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When ICU Does More Harm Than Good
Leaving ICU is a sign that a patient has survived. But what comes next doesn't always look like survival.
“ICU.” No three letters in the health care field carry more emotion or gravity. Knowing that you are headed for the intensive care unit brings both anxiety at the severity of your condition and hope knowing that you will be receiving the best care possible.
For those living with a rare disease, ICU can be an all-too-familiar experience. I’ve been an ICU patient a half-dozen times since my diagnosis with myasthenia gravis in 2014. Some of these stays have been extended, with some marked by life-saving measures such as intubation.
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It’s been my personal experience that ICU care not only varies among hospitals, but the approach to care can also look considerably different within the same medical center depending on the attending physician, critical care team, and other staff leaders. The shared near-term goal of saving the patient’s life and stabilizing them is the common denominator, of course. How that goal is pursued, however, greatly informs what is often the secondary concern — the physical, mental, and emotional state of the patient in the weeks, months, and years following an ICU stay.
For anyone who has experienced ICU, you know that your life is often seen forevermore in three distinct phases: life before ICU, the ICU experience, and life after ICU.
The first is the life you led before your chronic illness took a turn for the worst, before the trauma that shifted everything. This is the baseline that you measure everything against.
The ICU experience begins with a focus on saving the life of the patient. Once stabilized, you are subjected to constant monitoring, treatments, drugs, and procedures, all designed to move you beyond the emergency to a state of maintenance and eventual discharge.
What happens in the latter phase, life after ICU, depends largely on the approach taken by medical staff during your ICU stay. Choices made regarding sedation, mobility, intubation, family involvement, and other factors can have a profound impact on how your life plays out once you leave the hospital.
For the lucky ones, life resumes as normal. For many, however, experiences such as ICU delirium alter the very makeup of the brain, leading to outcomes such as PTSD, depression, dementia, and a severe degradation in quality of life.
In his powerful book Every Deep Drawn Breath, Dr. Wes Ely relates his journey to discovering and championing a new approach to ICU care. He shares stories of people whose lives were impacted by their ICU stays and how new protocols are changing post-ICU outcomes around the globe.
I will discuss this book, along with Dr. Ely’s work with the Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center, more in-depth in future issues of this newsletter.
I will also share my personal experiences with ICU delirium and the subsequent PTSD from my stay of almost seven weeks in ICU in 2015. You’ll hear stories of me being part of late-night public exhibits that included WWII displays and wax figures of country music stars, being kidnapped by owners of a Mexican restaurant, and the time my attorney’s wife rescued me from ICU and moved me to an upside-down house. My brain could not distinguish between reality and these vivid hallucinations, and the fallout was real.
I hope this series of articles on the ICU experience sparks conversation among those in the rare disease community who have walked this dark road. I believe by sharing our stories we can bring a measure of healing to patients who have suffered, while raising awareness in the medical community of the need to consider the whole patient — and that includes the patient’s future self — when making decisions in the ICU.
If you know someone who needs encouragement in their rare disease journey, please share this newsletter with them. We’ll continue to encourage one another as we grow this community.
Question? Thoughts? Please share in the comments!