Imagine your spouse, parent, or best friend gets a left ventricular assist device (LVAD). This is a mechanical device put into their chest. A wire sticks out of their body and connects to a bunch of different electronic pieces you’ve never seen before. You’re in charge of making sure this wire stays clean. If it doesn’t, it could mean infection and possible death. So, you know. It’s kind of a big responsibility.
Of course, you’re going to pay attention when the VAD coordinator tells you how to clean the wire. Maybe she’ll make it look easy. She’ll show you the anchor you’ll need to make sure the wire doesn’t move, and oh yeah, when you clean it you can’t have anyone around — including Banjo, your loving beagle who can’t stand being apart from you and will bark nonstop as you try to do this at home by yourself. You’ll have to wear a mask and gloves, and your loved one will have to wear a mask, and everything will have to be absolutely clean or you’re going to infect this person and maybe kill them. No pressure.
You might pay an obscene amount of attention every time she shows you how to do it. But maybe the enormity of this responsibility blocks you from really remembering every step of how to do this. This is a different kind of hurdle that a lot of clinicians forget about: the emotional health literacy block.
Emotional health literacy refers to the emotional state someone is in when they receive health information, and how those feelings allow people to take information in (or not). It’s just as important when capturing information for someone’s emotional state to be calm or neutral so they can understand and act on any instructions. For example, the second someone learns they have cancer, that’s it. That’s all they hear — a loud buzzing, swirling in their head with the word cancer in neon in front of their eyes. “I’m going to die” is all they think. They hear nothing you’re saying.
We might remember this when speaking to patients, but the bigger challenge is remembering it for caregivers. Just because they’re not the one with the illness doesn’t mean they’re not overwhelmed and don’t feel the same fear, frustration, or panic. In fact, they may feel it more because they’re also immediately thinking about other issues like: figuring out how to make the person comfortable, how to tell family, where to get the money for treatment, whether they will quit their job to care for this person, etc. This emotional landscape can block hearing instructions, options, and information. So how do you get around it?
The first step is to know about it. When you acknowledge the caregiver might be just as overwhelmed and blocked as the patient, it allows for a simpler conversation and lets them take a breath and focus. Second, it’s important to meet them at their level, when they’re ready. Maybe that means giving some paper information or online videos or programs with information that they can digest later when they’re ready. Maybe that means setting up a follow-up appointment when they’re ready to talk. Maybe that just means leaving them alone for five minutes to process the diagnosis, then coming back to talk. Maybe it’s all three.
Communication, time, and recognizing they have a lot to process are the key to this conversation. Let the caregiver know it’s okay to feel the way they’re feeling — that it’s common to be overwhelmed. Ask them to consider what’s best for them, too. After all, their well-being is often crucial to helping the patient do well. There will be many times where the caregiver will have to step in and help the patient, even if it’s something as common as a broken leg. As a clinician, you want these caregivers to be clear-headed and ready to receive information, just like your patients. It will make your job and the patient’s recovery easier to have a caregiver who’s focused and present in the conversations about caring tips and instructions. So make sure they’re with you all the way.
Diana Dilger is a senior writer, Emmi Solutions.