OUR BLOG: A MEDICAL HUMANIST'S NOTES

On Being A Patient

September 20, 2012 at 10:11 am · filed under Newly Diagnosed

Brian Gawlik had been managing his illness for over a decade when we interviewed him in 2008.

As we prepared to launch the new SpeakSooner.org website and I began to brainstorm topics for blog posts, I remembered his incredibly wise words.

We spoke to Brian as part of the work we were doing to promote communication in medicine. At the time we spoke he was readying himself for a bone marrow transplant. He was so articulate at expressing the challenges he had to face  “being a patient” that we featured a portion of his interview in CCM’s newsletter. Sadly, Brian passed on the following year.

Now, on the occasion of the launch of this new website, I hope his experience will continue to speak to patients everywhere. It is with gratitude to him that I am able to share his words here:

Brian Gawlik, “On Being A Patient”

 “Ten years ago my notion of being a good patient was to listen, not communicate, and leave. I needed to know [then] I had a right to ask… I learned quickly it was all about communication. Patients [must] feel that they have permission to say ‘I don’t understand…you need to say it in simple terms’. I discovered that there is no benefit in hiding anything. It all feels so personal and invasive but it is in our best interest to share it all. Every patient has to understand that this is a partnership [between doctor and patient]—each has to understand what is expected of the other.

 “A good patient is not being the patient you think the doctor wants you to be. A good patient is being who you are… We are who we are because we learn. Who I was as a patient ten years ago and who I am as a patient now is because of all the experiences I’ve had with CCM and with [other] patients… CCM helps patients understand what they need. I record my visits, which takes away the worry of me having to remember everything the doctor says.

 “It’s a process—a dialogue with others—with oneself… ‘Patient, know thyself.’ Sounds so trite. You have to really do some soul searching—it’s …work; it’s not something you do on the way to the doctor’s. It’s that long walk kind of stuff where you contemplate your life—what you need, what makes you happy—what doesn’t. [When] you know those things, it makes the medical encounter so much easier. When the communication process is efficient it leaves time for conversation—time to talk about anything else—to learn about each other and bring in the human element.

 “Communication goes beyond the doctor—it’s with family, friends, employees, employers. Now that I am getting closer [to the transplant] I am spending more time thinking about what they need and they’re feeling much more included and that they have roles to play. And those roles are important.

 He concluded by saying, “Patient know thyself. Family know thyself. Doctor know thyself.”

 

Equipped with this self-knowledge we can begin to communicate more clearly with one another.

–Celia Engel Bandman

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