Lauren Koffman, DO, MS
As a member of the Educational Products Committee, one of many committees within the Neurocritical Care Society, I was recently asked to review A Guide to Traumatic Brain Injury: The Intensive Care Unit. This guide was written several years ago by Dr. David Y. Hwang and Dayla Maisey. Dayla narrates the book, providing a firsthand experience of what family members can expect to see, hear and discuss when they have a loved one admitted to the intensive care unit (ICU) with a brain injury. After reviewing the guide I could not stop wondering, how did I not know about this? And where can people find this so that they could share with their teams?
Since reviewing the guide, I have had the opportunity to speak with the authors and get more details about how the initial guide was developed, and future plans for its re-release. Dayla’s brother suffered a traumatic brain injury in a motorcycle accident. Several months after witnessing her brother in the ICU, she recalls spending countless hours writing about her experiences. She and her stepmother wished they had been included more in the decision making, as they were part of the “survivor unit.” Her writing was cathartic, but also aimed to assist other survivors and family members. The guide translates medical terms, exams and testing into digestible information for family members to understand.
Dayla initially kept this writing to herself, but felt compelled to reach out to Dave after viewing a recorded presentation he gave on family satisfaction in the NeuroICU, which was hosted by the Society for Critical Care Medicine (SCCM). She remembers emailing him to set up a call and discuss the draft she had composed. Dave received the draft and thought to himself, “this has to get out to people, there is an audience.” He further credits Dayla with the voice of the book.
The original book was released in 2015, in print and electronic copy. After a period of time it was discontinued, but now has found new life. The Neurocritical Care Society plans to relaunch the guide, which has been updated in 2022, and it will be available for download at no cost. The authors are appreciative to the Neurocritical Care Society and its leadership, as this book will support patient and family advocacy. Once available, the hope is for all members of the ICU team to be aware of the product, so that it can find its way to those that need it most.
The revised guide will include more detailed information on the neurologic exam, as well as the role of palliative care and shared decision making. Dayla mentions the misconceptions about what palliative care means and wants family members to understand it includes “active” treatment. She also stresses the importance of goals of care and the role of surrogate decision makers. A key point is the need for family members to understand they are not there to “bring back their loved one as they were,” but instead to “act as if they were at the table and communicate what they would want in that situation.” In this moment of crisis, family members and surrogate decision makers need to relieve themselves of the immense pressure.
Dayla purposely writes in “bite size” pieces. She knows that family members are overwhelmed and are simply trying to function, hoping this will help people get through the worst moments in their life. She and Dave have heard from survivors who have no recollection of their stay in the ICU but read the guide and share that it has helped them piece together lost time and served as catalyst to open discussion with their loved ones who witnessed their journey.
Dayla is clearly passionate about this guide, and family advocacy. She told me that she, and family members, do not want physicians to feel failure when there is not a good outcome. When Breath Becomes Air (by Paul Kalanithi) resonated with her and this except particularly with this sentiment. “I had learned something not found in Hippocrates, Maimonides, or Osler: the physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated, and work until they can stand back up, and face, and make sense of, their own existence.”
The new guide will be available for download in June 2022. To see the authors and hear more about the original guide, click here.