FJ’s Journey to Patient-Centered Healthcare

There are always stories…

Marks daughterYoung FJ turned one year old last week – what a beautiful child and how can you not love that smile. But she wasn’t always smiling this past year, in fact, she was crying and suffering for much of her first year of life. She is the daughter of a Telluride Science Research Center (TSRC) colleague, the group that hosts our Patient Safety Roundtable and Summer Camps each summer. When her Dad stopped by to congratulate us on our tenth anniversary, and to personally thank us for the patient safety work we do each year in Telluride, he also shared that like many others, healthcare lapses have touched his family as well…

Dad shared that little FJ had struggled to keep food down throughout the majority of her first year of life. She cried after almost every meal and she wasn’t growing either. At seven months, she weighed only 10 pounds, putting her at the first percentile for her age on the growth scale. Her parents tried to tell their pediatrician something was wrong…they had two older children, were not first-time parents and knew FJ’s first year to be far from the norm. They shared that their daughter was unable to keep anything she ate down, yet they were told this was normal and not to worry. In fact, they were told this was “normal and not to worry” by four additional pediatricians who they continued to look to for answers and a way to end their little girl’s suffering. Dad stated “no one seemed to be listening to us, no one wanted to look at the growth chart…they were so confident in their assessment and not willing to consider it might be something else”.

The family continued to search for answers, and finally did find someone who was willing to listen. This care provider asked a number of questions, thoughtfully listening to the family while taking many notes. This “two-way conversation” led to a solution for FJ, and as a result of the family’s tireless commitment to find someone who would listen, she is doing much better and once again thriving. Her parents know what has been causing her problems and feel something is being done to help her. And my guess is that infectious smile seen in the photo above is a more frequent sight.

In Jerome Groopman’s book “How Doctor’s Think”, he shares a story about his own wrist problems. How he saw five different physicians, all very confident in their assessments…and all wrong. None of the five physicians seemed willing to consider another possibility. We call this “premature closure” and there is a large body of research on the topic as it relates to misdiagnoses. But what is far too often overlooked is the wealth of information the family provides–clues leading to a correct diagnosis that are far too often ignored or devalued.

Our Telluride colleague is also a snow science expert and heli-ski guide. As someone charged with evaluating the safety of snow, he also understands the careful study of clues within the environment to diagnose mountain conditions in order to keep thousands of skiers, mountaineers and tourists safe each year. As a three-time parent, he is experienced in raising two healthy children already–working to keep his third thriving in partnership with her healthcare providers. After he shared his story with me that afternoon, he asked why those in the health sciences pay so little attention to two-way communication and listening as compared to other high risk industries. I wish I could have been able to provide a good answer to his question…

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