Severely Brain Injured Deserve More Research, Says Weill Cornell Physician-Ethicist

Improved Diagnosis and Potential Treatment Options Should End "Neglect Syndrome"

Apr 1, 2003

New York, NY

A physician-ethicist at NewYork-Presbyterian Hospital Weill Cornell Medical Center calls for enhanced research into severe brain injury in a paper in the April issue of Nature Reviews Neuroscience.

The article, "Constructing an Ethical Stereotaxy for Severe Brain Injury: Balancing Risks, Benefits and Access," is authored by Dr. Joseph J. Fins, Chief of the Division of Medical Ethics at Weill Cornell Medical College and Director of Medical Ethics at NewYork-Presbyterian Hospital/Weill Cornell Medical Center.

Dr. Fins considers how societal perceptions concerning the diagnosis and treatment of severe cognitive impairment have been influenced by the dual historical legacies of the "right to die" movement and psychosurgery. He argues that society has a difficult time envisioning treatment for the severely brain injured because these patients resemble those catastrophically injured patients, like Karen Ann Quinlan, for whom the right to die was first established. Furthermore, the interventions being suggested as potentially therapeutic are reminiscent of the legacy of psychosurgery. Together, these legacies have coalesced into a "neglect syndrome" for patients with severe brain injury.

"Current practices with regard to severe brain injury do a laudable job of managing acute injury, but generally neglect cognitive rehabilitation, long-term assessment, and research into the neurophysiological mechanisms of recovery," says Dr. Fins, who is also Associate Professor of Medicine and Public Health and Associate Professor of Medicine in Psychiatry at Weill Cornell.

Dr. Fins asserts, "It should be a priority to refine diagnosis in order to identify those patients and injury types that may be amenable to potential therapies – to distinguish utility from futility. In the face of an evolved understanding of brain injury, patients should be allowed access to potential advances in treatment and diagnosis."

Dr. Fins also argues for improved research and clinical trials in patients with severe brain injury, even though they may not be able themselves to provide consent. Current policies deny inclusion in most clinical trials if patients cannot provide their own consent. "The cruel paradox of this policy," observes Dr. Fins, "is that the inability to provide consent stems from the cognitive disability that would be the object of treatment, thus denying patients the very interventions that might promote their self-determination."

Dr. Fins notes, "Current opinion has suffered from an under appreciation of potential treatments and an overstatement of associated risks." And he asserts that this "therapeutic nihilism" stems from a failure to appropriately distinguish among different types of brain injury and the likelihood for meaningful palliation and/or recovery. "Practitioners have a fiduciary obligation to these patients who have been disenfranchised," he adds.

More than six million Americans live with permanent cognitive impairment, with as many as two-million new cases of traumatic brain injury (TBI) every year. TBI is the leading cause of long-term disability in children and young adults.

"Developing policies that are responsive to the needs of patients and families impacted by severe brain injury is an 'ethical imperative,' given coming advances in the neurosciences," concludes Dr. Fins.