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Neurology Today:
doi: 10.1097/01.NT.0000363220.11473.03
Article

James L. Bernat, MD: On Mediating the Ethical Quandaries of Neurology

ELLIS, FAY

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From his earliest days as a neurologist, James L. Bernat, MD, has been intrigued by the tough-to-answer questions in neurology. The professor of neurology and medicine at Dartmouth Medical School recalled that as a neurology resident at Dartmouth-Hitchcock Medical Center 35 years ago, he harbored doubts about whether the patients he was trained to declare “brain dead” by neurologic criteria were really dead. He sought answers and clarity then from others at Dartmouth, including a bioethicist Charles Culver, MD, PhD, and philosopher Bernard Gert, PhD, with whom he has continued to collaborate over the years.

“My collaboration with Prof. Gert has been my most fruitful scholarly collaboration,” Dr. Bernat said. “He continues to teach me every time we work together.”

Dr. Bernat has since written more than 200 papers, edited chapters and authored several books, including the updated (3rd) edition of Ethical Issues in Neurology (Lippincott Williams & Wilkins, 2008), on a wide range of ethics issues — from brain death, physician-assisted suicide, medical futility, and end-of-life care, to informed consent and the ethical and legal duties of a neurologist.

He has been the director of the program in clinical ethics at Dartmouth-Hitchcock Medical Center since 1995, and is a member of the AAN Ethics, Law & Humanities Committee, which he chaired from 1993–2003.

He has also served on numerous national and international task forces, including the Vatican Pontifical Academy for Life task force “Brain Death” (1997–1998) and The Vatican Pontifical Academy of Sciences task force “The Signs of Death” (2006–2007). He currently chairs the Health Resources and Services Administration Division of Transplantation task force on determining circulatory death in organ donors.

For this issue, Dr. Bernat discussed by e-mail his practice, his evolving views on neuroethics, and the challenges for the field.

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TELL US ABOUT YOUR NEUROLOGY PRACTICE

I practice general adult neurology at an academic medical center with an emphasis on second opinions on difficult diagnostic cases. On the inpatient side, I have an interest in patients with coma and other disorders of consciousness, and am often asked to consult on these cases. My longstanding interest in brain death extends to patients with vegetative state or minimally conscious state. The ethical issues are paramount in determining the correct diagnosis and prognosis for these patients and especially in determining their appropriate level of treatment. Trying to determine their awareness at the bedside is both challenging and fascinating. Functional neuroimaging techniques such as fMRI and PET provide a unique window to study human consciousness that will become even more useful clinically in the future.

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TELL US ABOUT YOUR BIOETHICS WORK AT DARTMOUTH

I chair our hospital bioethics committee and, with several colleagues, perform clinical ethics consultations upon request to help physicians and nurses resolve ethical dilemmas in inpatient care. Ethics consultations in a busy academic medical center offer a panorama of the most difficult issues physicians face.

In the 1990s, we consulted mostly on cases of uncertain prognosis in which the physicians and nurses were struggling to determine the appropriate level of treatment. Today, we spend more time mediating disputes between physicians who feel that aggressive treatment of a terminally ill patient is futile and family members who insist on further treatment.

We also consult on neonates with profound brain damage for whom their parents must make the decision whether to treat or allow them to die. We consult on psychiatry patients who refuse life-sustaining therapy and help determine if their refusal is rational and should be respected or if it is a product of irrational thinking and should be overruled.

Figure. DR. JAMES L....
Figure. DR. JAMES L....
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Recently, we have had consultations from our assisted reproduction program over complex ethical issues arising from in vitro fertilization and surrogate parenthood. We also collaborate with our institutional review board to consider the ethical issues in research involving human subjects. The principal lesson I have learned over the years of performing these consultations is humility.

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CAN YOU TELL US MORE ABOUT YOUR CONSULTING WORK FOR THE VATICAN?

My consulting with the two Vatican pontifical council task forces offered a fascinating glimpse of the interaction of science, medicine, philosophy, and theology. For the past several decades, the Vatican has debated whether they should take a formal position on the question of whether a person diagnosed “brain dead” is dead in the view of the Roman Catholic Church. Formerly, they held that it was a medical matter and not one of religious doctrine. But because brain death is based on a biophilosophical concept of death, they decided that they must study the question and take a position.

