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This is a part of podcast series from the Model Systems Knowledge Translation Center on Disorders of Consciousness. Dr. Joseph Giacino explains why integrated care across the ICU and rehabilitation settings is essential for improving outcomes for people with disorders of consciousness. 

I think the thing that's most frustrating to me having been in the field for 35 years is the fact that this nihilism, pessimism, if you will, continues to persist. And it's not just in the uneducated, the public who we don't expect to be educated about this, but also among providers. If you are operating out of the ICU and you never see or do follow up on patients who leave your ICU, potentially still unconscious, you don't know that one in five of those people can come prancing back to say hello to you in a year and tell you about the work they're doing. That's not placing blame. It's that we continue to be fairly siloed in the way we work — the acute care hospital, the rehabilitation hospital — unless they have made efforts to integrate.

Our system has done that. We have very good communication between the ICU acute care hospitals and our inpatient rehab hospital. That's what a TBI model system requires, by the way. That's essential because we can exchange information bilaterally. So I have a good understanding of what's happening in those first days. My colleagues in the ICU have a good understanding of what's happening weeks, months, years down the line so we can tell a more educated, longer story. But there's many places in the country that simply aren't built that way.  

You can ask the question of why do we have this continued information dearth? I think that that's partly driven by the fact that there's not a lot of funding support for research in this population. How much of that is driven by the pessimism that exists? Should we put our money in a different place where people have a much greater chance of getting back to work? Maybe? I don't know that answer. But I think it's much harder to get research funding for patients who have severe brain injury and disorders of consciousness than it is, for example, mild traumatic brain injury.

Our best approaches to dealing with this nihilism, pessimism is to engage the primary stakeholders, the people who have had severe brain injury and their families, as our partners.  

Visit https://msktc.org/tbi and get the answers you need from experts who conduct innovative and high-quality research, provide patient care, and work to improve the health and overall quality of life for people with traumatic brain injury. That’s https://msktc.org/tbi.