Are patients consumers?

Defining the terms “patient” and “consumer” will get us started here and also provide the insight and common understanding we need to tackle this seemingly elusive question.

Defining the Terms

Patient /ˈpāSHənt/

1. adjective: able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.
   Synonyms: forbearing, uncomplaining, tolerant, long-suffering, resigned, stoical.
2. noun: a person receiving or registered to receive medical treatment.
   Synonyms: sick person, case, sufferer, victim.

I’ll get to the #1 (adjective) definition of “patient” soon enough don’t you worry, but to start, let’s consider #2 (noun) for about T minus five seconds. You’ll notice “a person receiving or registered to receive a medical treatment” could mean pretty much any adult or child human with an appointment at any healthcare facility.

Consumer /kənˈso͞omər/

1. noun a person who purchases goods and services for personal use.
   Synonyms: purchaser, buyer, customer, shopper.
2. a person or thing that eats or uses something.

Similar to the term “patient,” a “consumer” could be anyone, any where, at any time who purchases anything or uses anything. The definition doesn’t separate informed consumers from ill-informed consumers and then postulate that ill-informed consumers are not actually consumers. And I can see why. This path would get dark really fast.

The Literal Answer

If I wanted to be obtuse, I could correctly say that the literal answer to the question “Are patients consumers?” is yes. Consumers are people who use something or pay for something. Patients use healthcare and sometimes they pay for it.

The Not Literal Answer

For the purposes of advancing our understanding, let’s postulate that the answer to “Are patients consumers?” is actually “No.” Patients are not consumers.

“Patients are *not* consumers.”

Say we go with a more narrow definition of “consumer.” Let’s take “the consumer” to mean “the buyer in a transaction as defined by business law in a free-market setting.” Using the 80/20 rule, or more likely the 99/1 rule, patients are not consumers.

Patients rarely know how much they’ll pay before they get the bill 30–700 days later, especially if they are within spitting distance of a hospital. Or someplace that looks like a doctors’ office but is actually a hospital outpatient facility.

“Patients are not consumers” is even more correct when the patient has arrived on a stretcher, is in pain, has a mental impairment, or has a tendency to agree to surgery without questioning the rationale for the surgery, let alone the cost of the surgery. Maybe the patient doesn’t bother to ask about the cost thinking their insurance will cover it. Regardless, all of this adds up to patients are not consumers.

Where things get tricky is when the definition of consumer spills over to encompass not only people shopping in a free market, but also anyone who pipes up and advocates for themselves. The term consumer then begins to refer to anyone who regards themselves as having agency, anyone with the audacity to think they are an equal partner in their own healthcare journey or attempting to exert control over their journey, which may include carefully selecting their physicians.

It’s amazing how fast the narrow definition of consumer can devolve into this other one.

I didn’t read the original paper, but to see this smudgy consumer definition in the wild, take a look at this article by The Hastings Center. Or read on and I’ll save you the trouble. The article starts out fair enough: It’s tough be a consumer in our current healthcare system. But then things go south pretty fast. The authors write: “The Consumer Metaphor Could Erode Physicians’ Professionalism.”

Oh. Kay.

The authors feel that these consumer-patients may show up in clinic demanding treatments with no evidence and if the “consumer is always right” then doctors will be helpless to push back. Patients as consumers “devalue physician expertise.”

Besides the pejorative overtones, my main issues with this piece are:

• Most of this article was probably written by authors who never suffered from a rare disease or had a child or parent with one. As a broad stroke, rare disease patients who don’t self advocate are often wonderful case studies of morbidity and mortality. Sometimes the consumer-patient is actually right.
• Patients who happen to be women and/or people of color also have issues simply trusting physician skill and knowledge without question. The medical establishment has, in study after study, a very real problem when it comes to diagnosing and properly treating patients who are not young white men. I do not say this to be inflammatory or as a lightening rod, I say it because it’s true. As just one data point to get you started, in thousands of cases, patients left the ER on doctor’s orders only to die of a heart attack soon after. I did an entire podcast on this with Maya Dusenbery as well.
• It also sounds very much like the authors harbor a very dim view of patient intelligence from both and IQ or EQ perspective. If the patient is smart and the doctor is smart, you’d hope their combined smarts would result in a synergistic better outcome, not the patient “devaluing” doctors’ expertise.
• It is an undeniable fact that the patient is the one who is ultimately going to decide whether or not to consume physician advice. Patients are not in clinic say 8,750 hours a year. Not treating them like they are the most important arbiter of of their own health or healthcare will result in all the non-engagement, non-shared-decision-making, patriarchal badness that has been shown time and time again.
• Medicare patients with chronic conditions see on average 15 physicians including 2 primary care physicians. It is rare that these physicians work together. Meaning, the only stakeholder with visibility into the entire patient journey is the patient. Patients who abdicate all consumerism and solely rely on “physicians… knowledge, skill, and obligations to patients’ well-being to recommend the best course of treatment” might wind up with 15 “best courses of treatment” including cascading drug adverse events and all kinds of contradictory or contraindicated goings-on.

Along these same lines, I’ve been on the Twitter and the Instagram and occasionally the Facebook and have seen plenty of posts from doctors who aggressively and nastily attack patients for acting like consumers. I’m sure their logic is similar to the above but I wouldn’t be bold enough to speculate on anything when it comes to Twitter or Instagram or Facebook.

Let me wind up where I’m going with this because I’m sure you don’t have to be Columbo to figure it out. Back to the #1 definition of the word “patient:

1. adjective: able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.
   Synonyms: forbearing, uncomplaining, tolerant, long-suffering, resigned, stoical.

