Deceased January 3, 2014
When John published his life story in 2007, he chose for the cover a picture of himself and a two year old, eye to eye, tongues stuck out at each other. It captured the joy John had working with youngsters and the fulfillment John felt knowing that if a youngster with severe epilepsy could be helped, John would make that happen. For those youngsters, John was the "go to" doctor, and families traveled long distances to see him. They stayed in touch afterwards; they were John's extended medical family. No wonder that the head of the Epilepsy Foundation said that "over and over ... families tell us ... that John saved their child's life."
When John died on January 3, lengthy newspaper obituaries and tributes by professional and patient organizations called him "internationally renowned." They focused on the alternate therapies for which John was known around the world, therapies which John, almost singlehandedly and against collegial disdain, resurrected from long-discarded medical literature and brought up to date. One was removing the diseased half of a child's brain, a procedure that medical wisdom feared would deprive the child of the functions performed by the removed hemisphere. But John and Ben Carson, John's surgeon partner, demonstrated that the remaining hemisphere would step up to take on new functions. Those hemispherectomy patients would come back to John and his Hopkins colleagues every two years. They picnicked and played and swam like other children. They were very special to John.
The other all-but-forgotten technique was the strictly regimented high-fat, low-carbohydrate ketogenic diet that in a simpler form had been largely discarded decades earlier because drug therapies were so much easier. The key was to deprive the brain of glucose and substitute fat as the source of energy. Even though it was medical wisdom that the diet was too difficult, unlikely to retain patients long enough and generally ineffective, John would have none of that, particularly since the doubters had nothing else to offer John's suffering patients. All of that changed in 1997 when movie maker Jim Abrahams (Airplane, Naked Gun), whose son Charlie had been freed of seizures and drugs by John and his diet, produced a made-for-TV movie about the diet with Meryl Streep. John and the Hopkins diet clinic were swamped and so were clinicians at many other hospitals who John had trained in anticipation of the rush. Today severely-affected young epilepsy patients around the world rely on the diet and the guidebook that John wrote with his daughter Jenny. It is now in its fifth edition. The diet also shows promise for other diseases including brain cancer, strokes and dementia. Again, John persisted against a medical consensus that saw no value in resurrecting so primitive, complicated and questionable a regimen as the drug-free ketogenic diet. As with his work on hemispherectomies, John was eager to challenge and disprove long-held, but rarely examined, understandings about malfunctioning young brains and courageous to stand largely alone. He was also stubborn about what he thought was right, very stubborn. It was that same stubbornness with which John doggedly resisted hospital and medical school directives that John believed put the convenience of the institution above the wellbeing of his patients.
Before Amherst, John spent four years at Deerfield. They were unhappy years; John never felt included by his classmates, possibly because he was very young for his grade or because his Long Island North Shore Jewish background didn't fit it. But they were years that grounded his education and years when he discovered biology which was taught by Helen Boyden, the headmaster's wife, whom John adored. (I remember driving to Deerfield one day with John. The highpoint was visiting with Mrs. Boyden. As soon as she heard John's voice, Mrs. Boyden let out her delight that he had come to see her. John hadn't announced who he was and she couldn't see him because she was blind, but she heard him and she knew.)
Frank Boyden, the legendary headmaster, placed John at Amherst--that's how it was done. Looking back in 2007, John said that Amherst was the "perfect" place for him. In freshman year he played last slot on the squash team and won the crucial match against Williams. And, of course, he played soccer all during his time at Amherst, first under Steve Rostas and, as starting center forward, under Eli Marsh. John may have been "clumsy but aggressive," as he put it, but he scored goals.
John roomed during the first year with Fred Werner. They were old friends from home. Then he lived with Paul Hyde and Bill Whitney, all of whom joined Phi Psi. John's academic focus continued to be biology. He studied with Oscar Schotte, the embryologist, and George Kidder, the biochemist. In sophomore year he decided to be a doctor.
