1. Young, Robert C. MD

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In the 1970s while at the NIH, this reviewer was asked to provide expert commentary on the prognosis of a young pregnant mother with extensive osteogenic sarcoma pulmonary metastases. My comments played only a minor part in a complex and wrenching legal debate about patient's rights, survival of the unborn infant, and the interests and desires of the husband and other close relatives. The medical realities seemed lost in the cacophony of claims and counter claims and the effort of the court to make legal sense out of personal tragedy and chaos. Subsequent high-profile examples like those of Terri Schiavo and Karen Ann Quinlan have not altered my view.

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ROBERT C. YOUNG, MD.... - Click to enlarge in new windowROBERT C. YOUNG, MD. REVIEWED BY ROBERT C. YOUNG, MD Chairman,

As a result, when one of the most accomplished and honored of British novelists, Ian McEwan, tackled the subject in The Children Act, it promised to provide some clarity on a very complex and compelling controversy. The story is simple-the consequences are not.


Fiona Maye, a 59-year-old, childless British High Court judge in the Family Division presides over an emergency request from a hospital to transfuse a 17-year-old leukemic patient who is refusing transfusions for religious reasons. The boy and his family are devout Jehovah's Witnesses and have clear and considered reasons for their refusal. Artistic license has apparently allowed McEwan to ignore the possibility of hematopoietic stimulants as an alternative to transfusions.


The title of the book, The Children Act, refers to the legal structure which defines the court's responsibilities. In it the Act concludes "the child's welfare shall be the court's paramount consideration." Justice Maye is recognized by her peers as perceptive, compassionate, conscientious, and skilled at bringing "reasonableness to hopeless situations." While she seems organized and efficient on the surface, she ruminates over previous cases where she had been required to sort out other personal tragedies.


One such is her well-publicized decision to separate conjoined twins. As McEwan writes, "She was the one who had dispatched the child from the world, argued him out of existence in thirty-four elegant pages."


These troubling cases, along with her disintegrating marriage, have left Justice Maye adrift. Nonetheless, she approaches the transfusion dilemma with her typical focused and crisp style. Quoting her mentor Lord Justice Ward (parenthetically one of McEwan's actual advisors), Justice Maye opines: "The Court is a court of law, not of morals. Our task has been to find and our duty is to apply, the relevant principles of law to the situation before us-a situation which is unique."


While she listens and respects all the arguments from opposing lawyers, her decision never seems to be in doubt. She believes that the welfare of the child must dominate her verdict. She concludes that the boy, his parents, and the elders of the church have made a decision that is hostile to the boy's welfare. She overrules their wishes and finds for the hospital.


With proper therapy and transfusions, the leukemia remits and the boy recovers. In the more thinly developed part of the book, Justice Maye receives two letters from the boy highlighting his break from the church and his family and his growing attachment to the Justice. In her typically reasoned way, she concludes that it would be best not to respond. This finally results in a face-to-face encounter where she rejects his pleas, gives him an over-exuberant kiss, and sends him on his way.


In the third and final letter from the boy, he encloses a poem-"The Ballad of Adam Henry"-in which he concludes with the line about hearing the voice of Satan and "having to pay the fee." Again she does not respond and believes "she would fade in his thoughts, become a minor figure in the progress of his sentimental education." Her decision proves fatal as the boy relapses and, now at 18 years of age, refuses therapy, transfusions, and dies.


In the final pages of the book, Justice Maye comes to grip with the consequences of her decisions: "Adam came looking for her and she offered nothing in religion's place, no protection, even though the Act was clear, her paramount consideration was his welfare. She thought her responsibilities ended at the courtroom walls."


There is something prescient about McEwan's description of the Justice's conclusions that relate to my own experience with such cases. The court acts in accordance with its own interpretation of the law. The decision, no matter how well-reasoned, falls short of optimal if it fails to consider the moral implications of the decision and its long-term consequences.


In that sense, courts of law seem to be a less than optimal venue for the equitable resolution of these complex personal tragedies. My view is that they are best left to candid and intimate conversations between the principals and their physicians.


In this reviewer's view, The Children Act is not one of McEwan's best works. Although he does delve into the morass of these tangled tragedies, the story is too thinly developed and the author does not explore the spiritual center of the conflict in any detail. In that sense, this book falls short of some of his most sumptuous works like Atonement, On Chesil Beach, or the nightmarish day of a neurosurgeon in Saturday.


Still, McEwan is a masterful writer and The Children Act is packed with examples of his stylish prose. Here is one describing the hospital: "They entered a glassed-in atrium the height of the entire building. Mature native trees, rather starved, pushed hopefully upward from the concourse. The long straight run up the escalator brought them to a mezzanine where a florist and gift shop were ranged around a fountain. New Age music, airy and unmodulating merged into the sound of the tinkling water. The model was of course, the modern airport."


We have all seen such hospitals but likely never described them as opulently as Mr. McEwan.


In spite of its flaws, this short book by one of our finest current writers, on a topic of direct relevance to oncologists, is a worthwhile read. It will leave you with respect for the challenges facing judges as they try to bring clarity and reason to the murky and unreasonable.




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