Within all this patient “resigned acceptance of delays and problems” lies an Easter egg of a problem. It’s an Easter egg filled with whole lot of baggage and none of it serves to empower or embolden or engage. Do we really want to “center” care around an icon of tolerant suffering who we cultivate to have no consumeristic characteristics?

Bottom line: Anyone proclaiming that “patients are not consumers” or “patients should not be consumers” with an intent to silence patients into handmaidens of quiet obedience either hasn’t read the studies or doesn’t actually have the best interests of the patient in mind.

So if patients are not not consumers, then patients are consumers, right? Let us assess.

“Patients are consumers.”

So many problems lurk within this one. I’ll state the most obvious but the list could go on.

• Little relevant quality or cost information is available to patients and even if it was, patients do not typically have the data science backgrounds needed to process it. It’s tough to be a consumer when you don’t have the information you need to be one.
• Patients have been known to read the National Enquirer or search Dr. Google and come in demanding to be tested for seventeen types of malaria strains which may or may not be prevalent in Indiana or wherever they’re from. And then we expect doctors, in 7–12 minutes, to coach and counsel these patients to be better consumers. And after that, we expect those doctors to type all this into their cantankerous EHR and get the prior auth and later explain to management why the low RVUs. But I digress.
• AntiVaxxers. Mike drop.
• Study after study shows that patients need help navigating the healthcare system and any initiative to improve patient outcomes that doesn’t include steerage is doomed to fail. Because patients are not consumers of healthcare.
• I was listening to a podcast awhile ago and patients at cardio-”cash” labs were referred to as “akin to chattel.” Wow, that’s rough. But the reason that these places even get labeled as cash-labs to begin with is because patients are not consumers and they do what their doctors tell them.
• Once a week, I hear a story told by some amazing son or daughter or mom or dad or patient talking about toting around blood test and MRI results and making sure that the tests the one doctor ordered got scheduled and the results got sent back to the other three doctors who also needed them. It is insane how much burden is placed on patients to orchestrate their own care and they often fail. Because they’re not consumers.
• Add to this all the patients who cannot be consumers because they aren’t even conscious.
• Add to that all the work doctors do behind the scenes applying their knowledge and skill in ways the patients don’t know anything about and probably wouldn’t really understand or need to understand until the results come back anyway.
• A clear takeaway from the “High Deductible Consumer Health Plan” insurance paradigm is that patients who are forced to pay unaffordable sums for appropriate care often choose to forego it. Then they suffer or die from completely avoidable causes. It’s no less tragic every time you hear the same basic story over and over again.
• People who are in pain and/or damaged physically or mentally need compassionate care. They don’t need a system expecting them to make rational choices.

In Sum: In most cases, patients and consumers are not synonyms.

Paradox much?

So patients are not consumers and they are consumers. Luckily, there’s another way to look at this whole conundrum. And that is to reframe it entirely.

The Importance of the question “Are Patients Consumers?” isn’t the answer to the question.

The importance and relevance of the “Are Patients Consumers?” question isn’t the answer to the question. Not to get all existential, but the question itself is the answer. The fact that anyone is asking “Are patients consumers?” is lightening in a bottle of cold hard reality.

Patients, meaning all of us, are basically incapable of achieving healthcare consumer status in this country today. But we would all be well-advised to try, really hard, to do the best we can at it. Our current healthcare system demands it of us.

Those who do not appreciate the stakes at failing in the healthcare consumer category should consider:

• the devastating impact of surprise billing or predatory pricing.
• the countless rare disease or oncology or rheumatology or neurology patients who have had to fight for diagnosis and evidence-based treatment and then payment for that treatment.
• all of the employer coalitions and benefits experts with one proof point after another showing the critical importance of patients getting themselves to the right physicians at the right center of excellence. “Shopping” if you will.
• The incredible variability of patient outcomes in this country. While rightly attributed to many factors, one of them could be the patient’s chops as a consumer who can select the right treatment and the right meds to achieve the outcomes that matter to them personally.
• Shorter wait times, nicer front desk people, more conveniently located facilities with longer hours and other aspects of care that patients can competently evaluate have improved since more patients started acting more like consumers.

If you are a patient (today or in the future) do the best you can to be a good healthcare consumer. Despite all the forces that conspire against you, your health and your finances often depend on how well you do.

Sidebar: I find it very discomfiting when I hear doctors insist that patients who are trying to get the best care they can, or who are worried about the price of that care, are devaluing the medical profession. I need someone to explain to me how empowered patients who vote with their wallets or their feet (otherwise known as consumers), categorically diminish the capabilities and impact of physicians.

Tips for patients who want to be good consumers

• Only read health-related articles on websites that are run by respected healthcare institutions or scholarly research organizations. Seriously. Don’t read articles penned by columnists for celebrity gossip magazines, random “doctors” you don’t know anything about, or pretty much anything that hasn’t gone through some sort of editorial review. Don’t share these articles on Facebook or email them around. Here’s a decent article on how to be good consumer online.
• Keep in mind that extraordinary claims require extraordinary evidence. One doctor saying something that no one else in the medical community agrees with needs to back up their hypotheses with a lot of data and proof. As much as we all would like a simple solution or cure or explanation, it pays to be suspicious. Especially if the recommended treatment (or not-treatment) could harm you yourself or harm others who come in contact with you. There’s a cost/benefit analysis here that is outrageously relevant.
• Get a second or third opinion from doctors who are sub-specialists in your particular condition. Do your research to find these physicians.