Delirium and the Power of Storytelling

Contributed by Heidi Lindroth, PhD RN, T32 Postdoctoral Fellow, Indiana University School of Medicine, Division of Pulmonary and Critical Care Medicine, Center for Health Innovation and Implementation Science

The COVID-19 pandemic has brought the terror of delirium to the forefront. Featured articles in the New York Times, the Atlantic, and others, have highlighted the enormous detrimental impact of delirium. I wrote this blog to showcase the practice of storytelling and how powerful it can be when we lead with our why. This is one of thousands, if not millions, of stories about how delirium has derailed someone’s life. We need to share our stories to create a shared narrative and change practice.

You can never predict the moment that changes your career. For me, it started when Glenn agreed to be a study participant.  We met before his pre-op visit in the vascular surgery clinic. He arrived late, having been delayed by a car accident, but would not consider cancelling our visit. I learned about his background, the surgery and a grand plan to travel around the US with his wife, driving his RV.

The next time I saw Glenn, he was delirious and barely able to respond to questions or communicate in any way. He did not recognize his wife and was agitated and restless, wildly looking around the room. Most of the time he remained asleep and barely responsive. When his breathing tube was finally removed and he was moved out of the ICU, his symptoms of delirium actually increased, fluctuating by the minute between an agitated, hyperactive state with rhythmic rocking motions to being an almost unresponsive, limp ragdoll.  At times, he was convinced everyone (including his wife) was trying to kill him, repeatedly asking me for the nuclear codes while accusing others of keeping him in jail.  Nobody knew what to do. The research team created a non-pharmacological strategy kit as recommended by the HELP program (1-4).

On the 21st day, for the first time since his surgery, Glenn’s eyes started to focus, and in a moment of lucidity, he asked me a question I didn’t want to answer.  “Have I lost my mind? I know you are studying this, can you tell me if I’ll ever be the same again?” I was stunned and didn’t know how to respond except to comfort him and try to release his fear. I felt an intense sadness because I knew it was unlikely he would ever be the same again.

Ten days later, Glenn was discharged with subsyndromal delirium symptoms but was readmitted within 30 days. He was not the same. He knew that everything had changed.

I met Glenn for the last time one year later. He didn’t really recall the details of his hospital stay, but he felt terrified when he thought about it and sometimes felt persecuted by others. He could no longer do simple math or remember the date. The grand plan to travel in the RV had been “delayed” because he was afraid to go too far from home. I had no answers for Glenn; I can only share his sorrow.

Glenn made me realize the importance of the work to create a world without delirium, and this has become my vision. Certainly, Glenn’s elective surgery was filled with unexpected complications, but we also did not make the effort to fully prevent delirium by optimizing his brain health before, during and after the surgery. We didn’t implement evidence-based solutions in advance, so when we needed them, they were unavailable. Nobody will ever know if we could’ve prevented Glenn’s decline, but I know we could’ve done more.

I’m telling this story to reinforce the importance of building a world without delirium. As Dr. Malaz Boustani shows us, to successfully change practice, we must build demand for change. Effective storytelling can help create a shared understanding and human touch that leads to change (5-8). Dr. Sharon Inouye recently shared her story of her father’s fight with delirium in the New England Journal of Medicine (9). During World Delirium Awareness Day in March, several delirium survivors shared the lasting impact of delirium on their lives (#WDADchat; #WDAD2020). Sharing our stories is critical to making progress. We have evidence-based solutions to prevent delirium and we must move these tools beyond research and into routine practice. Delirium literature, including studies on non-pharmacologic delirium interventions, can be accessed in the NIDUS bibliography at https://deliriumnetwork.org/bibliography/

Glenn’s story gets me out of bed each day and drives my passion to stop delirium. We will never know to what degree we could have prevented the devastating outcomes that changed his life. Hopefully, Glenn’s story will encourage you to implement delirium prevention efforts in all settings of your practice.

References

  1. Wang YY, Yue JR, Xie DM, Carter P, Li QL, Gartaganis SL, Chen J, Inouye SK. Effect of the Tailored, Family-Involved Hospital Elder Life Program on Postoperative Delirium and Function in Older Adults: A Randomized Clinical Trial. JAMA internal medicine 2019.
  2. Inouye SK, Bogardus ST, Jr., Charpentier PA, Leo-Summers L, Acampora D, Holford TR, Cooney LM, Jr. A multicomponent intervention to prevent delirium in hospitalized older patients. The New England Journal Of Medicine 1999; 340: 669-676.
  3. Program HELP. Hospital Elder Life Program (HELP) for Prevention of Delirium. The Hospital Elder Life Program; 2018.
  4. Yue J, Tabloski P, Dowal SL, Puelle MR, Nandan R, Inouye SK. NICE to HELP: operationalizing National Institute for Health and Clinical Excellence guidelines to improve clinical practice. Journal of the American Geriatrics Society 2014; 62: 754-761.
  5. Solid C, Nazir A, Boustani M. Agile Implementation. J Am Med Dir Assoc 2019; 20: 795-797.
  6. Gallo C. Storytelling to Inspire, Educate, and Engage. American Journal of Health Promotion 2019; 33: 469-472.
  7. Azar J, Kelley K, Dunscomb J, Perkins A, Wang Y, Beeler C, Dbeibo L, Webb D, Stevens L, Luektemeyer M, Kara A, Nagy R, Solid CA, Boustani M. Using the agile implementation model to reduce central line-associated bloodstream infections. Am J Infect Control 2019; 47: 33-37.
  8. Boustani M, Alder CA, Solid CA. Agile Implementation: A Blueprint for Implementing Evidence-Based Healthcare Solutions. Journal of the American Geriatrics Society 2018; 66: 1372-1376.
  9. Inouye SK. Joining Forces against Delirium – From Organ-System Care to Whole-Human Care. N Engl J Med 2020; 382: 499-501.

 

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