When my grandfather was diagnosed with the prostate cancer which would ultimately claim his life, he decided to fight. He’d beat cancer before, and he’d simply do it again. However, he also attempted to keep his wife shielded from the news of his condition as it worsened. The doctors who cared for him were not always clear in their interactions with my grandmother, who though she was sharp as a tack was jaded by her strong faith that my grandfather could pull through. When he did finally lose his battle, it came as a shock to her, although it should not have given his condition for weeks before hand.
As they navigated the healthcare system, my mother, an RN with more than two decades of experience, offered to accompany them to their appointments and translate whatever the doctor’s said into terms they could understand. She now provides the same services to her parents as my grandmother begins dealing with multiple health issues in her advanced age. Even when my nephews were born, my mother was always quick to point out to the doctors/nurses in the room that she was an RN, at times almost as a friendly warning to them to not attempt to use large, confusing medical terminology. She could and would cut through it like a hot knife through butter. But not everyone is lucky enough to have a nurse in their family when they have to use the healthcare system.
Healthcare Literacy is something which has become a bit of a hot button issue among the healthcare community and those who work in it. The industry as a whole has realized that while it is natural for any industry to have a specialized vocabulary and jargon, it can be dangerous in healthcare. If a patient doesn’t understand the orders a doctor or staff member gives, they may die. If prescription orders are not clear, or are given at a time when the patient is under stress or in pain, instructions on how to use the medication safely may be lost, leaving the patient to “guess” how to take the medication. Those guesses can have deadly consequences.
The Association for Talent Development Healthcare blog recently featured two posts by Carol Heiberger, author of the Execuspeak Dictionary, who argues that part of the reason that healthcare literacy is at all time lows is because an educational gulf exists. Doctors, after all, have advanced degrees and have completed 8-12 years of post-secondary education. Most written material for public consumption, on the other hand, is written at a 6th grade reading level. While many simply point to this gulf and say, “That explains it!”, Carol points out in her first post that 90% of Americans have a high school diploma, and within that group 30% have degrees from university. If the educational gulf of post-secondary vs. 6th grade were the only factor, the healthcare literacy issue would be far less important. There is more involved, Heiberger suspects.
In her second post, Heiberger posits that past healthcare literacy pushes have failed simply because they didn’t take into account research into how people learn and acquire new languages. She argues that we need to “smarten up the patients” by providing them with new tools to learn new vocabulary and lexicons within healthcare. The bottom line, according to the author, is that the healthcare industry needs to become the curator of medical language, and provide tools to help patients and their caregivers learn the new terms. Patients and their caregivers also have a responsibility to use the newer, modern tools that are available to them to actively add words their vocabulary.
While I understand her frustration that keeping written materials dumbed down to the 6th grade reading level is ineffective and can in fact contribute to the problem, I believe that there is more going on with medical literacy that simply learning the meanings of new vocabulary words. It’s not just a matter of knowing what a word means; when it comes to healthcare you have to understand the concepts behind the words. You may know, for example, that the word asymptomatic means “…producing or showing no symptoms”, but is that a good thing or a bad thing? If the person is not ill and is simply being seen for a check up, this is normally a good thing. But if a person has a disease or condition which should be manifesting symptoms and isn’t, it may not be a good thing. For example, a person may be having a heart attack but may be asymptomatic…and this is definitely a bad thing.
This is where medical literacy gets complicated quickly. In order to understand the concepts behind a certain diagnosis, prognosis or treatment, generally you need to have a basic grasp of biology and basic medical theory. For example, to understand why a doctor will not normally order antibiotics for a case of the flu, you must understand that the flu is virus. You must also understand that a virus is not technically a living thing until it invades a cell, activates and begins to replicate while destroying the cell. This means that a virus cannot be “killed”…because it really isn’t alive. (There are some in the microbiology community that argue that viruses should have their own category on the “is it alive or dead” spectrum) Antibiotics, on the other hand, are meant to kill bacteria, which are unmistakably living beings. So antibiotics will do nothing against a viral infection. In fact, they may cause more harm than good as frequent over-prescription of antibiotics has been cited as a factor in the development of antibiotic resistant bacteria.
But throwing more vocabulary and more information at people doesn’t solve the literacy problem. In some cases, more information can lead to medical literacy issues. We need look no further than the anti-vaccine crowd to see this in action. Within the anti-vaccine crowd, there is a noticeable segment who are wealthier and more highly educated, as noted in this British Medical Journal study. Examine any anti-vaccine blog, and you will see quote after quote of medical terminology pulled right out of the scientific community, used to justify a person’s belief that vaccines are harmful. In these cases, the medical concepts may well be understood…but the scientific method is not. One classic example is the commonly heard refrain that diseases like autism or seizures are “caused by” vaccines because they appeared around the same time. Event A leads to event B simply because I noticed the symptoms of a problem (B) around the same time I performed the vaccinations (A). However, in the world of science just because something happened (B) at around the same time as something else (A), it doesn’t mean that A caused B…or even that A or B are connected at all. You need far more proof than that before you can conclude that event A caused event B. This fundamental misunderstanding of the scientific method and its role in medicine and human health can lead to disastrous consequences for unvaccinated children who suffer lifelong complications or death from a preventable illness, or for the children who cannot be vaccinated due to age or medical conditions and thus are forced to rely on herd immunity to protect them from serious diseases like pertussis, measles or the like.
Any industry has its jargon. When I first transitioned into the banking/finance industry, I was overwhelmed by loan terminology I was expected to understand, like ARM or P&I vs. P+I, GFE, TILA, RESPA and more. Simply telling me that TILA stood for the Truth in Lending Act is about as clear as mud. What is it and what does it contain? Why should I care? I don’t think it is reasonable to expect patients to learn to converse in the same terms as their physician. True literacy involves having a basic grasp of the concepts being discussed, not just the language that is used to discuss them.
I am glad to see that medical schools are beginning to take this problem seriously, and are working to educate future healthcare providers not only on better bedside manner, but also clearer forms of communication. Educators and patient advocates have a role here as well, working with patients one on one to help break down the complex ideas and medical information into terms that they can understand. I am proud that educators like myself are part of that solution, but it would be wise to remember that we are only a part of it. Literacy of any kind is a complex problem with complex solutions, and as such no one has the single solution to it all.