As I become further entrenched in my studies, I am becoming hyper-aware of some of the gaping flaws in our healthcare system.
I’m not talking about insurance, so keep your pants on. I’m not talking about the huge systemic issues with inter-provider communication. I’m not even talking about technological issues. I’m talking about provider-to-patient communication and, more specifically, education.
One of the passages in my patho book discusses a test that is performed on infants within 24-48 hours of being born, in all developed countries. In fact, I remember the nurses taking a blood sample from William’s heel the morning after he was born. And while I’m sure I was informed it was to test for hypothyroidism, it was never really explained what that could implicate.
I always want to know what is being done when something is injected or removed from my son. But, considering I had given birth eight hours previously and hadn’t slept, I probably didn’t ask. Or even think to ask.
This sort of concerns me, in a way. On my part, I should have been asking what he was being tested for and what it meant when the results came in, either negative or positive. I also believe the nurse should have explained what it would mean if that test came back positive or negative.
Now, I’m sure there are many legitimate reasons a nurse may not explain every single test to a patient or parent of a patient. Of course this test is performed routinely on every single infant, that could be one reason. The nurse could have just explained the same thing to countless other patients, and she might just have forgotten or lacked the motivation to explain in-depth what being positive for hypothyroidism could mean. Or, she could not have wanted to burden a brand-new parent with yet another concern.
But I don’t think that’s right. I think there is another way to do it. I think that, no matter what the education level of a parent is, the parent is entitled to the right to know what is being done to their child. Whether or not they ask, or know to ask.
Personally, I am from a family that is taught to ask what is going on in terms of their own medical care. We are a family of healthcare providers. We know the questions to ask, the terminology to use, and when to push for more information. In my circumstance, I was exhausted and overwhelmed. But in another example, like when I had my gall bladder removed, I was full of questions for all of my providers. I believe it served me well.
But what about those patients who don’t know what to ask? Or how to ask it? What about the families that don’t know any medical terminology, or even worse, don’t believe they have the right to ask or question a medical provider? There are plenty of these families. Those are the families that I hold the most concern for.
I know a nurse can’t give an hour-long lecture to every single family about what would happen if their child had hypothyroidism. First of all, the chances of that happening aren’t that high, and second of all, is it the nurse’s job to voluntarily explain everything?
I believe that answer is yes. But I also think there is a time and place for this explanation. I believe parents and patients have a right to be educated. I don’t think education consists of handing out a pamphlet. I believe education begins with information from the provider. Perhaps the nurse or doctor explains what tests will be given to a newborn. The practitioner should give as much information as possible, and then when the patient has more questions (Either immediately or maybe even a week or two after), the patient should take up the responsibility to ask the questions. Even if they sound silly. Like, “What does hypo mean?” or “What is your thyroid?”
I think it’s a two-way relationship, but I genuinely think it begins with proper education from the provider’s side. Taking ten minutes to explain that every infant is tested for x,y, and z… and here is what that means. Because once a certain amount of information is given to a previously uneducated patient, then the questions may begin to form. That is how learning takes place.
That is also how communication works. Giving information, questioning the information, then further discussion. I think that every patient deserves this, and I think it is worth examining in this age of assembly-line medicine. How can we change for the positive? How can providers do their job with their priority of treating the patient, while also not leaving them in the dark about their own medical care? How can we avoid patients Googling diagnoses?