Consumer or Patient?

The newest edition of Health Affairs includes the story of Michelle Mayer, a patient whose odyssey seems to validate consumer-driven medicine—at least on the surface. But a closer look reveals that Mayer’s tale is no consumerist parable; in fact, it’s a great example of consumer-driven medicine’s shortcomings as a model for health care.

Mayer’s Story

At first glance, Mayer’s story seems to jibe with the ethos of consumer-driven medicine, with a well-informed, assertive patient cycling through obstinate doctors until she finally receives care that she felt was appropriate. The journey begins twelve years ago, when Mayer—a research assistant professor at the University of North Carolina School of Public Health—noticed swelling in her hands and was found to be producing a specific antibody associated with scleroderma, an incurable chronic autoimmune disease. Though Mayer “truly believed that [she] had scleroderma,” doctors diagnosed her with a less serious condition called Raynaud’s phenomenon.

But over the next year, Mayer began to experience symptoms consistent with scleroderma, like sluggishness, hardened skin, and uncontrollable itching. When she finally sought out a new rheumatologist, he confirmed that she did indeed have scleroderma. Irate that her passivity had contributed to the misdiagnosis of her condition, the then-newly graduated Mayer “put [her] new Ph.D. in public health to good use, devouring the medical literature on scleroderma.”

This is where you might say that Mayer starts acting like a ‘savvy consumer,’ clashing with providers who offered her services she didn’t want. When one doctor prescribed her a drug called methotrexate, Mayer objected, noting that “randomized controlled trials have shown that methotrexate was ineffective in scleroderma.” The physician was not amused at Mayer’s resistance, and the two terminated their relationship .

Subsequently, another doctor “informed [Mayer] that [she] needed to go back on chemotherapy to treat what appeared to be advancing lung disease” associated with scleroderma. But Mayer, who had “tried chemo previously with only a short-term benefit,” was “skeptical” about its supposed benefits. So she “returned home and graphed six years of [her] lung test results” and “e-mailed the results graph to [the] new doctor.” She also “wrote that [she] didn’t agree with the assessment that [she] needed chemo; [she] would reconsider chemo only if there were evidence of a [lung function] decline at [her] follow-up appointment.”

To prevent this decline, Mayer ran regularly and on her “next visit…lung function had increased 20 percent, an unprecedented improvement. When [her] rheumatologist reviewed the test results, he sheepishly said, ‘I guess you were right’” yet the two still failed to work together effectively—and so this doctor was also ‘fired.’ (Though Mayer doesn't address issues of coverage, one gets the sense that her university health insurance is pretty generous, given the flexibility she can exercise in seeing doctors and pursuing treatments).

But Mayer’s doctor-patient clashes continued. Physicians resolutely informed Mayer that she shouldn’t have children because scleroderma patients sometimes experience kidney failure during pregnancy. Eager to be a mother, Mayer again immersed herself in medical literature and found that, because she had a certain antibody, she “was at lower risk of a kidney crisis than were scleroderma patients with other auto-antibody profiles.” Against doctor’s orders, she went forward with pregnancy—and had two healthy children.

A Lesson in Consumerism?

Mayer seems to be exactly the type of patient that Harvard Business School professor Regina Herzlinger had in mind when she said that consumer-driven medicine was all about “convenience, control, and choice.” After all, Mayer educated herself about her medical options and shopped around for doctors because she was dissatisfied with the care she was receiving.

Indeed, Mayer lauds the importance of “empowered” patients, and supports policies that “encourage transition from a prescriptive approach, where the patient is instructed to follow the provider’s decision on treatment, to a collaborative approach, in which the provider informs the patient’s decision.” She even goes so far as to name consumer-directed health care as one of these policies.

