Need to Know

“Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.

And that is that. An exchange that happens innumerable times – especially during hospital admissions – short dialogues of medical conversations time and time again so that lingo like PRN and NPO and subcutaneous are all sincerely basic and fully understood words (yes, even the full acronyms). But it’s during interactions like these that I wonder if medicine is on a ‘need to know’ basis.

The situation had I not been medically literate: I needed a new gripper (needle that goes into my port for IV access) so the nurses come in and ask me what size gauge my current gripper is. Of course this is in a chart somewhere, scrawled in someone’s writing, autographed and dated, but instead as a first-line my nurses ask me. So let’s pretend I didn’t know the answer and had shrugged my shoulders; they would’ve figured it out and I would’ve gotten a new gripper. I would not have the dressing that I wanted and would not know anything, but that’s okay.

Or not?

The analogy, even if it’s cheap and not full serving, is like going to a real estate office and trying to buy a house without knowing the difference between home inspections or mortgages. How can you buy a house if you don’t know what you’re talking about? The obvious answer is that you need to be educated, little by little, so that you’re able to talk shop without looking like an ordinary Joe.

The question that begs to be asked (and a question that in truth probably has a million answers): should medicine be on a ‘need to know’ basis? Should you know there’s a dragon hiding in the den, or would you prefer to be led into the dark cave, hearing noises but seeing nothing? Would you rather know? Or be surprised?

And better yet, is it okay to be surprised or not know when it comes to medicine and your body? Is saying, “you may experience some discomfort” different than “you’re going to be in so much pain way too soon?” Is it okay to say, after the fact – after the scar or the bruise or the memory – I just didn’t know what was happening? And who does that bring the sharp guillotine to the throat of – the patient, the family, or the doctor?

My answer for as long as it’ll reach – medicine shouldn’t, for the most part, be on a ‘need to know’ basis. You should know, you should be educated, you should be as sure as you can. But then there’s another layer of medicine, an experimental component that is both ‘need to know’ and ‘think before asking.’ For example, I like for nurses to tell me before they put a needle in, that’s a personal preference, but knowing whether or not something is going to hurt or if you’re going to be unable to do things, that should be basic medical information. The experimental part is difficult, because not everyone wants to know everything (and not everyone will want to know everything), but you cannot decide for anyone else what they may want. And especially for parents/doctors of young patients, as a patient my vote stands that being told (however a variant of the fullest truth) is always better than feeling tricked or lied to.

And it goes the other way – it always does – because doctors and nurses and medical care teams should have a ‘need to heal’ checklist that takes into account patient and family preferences. You can’t help if you don’t know, you can’t heal if you don’t know. Being in it together means being mutually educated, informed, and respectful.

You have a lot of choices to make in your life – what shoes to wear, where to go to school, which dessert to order, and how to make medical decisions. And if you have a question, ask it, because you need to know. If you ever feel like your medical care is on a ‘need to know’ basis, make sure you’re told what you need to know so you can know it instead of just needing to know it

It’s about time we knew what was going on.

Jennie

One thought on “Need to Know

  1. Interesting you pick buying a house as metaphor. I’m an architect and I’m trained in visual communication together with the ethics that the client must always make the final decision and my responsibility is to provide enough information to make an informed decision. There are small things we might not get into and my clients need to trust me that this is why they are buying my services – to make decisions about the design and technical details – otherwise they could do it themselves. Clients vary in what they want to know but I am trained to take this into account. I always give them more than they think they want and more often than not this triggers interest and empowerment, and a trusting relationship.

    I was diagnosed with CD early this year and what struck me was the lack of information. Where was the diagram showing the GI tract? Or the poo chart? Or the cross section of the GI tract showing mucosa? Or the sheet with flow chart showing when you should head to the emergency department because your new fancy pants drugs are giving you hepatitis? Etc. the whole approach to clinical practice seems to omit the intelligence and capability of client patients to make informed decisions about treatment.

    I’m lucky. I have the skills to give myself a crash course in gastroenterology and immunology (and I can now read a CPB, CRP and E/LFT report) and my aim is to be the patient from hell. But I do wonder about the difference in progress between active and passive medicine consumers. Yes it takes time to train the patient up initially but it cuts down on long patronising conversations later.

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