Category Archives: hiding symptoms

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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I Got Your Crazy Right Here!

If you want crazy, I can do crazy!
If you want crazy, I can do crazy!

At camp this week, O celebrated “Crazy Hair Day.” When it comes to crazy, it’s a house specialty, and we wouldn’t have it any other way.

It was an excuse to take advantage of O’s naturally flamboyant, impulsive nature.  It some ways, it was like asking a cat to sit in the sun.  With O, his impulsive side frequently gets him into trouble,but days like today are our rewards for dealing with the negative consequences of impulsive behavior.  We all get to smile and appreciate the joyful abandon with which he can throw himself into a project.  It is one of his traits I think we need to cultivate as much as possible because it will let him do things as an adult nobody else even considers.  Free thinkers move society in ways those of us stuck in our mindsets will never anticipate and frequently only appreciate in hindsight.

As for me, my crazy was a bit different this week.  I went to a block party to say goodbye for some of our neighbors with whom we have been friends for years.  The crazy part was my inability to remember anyone’s name outside of my family.  Now I have spent minutes remembering my wife’s name, but I have never drawn so complete a blank on so many names with whom we have hung out for years.  I couldn’t even remember their kids names as they played with A, O, and K in the cul-de-sac.  I guess I am lucky I have so much practice dealing with people who know me whose name I do not know.  Years of being an R.A. in college came in handy once more.  Of course, years as the dad of A, O, and K have the same effect.  Their behaviors and stories are frequently a topic of discussion with other parents and bystanders who know us or of us.

Still, I hope this recent memory lapse is the result of stress and pain rather than another flare.  The experience was rather disconcerting, but I do not think anyone else noticed.  I have been lucky for most of the past five years in terms of MS progression.  Reluctantly, I am scheduling a titer count, a test to see the risks for continuing to use Tysabri. I have put it off long enough.  I know the test will say nothing of whether I am having a flare, but it will give me a better sense of the risks I face continuing to use Tysabri.

All in all, it is just another “crazy” week, but it is one with a lasting image to make us smile.

Here’s to the exuberance of youth!  May we all hold it for as long as we can.

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