But Mayer--and readers--should be careful in interpreting her experience as some sort of validation of consumer-driven medicine. Consumerist advocates like Herzlinger insist that patients can arm themselves with information to ensure ‘customer satisfaction’ in health care. But it’s important to keep in mind that Mayer has a PhD in public health and is a professional medical researcher. This is not your average patient. Before promoting consumer-driven health care, Mayer would do well to point out that her professional training is in the very sort of research she undertook in order to inform her health care choices. But in a full-fledged consumer-driven health care system, the rest of us would have to make do with watered down Zagat’s guides to doctors instead of digesting the original medical literature. In reality, few of us will graph test results of our lung functions.

Perhaps more important is that, despite being a savvy, empowered patient, ultimately Mayer wasn’t even pursuing consumerist goals. Her ultimate goal was not a consumerist transaction, but rather a personal relationship. Just consider how Mayer describes her current team of doctors, with whom she’s greatly satisfied. After much searching, she’s found a primary rheumatologist who “doesn’t use his academic pedigree as a weapon or as a shield” and is “down-to-earth and compassionate.” She happily notes that at “every visit we sit together like old friends and discuss my life, health, and disease” and that her doctor is “honest…and capable of saying, ‘I don’t know.’” She also describes her current family doctor as being “smart, affable, and accommodating.”

Nowhere in this description does she say that she gets a good deal on health care, nor does she categorize her experience as convenient (in fact, her rheumatologist is five hours away from her home). She doesn’t even talk about control: her doctors aren’t great because they do whatever she wants, they’re great because they treat her as a partner. Indeed, she notes that the best doctors are those who understand that she brings “valuable information about…personal experience with [her] illness, [her] values, and [her] goals.” Assertive though Mayer may be as a patient, the adversarial relationship of buyer and seller--which is key to consumer-driven logic--are very far from her mind.

Indeed, ultimately Mayer is after patient-centered medicine, focused on incorporating the values, priorities, and knowledge of patients into the treatment process. As she eloquently puts it, the goal is for doctors and patients "to relate to each other as fellow human beings, each with much to bring to the examining table." In a patient-centered context, Mayer’s doctors would have discussed the risks of pregnancy in depth, weighing the risks against he desire to be a mother. Similarly, the doctor who prescribed chemotherapy would have openly discussed Mayer’s previous experience and explored her willingness to go through such a strenuous process as it related to possible risks and benefits.

What Mayer is saying is that the quality of medicine is tied to the quality of doctor-patient relationships--and that's something that consumer-driven medicine, eager as it is to reduce health care to a run-of-the-mill commodity, is slow to acknowledge.  So while Mayer may come across as the perfect model of the assertive consumer, in reality her tale is a powerful lesson in what consumer-driven medicine doesn't 'get' when it comes to health care. In this parable, even the most savvy, empowered patient wants something special from health care—and it’s something that you can’t reduce to market logic. 

Comments

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Is is going to happen! For the first time in ages we have strong, courageous leaders who recognize the importance of the health care crisis and are readly to take action. I am very optimistic and most physicians in our system seem to be also.

Charles Clark,Sr., M.D.

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[artsy mm]

But I think her experience indicates that the more you put into managing your health the better your result will be.

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[Terri]

The average patient this subject is not. The poor are lucky if they get to see any doctor. And, your average poor person lacks the knowledge and skill to challenge a doctor.

I am all for Universal health care, but think any medical system will have it's good and bad doctors, and the rich will always have access to the best.

[Marie Abraham]

Thank you for this insightful commentary on the consumer-driven vs. patient-centered approaches to health care. We do believe that partnerships among patients, their families, and health care providers will lead to better outcomes - for the patient as well as the health care system. I have sent this article on to my colleagues.

I do agree with Ginger B. There is a subset of patients and families who are not trained as researchers who chart progress, symptoms, labs, etc. and follow the medical literature.

[GingerB]

Hummm, some of us graph blood counts. If you have a copy of Excel you're in business.

I don't quite grasp your distinction except that I consider consumer oriented to be more focused on the money aspects of health care.

But I think her experience indicates that the more you put into managing your health the better your result will be.