Editor's note: Second of two parts. You can read Part I here.
Throughout the history of modern medicine, the physician has occupied a sphere of trust and power. In 2011, Times economist Paul Krugman remarked, "There's a reason we have TV series about heroic doctors, while we don't have TV series about heroic middle managers."
Up until the 1970s, that authority was systemically unquestioned. The idea that doctors prescribed and patients obeyed—sometimes blindly—is known as medical paternalism now, but at the time it seemed the obvious way to conduct the relationship.
For most physicians who trained under this paradigm, this was not necessarily an exercise in hubris, but a necessary part of compassion, Dr. Barron Lerner, a bioethicist and internist at New York University's Langone School of Medicine, writes in a recent book about the doctor-patient relationship. Patients did not have the benefit of a medical education or experience, and fear often clouded their judgment. In the post-war era, physicians as a matter of routine withheld cancer diagnoses from patients in an effort to prevent that fear. Radiation and chemo were "just to be on the safe side."
Patients, for their part, acquiesced to that authority: Harvard University sociologist Talcott Parsons coined the term "sick role" in 1951, which gave a name to the patient who dutifully follows physician orders, believing that because he is exempted from day-to-day obligations due to illness, it is therefore his responsibility to cooperate fully in his recovery. It wasn't until the women's health movement started gaining traction that patients began to push back against the physician's sovereignty.
In the 1950s and 60s, radical mastectomy underwent a sort of vogue in the medical community. Just before the turn of the century, a Johns Hopkins surgeon named William Halsted pioneered the concept of cutting away at shoulder muscles, slicing through collarbones and evacuating ribs in the mistaken belief that removing the home of the cancer cells would cure the cancer itself. The echoes of these surgeries resonated for 50 years, during which time a surgeon named Jerome Urban fathered the "super-radical mastectomy," in which the parts of the sternum and ribcage were removed.
For decades, Lerner says, these surgeries were often performed without patient consent. Lerner writes that many physicians believed that positive biopsies indicated immediate radical mastectomies. Instead of waking a patient to obtain consent, physicians would ask the husband's permission if he were present, and if not, simply carry on with the procedure. "When a woman awoke from this operation," Lerner writes, "she commonly reached for her chest to see whether or not her breast was still there, an experience that many described as thoroughly traumatic."
Groups of activist women, such as journalist Rose Kushner, began to refuse both the doubled-up procedure and the quick use of the disfiguring operation. Meanwhile, Barbara Seaman had been busy advocating for inserts in birth control packages, detailing the then-high risks of oral contraceptives—risks that physicians routinely kept from the women to whom they were prescribed.
"The first real consumers [of healthcare] were women," Lerner said to Healthcare Dive.
Then came Tuskegee. In 1972, the Associated Press revealed that the Public Health Service, working with the Tuskegee Institute, had been conducting a study on the effects of untreated syphilis in black men without informing the men of the true nature of the study.
The study went on for 40 years, during which time the men were never offered the appropriate treatment for their disease. Even when penicillin became "the drug of choice" for syphilis in 1947, it was never offered to the men in the study.
It was at this moment that the word "patient consumerism" began to appear in modern literature. With the growing civil rights and women's rights movements, patient rights inevitably followed.
It would be a long time before savvy patients were logging on to WebMD to self-diagnose, but the idea that they had the right to make their own care choices became inevitable.
"When you throw in Tuskegee, which kind of knocked doctors off their pedestals, that opened the door for a more consumerist approach [to medicine]," Lerner said.
The Internet fuels the 'ownership society'
Politically, healthcare consumerism also has ties in a conservative agenda spawned during the George W. Bush administration's "ownership society." High-deductible health plans and health savings accounts emerged on that premise.
"That’s when you started hearing terms like 'skin in the game,'" Engelhard said. This was the emergence of the philosophy that if patients, or "consumers" of healthcare were comparing options and choosing the one that best matched their budget with their needs, it would be more cost-efficient for the system as a whole.
Fostering that kind of consumerist attitude on a national scale made sense given that the doctor-patient relationship was evolving in that direction. The early 2000s weren't that far removed from Prozac's FDA approval in 1987—a drug that had become a cultural celebrity, with all of the commercial potential that celebrity entails.
