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How These Neurologists and Neuroethicists Navigate the Difficult Ethical Questions

Article In Brief

Neurologists and neuroethicists discuss the different pathways to careers and involvement in ethical decisions involving neurology patients.

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Ethics is a critical component of all medical practice, but perhaps no other medical specialty deals with basic ethical issues more frequently than does neurology, because the brain and its function is so central to human identity. An individual could undergo a heart, lung, kidney, or liver transplant and still remain essentially the same person, but even if such a thing as a brain transplant were medically possible, it would alter the fundamental essence of who that person is. States of consciousness, ability to communicate and consent, issues of cognitive enhancement—all pose inherent ethical challenges to the clinician.

“The very nature of neurologic disease, in that it affects the brain, means that our patients are highly vulnerable,” said Justin A. Sattin, MD, associate professor of neurology at the University of Wisconsin and a former member of the AAN's Ethics, Law, and Humanities Committee. “Ethical concerns attach to their conditions, whether it's emergent decision-making in stroke, which is my area of subspecialty interest, or end-of-life-care, or disorders of consciousness such as minimally conscious and persistent vegetative states.”

While every neurologist confronts ethical questions in his or her clinical practice periodically—some more than others—some clinicians have elected to take a deeper dive into the specialty's ethical questions by doing work in the field of neuroethics. As Neurology Today found when we spoke with several leaders in the field, there is no single training or career path that leads to a professional focus on neuroethics.

Some clinicians who specialize in neurology and ethics have undergone advanced specialty training in the field, while others have found themselves drawn into roles on ethics committees at their institutions through “on-the-job” training. But they all typically share a passion for the intersection of medicine and the humanities—a passion that manifested itself early in their medical training.

Pathways to Neuroethics

Neuroethics pioneer Joseph J. Fins, MD, MACP, FRCP, the E. William Davis, Jr., M.D., Professor of Medical Ethics, professor of medicine, and chief of the division of medical ethics at Weill Cornell Medical College, is an internist and not a neurologist by training, although he has a secondary appointment in neurology. He majored in the humanities as an undergraduate, studying literature, history, and philosophy at Wesleyan University. During his fellowship in general internal medicine at The New York Hospital-Cornell Medical Center, he also served as a visiting associate at the Hastings Center, a bioethics research institute. In 2000, he was appointed Weill Cornell's inaugural chief of its division of medical ethics. He also teaches at Yale Law School.

A few years later, his interest in ethics intersected with neurology when two events aligned: He was editing an ethics rounds column for the Journal of Pain and Symptom Management when he received a submission about a patient in a coma in the ICU, which raised questions about whether the patient might perceive pain or experience depression.

Nicholas D. Schiff, MD, now the Jerold B. Katz Professor of Neurology and Neuroscience in the Feil Family Brain and Mind Research Institute at Weill Cornell, was studying disorders of consciousness, and Dr. Fins asked him to write a commentary for the journal. That conversation has led to a more than 20-year collaboration investigating disorders of consciousness and understanding the mechanisms of brain injury and resilience. Together, Drs. Fins and Schiff co-direct the Consortium for the Advanced Study of Brain Injury at Weill Cornell and Rockefeller University.

Neurointensivist Michael Rubin, MD, associate professor of neurology and neurotherapeutics at UT Southwestern Medical Center in Dallas and chair of the UT Southwestern Ethics Committee, followed a similar undergraduate path to Dr. Fins.

“As a college student studying the humanities, I knew I wanted to be an MD but always was looking for ways to incorporate my love of literature and philosophy into daily practice. Clinical ethics was that way for me to work on those problems,” he said. While completing his neurocritical care fellowship at Washington University School of Medicine in St. Louis, he also earned his master's degree in bioethics from Loyola University. He has since served on the AAN Ethics, Law, and Humanities Committee—a joint committee of the AAN, American Neurological Association, and Child Neurology Society—including the committee's Brain Death Working Group.

‘Traditional Autodidacts’

Dr. Rubin noted that most people who get involved in neuroethics, however, are “traditional autodidacts,” having entered the field after being asked to serve on a hospital ethics committee or reading ethics-focused articles in Neurology and other scientific journals. For example, renowned neuroethicist James L. Bernat, MD, FAAN, the Louis and Ruth Frank Professor of Neuroscience at Dartmouth Medical School, who directs the Program in Clinical Ethics at Dartmouth-Hitchcock and has authored seminal texts in the field, including Ethical Issues in Neurology, contributed to the development of the field before there was accessible graduate training in clinical ethics or neuroethics.

Dr. Sattin found his way into clinical neuroethics after participating for a number of years as a member of University of Wisconsin's institutional review board. “I've always had an interest in the more philosophical aspects of our field. The protection of human subjects has a major ethical domain, and that was my first entry into that world. But unlike some of my colleagues, I have not pursued formal fellowship training in bioethics.”

While Dr. Sattin does not serve on the hospital's ethics committee, he has been asked to serve as a consultant to the committee for certain cases, such as one involving a patient with multifocal brain infarcts and disordered consciousness, in which he provided expertise on the patient's likely outcome and rehabilitative needs.

Dr. Sattin estimated that, as a stroke neurologist, some ethical issues arise during the treatment of as many as one-third of his patients. “I estimate it to be so high because my patients are often quite ill, and a relatively high percentage of them lack decision-making capacity. Even someone who is aphasic has impaired decision-making ability, so it's truly a daily part of my practice when I'm on service.”

