While I was out hiking today, I got to thinking – thinking about one of the challenges I face with complex medical conditions. One of the problems I run into is that I get so used to things as being ‘normal’ that I forget to include them in my medical history. For example, I have celiac disease. I’ve been gluten free for over a year (yay). I’ve gotten used to the idea of being gluten free. It has become normal for me. So when I’m at a specialist, I don’t necessarily mention it. When I was at the ophthalmologist, I didn’t think to mention it. I have sleep apnea (well really hypopnea – a side effect of my cancer surgery), and I forget to mention it. I forget to mention that I’ve had lymph nodes out on both arms such that I cannot get IVs in both arms. I forget until it becomes very relevant (like when an anesthesiologist is wants to put an IV in my arm).
Throughout my cancer experience, I have learned that I need to be my own advocate. One thing I like to say is that I’m my continuity of care. I am the one variable that does not change regardless of which doctor I’m seeing. Doctors are busy. They see a lot of patients, with a lot of different issues, and yet we expect them to both be experts in the disease they are treating, but also understand our full and complete medical histories. And yet, there isn’t time for that in a typical interaction. Specialists in particular have tunnel vision. That is what makes them specialists – they get one thing very well, but they do not necessarily get complexity. I actually talk a little bit about this in an article I wrote for In-Training – where the resident wasn’t willing to admit she didn’t know about breast cancer – I was at a sleep clinic, I didn’t expect her to know, but I did expect her to admit she didn’t know, so that I could give her details that might actually be relevant to why I was at the sleep clinic.
Medical students and residents learn to take patient histories. They learn to go through a script asking all the questions they believe are relevant. As I patient with complex medical issues, I often find that is exactly the situation where I forget something – which might not matter, but might also be rather significant. It is with that, that it occurred to me that as a patient I should spend some time creating a patient generated 5-minute medical history – maybe a two page written document that summarizes my issues. That isn’t a lot of space – but it doesn’t need to be. It needs to say the most important parts about diseases, current medications, and any major past medical treatments.
This could go a long way to ensure that I don’t forget something important. It doesn’t replace the patient history / interview that the doctor does – it just provides a more wholistic view of my health – something that a specialist may not see. My pediatrist may not see or care that I have sleep apnea, but it becomes relevant when we start planning a procedure that involves twilight sedation (for any sedation, because of sleep apnea an anesthesiologist is required to be present). My sleep issue is not necessarily relevant to my toe pain, nor something that the pediatrist would think to ask about, but it becomes relevant when the doctor is recommending a treatment plan.
And with that, I now have a task on my to do list to create a 5-minute medical history for myself. What type of information do you think it is important, as a patient, to include in a patient generated 5-minute medical history?