Chronic Illness Q&A with Dr. B.

Dr. Larry Berkelhammer

This question & answer column is for people living with chronic health challenges and their family caregivers, who want to learn to increase the odds of improving their health by learning to live with mastery & wellbeing.

I invite you to post your questions in the comments box below. When I get a certain number of related questions, I pick one that covers them all and I answer that one.

I post to this blog three times per week. Monday posts are relevant published articles. Wednesday posts are interviews—mostly video. Friday posts consist of questions about living better with chronic health challenges, and my answers to them.

Here is this week’s question:

THIS WEEK’S QUESTION:  You have written about the importance of seeking medical care at one of the large tertiary care centers. In the chapter on Medical Self-Efficacy in your book, In Your Own Hands, you elaborate on all the things empowered patients do. But, my question is this: If we get our care at one of the top medical centers in the country, can’t we trust that we’ll get the best care?  In other words, If we’re getting all our medical care at one of the medical centers rated highest by US News and World Report, like Mayo Clinic, Cleveland Clinic, Johns Hopkins, or Mass General, can we skip all the other things you suggest are important in order to get good medical care, since they would all be done automatically at such top hospitals?

ANSWER: The advantage of working with doctors who are well connected to one of the top hospitals in the country is that when things go wrong, there will usually be a top specialist who can then figure it out in short order. Therefore, if you are someone who does not have the interest in becoming an expert in your diagnoses, I recommend that you at least put yourself in the hands of a primary care doctor who is well connected at the academic or other top tertiary care center in your region.  That way, whenever you need a specialist, you will be referred to one at that center.

However, the ideal would be to do all you can to learn everything you can about standard of care for your particular medical conditions, and to become knowledgeable about all contraindicated medications and even contraindicated foods.

For example, as someone who lives with mild immune thrombocytopenic purpura, I know to stay away from quinine and well as coffee and many other products. Most patients are unaware of all the things to avoid and their doctors commonly fail to inform them.

My hematologist is at one of the top medical centers in the country, yet, I had to find out about these things by reading medical newsletters that are written for physicians.  About fifteen years ago, I asked my hematologist if there was any risk in my taking NSAIDS such as Vioxx or Celebrex. He said they’d be fine. However, I read about the pharmacodynamics of this class of drugs and didn’t feel safe taking them. Over the next couple of years a lot of new research came out on the adverse events associated with cox-2 inhibitors. The next time I saw him, he advised against taking them. Therefore, even if you get all your care from specialists at one of the top academic medical centers, you still should do all you can to be as knowledgeable as possible about your medical condition.

In terms of the centers you named, they are exceptional, but any of the large academic medical centers in every state are exceptional. In fact, any high-volume tertiary care center is a good choice. I recommend getting your care at the one within a couple of hours drive from where you live, so that your care can be consistent and more accessible. It’s terribly expensive and inconvenient to have to keep flying to another part of the country whenever you need medical care, especially when you are not well.

This website is offered as a free public service, supplying information that has been found helpful to certain people living with chronic health challenges. No treatment is offered on this website. The advice is general, and may or may not apply to your individual situation, and is not a substitute for psychotherapy or medical treatment.

What questions do you have about how to live better with chronic health challenges that are related to the relationship between states of mind and health? 

Just scroll down and type your question in the comment box. I will post a reply to your comment, but your question may not appear in this column.