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
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.”
Invisibility Is Not A Natural State
June 28, 2017 at 2:39 pm · Filed under communication, family & friends, healthcare professionals, Patients

“We need to raise our voices a little more, even as they say to us, 'This is so uncharacteristic of you.’ Invisibility is not a natural state for anyone." MitsuyYamada

After each of our SpeakSooner community education programs I would ask myself, “How did this program differ from the one before? And, what was the take away?” I often wonder if others ask themselves the same questions. What brought this to mind was an e-mail I received from a hospice social worker who often attends our community programs. ...

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