The C Word

That we are experiencing a “consumer revolution” in healthcare is a durable meme in the media and in policy circles just now.  When you hear the word “consumer”, it conjures images of someone with a cart and a credit card happily weaving their way through Best Buy. It is, however, a less than useful way of thinking about the patient’s experience in the health system.

A persistent critique of our country’s high cost health system is that because patients are insulated from the cost of care by health insurance, they freely “consume” it without regard to its value, and are absolved of the need to manage their own health.  In effect, this view ascribes our very high health costs to moral failure on the part of patients.

Market-oriented policy advocates believe that if we “empower”patients as consumers by asking them to pay more of the bill, market forces will help us tame the ever rising cost of care. If patients have “skin in the game” when they use the health system and also “transparency” of health providers’ prices and performance, patients can deploy their own dollars more sensibly.

This concept played a major role in the otherwise “progressive” Affordable Care Act. The 13 million people who signed up for coverage this year through the Affordable Care Act’s Health Exchanges opted overwhelmingly for subsidized policies with very high deductibles and out-of-pocket cost limits. The “skin in the game” argument has also heavily influenced corporate health benefits decisions. More than 30 million workers and their families receive high deductible plans through employers.

Being a ‘consumer’ implies the discretionary exercise of purchasing power. This might conceivably make sense for having a baby, or total joint replacement, or cataract surgery, where there are multiple options and a long lead time to choose who to work with. It makes no sense at all for conditions like a stroke, or a cardiac episode, or trauma, where common sense dictates rapid entry into the closest competent care system. There is nothing remotely elective in how a patient or their family responds to these latter problems, and thus, no space for “consumer behavior”.

Being a “consumer” was not remotely descriptive of my recent experience with cancer. Around Christmas time in 2014, I was diagnosed with squamous cell carcinoma of the head and neck. As diagnostic uncertainty narrowed, it was clear that surgery was the remedy of choice for my condition. I ended up choosing my alma mater, the University of Chicago, which had a superb head and neck cancer team, part of a National Cancer Institute-designated Comprehensive Cancer Center. The decision I made was based on trust both in my surgeon and his supporting cast, and on the quality of the rest of Chicago’s head and neck team if surgery was not the definitive end point of care. They did a great job of ridding me of cancer without radiation or chemotherapy.

In deciding what to do about my cancer, there was no rational way for me to evaluate the price/quality dimensions of my alternatives. I knew where to look, and looked –  at Leapfrog, Medicare.gov, Dartmouth Atlas, Yelp, Angie’s List, hospital websites, etc. These sources contained neither price nor outcomes information specific to my condition.  I ended up making my decision based on trust, and on the quality of the multidisciplinary team, not on price or value.

Would I have chosen a cancer program I didn’t know as well because the care was 25% cheaper, or cost me $2000 less out of pocket or even if they had a 5% better cure rate? The short answer is: no. Trust was the issue, not dollars or even “value”. I was not insulated from financial risks either.   Because my Medicare Advantage plan carried an almost $6000 annual out of pocket limit, I had lots of “skin in the game”.

As an anxious patient, I wasn’t trying as a “rational economic actor” to maximize the value of my health benefit. I was trying to survive a potentially fatal illness. My goal was to regain control of my life and resume working. I struggled as best I could to define my clinical risks, and to find clinicians and institutions I trusted to intervene on my behalf to restore me to health.

I experienced the same problem in the fall of 2015 when I needed my left hip replaced, one of those elective surgical procedures that health policy experts commonly cite as having become “commodified”. The same sources I mentioned above were of no use whatever in my making the final decision about where to seek care. After actively seeking “consumer” information, including the newly available ProPublica surgical ratings,  again I made the decision based on trust, and had an exceptional outcome.  Moreover, none of the surgeons I interviewed could tell me what the procedure would cost all in, or even their own revision or complication rates, two things an orthopedic surgeon told me he would try to find out if they were going under the knife.

These difficulties- no time or ability to exercise meaningful choice or lack of useable data upon which to make one- are not the only problems. The biggest problem with the concept is that it is demeaning to patients. It is an economists’ caricature of patients as feckless devourers of a scarce social good which they have no motivation to conserve. In fact, most patients are frightened and in pain, and seeking someone they trust to alleviate both the pain and the fear that accompanies it.

I would love to have had better condition-specific information on the cost and quality of the care choices I face. Bring it on. But ultimately, what we must rely on the professionalism of those who take care of use to protect us in these scary circumstances, something I experienced first hand and on multiple occasions during the past difficult year. It is time to replace this insulting cartoon vision of the patient as a “consumer” with something that more accurately reflects our actual situation.

Originally published on The Health Care Blog.