The following commentary, written by Carol Levine, director of the Families and Health Care Project, was originally published on August 23, 2016, by Aging Today, the bimonthly newsletter of the American Society on Aging.
In the early 20th century, the architect Louis Sullivan designed very tall buildings to meet the needs of a newly urban population. These structures illustrated his assertion that "form follows function." The new forms needed a new name, and “skyscrapers” fit perfectly.
In our times, the rapidly evolving world of healthcare and social services follows a similar pattern. As the forms of organizations and practices change to meet new functions and demands, new terminology follows. Communication among disciplines is essential as the brave new world of healthcare strives for “integration,” “continuum of care” and “care coordination,” all of which mean different things to physicians, nurses, social workers, administrators, budget monitors and others. Added to these are totally new terms such as precision medicine, genomics and biobanking.
Some of the new healthcare language has been borrowed from business and finance; words like “incentivize,” “consumer choice” and “optimizing performance” are typical. Industry consultants market their services in ways that show they know the lingo. For example, an announcement for a “summit” (it's no longer enough to hold a “conference”) promises participants they will “take away actionable techniques to navigate the pitfalls in the LTSS and duals space.” (If that sentence is totally clear, you are probably already fluent in health-policy speak.)
In this language explosion, when even professionals can't agree on what some terms mean, why are patients and family caregivers expected to be “health-literate”? According to the Institute of Medicine, health literacy is “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Washington, D.C.: National Academies Press, 2004, Health Literacy: A Prescription to End Confusion). Basic health information about one's body and illnesses may be easier to learn than information about obtaining services, not to mention the language of insurance coverage, which is nearly impenetrable for novices.
A typical example occurs in homecare discussions. The words are simple enough—nurse, aide, in-home caregiver—but they carry the baggage of years of legislative, regulatory and budgetary history, as well as newer entrepreneurial efforts. A quick translation: Nurses provide “skilled care,” such as wound care and administering injections and infusions. Aides provide assistance with personal care and homemaking and monitoring. Services by nurses and aides may (or may not) be covered by insurance, and eligibility requirements differ. In-home caregivers provide companionship and some homemaking chores and personal care. Their services are arranged through for-profit agencies and paid for privately. How can an older adult and family caregiver make sense of these options without a course in Homecare 101?
There are many reasons for poor health literacy, starting with a lack of basic literacy skills, poor education, poverty, cultural beliefs, mistrust of the healthcare system and others. Individuals should not be blamed or chided for their failure to understand or remember instructions, explanations or unfamiliar terms. Improving health literacy should be a professional collaboration with patients and family caregivers and an ongoing effort.
Jargon generally means language understandable only to insiders in a specialized field. But jargon is not inherently bad. All professions, trades, sports and groups have ways to communicate that create a common vocabulary and a shared understanding of the way things work.
Jargon often is the quickest way to communicate precise observations, conclusions and actions. A surgeon who calls out “No. 10 scalpel, stat” instead of “Give me the scalpel with the rounded blade, not the one with the triangular blade and the sharp point, and I need it immediately” will get the job done faster and more competently. A hospital social worker who calls a nursing home's rehabilitation unit to see if a bed is available will get a faster response by speaking knowledgeably about the specific requirements for placement: the person's insurance status, the reason for needing rehab and whether there are any complicating social or medical factors.
To become partners in care, patients and family caregivers have to learn and use some forms of jargon. They also have to look beyond euphemisms to determine the intent of some phrases. A “goals of care” discussion is probably going to be about options for palliative or hospice care, not about the latest clinical trial of a new cancer drug.
While jargon uses written as well as spoken language, slang is an informal, oral way of establishing membership in a group, often to the exclusion of others. Slang can be creative and become understood outside the group. Insulting slang, however, uses derogatory terms to refer to outsiders—whether they are patients, clients, co-workers, supervisors or customers. In healthcare, older adults are among the most often targeted, with words and acronyms like geezer and “GOMER” (grand old man of the emergency room). Any language that is cruel or disrespectful is unacceptable.
While some terms clearly are demeaning, others have fallen out of favor because of the perception that they are disrespectful, although it is not clear the alternatives are much better. People are no longer described as “noncompliant” when they fail to take their medications; instead, they are “nonadherent.”
Proponents of the change say that “noncompliant” suggests willful disregard of a doctor's instructions, while “nonadherent” suggests that the patient has goals that don't align with the clinician's. Most people probably don't understand this nuance. Perhaps to acknowledge that both terms are commonly used, the National Stroke Association suggests two different behaviors are at stake: “Adherence is the act of filling new prescriptions or refilling prescriptions on time,” while “compliance is the act of taking medications on schedule or as prescribed." Is this distinction in common use? Probably not. Do “adherent” patients take their medications more reliably than “compliant” ones? Perhaps the important issue of medication management needs to incorporate patients' goals, understanding and barriers. Changing the terminology alone probably will not suffice.
Communication between professionals and lay people is not just a question of “engaging” or “activating” patients and family caregivers, whatever these terms mean, but of finding out what they already know, what they need to know and explaining everything in language they can understand and remember. Teach-back (http://goo.gl/msQ7dT) is a practical method of ensuring that professionals have successfully communicated important information; patients are asked to say, in their own words, what they learned, not just to repeat the clinician's words.
There's no easy way to ensure that communication results in understanding. But at a minimum, professionals can explain all the terms they use, acknowledge that there are special meanings attached to some of them and treat all questions as valid. The language of healthcare and social services affects people's lives and well-being; it should not be a mystery.