Category Archives: introspection

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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Ten and Forty



This picture dates back to days when I was flaring before I was diagnosed with MS. I was lucky to spend the week with my mom, father-in-law and brother-in-law rafting down the Grand Canyon.

I realized a couple of weeks ago that it had been ten years ago that I had horrible headaches. For months I had headaches bad enough to wake me up in the middle of the night. The irony is the headaches would only go away with sleep. I used to ask my head, as if it were separate from me, “Why do you wake me up to tell me to sleep!” I might have yelled except J was sleeping, and the prospect of yelling with those headaches seemed abhorrent. I went to my primary care doctor, an ear nose throat doctor, an ophthalmologist, and got an MRI. I took steroids and antibiotics. I thought I had been tested nine ways to Sunday. During all this time, the headaches came in waves with good and bad days. It was like this for almost a year before I was diagnosed with “probable MS.”

However even during this time, I was incredibly lucky for I had almost an entire good week perfectly timed to allow me to go on a trip with my mom, my father-in-law, and my brother-law to go white water rafting down the Colorado River through the Grand Canyon. During this week, I rarely needed head ache meds, though this was the beginning of my realization those meds do nothing for me. It was only on the last two days that I began to have problems again. At the time, this was a very welcome break from the stress of feeling as if my eyes could shoot laser beams.

As I hit the ten year mark, it seems a natural time to look back and ask what MS has done to me.  How has it changed me?  Even with Tysabri, I still progress.  It is just a slow progress, almost imperceptible if one’s time frame is carefully chosen.  I saw a doctor on a research board comment about how much more seriously MS would be taken if all the damage happened at once.  Spread out over months and years, patients are assumed to adapt to our invisible ailments.  So, how do I see myself changed?

The biggest changes aren’t to my physical abilities.  Yes, buttoning shirts quickly was nice.  Playing competitive sports, especially soccer, was how I used to draw confidence and get over the worst parts of life.  Multitasking despite distractions sure made life easier. However, these things are small compared to the biggest change I see in myself.

The biggest change I see is far more insidious, how I measure success day to day.  For most of my life, I have tried to progress, to do better today than yesterday.  As time has gone by, I find myself ever more trying to stave off degradation rather than improve.  I run three or four times a week, and I keep track of my times and abilities to run intervals during my run.  More and more often I find myself changing goals from running a marathon to running another half marathon.  I find myself satisfied equaling glories past.

In moments of honest reflection, I have to admit much of what I see on these fronts could be as much a factor of rapidly approaching forty years old rather than ten years with Multiple Sclerosis. I simply fear MS ages me faster and faster year by year. Still, my bet is many people approaching 40 suddenly find themselves noticing all the ways we are no longer 21. C’est la vie.

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