By Nonie Arora
Can we be certain whether a patient is minimally conscious or in a persistent vegetative state?
What kinds of rights do minimally conscious patients have?
How should minimally conscious patients be treated?
Scientists, ethicists, lawyers and physicians asked these questions at the Finding Consciousness workshop at Duke in January 2013.
Recently, neuroscientists have devised methods to detect consciousness in patients with severe brain injury who may not appear to be aware of themselves and others. But as the science develops so do new ethical dilemmas.
Patients with severe brain injury are often written off, despite growing scientific evidence of potential improvement, said Joseph Fins from Cornell University. Fins gave the annual Nancy Weaver Emerson Lecture sponsored by the Trent Center for Bioethics, Humanities & History of Medicine as part of the workshop, and he focused on the application of neuroethics to the minimally conscious state.
Fins believes that family members of patients are often forced to make decisions about withholding or withdrawing care without complete, understandable information. They are compelled to consider organ donation, even prematurely. In his work, Fins interviews family members of brain injury patients. In one conversation, a mother of a patient described an interaction with a neurologist who called the patient “basically an organ donor now” and said, “He doesn’t have the reflexes of a frog.”
Then, the neurologist urged the mother to consider organ donation — all within 72 hours of the injury. Fins called for patients and family members to be treated with more sensitivity and respect.
The vegetative state has been seen as medical futility, and the paradigm was “once you’re vegetative, you’re done,” Fins said. However, physicians in the field have begun to see families and patients who have looked vegetative, but then suddenly showed some level of response to stimulus.
While some patients become permanently vegetative, others can become minimally conscious, Fins said, referencing a study where about 40 percent of patients who were diagnosed as vegetative were actually minimally conscious.
“This is unconscionable, but that’s where we are,” he said, adding that much of the disparity could come from disinterest, neglect and marginalization of these patients. People would not accept this level of misdiagnosis in cancer or diabetes care, he said.
It is our obligation to give voice to minimally conscious patients as a basic civil right, Fins said, especially as better methods of identifying these patients and stimulating recovery are likely to come in the future.