A Medical Humanist's Note

Doctors interested in empowering their patients to speak freely could begin by handing them this workbook. As we were working on the materials for this website, my attention was called to a new study in Health Affairs that suggested even the most affluent, educated patients felt reluctant to ask questions or speak up about treatment preferences. The study has been archived now, but its message has stayed with me. The patients studied said they felt their doctors were “authoritarian” in manner. The study’s authors contend, “physicians may not be aware of the need to create a safe environment for open communication to facilitate shared decision-making.” As an eyewitness to the medical encounter I observed that many doctors may well be aware of the need, but unsure of just how to create that safe environment. Particularly when “cure” is not an option. And as a result, they may be disheartened or avoid the conversation because of how little they feel they have to offer their patients. The Health Affairs study worried about the ongoing lack of progress when it came to teaching doctors to invite patients to speak up. One participant’s comment was strikingly familiar: “I don’t know if the reason why I was so poorly informed was because I don’t ask enough questions or because they don’t give me enough information. It seems to me everybody is in a hurry...and I begin to feel guilty about taking up their time and...after it’s all over I...think to myself, why didn’t I ask them more questions?” And yet reading this, I felt hopeful. Because the very website we were designing was conceived as a way of helping doctors begin exactly this dialogue. Which means that, for doctors, creating that “safe environment for open communication” could be as simple as handing the Difficult Conversations Workbook to a patient and saying: “As you go through this workbook, know that I am here ready to listen and address your questions and concerns. There might be hard choices to make—but we’ll do the best we can together.” And just like that, a real conversation will have started. --Celia Engel Bandman
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
When I receive the letter, I do not recognize the return address on the envelope, but "MD" alerts me it is from a physician. It begins, "Why is it after 40+ years of treating patients am I just hearing of a 'medical humanist' now?"  The answer is that "medical humanist" is a role I created. Inspired by one of the fundamental principles of humanistic medicine, which is  "open communication," I translated that idea into a practical model to help facilitate physician/patient communication in the medical encounter. A three-year pilot program in a regional cancer center in Vermont afforded me the opportunity to pioneer the medical humanist communication model in day-to-day practice. As the center's resident "medical humanist," I documented-in each patient's own words-what they understood about their diagnosis and treatment plan as well as how they were coping with the effects of illness on their lives. I asked what more their physicians needed to know to provide more effective, more compassionate care. I recall the patient who answered, "I am looking for a medical companion--a doctor who will link arms with me…" Another patient said, "An important element of care is to recognize the dimension of my fear." These words echoed what I had come to know as the collective plea of patients entering the world of illness. The concerns I documented were incorporated into each patient's medical record under the heading, "Medical Humanist's Note." Reviewing my note provided an opening for the physician to address misunderstandings as well as unspoken expectations. The words I took down also helped bridge the gap between the patient's experience of illness and the doctor's more clinical approach to care. This pilot program changed the manner in which medical services were delivered at that cancer center. But every healthcare institution these days must make difficult budgetary decisions. As a result, my role in day-to-day practice at that facility came to an end. I wrote an essay about that pilot program which appeared  in the Journal of the American Medical Association. It was entitled "A Medical Humanist Says Goodbye." Among the countless e-mails I received in response, one has stayed with me. It said, "I look forward to the day when I will read, ‘A Medical Humanist Says Hello.'" That day has come. We will all be patients someday, and the care we receive will depend on how well we communicate. But there are barriers-for both patients and professionals--in every room where these conversations happen. I hope this blog can become a forum where conversations take place and the role of communication is explored.  Did you know the origin of the word communicate dates back to the 16th Century: from Latin communicat- meaning "shared"? I will be sharing here some of my firsthand experiences helping facilitate communication, and also handing the microphone off from time to time to patients, loved ones and healthcare professionals, inviting them-and our readers--to share their experiences and views about the lived world of illness. --Celia Engel Bandman