Patient Safety Week Guest Blog: Serious Clinical Adverse Events: Learning Through the Eyes of Patients and Family Members

To mark Patient Safety Week, we will hosting a number of guest blogs. Today’s entry is by Jim Conway, Adjunct Faculty, Harvard School of Public Health

In responding to serious clinical adverse events, we’ve learned our priorities must be to the patient and family, the staff, the organization, and the community.  The goal is for all parties to be able to say in the aftermath of tragedy that they were treated with respect.  Key elements of this respect include: empathy, disclosure, support (including reimbursement), assessment, apology, resolution (including compensation), learning, and improvement.  An essential vehicle to achieve those key elements is honoring their story and active listening to patients and families.  It is about them.  They have much to teach us that we don’t know.  At times of great tragedy and sacrifice, they are willing to give so much.

A few months ago I was invited to the University of Minnesota to give the Julia Berg Memorial Lecture Pediatric Grand Rounds titled “Medical Error: The Burden, Responsibility, Power” in honor of Julia, a 15 year old, who died as a result of medical error. There was no single person at fault. The system broke down. There was a misdiagnosis, one thing led to another and bad decisions were based on bad information.  In preparation I was given an article, published anonymously in Academic Pediatrics, that her father had written, titled “Doubt.” I found it both tragic and exceptional.   It closes with Dan saying “In the end, we hope that Julia’s story might give pause on those occasions when data conflict, test results are weird, and doubt demands a voice.”  The article joins other resources her family, friends, and care providers have developed.  In conversations with her parents, Dan and Welcome, and with those involved in her care, I was moved that their emphasis was on the key elements already noted and worth repeating:  empathy, disclosure, support (including reimbursement), assessment, apology, resolution (including compensation), learning, and improvement.   Everyone wanted this story shared.

Marshall Ganz has taught us “Storytelling is about translating our values into emotions that enable us to act.”  As a leader, I personally have discovered the power of story and, those who know me, you know I’m a story teller. On the way home from Minnesota, I thought of a flood of patient safety stories that had been shared in person and via article, blog, video, and more.  Quick to mind were many international and national stories. Close to Massachusetts are the stories of Betsy Lehman, Linda Kenney and MITSS, the CRICO/RMF When Things Go Wrong Series, the recent story of Mrs. Welch by her physician son, the video stories of the Health Care for All (HCFA) Consumer Health Quality Council, and so many more.  Of note, the video stories in the HCFA series have now been viewed in total by almost 150,000 people.

In the last few years I was part of an IHI community that assembled resources, including some already mentioned, to help guide the respectful management of serious clinical adverse events.  After my visit to Minnesota it was clear that the IHI team needed to search more comprehensively and have its resources in this area become much deeper.  This week IHI adds “Through the Eyes of Patients and Family Members” to these existing resources in support of respectful management of serious clinical adverse events.  Scroll thru and view them.  The materials are powerful, authored in a time of immeasurable grief, with great clarity.  They provide the patient / family perspective on diagnostic error, abandonment, infection, and so much more.  If there is confusion about how to move ahead on your disclosure policy, or there is some question on the need for a written crisis management plan, these stories will provide the clarity. If your organizational attention to these issues is underpowered, these stories will provide the fuel.     When trustees need to understand the potential impact of a hospital acquired infection, there is no better teaching story than HCFA’s Ginny’s Story:

Continuing education programs around safety and harm are always stronger when they are anchored in the story of the patient and family.  We should listen to these stories, utilize them to drive change and improvement, and encourage the sharing of the stories in person and through articles, video, blogs, and other media.  As a community we should thank those who have told their story and specifically applaud the work of HCFA for all they have done to guide and bring light to the path forward.
-Jim Conway
 Adjunct Faculty, Harvard School of Public Health

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2 Responses to Patient Safety Week Guest Blog: Serious Clinical Adverse Events: Learning Through the Eyes of Patients and Family Members

  1. Kathy Keller says:

    Thank you for initiating the addition of “Through the Eyes of Patients and Family Members” to the IHI website. One of the articles with the most impact to me is the one titled “As She Lay Dying: How I Fought to Stop Medical Errors from Killing My Mom” by Jonathan Welch. We as patients and family members are frequently reminded we need to “speak up”. This article highlights how difficult that can be – here is a physician who worries about “speaking up” and the possible consequences of doing so. With no ongoing conversation or communication, it is so very difficult for patients and families to feel comfortable to ask the questions, let alone question. It is up to the organization to make sure that door is always open. Thanks again.

  2. Jo Ann Endo says:

    Jim: Thank you so much for your leadership. In the last six months, I have spoken to more people from around the country who are making progress in this area than I ever have and so much of that progress started with you.

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