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.”

“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.

(more…)

I don’t know who it was that said poetry is defined as a language writing itself out of a difficult situation. What I know is illness is one of those situations.  (more…)

When I was first diagnosed,” she said, “I didn’t feel I needed your help. I know how to get what I need—I’m a nurse, we speak the same language.” (more…)

I often think about what the writer and patient Anatole Broyard said, “Stories are the antibodies against illness.”

It’s hard enough that a diagnosis comes along to threaten our lives—does it also have to threaten our life stories?   (more…)

“When I think of people in waiting rooms, including myself, I picture us rifling restlessly through battered magazines,” writes Rachel Hadas, Guest Editor of  “The Waiting Room Reader II:  Words to Keep You Company”.

(more…)

To be a person is to have a story to tell.  —Isak Dinesen

It’s hard enough that a diagnosis comes along to threaten our lives—does it also have to threaten our life stories? (more…)

And now we welcome the New Year. Full of things that have never been…
-Rainer Maria Rilke

With the coming of each New Year I think about what has passed, passing and to come. But today I find myself not reflecting on 2016. Instead, (more…)

Tacked to my bulletin board within my line of sight are the words of Dr. William Osler,a 19^th century physician who pioneered taking medical students out of the classroom to learn at the bedside. Dr. Osler understood that medicine was more than science. He encouraged the students to:

(more…)

For those of you who were not able to attend our most recent SpeakSooner community education program “Being A Caregiver & Caring for Oneself: A Delicate Balance” (August 16 at the Manchester Community Library), I’d like to share a moment from that evening. (more…)