|Genre||Novel (432 pp.)|
|Keywords||Adolescence, Aging, Body Self-Image, Children, Communication, Death and Dying, Depression, Disability, Disease and Health, Doctor-Patient Relationship, Empathy, Family Relationships, Father-Daughter Relationship, Father-Son Relationship, Grief, Heart Disease, Hospitalization, Human Worth, Illness and the Family, Loneliness, Love, Marital Discord, Medical Ethics, Medical Research, Memory, Mother-Daughter Relationship, Mother-Son Relationship, Mourning, Obsession, Pain, Parenthood, Science, Sexuality, Society, Suffering, Survival, Technology, Time, Women in Medicine|
Henry Moss is a medical geneticist specializing in Hickman syndrome, a fictitious disease resembling progeria. Children with Hickman syndrome experience premature aging and invariably die before the age of twenty. The physician meets Thomas Benhamouda, a teenager who genetically has Hickman syndrome but astonishingly has no physical manifestations of the disease. Dr. Moss identifies a protein that "corrects" Hickman syndrome in the blood of Thomas and proceeds to synthesize it.
Dr. Moss violates medical ethics by administering the experimental enzyme to his favorite Hickman patient, William Durbin, a dying 14-year-old boy. It is a last-ditch effort to save William's life even though the substance has not been tested for safety or efficacy in human beings. Dr. Moss also injects himself with the enzyme. He realizes the tremendous potential the drug has not only in curing Hickman syndrome but also in extending longevity in normal individuals. He is well aware of the great financial rewards he might reap from his discovery.
After a series of injections, William's deteriorating health stabilizes and even improves but he dies in his home. Dr. Moss has failed to save the doomed boy but in the process of breaking the rules and risking his career has learned how to understand and appreciate his own life as well as reconnect with his family.
Is there anything more tragic than the slow death of a child? If you had an opportunity to possibly prolong or maybe even save the life of a dying teenager by administering an untested drug, would you deliberately ignore research protocol and violate the rules of medical ethics? Can you care for a pediatric patient so deeply that you would risk his/her life as well as your own to cure them? Under what conditions is self-experimentation justified?
These are just a few of the tantalizing questions posed by Long for This World, a compassionate and challenging novel that explores the boundaries of medical ethics as well as the doctor-patient relationship. Mistakes are depicted as being unavoidable and the lives of the characters in this book are cluttered with them. How these individuals cope with their fear of uncertainty and respond to errors is ultimately what transforms them.
Every decision has multiple consequences--some foreseen, others never imagined. The characters in this novel eventually realize that their need to grow is matched only by their need to love. Long for This World affirms the strength of family, the resiliency of the human spirit, and the great affection we have for life--our own as well as others.
|Place Published||Boston & New York|
|Annotated by||Miksanek, Tony|
|Date of Entry||01/19/04|