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Bad Language: Words One Patient Won't Use (and Hopes You Won't Either)
Jessie Gruman | August 3, 2011
"There is a better way - structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace." Sen. Paul Ryan (R-WI) August 3, 2011
The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services. But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service. Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”
As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.
“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them. When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf. Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent.
This word is often deployed as an egalitarian euphemism that cleverly disguises cost- and responsibility-shifting from professionals and institutions onto us, for whom fulfilling those responsibilities can be a heavy burden. For example, because the American health care system lacks a functioning electronic medical record system, we have become “empowered” by HIPAA to carry our own health records and tests results from doctor to doctor when we are ill. Similarly, we are “empowered” to be cost conscious and shop for less-expensive providers and services when we are laboring under the weight of our $5,000 deductible. We are “empowered” by the note on the name badge to ask every employee who walks into our hospital rooms whether he or she has washed his or her hands.
Used to describe patients, this word does not connote new power – rather, it signifies new responsibilities. I may not like these new responsibilities and I may struggle to fulfill them, but I would rather know that I must do so if I am going to benefit from my care than to be lead to believe these new responsibilities are a choice or a gift that I have an option to claim.
How about if you call me an active patient, or an informed or engaged or knowledgeable one?
“Health Care Consumer” In focus group after focus group, we have said we don’t want to be called health care “consumers.” There is a long tradition of explaining why health care is not a market commodity. In their 2008 article “The Patient Life: Can Consumers Direct Health Care?,” Carl Schneider and Mark Hall provide a data-filled analysis of how current conditions in American health care simply do not support the standard characteristics of consumerism. For example, good choices – indeed any choices of health plan or primary care clinician -- do not exist for many of us. Comparative cost and quality information is not available on almost any of our relevant choices. And many doctors resist discussing issues of quality and cost with us: They often have limited knowledge about the wild variation in health care pricing and little meaningful information about the quality of the care they, their own clinic or their hospital delivers.
Calling us “consumers” perpetuates the notion that by the mere act of giving us some information – however spotty – we will be transformed into making objective, informed judgments about our care when it is simply impossible to do so right now. It allows those who use this term to convince themselves that because this is a role we easily fill when purchasing lettuce and flat-screen TVs, finding the right health care should be no different. And it fuels the underlying belief that we will naturally seek out high-value care and thus influence the health care marketplace … and in doing so exert demand that solves the problems of cost and quality that have long proved resistant to the efforts of powerful actors like the government, private payers and health professional groups.
How about dropping the commercial language and calling us oh, say, “people” or “employees?” Or if some descriptor is needed, how about taking a clue from the Whole Person effort of the 80’s, which brought us “people with AIDs” instead of AIDS victims. “People with Medicaid” or “people without insurance” would work.
The words “empowered patient” and “health care consumer” are currently being used as subterfuge to mask an agenda that shifts risk, costs and responsibilities to patients and families. Their use diminishes our individuality, our autonomy and our dignity. And the underlying assumption those words share is that performing the often complex, unfamiliar tasks of finding and benefitting from our health care is a matter of having enough will and sturdy bootstraps – and that it is our own fault if we don’t succeed.
Don’t get me wrong here: I am pleased with the growing recognition that we have a vital role to play in improving the effectiveness of our health care. Some new resources are now available to help us act on our own behalf to find safe, high quality care and make the most of it. And I support the well-intentioned efforts of those working to ensure that care will become more responsive to our needs over time.
The glib use of these words and phrases by those in powerful positions in health care signals underlying attitudes and beliefs about us that are inconsistent with what is known about the difficulty of changing health-related behavior and a true disregard for the complexity and magnitude of the challenges we face in finding good care and making the most of it. These are not simple tasks, and the help we need to do them is neither simple nor cheap. Throwing a few bits of information and big hunks of risk in our direction and describing us in with shiny new words will not do the trick.
More Blog Posts by Jessie Gruman
Jessie C. Gruman, PhD is president and founder of the Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — inform her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book AfterShock helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter @JessieGruman. | More about Jessie Gruman
Comments on this post
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August 4, 2011 at 2:08 PM
Good food for thought. I hadn't thought about the use of these words in this fashion before. However, what's lacking in this opinion piece is the "what do we do about it?" action. Yes, it's hard to get answers from providers sometimes, but it should not stop us from putting pressure on them and the industry for change. If we continuously demand to know how much treatments cost or generic options for our drugs, than there will be a shift. http://whatstherealcost.org/video.php?post=five-questions
August 4, 2011 at 5:46 PM
I totally agree. Another thing that really bugs me is how people talk about cutting the Medicaid "program." It's not a program, it's people. It's cutting prescriptions for kids, cutting care for the disabled, not cutting some nebulous budget line.y
|Andrew Robinson says|
August 5, 2011 at 10:14 AM
Jesse â?? Bravo! There is nothing worse than having all of oneâ??s struggles as a patient â?? dealing with illness, pain, family, fear, life and death decisions, reduced to the ridiculous moniker: â??Consumer.â?? It is a cheap and heartless way of avoiding the humanity of patients and what they face and instead trying to view us as some another class of retail shoppers. It is appalling. I thank you for this article and applaud your effort.
August 5, 2011 at 12:51 PM
very good, I prefer action-oriented terms like engaged as one can be informed but still passive/detached ( many healthcare providers/policy-makers still believe, against the evidence, that those who simply know better will do better), and "people' is a welcome reminder but here in the USA we may be better served by citizen as human-rights without representation are hollow.
for those interested in such matters see:
Annemarie Mol:The Logic of Care: Health and the problem of patient choice
|What Should People Receiving Health Care Be Called? Empowered Patient Vs. Health Care Consumer « health care commentaries from around the world says|
August 5, 2011 at 10:29 PM
[...] *This blog post was originally published at Prepared Patient Forum: What It Takes Blog* [...]
|Whittling Costs in White Coats « FutureDocs says|
August 10, 2011 at 9:31 AM
[...] immediately come to mind most is of a patient coming in to request a test that is not indicated, engaged and informed patients expressed the desire to work together and that less is more.Â Â In some communities, there is a [...]
|Bad Language: Words One Patient Won’t Use (And Hopes You Won’t Either) | Care And Cost says|
August 11, 2011 at 1:07 AM
[...] posted 8/03/11 on Prepared Patient [...]
August 23, 2011 at 1:27 AM
I think your post is excellent.
However, I also understand why these terms are used--they are fairly easily understood by the average person.
I have met lots of people/patients who feel powerless, whether it be related to decision-making, cost, or some other aspect of health care. To provide them something that "empowers" them implies that they may gain some additional control, which is usually seen as a positive. Yes, there are lots of unwanted new responsibilities, but that is not due to the terminology being used. When I use the term I am usually referring to self-empowerment, which I think most people would support.
"Health care consumerism" is language that I struggled with for quite some time, but I have become more comfortable with it, due to lack of better terminology to describe the accountability of cost when making medical decisions. The first words uttered by the first patient I saw each of the past two days were requests to change care due to cost. I am not here to argue whether it is good or bad, but today cost is a factor in medical decisions.
I agree that these terms are misused, and often oversimplify a complex situation, but I haven't yet seen adequate alternatives.
Stephen Meyers, MD
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