Patienthood: Starting with the Basics

August 31st 2012   ·   0 Comments

By Dr.  Steven Z. Kussin, M.D., FACP

A quick note to my kind readers: All the links and references presented below to the various institutions and organizations with the information you seek will add to your knowledge.

The King and You

What do medical smarts and the Broadway show, “The King and I” have in common? When you are in the doctor’s office, it literally is the King and YOU. Learning to speak to the King is the first job in advocacy. Of course these Kings and Queens are not like the rest of us. They require certain rituals before they acknowledge you. Yes, this is not the way it should be. But it is the way it is, so ya gotta live with it.

Kings (from here on called Doctors) will not respond to, or respect questions (or the questioner) if you approach without doing your homework.

Google search? WebMD? THE TODAY SHOW? “Take him to the Tower!”

Get it? You don’t have to bow to the doctor, but you have to bow to the sanctity of valid medical information. Respect for data plays to the importance of what you and the doctor are trying to accomplish in that exam (throne) room. Docs take what they do very seriously. Questions, ill informed or from unprofessional resources, demean what many of us see as our mission in life…to deal with data so that those we treat are given the best available treatment. Oh yeah, and to drive a nice car.

You are told “Be your own advocate.” Fine, but to whom? “Speak up!” About what? It’s best to know what you are advocating about. So here’s where there is another example from “The King and I.”

Getting to Know You

The first verse of the song “Getting To Know You,” goes,

“It’s a very ancient saying,
But a true and honest thought,
That if you become a teacher,
By your pupils you’ll be taught.”

Doctors should be teachers, and the best ones learn from their patients. “Getting to Know You” is the first step, to learn the basics and allow you to have a meaningful conversation with your doctor. She will actually listen to you and more importantly, begin to allow you to enter her circle of empathy. Doctors don’t usually choose who they care for, but we all chose who we are going to care about.

Health literacy, “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” has to start somewhere.  An introduction is the first step toward knowledge. When a medical problem strikes, you have to be introduced to your problem. Then let it yield its secrets through reading and research.

Educational support in the form of written materials, videos, on-line information and group sessions are often used. The problem though is that, as introductions go, they speak at too high a literacy level for most readers. That immediately frustrates the desirable “hello, how are you, let’s talk” introduction that allows you to learn and then ask the right questions.

So Where Do You Begin?

The Institute of Medicine asked doctors to develop certain skills that would empower patients during visits. I have paraphrased that document. You need to “develop meaningful, ongoing relationships with health care providers based on open communication and trust.” You must “obtain timely and accurate diagnoses for both acute and chronic health conditions.” It’s up to you to build and refine the skills needed to safely and effectively manage your illness and to be able to communicate with the health care team with your own needs and priorities.

If you don’t understand something, clear the air at the time a test or procedure is recommended. You get no time outs or do-overs if it all goes wrong. You must make informed health care decisions that reflect your own and your families’ values and wishes.

OK, OK Already But Where Do I Start?

MedlinePlus is the National Institutes of Health’s Web site for patients and their families and friends. Produced by the National Library of Medicine, Medline-Plus offers reliable, up-to-date health information, anytime, anywhere, for free.  It has an ‘easy to read’ site for material written at the 8th grade level, and ‘tutorials’ written at the 5th- 6th grade level. This material is NOT dumbed down, and even those with advanced degrees can get an introduction to their problems. The NIH has audios, written and illustrated teaching tools for hundreds of conditions that go into great detail without a great deal of gobbledygook. Highly recommended.

http://www.healthliteracy.worlded.org/docs/family/easy.html has a huge encyclopedia of easy to read, consumer oriented health and wellness information. From the symptoms of shingles to the calories in Pringles you’ll learn it all.
When it comes to educating its citizens no one beats the feds.  The Brits are a close second. See http://www.easyhealth.org.uk/ for videos, written materials and audios for dozens of the most common and yet dangerous condition that you need to know about and that now you CAN know about.

http://www.netwellness.org/ offers over 55,000 pages of health information come straight from the faculty of three leading universities. It’s unbiased, anonymous and private–a good place to start your medical journey.

Just last week routine cardiograms were discouraged for low risk patients. But how do you figure if you are low risk or whether you have symptoms what warrant investigation?…well here it is.. http://www.yourdiseaserisk.wustl.edu/ .. is a guarantee against disease and fear mongering. If you are at no particular risk for a disease, it’s legitimate to question its necessity.

All journeys start with a single step. Medical journeys never end that way.

By Richard