Who Knows Best: The Doctor or the Patient?

The Gray Anatomy of a Slow Hunch

Have you ever disagreed with your healthcare provider? Maybe about a diagnosis or a recommended treatment for you or your family member? If you disagreed with the advice, did you still take it? Or did you leave the prescription unfilled, the appointment with the specialist unscheduled?

While Americans largely report satisfaction with their own physicians, there is growing distrust in the American healthcare system. When you look inside the statistics, you see more distrust among certain segments of the population, including younger Americans and those with lower-incomes.

The Changing Doctor-Patient Relationship

I am the daughter of two doctors, and a childhood of family dinner conversations gave me no reason to distrust the integrity of their profession.

Additionally, I work at the largest health and health care foundation in the country and unsurprisingly I have several colleagues (including my boss, Robert Wood Johnson Foundation President and CEO Dr. Richard Besser, and my team-mate Senior Program Officer Michael Painter) who are physicians. Their specific perspectives generate much earned deference when discussing certain aspects of our health care experience.

While this deference to the physician has historically been shared by the public as the all-knowing authority on health (think Marcus Welby), my foundation has also funded research that confirms practices of mismanaged care, over prescribed treatments and dysfunctional patient/doctor relationships.

There has also been a significant shift over the last 5–10 years giving greater consideration to towards the patient’s preferences. A number of factors may have contributed to this shift:

• The increased access to online health information, a desire to correct the paternalistic approach to medicine that dominated the 20th century.
• The introduction of patient satisfaction as a key metric in measuring care.
• High deductible (sometimes called consumer-directed) health plans have become more common, often with the idea that if we introduced more consumer behavior into healthcare, we could address cost problems.

Furthermore, this shift has taken place during a time when many leaders in the health policy world have started referring to patients as “consumers.”

Who Knows Best?

A little over a year ago, my colleague David Adler shared a slow hunch with me: this shift from doctor knows best to patient knows best is not without tradeoffs. Are there times when deferring completely to patient preferences is as risky as the other way around?

For context, part of David’s work as a Senior Program Officer at the Robert Wood Johnson Foundation focuses on ensuring patients and other consumers of healthcare are represented in all levels of health system transformation. And David would be the first to assert that focusing care around a patient’s goals and needs is an inherently good thing, as is finding out what matters to patients and what drives their decision-making. David agrees that the model of the physician who can’t be questioned doesn’t serve patients well. However, he wondered if there were other alternatives — besides a model where the patient’s views and beliefs were never challenged either? Maybe there are limits to focusing on what patients think is the right treatment.

We are all familiar with the debates in about child vaccinations. While this case may be somewhat of an outlier because the evidence is so strong, what does it tell us about the murkier cases?

For example, what happens when a parent comes in expecting a prescription for antibiotics for their kid, and the doctor knows that this is a simply a common cold? Or when a patient comes in with back pain and wants surgery and pain relief, and is incredulous that the doctor points to evidence that the pain is best treated via physical therapy?

I think that the implications of David’s hunch — maybe the patient doesn’t always know best — are important. How do we keep what’s so great about a focus on what patients are saying they need, and balance it with evidence-based expert judgment?

The Gray Anatomy of A Hunch

As it often is with slow hunches, they are full of nuance and don’t lend themselves to black and white resolution. Instead it is a decidedly gray area, with no clear path on how to turn a hunch into a fundable idea.

In their absence, let me offer these four practices inspired by David’s experience.

• Share your hunch: As I discussed in my last Medium post, the first crucial step is to get the hunch out of your head, and hopefully, into the heads of others. David shared his hunch with me and other members of our team during a slow hunch jam. Articulating the hunch made it a thing…a hunch to be considered, mulled over, not to be forgotten and soon to take on a life of its own.
• Let others take your hunch out for a spin: When someone is intrigued by your hunch, chances are they in turn may try that hunch out on someone as well. David’s hunch resonated with past work I had done with the company Kognito and, as I shared it with others I met on the innovation conference circuit, I found it was novel and appealing to others as well. When I checked in with RWJF grantees Ted Kaptchuk and Eric Oliver — a physician who does pioneering research on the placebo effect and a political scientist who has studied conspiracy theories in health, I received a similarly encouraging reaction. This was an important hunch, and not one that, as far as we knew, others were discussing. David was on to something. I handed David back his hunch after it had been massaged and augmented by these big thinkers.
• Seek out diverse perspectives: David knew that balancing patient and doctor views needed to be looked at through a the lense of race. He checked in with RWJF Investigator Award winner, historian, Keith Wailoo who has written extensively on how the medical profession treats different patients differently (specifically with cancer and in pain management). Keith counseled David to understand the difference between patient beliefs (which can be challenged) AND their experience, which may have resulted in legitimate distrust with physicians — and should be respected. David also checked in with grantees and patients who work on health system redesign — expecting push back to this idea. Leaders of patient advocacy groups questioned how David was framing his hunch. They emphasized the gap between true evidence and practice guidelines, and gave examples of the shortcomings of clinical trials on which evidence guidelines are based — and the fact that treatment guidelines do change over time. They also saw patient/provider conflicts as valuable opportunities to understand what really mattered to patients rather than an instance where patients needed to understand what the “right” treatment was. The result was that rather than confirming his hunch, it forced him to think more critically about it.
• Be open for collisions: As I noted in my previous post on shared hunches, insights in Steven Johnson’s book “Where Good Ideas Come From” suggest that it is critical to be open for your hunch to collide with another’s. These “your peanut butter is in my chocolate moments” can be messy but can also create something quite delicious. Who better to collide with than Dan Ariely, author and acclaimed behavioral economist? I ran into Dan at TED 2017 and he shared his interest in exploring the idea of paternalism in healthcare. Similar to David, while acknowledging that there had been on one level an appropriate backlash against paternalism, Dan questioned whether that pendulum had swung too far in the opposite direction. Maybe in some cases, a paternalistic solution is the best way to go. I connected David and Dan and then they decided to pursue a project together that could explore both their hunches simultaneously.

What’s The Path of Your Hunch?

What started out as a hunch turned into an idea which manifested itself as a grant — an important process outcome in the world of philanthropy. Though the project is underway and the final results are unknown, Creating a Framework to Balance Autonomy and Paternalism in Health Care could result in clear guidelines on when and how it serves our collective interest for doctors to be more paternalistic versus when it is more critical to defer to the patient wishes — a tool that could guide transformation of how care is administered, measured and reimbursed. David, who has spent a lot of time reflecting on the parallels between education and health policy hopes that the general learning can help others rethink power dynamics in other fields like education.

If you’re holding on to a hunch that could very well impact all of our health and well-being, please consider sharing it with us. My teammates and I have spent years cultivating a network of pioneers with diverse perspectives. If you are open to letting us or them taking your hunch out for a spin, we’ll try to get it back to you in one piece.

Share your thoughts in the comments below or submit a Pioneering Ideas brief proposal for a hunch that we could explore together to build a Culture of Health.