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A Year of Milestones: 2015

Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)
Maybe we all need the blind to read to us, especially if they are reading to us about us. (K reading to Scarlet from a book made about Scarlet)

I have a habit of looking back at the end of a year and taking a moment to think about what was important in the year. Often things which seemed huge at the time seem much smaller with the gentle lapping of time’s waves. Other events which seem trivial loom large as their occurrence warns of an incoming avalanche.

With that said, here are my most salient memories of 2015. I turned 40, and I realized I have had MS symptoms for 10 years. Now just having MS for 10 years doesn’t seem like that big of a deal ten years into it. However, early on when I was dealing with head aches bad enough to make me pull over to the side of the road to puke or could not hold on to a soup cup for long enough to pay for it, my ability to still maintain a full time job and help my wife raise three medically fragile children would have seemed foolishly optimistic. So here I sit at 40 years old and having had ten years with MS, and I am planning to run the Yellowstone half marathon in June. It is my way to “rage against the dying of the light.”

When I think of big events of 2015 for me and my family, the events list start with the adoption of K. She has been with us so long, the formal adoption was almost taken for granted. She has been family almost her entire life, and we take it for granted at this point. Of course that is a sign of the truth of the statement in fact as well as in law that she is family.

For other family events, it is hard to come up with one bigger than the summer family reunion in Arkansas. For me, it is still amazing to see the family bonds strong enough to pull more than 75 people together from all over the world every five years. It feels like living in a story from the fifties because I don’t see or know of many of my friends still having big family reunions. It’s an invitation to be accepted into a family group larger than our nuclear family and close friends. For our kids, how great is it to get to know they are connected to so many people of different cultures who approach things differently? Still better, the family reunion was followed by a week with just uncles, aunts. grandparents and cousins. So their personal net of connections got cast out wide and then pulled back just a little to deepen the ties a bit closer on the family tree. The whole trip was a fascinating time to renew friendships and definitely one of my favorite highlights of the year.

Continuing on the family side, I was also lucky enough to chaperone each of my two oldest on their respective scout camping trips. It may seem silly to rate nights spent laying on the cold ground as highlights, but I enjoyed the time bonding with my kids and watching their interactions with their peers. I figure I am not that far away from a time when my kids will grow apart from me and not want me hanging around. After all, the “cool” dad role has a definite expiration date. So for the time being, I will enjoy the chance to tell stories around the camp fire and laugh as other kids are now old enough to know some of the myths I draw from to craft my stories.

Happy moment of found family 2015
Happy moment of found family 2015

On my work front, 2015 was rewarding, informative and depressing all at once. The project I manage lost 6 of it’s 4 employees during the most hectic part of the schedule before publication. No that is not a misprint or a mistake. We lost the replacements of 2 of the spots as well. When we published in September, there was another project manager and I along with two employees who began April 1st and 2nd. When I say rewarding, it is because we accomplished what most outside our group said could not be done for months leading up to publication. I was lucky to get good employees who quickly grasped what I was trying to teach and then were able to move forward. The depressing part was being given a rating of barely passable performance by new management who never understood what was involved in meeting our publication dates. So they praised us in public for accomplishing what most thought could not be done, and then in private they rated us as low as they could without having to justify the ratings. As a kicker, the other project manager was removed from our area in the weeks following publication. The upside is the rating has reenforced in my mind the need for cultivating an ability to appreciate accomplishments regardless of others’ opinions. I teach it to my kids, and this is just an example where I need to live what I teach.

Thankfully, if my job threatened to make me question my abilities to think critically to work towards a goal, my work with the American Board of Internal Medicine (ABIM) as patient’s advocate has been rewarding. It is fascinating for me to learn how they determine what a doctor should need to know after they have been practicing medicine for years. ABIM then gave me two great recognitions of my input. They extended my term of service on the board as my initial term was expiring, and they asked me to help them on another as they set up a conference promoting patient centered medicine. Not much makes me feel more appreciated than being asked to continue and then asked to do more.

Still, the highlight from a feeling of possibly having an impact on healthcare came when I was asked on a Wednesday afternoon in October if I would present at the FDA on the following Monday. The kicker was I had to have a presentation to them by Friday. Thankfully, the topic of the presentation was REMS: Understanding and Evaluating their Impact on the Health care Delivery System and Patient Access. It was an opportunity for me to talk about risk management from a patient’s perspective because I take a drug with a chance to leave me with a brain infection likely to cripple or kill me if I get it. Talking about numbers and what they mean is the type of conversation I frequently lead at work as we review data, and I had just written about our inability to really conceptualize large numbers. So I wrote up the presentation on Thursday night and gave a quick run through with my coworkers on Friday before submitting. On Monday, I gave my presentation and actually had some applause which shocked me. Having people come up to me for the remaining 2 days referring to me with “you’re the numbers guy right?” was a great shot in the arm. I was even contacted months later by another patient advocate who watched my testimony and was impressed enough to re-watch it before presenting to the FDA at the request of the MS Society. Giving that presentation was a high water mark for feeling my thoughts on our healthcare are respected even if I think they are often given more weight than they deserve.

My theme for this past good year could best be stated, “It feels good to be valued.”

There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.
There is a some times shy super hero inside us all. This is one of my favorite pictures from 2015.
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Doctor choice, education, expectations, healthcare information, hiding symptoms, innovation, Innovation in Health Professional Education, introspection, kid's medicine, learned social interaction, life with MS, Multiple Sclerosis, patient centered healthcare, patient choice, trust

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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