My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: “What works for me when I’m scared and what doesn’t?” You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed in the ER. In 5+ years of advocacy I’ve been unable to generate interest from IT wonks. Anyway, I was whining about my ineffectiveness to Phyllis.
So let’s break it down a bit more. I’ve never met anyone in an unexpected health situation who wasn’t scared. Scared looks like: startled, numb, stomach ache, sweating, heart racing, catastrophizing , panicked……
It’s good to know in advance what helps settles me down. Deep breaths, meditation, hold my hand, a good laugh, quiet, a walk, listening to John Lennon, my wife and family, more information, respect from those around me plus listening to me, Ativan. My mom needed a hand to hold, control, opera. My friend needs someone from his immediate family and information, reduced stimulus, quiet, to be kept warm, headphones with classical musical. We all can use something. The unexpected health care situation can vary. My chronic condition, MS, could flare up – known yet unexpected. You could break your leg – an accident plus pain. You could have a heart attack or kidney stones – sudden, debilitating, with pain. You could be alone or with someone you trust – very different scenarios.
We’ve been thinking like the game show, Jeopardy – we’ve been thinking of answers. For the electronic health record to contain an answer that is useful, it needs to be a list that can be checked off or it needs to be a text field where a custom answer can be written.
So, again what are the right questions?
- Who should we call for you when you’re scared? That’s different than next of kin (could be several people rather than just one person).
- Do you know of any medicine that calms you? What medicines make you more anxious?
- Is there music that helps reduce your feelings of fear?
- Information, listening, respect, control and keeping warm don’t need to be on a list. They need to be done. Every time.
What am I missing here? Any other questions that could be asked. Let me know.
Now I see why Phyllis said that I was asking the wrong question. It’s pretty complicated, Even if I answer the questions in a magical health record, who’s going to read it, will it transfer from one record to another? And you need a relationship with someone who will put it in the record or you need to be able to enter it yourself.