John and Elaine were married when John was at medical school at Hopkins. After pediatric training there, John moved to Columbia as a fellow in pediatric neurology (still a new subspecialty), to Walter Reed for two years and then to Stanford to teach. In 1969, John returned to Hopkins as director of the pediatric neurology service and director of the Birth Defects Treatment Center. He remained at Hopkins for the rest of his career, adding other titles and responsibilities along the way, including the directorship of the Pediatric Epilepsy Center in 1973. Years later, the center was renamed for John. All the while, Elaine had her own Hopkins career in which she rose to be vice president of corporate communications in charge of public relations and marketing for the medical system.
Much of John's work early on at the Birth Defects Treatment Center involved newborns with spina bifida, the incomplete closing of the spinal cord which may foretell both physical and cognitive shortfalls. Each instance forces a decision as to whether to operate. Sometimes the probability of a fulfilling life, even with surgery, is so unlikely that intervention may not be kind. John counseled many spina bifida families and in 1972 he began a complementary career writing prolifically about ethical decision making.
For a year beginning in 1983, John was "trailed" by Kevin McDonnell, a medical ethicist at St. Mary's College in Indiana. By the end of the year they completed an article about terminating care of newborn infants. That, in turn, led to a more ambitious work, a collection of cases in which the reader must make an ethically difficult medical decision that branches to new information requiring another ethically difficult decision, and so on. Tough Decisions was published by Oxford University Press in 1987. A second edition was published in 2002 and remains in print. The joint work of the classically-trained Catholic academic and the frontline Jewish medical practitioner ("one of the best relationships of my ethical career," John said) argued for an open, sympathetic, tolerant and transparent process, based on the very best medical information, in which all interested parties have an opportunity to be heard and in which it is understood that there are rarely right or wrong answers.
Although John was instrumental in the formation of Hopkins's research-focused bioethics institute in the 1990s, it troubled him that Hopkins did not train its house staff in medical ethics. From the late 1970s until the mid-1990s he chaired a series of medical school efforts to start training programs and recruit faculty but none succeeded. Finally, in 2004, John and Elaine gave money to allow a younger pediatrician, trained elsewhere in bioethics, to devote half time to teaching medical ethics. Soon after, another donor made a similar gift for the surgery department and a new era began. "Few Hopkins physicians," said the head of the Hopkins Health System, "have had a more profound effect than John Freeman on ... how we address the often difficult ethical issues surrounding those potentially heartbreaking cases."
John's written productivity was astounding. By the time of his autobiography in 2007, John had written or co-written 189 journal articles (and was working on three more), 49 chapters in edited works and six books including Tough Decisions, the guide to the ketogenic diet and a classic work for parents with epileptic children. I am including in a footnote a lengthy tribute to John from the Child Neurology Society newsletter which describes the substance of John's writings. The occasion was John's receipt of the 2004 Hower Award from the Society.)*
John is survived by Elaine and three children: Jenny, with whom John wrote the bible of the ketogenic diet; Andy, who is a Baltimore-based lawyer; and Josh, who graduated from Amherst in 1991 and is now senior advisor at the American Association for the Advancement of Science.
Seth Dubin '54
*HOWER AWARD, written by Robert Rust
JOHN FREEMAN, M.D.
1950-1954 (A.M. cum laude)
Johns Hopkins University School of Medicine 1954-1958 (M.D.)
Johns Hopkins University School of Medicine 1958-1961 (Pediatrics)
Columbia Presbyterian Medical Center 1961-1964 (Neurology/Child Neurology)
Walter Reed Army Institute of Research 1964-1966
John Mark Freeman was born in Brooklyn, New York, and educated at Deerfield Academy and Amherst College prior to studying medicine and completing a residency in pediatrics at Johns Hopkins. His decision to become a child neurologist was based on the particular influence of David Clark. Dr. Freeman’s interactions with Arnold Gold, Sidney Carter, John Menkes, and Horace Hodes awakened the interest in research that has so strongly marked his career development. Dr. Freeman was awarded Columbia’s Lucy Moses prize for research in neurology.
After two years of research at Walter Reed and then three years on the faculty at Stanford, he returned to Johns Hopkins as director of the child neurology service and of the birth defects treatment center. During the 21 years that he spent in
these, he rose to the rank of professor and in 1991 was named the Lederer Professor of Pediatric Epilepsy. His particular concentration in epilepsy was enriched by interactions with Samuel Livingston and his interest in neonatal neurology by long-term collaborative interaction with Karin Nelson.
