair to call out traditional healthcare for (at times) resisting patient autonomy, I don’t think manufactured paternalism strawman arguments accomplish much (especially when employed as a sales tactic). It’s also difficult to completely avoid paternalism as a component of the SDM process. In my own practice, there are still patients who rely on me to make the decision. “You’re the doctor” or “I have confidence in your judgement” indicates a level of earned trust that carries with it significant responsibility. This article from the AMA Journal of Ethics argues in favor of “selective paternalism” — relying on physician discretion in cases where SDM is impractical, impossible, or fails to reach a consensus. Of course, things are rarely as straightforward or cut-and-dried as we would like. The slope gets quite slippery quite quickly. As eloquently stated in the article:

“The subtleties of medical decision making are complex, and standards delineating a balance between patient autonomy and medical paternalism remain undefined.”

On the SDM scale, patient autonomy is the counterweight that balances physician paternalism. Patients should be empowered to make decisions. Our job as clinicians is to ensure these decisions are informed by the available evidence while minimizing the influence of our own biases. (A lofty goal that is often easier said than done.) For me, one of the most enjoyable parts of being a physician is the challenge of taking complex concepts and presenting them in a way that is accessible and understandable. I love using metaphors, parables, and analogies — although admittedly not all of them are as clear or clever as I’d like. The typical cadence is to define the problem/diagnosis, outline treatment options, and discuss the evidence that supports (or doesn’t) the efficacy of each. If SDM works as intended, the patient chooses the path that best aligns evidence-based treatment with their own goals and expectations. In a perfect world, patient autonomy balances precisely with medical paternalism, and the SDM process produces a high yield solution. The patient’s best interests are met not because I decided for them but because I gave them the tools to decide for themselves.

As paternalism has been conflated with malfeasance, so too has patient autonomy been conflated with consumerism. Yes, autonomy means allowing patients to make decisions for themselves. But it also means supporting and educating them throughout this process. Some view healthcare consumerism as absolute patient autonomy — the ability to make decisions devoid of any external influence or input. In traditional business, the customer is always right. Should the same be true in healthcare? Or should there be selective autonomy just as there is selective paternalism? What happens when patients choose treatment that is low value, not supported by evidence, or even potentially harmful? One proposed model is “Professionally Driven Best Interest Compromise” (PDBIC) which strives to resolve such conflicts.

The goal, as always, is to do what’s right for the patient. I’m skeptical of those who hide behind a smokescreen of consumerism and patient choice while offering solutions that don’t achieve this goal. Minus points if you pile on strawman paternalism arguments and handwave the evidence in support of your treatment. Admittedly, I’ve never liked the idea of calling patients consumers. The principles of consumption just don’t seem to mesh well with healthcare and its expensive, finite, and limited resources. In my (perhaps paternalistic) opinion, the relationship a patient has with their healthcare provider is not on the same level as the relationship they have with, say, a Big Retailer. Though postmortems on Walmart Health and Walgreens/VillageMD are plentiful, I suspect underappreciating this fact was a significant contributor to their failures. Similarly, Apple sells consumer health products. But the company has yet to consistently help patients make informed, impactful decisions about their health. Stay tuned to that part as the potential to do so still exists. CVS/Oak Street and Amazon/One Medical/Iora are also worth following as they try to thread the needle on retail healthcare.

A lot of what gets couched as consumerism in healthcare is actually a call for better patient experience. Paternalism and autonomy aside, there is no question that interacting with the system is, to be generous, challenging. Healthcare could learn a thing or two from retailers in this regard. While a better patient experience alone isn’t sufficient to solve the VBC/quality conundrum, it is sorely needed. We don’t have to call patients “customers” or consumerize healthcare to justify easier access, better transparency, thoughtful integration of technology, and a more patient-centric approach.

The engine that drives shared decision-making is evidence-based medicine (EBM). EBM informs the discussion and puts its thumb on either side of the paternalism-autonomy scale as required. It determines what qualifies as high yield, high quality treatment. The healthcare system is at its worst when it combines paternalism with the absence of an evidence-based approach — the definition of low value care. Such failures lead to unnecessary procedures (overuse of cardiac stents), tests (MRI in the setting of knee arthritis), and surgeries (unindicated spinal fusion) — and their subsequent poor outcomes. On the flipside, there is nothing innovative about charging patients out of pocket for unproven, non-evidence based, potentially harmful treatments (whole-body scans, “regenerative” knee injections) in the name of consumerism.

While the EBM remains the gold standard that informs the SDM process, reality is a bit trickier. The dirty little secret is that EBM isn’t as bulletproof as we pretend it is. Studies are conflicting or fail to draw definitive conclusions. Methodologies are flawed. Biases limit generalizability. There is a quantity over quality problem. I could continue, but the point is that we tend to assign a level of authority and finality to EBM that it frequently doesn’t deserve. That doesn’t mean we should adopt an “anything goes” approach. EBM should be followed whenever possible. However, the SDM process needs latitude to handle this fuzziness. It’s incumbent upon us to develop mechanisms to account for these shortcomings in a value-based approach.

A more sophisticated system personalizes treatment while staying within the bounds of EBM and SDM. Low value care isn’t no value care — it just needs the right clinical application. We now have the tools to bring more nuance and depth to these discussions (and improve patient experience while we’re at it). Until now, value determination mechanisms have been crude and, thus, largely ineffective. By collecting high quality data and using that data to develop and refine care models, we’ll generate better evidence and have more success achieving value-based care. “Consumerism” shouldn’t be defined as a cynical attempt to offer spurious alternatives to a manufactured strawman, it should be defined as improved patient experience. Delivering a better experience is a critical component of high value, high yield healthcare. It deepens the connection between clinician and patient, engenders trust, and facilitates shared decision-making. Acknowledging the complex interplay between paternalism, patient autonomy, and evidence-based medicine is the first step in advancing the conversation.