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When does medical treatment raise civil rights concerns? One Cornell professor believes that advances in TBI treatment could turn misdiagnosis of permanently unconscious patients into a prison sentence.
Is the treatment of traumatic brain injuries a question of medical research or patients’ rights? Cornell professor Joseph J. Fins says both.
Joseph J. Fins is the E. William Davis, Jr., M.D. Professor of Medical Ethics and Professor of Medicine, Chief Division of Medical Ethics Weill Cornell Medicine and Solomon Center Distinguished Scholar in Medicine, Bioethics and the law at Yale Law School, Cornell University. He recently authored an article republished by the Huffington Post entitled “Why advances in treating those with brain injuries require advances in respecting their rights.” He argues that advances in law and medical treatment are rendering the misdiagnosis of TBI patients unacceptable and a violation of their civil rights.
Fins has spent over 20 years speaking with the families of patients about the TBI treatment they receive in so-called “custodial care” facilities, including nursing homes. He says all too often, it is the insurance companies that decide what care a patient receives, not the doctors.
“Families struggle to get their loved ones needed rehabilitation. If they do get rehabilitation, it is often too short to make a difference. Indeed, if patients are too slow to demonstrate improvement, services can be cut off because of stringent “medical necessity” admission criteria, often from third-party insurers.”
He believes this cutoff makes no sense.
“[I]f we don’t know how long it takes the injured brain to heal, how do we know the pace is too slow?”
Fins points out that neuroscience is changing the way TBI treatment is done. With cutting edge rehabilitation, 21% of severely injured TBI patients are now able to achieve functional independence.
But too few TBI patients are getting access to that treatment, Fins says. According to one study, two in five TBI patients in nursing homes who are thought to be vegetative were actually conscious, experiencing their treatment, or lack thereof.
“For these patients there is a disconnect between thought and action. Patients demonstrate conscious responses on their scans but don’t show external or behavioral evidence of awareness on clinical examination.”
The consequence, Fins says, is more than misdiagnosis.
“Labeling someone as permanently unconscious becomes a label and a prison. These people are locked away from the rest of us because they are mistakenly thought to be unconscious when they are not.”
That mislabeling results in patients being ignored and estranged from family and community. This, Fins says, raises civil rights concerns.
“With new understanding and better neurotechnologies, we can help patients communicate and reengage with their world.
The long arc of justice demands nothing less for citizens with severe brain injury.”