Finding A Path Through Illness

There’s no right or wrong way to cope with a treatable but incurable illness. But clear communication about needs and concerns is critical to helping you, the patient, secure both appropriate medical care and emotional support. The Difficult Conversations Workbook uses video of fellow patients’ reflections as a framework for guided writing exercises designed to help you identify and communicate your hopes and goals for treatment and beyond.

Our “paradigm changing” programs educate communities about the patient’s role in opening difficult and meaningful conversations with family and healthcare providers. Learn More

Celia Engel Bandman
August 28, 2017 at 3:23 pm · Filed under communication, family & friends, healthcare professionals, Newly Diagnosed, Patient Advocacy, Patients
  A colleague recently forwarded a New York Times article, “The Appointment Ends. Now The Patient is Listening." The author Paula Span notes new efforts to help patients understand their health status by recording appointments. I have often been asked about how to prepare for appointments with doctors. Although many of us do not know what questions to ask, it’s still important to bring a list and a recording device. My reason for suggesting patients record their appointments was not based on scientific principles but what I learned in my role of medical humanist at a cancer center in Vermont (2003-2005). I documented--in the patient’s own words--what they understood or misunderstood about their diagnosis, treatment options and how they were coping with illness. After having read and signed off on my medical humanist’s note, doctors would often say, "They never told me that." In an emotionally charged conversation much is not retained. So, using the note as a reference, doctors would then ask, "What don't you understand?" Ms. Span notes that Dr. James Ryan, a Ludington, MI physician, recognizes it’s difficult for patients not to feel overwhelmed by what they hear during the medical visit. With permission he records appointments so his patients can listen to what was discussed. “At some point,” he believes, “it will become a normal thing.” In a 2013 blog "Why Every Patient Should Be Recording Appointments" I addressed the issue of recording visits. It is now 2017. The time has come for patients to have every resource available to help with understanding what questions to ask. Whose life is it anyway?
July 26, 2017 at 1:51 pm · Filed under communication, family & friends, healthcare professionals, Patients
  The title of one of my previous blogs in and of itself posed an important question: “What Is A Good Patient?” How one defines a “good patient” varies, as does their reason for wanting to be one. During my tenure as a Medical Humanist at Southwestern Vermont’s Regional Cancer Center I witnessed the difficult task doctors faced in reconciling those who became patients—to their illness. Dr. Judy Raffone, who had become a patient, shared the lived experience of illness and its impact both personally and professionally. And, in so doing, humanized the doctors’ experience. With Dr. Raffone’s permission, I am sharing what is a valuable teaching moment – a gift. “In February, I had to take on a new role: patient. I have been a physician for over 30 years. I work daily at open communication, active listening trying to meet the patient/family where they are, try to have discussions that are important to their health. I strive to do that to best meet their learning style—verbal, written, pictures on line material, call backs from my nurses or me to review their understanding and questions that have come up. Do we get it right every time, absolutely not, we can only do our best? That being said, to be a good patient, you need to improve your active listening skills. On any given appointment, I know before hand how I am feeling—STRESSED, stressed, TIRED, tired, COMPLETELY AWFUL and last week WHINEY. I let my nurse know up front where I am emotionally that day as it effects what I communicate, what I hear, what I retain. If I am in any of the CAPITAL states, I always write down my questions, new medications, medications I stopped taking, what side effects have happened though the week and when (my treatments are weekly). Other times it’s a combination of memory (I’ve reviewed getting ready) or written. At the start of the support process I always had a support person with me –generally—my husband—paper and pen (I am faster than writing notes on my iPhone) so that I could take notes and have my questions readily available to ask. A patient (and their support players), a good physician, good nurse, and good ancillary staff, combined together are a great team if everyone takes a few precious minute to be open to find out who you are as a patient.  You as a team need to understand your team is doing the best they can on any particular day recognizing that stress changes things. In the past 3-½ months I have consciously tried to self manage stress with a laugh a day, resting more (and my team will tell you I need reminders) on my treatment day many laughs. That helps me understand their message and ask appropriate questions so I don’t sabotage my treatment.”

On Wednesday, July 12, 2017 the Vermont Center for Independent Living will present a SpeakSooner program, “How To Improve Communication with Doctors” at the Unitarian Universalist Fellowship, 108 School Street in Bennington, Vermont from 1-3pm. The program is free and open to the public. Patients, families and healthcare providers are invited. For more information click here or contact us at 802-442-5800 or b.bandman@speaksooner.org

The most important questions don't seem to have ready answers. But the questions themselves have a healing power once they are shared.
Rachel Naomi Remen, MD
Kitchen Table Wisdom