Category Archives: kid’s medicine

We Need a Champion We Can Trust

Some days I am amazed at all of the help we have gotten with A through the years.
Some days I am amazed at all of the help we have gotten with A through the years.

In the past two weeks, I have sat through a class on building trust with an organization and a round table discussion between the president of the American Board of Internal Medicine and a broad cross section of patient, consumer and purchaser organizations . At first, I did not link the two topics in my head until somebody at the round table described what patients want from their doctors as “someone who will champion me and my needs.”

When I heard this, I thought it summed up why I thought so highly of my favorite doctors. Of course, I want them to know all of the latest best practices, but as a patient I have little means to ascertain whether I am getting good or bad service in terms of medical quality. What I really need is somebody whom I can trust to do the multitude of little things to make me buy in to a plan of action to improve my health. Nothing builds trust faster with me than knowing the doctor will see my needs met, even when I know I am imposing a huge burden, sometimes bigger than I feel comfortable requesting.

When I think of doctors for whom I have the highest regard, I think of our children’s primary care doctor. Early in our fostering, my wife took our oldest to see her. Not only did she read through the medical history (2 big, full binders), she asked probing questions, followed up with requests for medications, gave needed referrals, and finally she filled out a huge application with a long letter detailing A’s medical history in an effort to get A into REM. REM is a program for rare and expensive case management. That A was ultimately denied did not matter. Her effort identified her as a champion, as somebody who had our kid’s interest in mind. As she has run for public office in recent years, it’s with a heavy heart we always vote for her. We vote for her because she is a champion, but we cringe at the thought of losing her energy and time as a doctor. She is one of the people I think of when I think of a quote from Andrew Bridge in Hope’s Boy,

“Some people are born for battles. Their bravery endures, regardless of frailty or strength. They are the ones we look to and our admiring hearts tell us, ‘They’ll know what to do.’ They are the great winners and losers of history. We remember them less for their outcomes than for their glorious acts. And, with the gentle wash of time, they become our heroes.”

When I think about my neurologists whom I have trusted, I think about why I trusted them. I trusted them because I felt my experience mattered to them. I felt as if they listened rather than heard what I said. They answered my questions and coaxed out what I valued in my treatments and life. I was and am willing to risk greater harm in order to preserve my abilities and life today. The best doctors have listened and have been responsive when I asked for help, and in turn I try not to ask often (a point of contention between me and my wife who thinks I need to ask more).

As I reflect back on the trust class and ABIM’s goal of requiring certified doctors to look at their own practices with a critical eye towards improving patient care, I come back to the comment from the round table. We patients want our doctors to champion our healthcare with us. In order for a patient to feel this bond, we have to feel trust.

I will readily admit much of healthcare today is set against the formation of this trust. Doctors have very limited time with each patient. The paperwork and administrative functions they and their staff are called to do by government, insurance and other organizations seems daunting. As a patient, all I can say is I am asking for a champion and a champion’s time/attention. I know I ask for a lot, always have. I just try not to ask often.

When thinking about how I would want the medical profession to change and how we as patients could measure a doctor’s trustworthiness which includes both intent and ability, I realized there are a few things I need to feel my doctor knows to do and how. I want them to know not only what treatments I may need, but how to chose amongst options and how to obtain needed treatments. The best have been ones who know how to make this easiest for me in terms of money and time, like the doctor who suggested I contact the pharmaceutical company for copay assistance. I want doctors to know how to be approachable. For some this comes easy, but I have certainly seen those for whom it is hard. I want a medical profession where criticism is seen as opportunity for improvement and thus constantly sought at all levels. The openness to being eternal students is critical. We can all improve

There is a kid’s riddle, “What do you call the person who graduated last in their class at Medical school?” The answer is, of course, “doctor.” In my ideal world, the follow-up question would be what do you call them and all the others who graduated ahead of them?” The answer should be just as obvious, “students.”

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Exposure Solves Many Fears

I went to the MS Walk down on the Mall in D.C. this past weekend.  My wife and I had debated me taking our kids for the walk.  I want them to see others with MS if only to counter any fear they may get when they see me have trouble with it.  Ours is a medical family with everyone having their issues.  To a large extent, the best counter for fear is exposure.
For example, when I started my MS treatments, I had a shot a day of Copaxone.  I tried to make sure and do the shots in front of my daughter because as a heart patient who was going to need fairly major heart surgery, I knew her future would include many a needle.  For that matter, exposure helps remove fear and apprehension of many a scary or distasteful part of life.  I’ve had it noted my kids take medications by mouth better than just about anyone’s kids.  Of course they do.  they have been taking them their whole life.  Heck, my biggest problem with getting my daughter to take her nasty tasting meds with her filled syringes is her desire to take them new ways. This weekend, she took them not using her hands and just sucking them up, she took them by standing them up on the table and covering the exit point in her mouth and pushing down on the table to push in the plunger, and she tried to take more than one at a time.  The last is the only one I discouraged because she has tried this in the past with a little chin dribble as the result.  Now tell me most kids would have fun taking their meds like this.
ke them with me, but ultimately, we decided to wait until next year to take them.  There was little notice because I didn’t realize the walk was this weekend till Thursday, and K had an appointment with the MD School for the Blind which the kids also wanted to attend.  Their love for her is commendable.  In addition, it would have meant waking early and the dealing with some anxieties while tired.  We had some fear of “Daddy, you’re not going to end up like him/her are you?  Oh NO.  We have to do something!”  While medications for extreme anxiety are being altered to get a stable state of mind, we weren’t sure what the end result would be.  So we postponed for one year.  Still, I went.
I liked the walk, and I had a great time talking to other walkers about their MS or about the people for whom they were walking.  I also got some information on a non-steroid treatment for flares which I would like.  I almost feel like turning in my man-card every time I find myself crying at something like “Independence Day” with Will Smith.  It’s a comedy darn it!
All in all, it’s been a pretty fine week, even if kids refuse to sleep most nights.

My favorite quote of the week was “Courage is standing alone on the edge of a cliff and being OK with being alone.”

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