An alumnus and former trustee, Joseph J. Fins, M.D., M.A.C.P. ’82 returned to the University on Thursday, Nov. 5 to discuss his most recent book, “Rights Come to Mind: Brain Injury, Ethic, and the Struggle for Consciousness.” Several students and faculty members, both friends and previous professors of Fins, were in attendance.
Fins is currently Chief of the Division of Medical Ethics at Weill Cornell Medical College and Director of Ethics at Weill Cornell Medical Center, as well as an elected member of the Institute of Medicine of the National Academy of Sciences and a Fellow of the American Academy of Arts and Sciences.
University Professor of English Anne Greene introduced and welcomed Fins to the Russell House talk.
“Joseph Fins is an example of the best of a COL [College of Letters] education,” Greene said. “He reads more widely than anyone I know.”
As Fins took the podium to began his talk, he spoke about his time at the University and how beneficial it was to him.
“There’s no better place than Wesleyan,” Fins began. “I wouldn’t be here if it weren’t for Wesleyan. All you… students just revel in it. You are getting the best education here. You may not know that now but when you get to my age you’ll look back say, ‘Those were the best days.’”
His presentation, titled, “Giving Voice to Consciousness: Neuroscience, Neuroethics and the Law” touched on his latest book and the ways in which Fins approached his story. The book covers societal obligations to patients with severe injuries, including vegetative states, within the historical legacy of the civil and disability rights movement. Fins explained that Greene helped him write the text.
“Everything worth doing has its challenge, and this book certainly had its challenges,” Fins said. “…I would call [Greene] up and she would give me ‘book therapy.’”
To introduce the audience to the topic of the novel, he explained the subject of his book: Maggie Worthen, who had just completed her senior year at Smith College when she found out that she had a severe brain injury that extended up to her thalamus.
“I would like to introduce you to Maggie,” Fins said. “Maggie is the subject of the book. I share her story with the vision from her mother, Nancy, and… the subjects of this IRB-approved study.”
He explained that to write the book, he interviewed over 50 families and recorded over 110 hours of tape. The book highlights how neuroscience and neurotechnology can help individuals.
“It is aspirational as well,” Fins said. “Why it morally matters is to advance and sustain this work. How can we help people like Maggie get outside of her head to tell us that she is there or that she might be in pain? How do we tell the people who love her that she knows who they are and yes, that she loves them, too?”
Fins described those in vegetative state for the audience, stating that these are patients who are not conscious or self-aware with all behaviors stemming from autonomic activities in the brain stem. However, he shocked the audience by revealing that patients are often incorrectly categorized as being in a vegetative state; he provided a statistic that 41 percent of people who are classified as being in a vegetative state are actually in a minimally conscious state. As a result, society tends to neglect these patients and healthcare options decrease.
“The vegetative state was at the center of the right to die,” Fins said. “It became concerning when a group of new patients appeared vegetative but did not follow the typical trajectory…. They appeared vegetative but were not. They got better, regained consciousness, and sometimes [this can happen] after years and decades of what [was] thought to be a vegetative state.”
Fins further touched on the ethical constraints and challenges regarding this topic.
“What I tried to argue was that basically we have conflated a respect for [in]formed consent with respect for personhood,” he said. “It’s one thing to ask someone for their consent if you do something over their objection…. That is disrespectful. It’s quite another thing to require consent from someone who can’t provide it when the object of the intervention is to restore their ability to consent.”
He connected this idea to his story of Maggie and those who are in a minimally conscious state.
“These people are segregated in chronic care, misdiagnosed, and most fundamentally, denied [a] voice,” Fins said. “This makes this a civil rights issues of our generation. If you’re conscious, it needs to be recognized and if you’re minimally conscious, we need to [help you recover].”
Fins dedicated his lecture to Maggie’s memory. He also added that if it weren’t for his COL education and his training in science at the University, he would not have been prepared to work in such an interdisciplinary field.
Greene expressed her excitement to have Fins at the University.
“His book is so remarkable and it’s completely accessible to a general reader,” she said. “My students were here [and they] seemed to know a remarkable amount about neuroscience, something they had never explained in writing…. I talk to them about one thing [in class], but it turns out they have this whole other area I didn’t know about. [Fins] brings out everything from everybody.”
Professor of Classical Studies Andrew Szegedy-Maszak, a friend of Fins’, attended the talk. He and Fins worked together on the presidential search committee for the University.
“It just seems that he exemplifies the best of what we hope for a liberal education,” he said. “He was a COL major and now has gone on to medical school and has become one of the major medical ethicists in the world…. I think it’s great to have him here because, among other things, it show you that what you major in means something, but it doesn’t determine your life.”
Fins expressed his delight at being back at his alma mater.
“I always feel that when I come onto High Street, it’s like I’m coming home,” he said. “And its nice being able to come back after so many years and see so many friends and be so warmly welcomed by my former colleagues and professors and board mates. It’s a really special place, and it’s really great to be here.”
Students in the audience also expressed their enjoyment of the talk. Molly Bogin ’18, a prospective neuroscience major, explained that she was able to connect the lecture to her neuroscience course at the University.
“I was able to understand the concepts that we’ve been learning about in neuro in a new way,” Bogin said. “It was really cool, although also very sad, to see the way these anatomical terms that we’ve ‘learned the function of’ actually function, or lose function in the case of many of the people in his research, in a real human body.”
Szegedy-Maszak agreed with how exceptional Fins’ work is.
“He has reached a level of achievement that is so impressive,” he said. “You realize he is an extraordinary individual. He is so talented and so accomplished. And the two don’t always go together.”
Fins explained that if he had one piece of advice for students, it would be to take a chance.
“I hope they have the courage to do something as crazy as I did and take a chance with their careers and not be conventional,” Fins said. “I didn’t know that I was going to do what I did but Wesleyan prepared me for that contingency. And so I think people should have the courage to pursue what really makes sense to them and is important to them and to society. We’ve been given the privilege of this education, and I think we have a responsibility that goes with it.”