In the mid 1990s, I was invited to debate this issue in the Vatican with a small group of others interested in this question in a series of three meetings over a nine-month period. It was a debate format where proponents (championed by me) and opponents (championed by Dr. Alan Shewmon) brought forward their best arguments. In 2000, Pope John Paul II pronounced that declaring brain death as human death was consistent with Roman Catholic teachings. After Pope John Paul II died, another meeting was ordered by Pope Benedict XVI in 2006 to further define the signs of death in such cases, to which I was invited to present a paper along with other neurologists including Drs, Jerome Posner, Allan Ropper, Robert Daroff, Eelco Wijdicks, José Masdeu, and Marcus Raichle.

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WHAT ETHICAL ISSUES WILL NEUROLOGISTS FACE IN THE FUTURE?

For the past two decades, the AAN Ethics, Law & Humanities Committee has offered practice advisories and guidelines on a wide variety of clinical-ethical problems facing neurologists, including statements on the vegetative state, palliative care, consent issues in administering IV tPA in stroke cases, management of end-stage dementia, refusal of life-sustaining treatment in cases of severe paralyisis, and many others.

The emerging area in ethics facing neurologists in the future comprises the field called “neuroethics” — the study of the ethical problems arising from neuroscience research. Neuroethics includes issues such as physical and cognitive enhancement therapy, how to handle incidentally discovered abnormalities on “normal” volunteers in neuroimaging studies, privacy and confidentiality issues arising from new functional neuroimaging technologies, neuroprosthetics, neurotransplantation, and neurophilosophical issues of personal identity and free will. This field now has a journal, a dedicated society, annual meetings, and several textbooks.

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WHY ARE PHYSICAL AND COGNITIVE ENHANCEMENT THERAPIES OF CONCERN?

The enhancement question is complicated. Neurologists are being asked by patients and parents of patients to prescribe medications or other therapies on healthy patients to enhance their cognitive or physical performance to help them excel in schoolwork, athletics, and the workplace. These “patients” are healthy but wish to have cognitive and physical performance that is better than healthy. Is this a proper medical activity for neurologists to practice? If so, what are the boundaries? The AAN Ethics, Law & Humanities Committee is currently preparing a practice advisory addressing this growing question.

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WHY SHOULD NOTIFYING ‘NORMAL VOLUNTEERS’ ABOUT IMAGING ABNORMALITIES BE A PROBLEM?

The issue of notifying “normal” volunteers in a study that a probable abnormality has been detected on their brain fMRI also is a complicated question. Consider the reasons for the quandary: (1) Most often, those reading the scans are psychologists and not physicians, and if physicians, are not radiologists; (2) Only a few MRI sequences are performed, which is inadequate for a clinical scan; (3) There often is no policy governing how and what the volunteer should be told; (4) There may be no arrangement for referring the volunteer for clinical consultation or for paying for medical treatment. There are now published guidelines governing this problem that require investigators to have a policy prospectively addressing each of these elements as part of the research consent process.

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WHAT HAS CHANGED IN THIS FIELD SINCE YOU FIRST BECAME INTERESTED IN IT?

The field of medical ethics has grown tremendously over the past 30 years. Most colleges and medical schools now offer courses in it and the ACGME [Accreditation Council for Graduate Medical Education] and the Neurology Residency Review Committee now require neurology residencies to provide education in ethics for neurology residents. Most practicing physicians now have a better understanding of the fundamentals of medical ethics than in the past.

The AAN continues to offer courses in ethical topics at its annual meetings. The AAN now offers an annual ethics colloquium in which members are invited to raise ethical issues that they feel the AAN Ethics, Law & Humanities Committee should study further. The colloquium was initiated this year by the former Committee chairman Dr. Michael Williams and is being continued next year under the leadership of the present committee chairman Dr. Daniel Larriviere,.

An ongoing challenge for all of us is to determine the best method to teach ethics to trainees. Cynics say it cannot be taught — you either have it or you don't. But clearly, there are methods of ethical analysis and proven strategies to resolve dilemmas that can be taught. I have always been an advocate of the power of teaching trainees by example. When students and residents observe their teachers and mentors practicing ethical behaviors, they learn by emulation.

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ASK THE NEUROETHICIST: NEW COLUMN IN NEUROLOGY TODAY TO LAUNCH OCT. 15

Beginning with the Oct. 15 issue of Neurology Today, Dr. James L. Bernat will byline a new column called Ask the Neuroethicist. The column will address ethical questions that neurologists face in everyday practice.

In the first column, look for Dr. Bernat's answers to these timely questions: Should neurologists charge for discussions of end-of-life care with the relatives of chronically-ill patients, and how do you mediate disputes about that care among family members?

We invite our readers to submit questions and suggest topics. You can e-mail your questions and suggestions for topics for Ask the Neuroethicist to neurotoday@LWWNY.com.

©2009 American Academy of Neurology

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