Consumer / Employer, MedCity Influencers

What I realized about hospitals as my brother lay dying of cystic fibrosis in the ICU

During my 36-year-old brother’s terminal stay in the ICU, I discovered a dire need for a more comprehensive approach to critical care. The more he relied on this large, corporate hospital system to keep him healthy and happy, the clearer it became that no matter how highly-ranked or well-funded it was, this hospital did not possess the flexibility, agility, or progressive thinking it needed to confront cases like his.

Geoffrey, the author’s brother, at age 23

My brother Geoffrey died from a life-long debilitating illness called cystic fibrosis (CF). A disease that attacks the lungs and other internal organs, it landed him in the hospital more times than I could count. And the more he relied on this large, corporate hospital system to keep him healthy and happy, the clearer it became that no matter how highly-ranked or well-funded it was, this hospital did not possess the flexibility, agility, or progressive thinking it needed to confront cases like his.

CF is a rare genetic illness that causes dry, sticky mucus to accumulate and choke one’s organs. It attacks the lungs first, causing breathing difficulties and chronic respiratory infections. The mucus also damages the pancreas, causing a form of insulin-dependent diabetes that is unpredictable and dangerous. The disease progresses differently in each patient, requiring care from a multidisciplinary team of doctors, nurses, and respiratory therapists.

In 2018, Geoffrey received a double lung transplant. A risky procedure with a low chance of long-term benefit, it gave him his best shot at extending his life beyond his fragile 34 years. But only 18 months later, in May 2020, Geoffrey started coughing again and he brought himself to the hospital. His body was rejecting his new lungs and his doctors could not figure out why.

This would be his last stay at the hospital.

Geoffrey’s regular team of doctors and nurses were like family to him. He won them over with his unwavering pragmatism, his gregariousness, and his crude sense of humor – even on his worst days. Visits to his room gave them a much-needed reprieve from the relentless stress of working with the gravely ill. Additionally, Geoffrey’s family and friends visited constantly, making his room the hottest social scene on the floor.

But during Geoffrey’s terminal stay, this routine was disrupted. First, his case was handled by a team of healthcare professionals who were less familiar with his CF. Second, Geoffrey had to be sedated, which took away his personality and voice. Finally, due to Covid-19 restrictions, the hospital was not letting in any visitors. Without his standard medical team, his family, or himself able to speak on his behalf, Geoffrey was left with no advocates.

What happens when a patient has no advocates

The plan was to stabilize Geoffrey, wake him up, and get him strong enough to go back on the transplant list. We knew this wouldn’t be easy, since Geoffrey had struggled to wake up from sedation in the past.

During the waking process, Geoffrey experienced panic attacks and delirium, a known but underdiagnosed syndrome common in stressful hospital settings. Tied to a heart and lung machine, these stressful episodes could be fatal, so his doctors had to be very careful.

They tried to wean Geoffrey off his sedatives, but then his oxygen saturation dropped and his respiratory rate increased, and they put him back to sleep. His doctors put Geoffrey on a new combination of sedatives and tried again a few days later. They went through several rounds of this; meanwhile, Geoffrey’s lungs were continuing to deteriorate and his kidneys were starting to give up.

We felt right away that the ICU team was approaching Geoffrey’s predicament with blinders on. They were so focused on balancing his sedatives that they did not consider how the environment he was in – the dearth of social support, the bright lights and noxious sounds, the unfamiliar faces – impacted his state of mind as he gained awareness. Geoffrey’s team did not consider that they might have more levers to push that could help them solve this puzzle.

After two weeks of attempts, Geoffrey finally woke up. But when he attained consciousness, we ran into a new set of challenges.

Geoffrey was still on a ventilator, so he could not talk. He was extremely weak; his motions were shaky and barely decipherable. He slipped in and out of consciousness. Overall, he couldn’t do much to communicate with anyone.

Someone had sent up generic letter boards, but they did not help. They require either fine motor control or the ability to vocalize, capabilities Geoffrey did not possess. Seeking answers, we reached out to the hospital’s speech pathology department and their interpreter services. We were hoping that between those two areas, someone knowledgeable would be able to visit Geoffrey and figure out a way to help him communicate. But rather, the speech pathology team sent up an iPad on a stand, something we could have set up on our own.

We also sought aid from a music therapist. Numerous studies over the last 20 years have demonstrated the power of music to improve mood and cognition, and the effects are seen today in hospital and school settings. To make this happen for Geoffrey, we put our cousins on the case. One had started a music therapy program at another hospital, so we knew he could explain exactly what we were looking for and why.

We learned that this hospital, one of the top in the country, did not employ a music therapist. Another hospital in their system did, but Geoffrey’s hospital could not bring her in. So, we ended up paying her out of our own pocket to visit between her shifts.

When the therapist played Geoffrey’s favorite songs on her guitar, he was more attentive than any other point during his stay. Her music elevated the mood in the room, bringing solace to Geoffrey’s visitors and medical team. Amid an ICU full of asynchronous beeps and dissonant tones, the harmonious chords the therapist strummed on her guitar cut through the noise and filled the space with something fresh and pleasurable. If only she was there when they were trying to wake him, we thought, perhaps the process would have gone more smoothly.

Hospitals need a new approach to intensive care

Getting Geoffrey the comprehensive care he needed while in the ICU was a constant battle. I believe we face such resistance because doctors do not consider how a patient’s environment contributes to their medical outcome in the ICU. Further, we faced organizational hurdles because hospital systems are too large and corporate to efficiently adopt new practices.

The challenges Geoffrey faced – the anxiety, delirium, and communication issues – have been addressed by forward-thinking scientists, doctors, and therapists at other institutions, but Geoffrey’s hospital simply didn’t have the infrastructure to efficiently implement such fresh ideas. Geoffrey’s doctors kept trying variations of a very narrow set of options while hesitating to seek non-pharmacological solutions that may be useful in helping them achieve their ultimate goal.

I do not think these challenges are unique to Geoffrey’s hospital. Hospital systems across the U.S. struggle to listen to patients and their advocates, while doctors often resist scientifically-proven approaches that disrupt their standard routine.

Hospital systems need an infrastructure that supports patients’ individual needs, considers the latest science, and provides patients with internal advocates that doctors will listen to. I don’t know if these solutions would have affected Geoffrey’s outcome, but if other patients are running low on options, tools like these could potentially support their treatment and save their life.

Ben Marcus, Ph.D. is a Director of Public Relations at CG Life, an integrated digital marketing and communications agency specializing in life science and healthcare. He holds a Ph.D. in neurobiology from the University of Chicago.

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