When the handouts from the hospital downplay, gloss over or don’t even mention the potential for bad things to happen, a patient can be excused for feeling totally blindsided to find out a complication is serious enough to require surgery.
How do I know? Because it happened to me. And to say I felt misled by the vague, sugar-coated generalities contained in the patient literature is an understatement.
The focus on health literacy is both welcome and necessary. Far too much about health care is arcane, difficult to understand and not explained well to patients, especially those who have difficulty reading or for whom English is not their primary language. But there’s another side to this issue: the risk that in the drive to simplify health information for patients, we’re going too far.
I’m not the first person to ask this question. I’ve heard the same concern from health care professionals who worry that the basic facts, while important to convey, aren’t always enough to truly arm patients with what they need to know.
Dumbing it down has consequences. At best, it can confuse patients about what their symptoms or side effects might mean and what, if anything, they should do about it. At worst, it can put them in harm’s way.
More than this, it has the overall effect of lowering the bar for what’s expected of the patient. “Don’t dumb down diabetes!” declares blogger Allison Blass at Lemonade Life. She describes a recent focus group meeting during which she shared the data methods she uses to help manage her insulin for her type 1 diabetes, only to be told, “You seem very tech-savvy but what about the average diabetic?” Her response:
Understanding diabetes is a daily battle. This disease doesn’t make a bit of sense most of the time and I will be the first person to admit that I don’t always do what I am supposed to do. But I don’t understand how providing someone with less information about their health is supposed to help them? And I don’t understand why it is such an extraordinary thing to encourage people to read, ask questions, be educated and know all they can about their disease.
One aspect of this is the rather patronizing don’t-you-worry tone that often pervades the handouts and written information for patients. This faux reassurance, with its dumbing down of patients’ emotions, can be very misleading. It can give patients the impression that their symptoms are no big deal, and it can leave them unaware or unsure of when something is serious enough to need medical attention. It also puts patients at a serious disadvantage in communicating with the doctor and ensuring that a complication or side effect is being appropriately addressed. Rare complications are, by definition, rare, but they do happen, and patients are ill served by information that condescends to them rather than enables them to recognize when to take action.
In the bigger picture, dumbing it down can blur or erase many of the nuances that need to be part of the public discussion. A prime example: the attitude that screening for disease has preventive value and is invariably beneficial. On some level, and in some circumstances, this is entirely true. But screening and prevention are not the same thing. Moreover, screening has limitations; it’s not 100 percent accurate, it doesn’t necessarily change the course or outcome of a disease, and sometimes it results in patients undergoing unnecessary treatment.
Understanding this could help Americans have more realistic beliefs about what screening can – and can’t – accomplish, and might help them make health care decisions that are more informed. This level of understanding won’t happen, however, if the discussion stays mired in generalities sheerly for the sake of keeping it simple.
To be fair, most health care professionals, at least the ones with whom I’m acquainted, prefer it when patients participate in their care and make an effort to be educated. But many of them also struggle with where to draw the line. If you tell patients too much, will they be overwhelmed? Will information about potential complications or side effects scare patients away from necessary treatment? Or will people just tune it out?
Not everyone wants, or is able, to handle the same amount of information. It’s a genuine challenge – maybe even impossible – for health care professionals to find out and keep track of each patient’s preference for knowledge.
This shouldn’t have to mean, however, that we automatically default to the lowest common denominator. Keeping it simple isn’t always the right answer, nor is it always in the patient’s best interests. It’s a lesson some of us have learned the hard way.
Photo: Wikimedia Commons