Hope rises for patients with severe brain injury
During World War II, my dad was a combat medic. He never talked about the war, but a few years ago at my insistence, he showed me his medals. Although he was awarded a Bronze Star, he was most proud of his Combat Medic Badge, a small silver stretcher that symbolized the canvas litters medics used to rescue the wounded. The badge symbolized the ethos of never leaving anyone behind. Everyone who served deserved a chance at survival and recovery.
That same ethos prevailed in the care of sheriff ’s Deputy Nick Tullier, a patient at TIRR Memorial Herman profiled in today’s Chronicle. While on duty, Tullier was shot in the head. After four months, his prognosis seemed grim. His doctors in Louisiana thought he was in a vegetative state, but his family saw signs of responsiveness. Because his story gained national attention, his family managed to transfer him to TIRR for rehabilitation.
His story is heartbreaking and yet uplifting — from the brink of death to real, but imperfect recovery. Tullier’s journey is something that modern medicine should celebrate. But as a physician who has worked with patients and families touched by severe brain injury, I mourn for all those like Tullier who could be helped but will never see the inside of a place like TIRR.
Despite a growing scientific appreciation that injured brains need time to heal, the number of patients who gain access to specialized neuro-rehabilitation has decreased over the past decade. Most end up trapped in nursing homes, where they are often misdiagnosed. Upward of 40 percent of patients thought to be vegetative after traumatic brain injury are actually minimally conscious. It is a staggering error with dire consequence that would be unacceptable anywhere else in medicine.
Misdiagnosed as vegetative, minimally conscious individuals are deprived of human companionship. More frightening, they are denied pain medication because they are mistakenly thought unable to feel pain. Their vulnerability is heightened by their inability to cry out for relief.
Their neglect becomes more consequential as neuro-rehabilitation becomes more effective. A misdiagnosis becomes a missed opportunity for emerging treatments that might return patients to their homes and families. A recent study showed that 21 percent of the most severely injured who received therapeutic rehabilitation recovered enough function to live independently.
These advances are good news. But this is progress from which most patients will not benefit because we know neither their numbers nor whereabouts once they leave a hospital setting. The lack of such basic public health data indicates how neglected these patients are. Uncounted, they simply don’t count.
This no makes sense. Why doesn’t everyone get the care available at specialized centers like Houston’s TIRR? Why isn’t this the norm?
It is a complicated question that is as much a cultural problem as a medical challenge.
Since the the landmark Quinlan decision in 1976, the futility of the vegetative state has been linked to the evolution of the right to die. Deciding the fate of Karen Ann Quinlan, a New Jersey Supreme Court judge wrote that there was no “compelling
interest of the state” to continue her life-sustaining therapy because she would only “vegetate a few more measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life.”
Since then, futility of the vegetative state was generalized to other patients who were severely injured but who have a more favorable prognosis, like those in a state of minimal consciousness. This has led to the neglect of a whole class of patients who might be helped.
It is human nature to fear grievous injury and disability, so we avoid the subject. This psychological defense allows us to look away from those who represent our worst fears.
The brain-injured are out of sight and out of mind. There is furthermore a tendency to dichotomize outcomes after severe injury: people either recover or die. In reality, most end up somewhere in between.
The goal should be to meet patients where they are, not where we imagine them to be.
This is the humane thing to do, but it’s a hard sell as the nation grapples with healthcare reform and ballooning deficits. Why pay for the most severely injured when others lack primary care?
It’s a fair question, but one that neglects deeper responsibilities to
those who are dependent upon the good will of others. When thinking about access to care for patients with severe brain injury, we must understand this is more than an insurance issue. It is a fundamental question of civil and disability rights. What is at stake is the life and well-being of conscious individuals who have been marginalized because of society’s disinterest and neglect. They deserve better.
To meet the needs of those who are unserved will require an expanded infrastructure of specialized rehabilitation programs. Centers like TIRR can play a leadership role in modeling reforms in how we treat these patients, just as designated cancer centers like M.D. Anderson and Memorial Sloan Kettering did decades ago. Those efforts raised the bar for cancer care nationwide.
Brain injury rehabilitation can follow this proven path to good effect. When this promise is realized, the care received at TIRR will no longer be the exception. It will become the norm.
Fins, author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, teaches at Weill Cornell Medical College and Yale Law School. He co-directs the Consortium for the Advanced Study of Brain Injury at Weill Cornell and Rockefeller University and is a full affiliate member of Houston Methodist Research Institute.