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.
Jessie Gruman is founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.