Psychologist and author Dr. Peter Kramer coined the term "cosmetic psychopharmacology" to describe the drug as a coveted product that can turn an already healthy person into a better one. Commercials ran on TV for the first time and patients began requesting a specific drug from physicians. And physicians, reimbursed on a fee-for-service basis, had a vested financial interest in giving it to them. The "patient," for some doctors, had become the "client."
"Physicians are sensitive to the demands and wants of their patients because they want to maintain the relationship and built trust," Engelhard said. "This consumerism is a double-edged sword because you have people who are not trained in medical knowledge going out into the ether and trying to self-diagnose. That's good and bad."
Nowhere was the tension more evident than in the debate over direct-to-consumer advertising. The United States is one of only two countries that permit DTC advertising of pharmaceuticals, legalized here in 1997. According to Medical Marketing and Media, many physicians felt "pressured" to prescribe drugs that they wouldn't otherwise have recommended as a result of the new regulations.
Others had a more virulent reaction. Barron Lerner remembers being in a meeting with several doctors in the late 1990s when one of the more senior physicians in the room "exploded" on the topic.
"He was just so angry at the notion that [pharmaceutical companies] would tell patients things directly, that they would be promoting their products," Lerner recalled. "I quietly sat in the room thinking to myself, there's obvious downsides to this but in general, I support people getting to know as much about their medical conditions and options as possible."
Then came the Web, which aggravated the argument over patient access to information.
Suddenly, patients had an avenue through which they could access that formerly unattainable physician's plane. By consulting "Dr. Google," in some cases patients could supplant the clinician entirely—at their own peril, some physicians might argue.
Today, one in three Americans has gone online to try to figure out a medical condition, according to the Pew Internet and American Life Project. Asked about the accuracy of their self-diagnosis, 35% say they did not visit a physician to have their conclusion confirmed. More strikingly, user-generated online encyclopedia Wikipedia is now the No. 1 resource for medical information online—including among clinicians.
Some of this new generation call themselves "e-patients," a word that could just as easily be replaced with "consumer." The evolution is perhaps best exemplified by the WebMD saga. Although the company has gone through many iterations since Jeff Arnold founded it in 1996, WebMD now notably uses the word "consumer" in the first line of its mission: "Help consumers take an active role in managing their health by providing objective healthcare information and lifestyle information."
The dispute over the risks of WebMD and patient Googling continues in doctor's offices across the country. The FDA’s 23andMe decision is another good example of this debate. While 23andMe can still sell the raw genetic data, it's virtually meaningless without the trained eye of a geneticist. The central question of patient rights remains, exacerbated by the rise of big data: How much do patients have a right to know without the interpretation of a trained "middle man"?
The consumerist model breaks down
Tom Lee originally trained as an internist at Boston's Brigham and Women's Hospital but now is the CEO and founder of One Medical, a primary-care startup that has raised over $100 million in financial backing. With offices in major cities across the country, One Medical offers luxury offices, same-day appointments and email communication with physicians, among other perks—all for a $149 to $199 per annum fee.
Lee will talk enthusiastically about the use of real gowns in One Medical offices, a choice he says the company made because traditional paper gowns send a strong message that the patient isn't worth an "actual piece of fabric."
One Medical epitomizes the consumer model, designed to attract and keep discerning clients. Although the company uses "consumer" internally, One Medical prides itself on a patient-centered clinical philosophy that emphasizes shared decision-making.
"I don't view the two [patient and consumer] as distinct, but they can be bastardized into two different extreme forms that I think are problematic," Lee said.
Under one definition of consumer, patients are drug-hungry and pushy, ordering physicians around and insisting on the wrong treatments based on information they got off WebMD. Under one definition of patient, those receiving care are at the mercy of over-worked physicians who have neither the time nor the inclination to get to know patients and choosing the wrong course of treatment.
For Lee, the real distinction is determined by what lens you look through.
