OUR BLOG: A MEDICAL HUMANIST'S NOTES

Dealing with a serious illness. Over 120 attend discussion.

November 18, 2015 at 12:56 pm · filed under communication, family & friends, healthcare professionals

 

Reading the Bennington Banner story about our recent SpeakSooner community program “Building Your Team & Navigating The System” I was catapulted back in time. A few years ago we had been invited by a leading academic medical center to introduce what at that time was our new interactive communication tool—Difficult Conversations Toolkit (Video & Workbook)—to oncology faculty and fellows.

At one of the seminars 60 oncology fellows viewed the video in which 5 cancer patients share their experiences of facing a treatable but incurable illness. After a short pause, I asked the group what they heard these patients saying to them. No one raised his or her hand.

“Just one line. Just give me one line,” I asked.

Finally, a hand went up and one of the fellows said, “The woman in the video who said doctors have a hard job.”

“Bingo!” I heard myself call out.

“Now I am going to rewind the tape [figuratively] to the beginning—to where we hear Laura, one of the patient’s say, ’Nobody gave me a prognosis. I really didn’t want one’ but she admits, ‘I poked around to find one and I didn’t like what I found so I just kind of ignored it.’” She then went on to say—no, recognize— “doctors have a hard job, not everybody wants to have these conversations… but some people do.” Nodding heads and facial expressions confirmed the dilemma they often find themselves in.

“That,” I say, “is why I created the Toolkit—to prepare patients to actively participate in decisions about care and to invite doctors to honestly and compassionately communicate treatment options and quality of life considerations—sooner rather than later.”

From there on, the discussion with the fellows stalled. The extent of the comments were reduced to complaints, which revealed their own frustrations about having no time for these conversations and their fear that an honest prognosis would frighten patients and take away hope.

“Maybe you have time for these conversations in Vermont,” a fellow said.

I went off script. “I grew up in the sixties—I am part of the baby boomer generation—we believe we could change the world. I am your patient. So, get ready for these conversations.”

Now I’d like to fast forward in time to our recent SpeakSooner program in Bennington—to the physicians on the panel (oncology, palliative care and primary care) who, like the fellows, talked about the pressures of practicing medicine in today’s healthcare climate but recognized that they needed help to assure that they and their patients are on the same page.

Everyone left with a copy of the Difficult Conversations Toolkit in hand. One of the attendees noted, You offered the medical community and those who will be requiring medical services now and/or in the future a priceless gift.  The overwhelming attendance reflected the thirst and need for your expertise . . .

I say we are having these conversations in Vermont.

Celia Engel Bandman

Over 120 Attend Illness Discussion

 

 

6 Comments »

  1. This program presentation is so great for anyone over 50. You never know when you or a loved one is going to be given the big diagnosis of Cancer. This really helps you.

    Comment by Carol Herbert — November 18, 2015 @ 4:00 pm

  2. I’d say, in Vermont we make time for these conversations. Bravo that you persevere in this challenging and essential work.

    Comment by Amy Panitz — November 18, 2015 @ 5:05 pm

  3. thank you. individuals working every day with common goals create a community which inspires.

    Comment by allan eisemann — November 19, 2015 @ 8:09 am

  4. Thank you for all your hard work and kind attention to these needs.

    Yes, some are having these conversations, and many are not. Doctors have no way to know which information patients understand and many people aren’t sure themselves or do not know where to get the support or clarity in a busy guarded system. There will always be those who are not able to give themselves permission to ask questions, who don’t know what their questions are, and who are too tangled and lost alone in the system to see clearly. There is always room and need for deeper and fuller conversations.

    Comment by Beth Newman — November 20, 2015 @ 7:33 am

  5. Truly inspired by Thursday’s presentation… and I have read the workbook. Thank you for your effort in organizing and bringing a vital piece of our health to ‘life’.

    Comment by Dottie Sundquist — November 21, 2015 @ 7:05 am

  6. Celia, so sorry I missed this, but more and more people are ready for these conversations. You are so right, we, our generation, has taken so little in our lives lying down, and we will not take the next challenges either. We will ask hard questions, we will seek information, and we will make hard choices for ourselves. Thank you.

    Comment by Consie West — November 24, 2015 @ 10:02 am

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