Geoffrey, author’s brother, 23 years old
My brother Jeffrey died of a lifelong debilitating disease called cystic fibrosis (CF). A disease that attacks the lungs and other internal organs, and it has kept him in the hospital more than I could have imagined. And the more he relied on this vast, corporate hospital system to keep himself healthy and happy, the more he knew that no matter how high-level or well-funded it was, this hospital was not flexible, nimble The idea of sex or progress. It needs to face a case like his.
CF is a rare genetic disorder that causes dry, sticky mucus to build up and block organs. It attacks the lungs first, causing difficulty breathing and chronic respiratory infections. The mucus also damages the pancreas, leading to an unpredictable and dangerous form of insulin-dependent diabetes. Each patient’s disease progression is different and requires care from a multidisciplinary team of doctors, nurses, and respiratory therapists.
In 2018, Jeffrey received a double lung transplant. It was a risky operation with little chance of long-term benefit, giving him the best chance of extending his life beyond his fragile 34. But just 18 months later, in May 2020, Jeffrey started coughing again, and he took himself to the hospital. His body was rejecting his new lung, and his doctors couldn’t figure out why.
This will be his last hospital stay.
Jeffrey’s regular team of doctors and nurses is like family to him. Even in his worst days, he won them over with his unwavering pragmatism, gregariousness, and rude sense of humor. A visit to his room gave them much-needed relief from the relentless stress of working with seriously ill patients. Plus, Jeffrey’s family and friends frequent it, making his room the hottest social spot on the floor.
But that routine was disrupted during Jeffrey’s deathbed. First, his case was handled by a team of healthcare professionals who were less familiar with his CF. Second, Jeffrey had to be sedated, which robbed him of his personality and voice. Finally, due to Covid-19 restrictions, the hospital does not allow any visitors to enter. Without his standard medical team, his family or himself able to speak on his behalf, Jeffrey has no advocates.
What Happens When Patients Have No Advocates
The plan was to stabilize Jeffrey, wake him up, and get him strong enough to get back on the transplant list. We know it won’t be easy because Jeffrey has struggled to wake up from sedatives in the past.
During waking, Jeffrey experienced panic attacks and delirium, a known but underdiagnosed syndrome commonly seen in stressful hospital environmentThese stressful events associated with the heart and lung machines can be fatal, so his doctor must be very careful.
They tried to get Jeffrey off the sedatives, but then his oxygen saturation dropped and his breathing rate increased, and they put him back to sleep. His doctor put Jeffrey on a new combination of sedatives and tried again a few days later. They went through several rounds of this; meanwhile, Jeffrey’s lungs continued to deteriorate and his kidneys began to fail.
We immediately felt that the ICU team was approaching Geoffrey’s plight, blindfolded. They were so preoccupied with balancing his sedatives that they failed to consider the circumstances in which he was in—lack of social support, bright lights and harmful sounds, unfamiliar faces—that affected his state of mind as he gained consciousness. Geoffrey’s team doesn’t think they might have more leverage to help them with this conundrum.
After two weeks of trying, Jeffrey finally woke up. But when he gained consciousness, we encountered a new set of challenges.
Jeffrey is still on a ventilator, so he can’t speak. He is very weak. His movements were shaky and almost unrecognizable. He went in and out of consciousness. In general, he was unable to communicate with anyone.
Someone sent a generic letter board, but they didn’t help. They require fine motor control or vocal abilities, abilities that Jeffrey does not possess. To find out, we contacted the hospital’s speech-language pathology department and its interpreting services. We hope that between the two fields, knowledgeable people will visit Jeffrey and find ways to help him communicate. Instead, the speech-language pathology team put an iPad on a stand that we could set up ourselves.
We also seek the help of a music therapist.Numerous studies over the past 20 years have demonstrated the effects of music on improving mood and cognition, and today’s effects are Hospital and school setting. To get Geoffrey to do that, we got our cousins involved in the case. One 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 the nation’s top hospital does not employ a music therapist. Another hospital in their system did it, but Jeffrey’s hospital couldn’t let her in. So, we ended up paying her out of pocket to visit her between shifts.
When the therapist played Jeffrey’s favorite songs on her guitar, he was more attentive than at any other time during his stay. Her music elevates the mood in the room and brings solace to Jeffrey’s visitors and medical team. In an ICU full of asynchronous beeps and dissonant tones, the harmonic chords that the therapist played on her guitar broke the noise and filled the space with something new and enjoyable. If she was there when they tried to wake him, we thought, maybe the process would have gone more smoothly.
Hospitals need a new approach to intensive care
Getting Jeffrey in the intensive care unit to get the comprehensive care he needs is an ongoing battle. I believe we will face such resistance because physicians do not consider how a patient’s environment affects their medical outcomes in the ICU. In addition, we faced organizational hurdles because the hospital system was too large and the company too large to effectively adopt new practices.
The challenges Jeffrey faced—anxiety, delirium, and communication problems—had been addressed by forward-thinking scientists, doctors, and therapists at other institutions, but Jeffrey’s hospital simply didn’t have the infrastructure to effectively implement these new ideas. Geoffrey’s doctors have been trying variants with a very narrow range of options, while hesitant to pursue non-drug solutions that might help them achieve their ultimate goal.
I don’t think these challenges are unique to Jeffrey’s Hospital. Hospital systems across the U.S. struggle to listen to patients and their advocates, and physicians often resist scientifically-validated methods that undermine their standard procedures.
Hospital systems need an infrastructure that supports the individual needs of patients, takes into account the latest science, and provides patients with internal advocates that physicians are willing to listen to. I don’t know if these solutions will affect Geoffrey’s results, but if other patients are left with insufficient options, such a tool may support their treatment and save their lives.