"If you're patient, you are thinking like a consumer: You're thinking about quality, service, value," Lee said. "And if [you are a provider who is] being responsive to that pressure, you're thinking about quality, service, value. There's nothing wrong with that pressure because we want to do what's in the patient's best interest in a thoughtful way that's affordable."
Here, Lee hints at another fundamental risk with treating the patient like the consumer: Affordability.
"I believe that healthcare is a human right. A patient deserves healthcare as a right. But does a consumer?" writes Leana Wen, Emergency Physician and Director of Patient-Centered Care at George Washington University.
"If your healthcare plan doesn't pay for XYZ, you can shop for a different healthcare plan, but at some point, if you can't pay out of pocket, being a good consumer doesn't really help you," Lerner noted.
One Medical has relatively affordable out-of-pocket prices, but the practice does not take Medicaid—although Lee believes that in the future, the model will be able to expand to care for all populations.
Engelhard, like Lee, believes that there is a space in which the role of consumer and patient can comfortably cohabitate—but not in a moment of crisis.
"Purchasing healthcare coverage is becoming more of a commodity," Engelhard said. "But I still think that when your mother, father, child gets that incurable cancer and there's only 1% chance of them surviving—it loses its value. It's valueless."
Consumer 'nirvana': The next step?
Perhaps where the consumer-patient parallel breaks down most dramatically is in the delivery of complex procedures. It automatically excludes one of the most valuable forms of consumerism from a vendor perspective: repeat purchasing.
In the case of a PS4 or an iPhone, a consumer is selecting a good that she intends to replace in a few years. But most people will only have a heart replacement once. Bypass surgery? Probably a one-time purchase. This means providers have to start competing for patients as institutional clients rather than consumers of individual procedures.
But even here, there is room for consumer thinking. Novant's Jesse Cureton, who came from Bank of America, lays out three buckets of consumerism that the 14-hospital system focuses on: The non-patient consumer, the patient consumer and the client consumer.
The first is primarily only engaged with the hospital as part of a population health strategy, while the second is the patient who has an acute need or health episode. The third group is where Novant is putting its primary focus.
"In wealth management, a client is different from customer," Cureton said. "The customer is driven by a transaction. The client is driven by a relationship."
Established titans like the Mayo Clinic have cultivated brand loyalty—the answer to a consumer good that defies repeat purchasing—but the concept is still developing in the industry at large. And absent a consensus among quality ratings, many hospitals without the marketing budget of a Mayo or a Cleveland Clinic will find it difficult to cultivate those customer relationships.
Novant calls that kind of relationship, in which a client consumer acts as an ambassador for the organization "nirvana."
"We are not there today," Cureton said. "This would change how we approach and engage with the patient."
After Adrienne Boissy (who we visited in Part I of this series) had calmed her heart rate, she tried to think about how she could best respond to Emily's request for advice. It took her a minute. She had to let go of the medical element of their relationship—the facts, the agenda—and embrace the uncertainty of the moment. Medicine, for Boissy, is an emotional practice. She isn't afraid to cry in front of a patient. She thought, in that moment, the best thing she could do for her patient was to be a human being sitting next to her.
So she asked Emily questions instead of answering them.
"I said, 'Tell me about what you’re thinking that future looks like for you?' 'What are you most afraid of when you think about a future with MS?' 'How has this relationship been supportive for you to date?' 'What are you hoping to be able to do down the road?'" Boissy said.
Boissy hates the words "consumer" and "provider." Patient and caregiver, she believes, are still the appropriate ways to refer to the two people involved in a healthcare encounter. Had she not had a personal relationship with Emily—one she believes is undermined by the use of words like consumer and provider—she believes they would have released her from the hospital having treated only the disease, not the person.
"This is a unique time," Boissy said. "The pressures on clinicians are greater than they have ever been. You see increasing literature on burn-out in physicians."
"The very path forward," Boissy said, "is through our patients."
As for Emily, what choice she made remains a mystery to Boissy. Her gut feeling is that Emily wanted to let her life unfold a little bit before she committed to marriage—but to Boissy, it doesn't matter. What matters is that in Emily's moment of crisis, she offered care to the best of her ability as a physician.
Have feedback? Send us an email.