I have to

I have mentioned that once in a while that I look back at my Caringbridge site which is still up. I am sure some day the slow head shaking and teary eyes I get as I read those post will wear off. Maybe it won’t. I can’t really even begin to wonder if I will ever look back at those post and not be instantly draw back to the fear and anxiety of that day. I often don’t know what draws me to read the posts maybe I use them so I know I am doing better, sometimes it is to remind myself of just what was going on, but on days like today I even use it to draw myself back into that full fledged role of patient. Obviously, I am still a patient and I am unsure I was ever not a patient but many of my experiences today remind me that as a good physician I need to feel the mud of disease around my toes. What I mean is describing that sensation is doable but hard. Truthfully it is just not the same as the actual experience. I am glad I wrote so much then as my description of the days is so personal to me. I think for many people who read it was quite personal as well. I would not want them to have to relive that wondering how I was. Yet, as I get more into the physician role again I wish I could encourage people who are joining my thought process would gander back at that site and have an idea of where I am coming from.

When I mention my experiences of the day I should elaborate. I had a day full of education. For myself and hopefully for others. After getting my boys rolling (actually it was Brooke riding them off to school) I went to my weekly attempt at being a medical school instructor. I help with the 1st year Intro to Clinical Medicine class (ICM). This early in the year the topics are pretty easy and focused on getting the basics of a history, interacting with patients, and just getting students to realize this profession is a lot different than they ever imagined. This idea of learning the patients story looms so large at this point in their education. We talk about listening and we encourage them to take time with the patients which they may not get as interns, residents and attendings in the future. It is a little sad that we (really me and my realism) often find ourselves reminding them though that time will eventually be a factor and they should keep this in mind. I wish that wasn’t the case but if you take a bunch of altruistic people and ask them to listen to a life story it will be hard to get them to interrupt politely and so teaching this skill becomes quite important. For me as a physician I know I have to drill down to the juicy facts quickly or else I will be mired in and information overload. But this is when I remind myself of the feeling of the disease state and I remember how what loomed as large, frightening, did not create the same shadows for the doctor. Trying to convey this to newbie medical students is hard.

This afternoon I got to participate in a Med X google hangout. Beyond feeling woefully inept at computer technology I find these discussions riveting because of my reserved seat on each teams bleachers. I often feel I am stuck in a which way should I answer or how could I respond as a patient versus a physician. I am glad the other participants are far smarter than I and can cope with my often rambling thoughts. None the less it is as I am (hopefully) further away from my disease state that I feel I might be losing my patient viewpoint. Going back to look at my CaringBridge helps me remember my real role which is to be the voice in the middle. This particular discussion was about patient engagement and what I thought that meant. In a perfect world I would say it meant an patient truly interested in their own health and wanting direction in how to improve or fix an existing problem in conjunction with a physician who has the time and ability to communicate and work with a patient towards that common goal.

In the real world though I find that answer much tougher to actually verbalize or even conceptualize. The reason being, as I eluded to a few days ago, is that it is seemingly a special patient and an open minded physician who can make this happen and we don’t see that combo very often. Those active patients get lost in the fray of “fix me” crowd and physicians get tunnel vision towards outcomes. So I eventually phrased my answer as patient engagement is a two way street where a patient reminds a physician of their role as knowledge source and a physician who puts forth the challenge to promote a patients wish to be more knowledgeable about their situation. When the two meet true patient engagement will ensue. When I look at it this way both parties must step forward or be open to the opportunity which exist. Again I think this is somewhat idealistic but I can hope in the future health care will find a new level of cooperation.

I guess I could have phrased it in a way I often do with patients.  I use an analogy which comes from my brother-in-law Ian’s line of work. On all the big ships in Alaska there is a captain (the patient)  they are in charge and have the final decision but in all the tricky spots and harbors there is a pilot (the physician) to give direction on what would be a safe and prudent course. I often simply tell patients “you are the captian of your own ship, I am just the pilot and this is what I think is a good course, but you know your ship and what it can do, so lets work together.”

Enough rambling about my thoughts of the day though. The last reason I look back at my Caringbridge is so I know what my support team was doing for me. A year ago actually yesterday, Luke and Emily my brother and sis-in-law, passed through Seattle on their way back to Colorado then on to Hawaii. They had spent almost 3 weeks helping look after our kids in Alaska. I talked about how it was crappy that such a situation brought us closer and gave my boys such great time with the two of them. I talked about how I hoped I would be able to get out to see them. I am sad that I have not been able to see them in a year. I am glad Brooke and Finn have seen them and that both boys and Brooke will be seeing them again in a month or so. I wish I could to but my role as patient (can’t be in the sun, can’t surf, not great to fly, making Hawaii difficult to say the lease) stands in the way. I know they understand but I bet they don’t really know how much I miss them. The same goes for all those supporters in Steamboat. I will get there someday again. I have too.

Head Up, Heart Strong. I need a cure.

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