Since his first papers on raniosynostosis in 1962, Dr. Freeman has published more than 180 hundred original papers, 49 chapters, and a considerable number of additional full-length communications. Nearly one-quarter of his papers are primarily concerned with developmental abnormalities or pre- and perinatal influences that affect nervous system function including anatomical abnormalities of skull, brain, and spine. These papers concern etiology, management, and outcome of such conditions. He has insisted on placing consideration of treatments within a long-term perspective, weighing what might be shortsighted, what conclusions exceed the current state of knowledge. In these studies as well as in the entire corpus of his work, he has placed considerable emphasis on both the ethics of clinical investigation and treatment decisions. He has considered with similar sensitivity and practicality ethical issues concerning treatment of the severely ill newborn, difficult questions of right to die and treatment decisions that may alter manner of death, and issues of sterilization of women with epilepsy. His challenging book, Tough Decisions: A Casebook in Medical Ethics, is of interest to every practitioner of our complex field of endeavor.
Dr. Freeman has, throughout his long career, shown particular concern for the dignity of the individual patient and a consistent commitment to the importance of rendering the life of each individual patient as independent and fulfilling—as close to “normal” as possible. Among a number of examples has been the attention he has shown to improving treatment of fecal incontinence and other management problems in patients with myelomeningocele. His numerous insights into the problems associated with this medically and psychologically complex congenital abnormality have been assembled into his valuable book, Practical Management of Myelomeningocele. Dr. Freeman has considered from a practical and constructive point of view the vexing questions of etiologies of cerebral palsies and their relationship to birth events, as well as the related questions of medical costs, public policy, and law. He has been a major collaborator with Karin Nelson and others on various aspects of the NINCD-sponsored research of the National Collaborative Perinatal Project. He has contributed not only the improved definition of prenatal and perinatal factors that injure developing brain, but also febrile seizures, epilepsy, developmental and neuromuscular disorders of children. He has participated in the effort to refine the definition of birth asphyxia.
Fully half of Dr. Freeman’s publications primarily concern the subject for which he is best known: epilepsy. These include well-known studies on neonatal seizures, febrile seizures, a wide variety of childhood epilepsies with particular concern for intractable forms and management with a wide variety of medications, including epilepsy surgery. He played a well-known role in almost single handedly reviving utilization of the ketogenic diet as a viable medical approach to management of epilepsy. In addition to original investigations, he has published two important books on the ketogenic diet.
He turned a fresh and critical eye on definition and management of status epilepticus in children. He has devoted attention to the ways in which imaging and EEG studies may be used or abused in individuals with epilepsy. With the epilepsies, as with all the other diseases upon which he became expert, he concerned himself with psychomotor, psychological and psychiatric aspects of these conditions, the proper utilization of tests, and the dangers posed for persons with epilepsy by swimming and other activities. He has studied many additional aspects of the epilepsies, including the effects of variables ranging from medications to inner city life on epilepsy, school adaptations that might improve outcome, the management of epilepsy during pregnancy, and the discontinuation of anti-seizure medications. He has closely investigated the exceedingly important questions of patient perceptions of treatment and outcome, often unassayed end-points of therapeutic efficacy. The considerable emphasis that he has placed on education of patients and family caused him to write his well-known book, Seizures and Epilepsy in Children: A Guide for Parents, which received a National Book Award.
His studies of the issues related to epilepsy have shown not only a breadth of interest and concern; they have also shown a characteristic unwillingness to accept even “well established management principles” without freshly and critically examining their basis. In honor of his outstanding contributions to many aspects of the epilepsies, he has received many awards, the most prestigious of which include the J. Kiffin Penry Award for Epilepsy Care, the William G. Lennox Award of the American Epilepsy Society, and the Lifetime Achievement Award of the Epilepsy Foundation of America.