Ariane Lewis, MD, director of the division of neurocritical care at NYU Langone Health and a member of the AAN's Ethics, Law, and Humanities Committee who has led a course on ethical conundrums in neurology at the AAN Annual Meeting, is another of those “autodidacts” who has rapidly become a thought leader in neuroethics.

With Dr. Bernat, Dr. Lewis guest edited a 2018 edition of Seminars in Neurology focused on ethics. Like Drs. Fins and Rubin, who majored in the humanities, her undergraduate major was not in biology or chemistry, but rather in psychology. “I always liked thinking about decision-making, and the many questions in medicine that fit into the category of ethics,” she said.

Most hospital ethics committees are very welcoming to those with a genuine interest, said Dr. Rubin, who first began participating in ethics committee work as a medical student. “It's a great way for people to explore their interest and decide if ethics is something they want to explore in their career, similarly to how medical students rotate through other specialties.”

Virtually all hospitals now have some form of ethics committee, but not all operate exactly the same way. Dr. Fins chairs the ethics committee at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, which is composed of credentialed ethicists approved by the hospital's medical board, which takes calls 24/7.

“These cases are often brought to us by the clinical team based on a conflict or an uncertainty about goals of care. We help to cultivate the narrative, bring relevant ethical analysis to the case, and provide guidance in framing the kind of discussions that are important. We don't make decisions; we help make decision-making better.”

NYU Langone has two different committees that address ethical issues: the ethics committee, which leads discussion about cases but does not help to formulate a decision, and the Case Review Escalation Support Team (CREST), which takes consultative calls from any service in the hospital with regard to whether it is medically, ethically, and/or legally appropriate to perform certain procedures.

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“The very nature of neurologic disease, in that it affects the brain, means that our patients are highly vulnerable. Ethical concerns attach to their conditions, whether its emergent decision-making in stroke, which is my area of subspecialty interest, or end-of-life-care, or disorders of consciousness such as minimally conscious and persistent vegetative states.”—DR. JUSTIN A. SATTIN

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“We have to do something paradoxical and bimodal in neuroethics, which is preserving a patients right to die and at the same time affirming the right to care for those patients and families who desire care, while also giving people a better sense of which patients can and cannot be helped through the development of better biomarkers.”—DR. NICHOLAS D. SCHIFF

“For example, a consult could address the question of whether or not it's appropriate to do an exploratory laparotomy on a patient who has anoxic brain injury,” said Dr. Lewis, who serves on both teams. “CREST decision-making is binding in a particular case, while the ethics committee meets once a month to discuss major issues of clinical importance and is more didactically based rather than interacting directly with practice.”

Common Ethical Issues in Neurology

Issues of consciousness, brain activity, enduring neurologic impairment, and quality of life considerations are some of the most common triggers for a neuroethics consultation, said Dr. Fins, who noted that the evolution in the medical and scientific understanding of consciousness over the past two decades has led to major changes in how disorders of consciousness are categorized and characterized.

“Things are very different today from when I was a medical student learning about the vegetative state. We had little understanding about other brain states or disorders of consciousness that have emerged since,” said Dr. Fins, whose book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (Cambridge University Press, 2015) explores the clinical and ethical questions involved in caring for patients with severe brain injuries.

“Patients who might appear unconscious at the bedside may actually be conscious,” he said. “More than 40 percent of patients thought to be vegetative from traumatic brain injury in chronic care facilities when carefully assessed with the Coma Recovery Scale are minimally conscious, rather than vegetative. This has major implications for how we think about their prospects for recovery, their perception of pain, and their isolation.”

He noted that recent advances in the use of functional MRI and machine learning have also suggested that as many as 15 percent of individuals who look unresponsive in the neuro-ICU actually may be conscious and in a state that Dr. Schiff has termed “cognitive motor dissociation,” in which they cannot purposefully move but demonstrate brain activity on neuroimaging associated with volitional prompts.

“We have to do something paradoxical and bimodal in neuroethics, which is preserving a patient's right to die and at the same time affirming the right to care for those patients and families who desire care,” he argued, “while also giving people a better sense of which patients can and cannot be helped through the development of better biomarkers.”

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“As a college student studying the humanities, I knew I wanted to be an MD but always was looking for ways to incorporate my love of literature and philosophy into daily practice. Clinical ethics was that way for me to work on those problems.”—DR. MICHAEL RUBIN

“So much of this depends on our ability to take limited data that we have on individual patients and come up with an idea of what the future may hold for them, so that we can provide proper guidance to families,” said Dr. Rubin.

“They all have the same questions: If my loved one is to survive this, what is their life going to be like? Will they wake up, talk, be independent? Our ethical challenge as neurologists in these situations is to provide the most reliable prognosis we can, and to engage with families in way that helps elicit their values so that we can, in a shared decision-making process, figure out the best choices for that patient and family.”

Although these existential questions may seem daunting to address on a regular basis, Dr. Fins believes that pursuing medical ethics can be sustaining for the practicing neurologist. “Medical ethics is a marvelous way to bridge science and humanities in a meaningful way. For me, it's a good balance between the active and contemplative life and keeps me engaged and bringing ideas into the clinic,” he said.

“Even if neurologists don't become clinical ethicists, by gaining an awareness of ethics, they will have more tools to engage in ethical reasoning and think about choices. Having the vocabulary to translate one's reasoning into angst or concern will help build resilience, prevent burnout, and make them better neurologists.”

Link Up for More Information

• Lewis A, Bernat JL. Ethics in neurology https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0038-1673410. Semin Neurol 2018;38(5):495–496.