OUR BLOG: A MEDICAL HUMANIST'S NOTES

What Is Left Unsaid…

June 1, 2015 at 8:17 pm · filed under communication, family & friends, healthcare professionals, Patient Advocacy

Who among us has not attended a professional conference and exchanged a slew of business cards with like-minded colleagues promising to be in touch? But how many of us actually follow up?

I recently received an e-mail from Elaine Meyer, PhD, RN, Director, Institute for Professionalism & Ethical Practice at Boston Children’s Hospital, which brought me back in time – to the Charlotte airport. It was there, more than a decade ago, while we were awaiting departures to our respective cities that we introduced ourselves – not at the International Conference on Communication in Health Care that we had both just attended. In that brief time, as we sat licking our frozen yogurt, Elaine talked about the challenges of her work in communicating bad news to parents of seriously ill children. I explained how my skill sets as a writer informed my role as a medical humanist and proved useful to help bridge the differences between the language of medicine and that of the patient at a community cancer center in Vermont.  

It was evident from our brief encounter that some of the most difficult conversations we’ve had in our respective roles were also among the most meaningful ones. The complicated personal story surrounding our infant daughter’s diagnosis of leukemia in 1976 at a hospital in Boston and her subsequent death in 1979 was left unsaid.

I opened Elaine’s e-mail to find that she also remembered we shared a frozen yogurt at the Charlotte airport but was unsure I would remember her. What I didn’t know is she has been reading my blog and keeping up with our latest work, which she believes resonates with her work and mission. She asked if I would view her recent TEDTalk “On Being Present, Not Perfect” in which she draws on her personal experiences to illustrate how communication in healthcare can lessen or increase emotional suffering. She asked if I would share her presentation with professional colleagues as well as patients and families.

I press reply and tell her, “How could I forget you?” I thanked her for the opportunity to view her TEDTalk and promised to be in touch.

After viewing Elaine’s TEDTalk I decided to share what was left unsaid at the airport -my personal story that shaped the work I do today. I told her about the contrast in care our daughter and us, her parents, received at the hospital where she now works and with our pediatrician who trained at the same institution. In Boston we were not only facing a medical crisis but an emotional one as well. The doctors were relentless in trying to convince us to enroll our child in a clinical trial. Yet, there was little offered about the risks and benefits of treatment options and quality of life concerns other than the questions of frightened parents uneducated in the medical language they spoke. In all of this I somehow found the presence of mind to ask that they call our pediatrician back home. On the phone, our doctor reassured us he would take responsibility for her care. We arranged to get together at his office the following day to explore the options. He would honor what we decided– and he did.

Seared in my memory are the parting words of one doctor. “Do you know what you’re doing,” he declared.  I looked him in the eye and said, “No, I’m not sure, but I wish you would have said, ‘if you change your mind, we’re here’.”

I am now ever more convinced of the importance of educating patients and loved ones to be effective communicators and as patients and families face the equally challenging experience of making difficult decisions about care —bridging the communication gap  will help make it possible for the medical encounter to become a more human exchange, which can benefit all the stakeholders.

Yes, Elaine I too believe that, “Together we can change the world, one conversation at a time.”  Below is the link to her TEDTalk.

On Being Present, Not Perfect

 

 

4 Comments »

  1. Thank you for sharing your very personal and meaningful, moving story. It brings alive what you do in a deeper and more expansive way, and will help so many others even more. What a powerful legacy and way to honor and remember your dear sweet child.

    And what a wonderful TED talk. Thank you!

    Comment by Beth — June 2, 2015 @ 11:52 am

  2. Exquisite meeting of two minds that continue to make a difference.

    Comment by cc. Wilbourn — June 3, 2015 @ 1:47 am

  3. As we approach the anniversary of (your daughter’s) death it is powerful to me how a 3 1/2 year old and Addison (Dr. Meyer’s patient) an 8 year old still speak. I’m always listening but it’s not EASY!

    Comment by Steve Zeide — June 6, 2015 @ 12:50 pm

  4. A chance conference encounter that seems destined -to bring together such like-minded souls. Thank you for sharing your powerful and important experience with your child, and the link with Elaine Meyer’s wonderful talk.

    Comment by Donna Luff — June 7, 2015 @ 7:33 pm

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