The remainder of the enormous body of Dr. Freeman’s publications are wide-ranging. Included are his early highly influential studies, together with Allen Aron, on the natural history and emotional correlates of Sydenham chorea, prefiguring the current interest in PANDAS. An important theme in many avenues of Dr. Freeman’s work is the psychological and psychiatric aspects of diseases and their management. Also included is his well-known paper with Arnold Gold on the depigmented nevi of tuberous sclerosis and seven critically important papers on SSPE and its relationship to measles virus. Eight excellent papers considered metabolic illnesses such as urea cycle disorders and homocystinuria, including his early recognition of symptomatic autism as a clinical feature in some instances of metabolic disease. Other papers range over a widespread intellectual territory including degenerative neurological illnesses, brain trauma, hemolytic-uremic syndrome, brain death criteria, whistle-blowing on physician incompetence, informed consent, HIV, end-of life management, and such additional topics as have engaged the active mind of this iconoclastic physician-scientist.
The various ethical emphases and concerns for patient dignity and success in life have caused Dr. Freeman to expend considerable energy as an outspoken patient advocate, particularly as regards epilepsy, birth defects, and other handicapping conditions. He has exerted considerable effort with regard to provision of services for handicapped, epileptic, and institutionalized persons and in the evaluation and improvement of their educational opportunities at all levels including vocational and collegiate. He has played an important role in reviewing and improving approaches to the “insurability” of individuals with neurologic disorders.
His passionate advocacy for the individual with neurological disease has proven inspirational to generations of residents at Johns Hopkins. He generously volunteered time and resources for the wide range of causes that he regards as worthwhile. He has received numerous awards in honor of his meritorious services on behalf of individuals of all ages with neurologic disorders. These have included the Maryland Health Care Professional of the Year, the JCPenney Golden Rule Award and various other awards for leadership and commitment in local schools, community, and state.
Dr. Freeman is particularly well known for his unique and highly effective teaching style. Those who have benefitted from his approach express particular gratitude for the degree to which he was able to awaken critical thinking and wariness with regard to received wisdom. He has constantly asked those he trains to join him in asking how things are known and whether they are true, generating in this process valuable questions that research projects can be designed to answer. A number of devoted trainees have spent their ensuing and highly successful careers merely trying to answer the myriad questions posed by this skeptical mentor. He has also taught those who have had the privilege to come into contact with him the importance of observation of children, employing his famous technique of the “three cent neurological exam.” Dr. Freeman received the Johns Hopkins Frank Ford Teaching Award in Neurology in 1983.
His wealth of knowledge and insight have been imparted widely in professional meetings, courses, visiting lecturerships and honorary fellowships. Among the most notable of a very long list are those at the Royal Society of Medicine, London, the Montreal Neurologic Institute, Guy’s Hospital, the Peruvian Pediatric Society, the John Stobo Pritchard Lectureship, the McKeith Lectureship, and the Neuropediatric Society of Vienna.
His service has included participation in many local, national and international pediatric and neurological associations and their committees. Notably, he has served on the executive committees of the CNS, Child Neurology Section of the AAP (of which he was at one time chair), PCN, and ICNA. He has served on the ethics committee of the ANA, as president of PCN, and as vice president and honorary lifetime director of the Epilepsy Foundation of America. He has served on the professional advisory boards of the Spina Bifida Association and the Sturge-Weber Foundation of America. His numerous responsible positions and committee service at Johns Hopkins have included service as founder and first chair of the Johns Hopkins Hospital Ethics Committee and co-directorship of an undergraduate course in bioethics.
Dr. Freeman has sustained an inimitable career wherein he has played the role of gadfly, critic, and skeptic, the asker of well-formulated questions. Such a role does not always garner universal praise, although it has enlisted a considerable cadre of individuals devoted to his method and his messages. He has generated controversies. He has compiled a remarkable record of contributions to clinical child neurology. He has fulfilled the role of physician that Francis Weld Peabody long ago commended: “Disease in man is never exactly the same as disease in an experimental animal, for in man the disease at once affects and is affected by what we call the emotional life. Thus, the physician who attempts to take care of a patient while he neglects this factor is as unscientific as the investigator who neglects to control all the conditions that may affect his experiment. The good physician knows his patients through and through, and his knowledge is bought dearly. Time, sympathy, and understanding must be lavishly dispensed. ... One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”Dr. Freeman has not answered all of the questions he has asked; there are so many of them, that a large number of his energetic disciples, having each taken on a generous selection of his questions, are now carrying out prosperous and valuable careers in attempting to answer them.