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| Home > News & Publications > Publications Download > Lahey Clinic Medical Ethics Journal |
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Ethics and the Humanities: Long for This World
Henry Moss, a 51-year-old physician living in Seattle, is the world's foremost authority on Hickman syndrome, an extremely rare genetic disorder. Hickman syndrome is a fictional disease modeled after Hutchinson-Gilford syndrome (progeria). Children with progeria age approximately seven times faster than the normal rate and reach senility before puberty. By the time these patients are ten years old, they are dwarfish, wrinkled, balding and feeble. They are doomed to die of "old age" while still teenagers. Although Moss has identified the gene responsible for Hickman syndrome, there is no cure for the disease. He feels pity for all his patients afflicted by this form of premature senescence but becomes especially attached to William Durbin, an intelligent and sensitive boy. The physician showers him with as much affection as he devotes to his own son. Although Henry Moss is a good man and a good doctor, his sense of professional helplessness spills over into his personal life. Actually the entire Moss family is in a state of flux. Henry's wife, Ilse, is also a physician suffering from a midlife crisis. Their daughter, Sandra, is an outstanding high school student-athlete struggling with the transition from teenager to young adult. Fourteen-year-old Darren is unable to match the accomplishments of his successful sister and has many questions that no one can seem to answer. Darren, a boy full of life, forges a secret friendship with his father's favorite patient, William, a youngster very close to death. The lives of all these characters change dramatically when Moss meets Thomas Benhamouda, the 17-year-old brother of a patient with Hickman syndrome. Thomas has a perfect body despite the fact that the teenager genetically has Hickman syndrome. Moss recognizes the genetic anomaly that not only corrects the disease in Thomas but seemingly confers exceptional health as well. Moss isolates and then replicates a protein that he believes might not only retard and even reverse the progression of Hickman syndrome but also might possibly prolong life in normal individuals. But wait - everything has a price and even a serendipitous discovery carries a cost. If Moss is going to save the dying William, then the physician must act quickly and boldly. The synthesized enzyme appears safe based on limited testing in laboratory animals but Moss has no time to waste on lengthy research protocols. He self-experiments by injecting himself with the enzyme. After obtaining permission from William and his parents, Moss administers the experimental drug to the boy at doses and intervals that Moss can only guess at. He struggles with his decision to violate medical ethics: "It's the worst thing I could do as a doctor. Human experimentation without an experimental protocol." William understands that this treatment is risky but represents his only chance of survival. His medical condition briefly improves but one day his parents discover their son dead in his bedroom surrounded by empty vials of the enzyme. Long for This World poses many profound questions. When is it appropriate to break the rules? What are the causes of failure? How do we achieve balance in our lives? The solutions to many of the dilemmas presented in this tender and thought-provoking novel often invoke the depth of our compassion, the power of love, and our ability to adapt. The book offers a fascinating view of growth - physical, emotional, intellectual, spiritual, professional, familial and marital - by contrasting it with degeneration. Hickman syndrome functions as an apt metaphor for the rapid transformations that threaten and alter every aspect of modern life. Change is inevitable but Moss realizes that we can be instruments of change as well. "So we're doomed to deteriorate," he acknowledges early in the novel but later adds, "there were repair mechanisms too... so it wasn't all downhill." Multiple conflicts beyond the collision of regeneration and deterioration fuel this story. These additional antagonisms include chance versus fate, risk versus reward, faith versus hope, duty versus irresponsibility and discovery versus secrets. Mistakes of all kinds - genetic, professional and personal - figure prominently in the plot. The pursuit of ambition and the chase for rewards exact a high toll. Readers are cautioned about the attractiveness of evil and the lure of money. Apparently one can never have enough! Work changes us long before we are ever aware of the metamorphosis. Physicians are admonished that attachment to patients can wear doctors down and even waste them. Boundary issues are effectively presented. Being too close to patients sometimes skews medical judgment. Breaking bad news is frequently as hard on the doctor as it is for the patient. One of the great strengths of the book is its wonderfully constructed cast of characters. No other novel so poignantly captures not only the awkwardness of adolescence but also the miscues of middle age. Family means everything. Fittingly the Moss family is depicted as fragile yet cohesive, evolving but somehow still permanent. Patients, neighbors, colleagues and friends comprise an extended family where human affection counts for as much as human biology. As one teenager in the story astutely points out, we are after all unlikely byproducts of random events. The physicians and scientists in Long for This World are realists. We are unlikely to discover the secret of immortality. We cannot avoid death. Yet there is no escape from living either. How we spend each moment, how much we love, and how we value life are what matter most. Compassion ultimately trumps the laws of nature.
The opinions expressed in the journal, Lahey Clinic Medical Ethics, |
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