Jeremy is a 14-year-old in dire need of a liver transplant, which in his case stands a good chance of success, but his parents are reluctant to give their consent; they are the ones who would bear the burden of the child’s long-term care, not the surgeon or hospital. The surgeon, not understanding the parents’ position, calls in a rabbi. How should one approach this difficult case? Is it the state’s place to force consent? How should we consider the parents’ quality of life? Should the Jewish adviser formally balance Halacha with the American legal code, or is the most productive approach a reconciliation of the stories told by the different sides, including Jeremy’s?
Esther and Samuel, both in their early 60s, have been married for 25 years; now Samuel’s mental condition is deteriorating. Esther has been taking care of her husband, and refuses to move him into a nursing home. But Esther herself is not in the best of health, and the couple’s money is running out. One daughter of theirs, who lives nearby, can’t bear to see her father in this state and is unwilling to share the burden with her mother. Another daughter, living abroad, is willing to give money to Esther for her father’s care, but only on the condition that he be moved to a nursing home. Is this an ethical offer? How should one understand the many obligations in this case — marital, filial and parental?
At “Addressing Quality of Life: A Challenge for Jewish Bioethics,” the first annual conference of the Academic Coalition for Jewish Bioethics held February 29 through March 1 in Philadelphia, these questions were not fully answered. Neither, however, were they considered at a safe academic distance. Rather, the participants, who came from geographically and ideologically far-flung communities both Jewish and professional, did their best to place difficult cases, commonplace at today’s medical centers and nursing homes, in the context of broad Jewish and ethical disputes — some centuries-old, others arising only out of the tangle of contemporary technology.
The coalition, comprising scholars from a number of rabbinical schools and bioethics centers, presented these and other case studies as opportunities to discuss further the topics addressed at the plenary sessions.
The first panel attempted to define quality of life, a concept that’s important to the American understanding of patient autonomy but fits uneasily within the Jewish medical tradition, which has been understood to promote the saving of life at any cost. Paul Root Wolpe, a senior fellow at the Center for Bioethics at the University of Pennsylvania, pointed out that baseline measurements of quality of life differ from person to person, and that caregivers’ estimates rarely overlap with those of patients themselves. Rabbi Noam Zohar, a senior research fellow at the Shalom Hartman Institute in Jerusalem and the director of the graduate program in bioethics at Bar-Ilan University, engaged in a wide-ranging examination of traditional Jewish law as it might be applied to the issue. For example, it is a well-known principle that the saving of a life takes precedence over observance of the Sabbath, but the definition of “saving a life” is quite nuanced; for example, medical treatment to prevent the loss of function of an organ that can be classified as a quality-of-life concern is not permitted according to a strict understanding of Halacha.
Perhaps the broadest and most passionate approach was taken by Laurie Zoloth, director of ethics at the Center for Genetic Medicine of Northwestern University. “Quality of life is not the key question,” she said, contrasting the autonomous self of American secular practice — which defends itself against interlopers — with the “generally positive” Jewish attitude toward medical practitioners. Rather, it is the “scope of our duty to care for one another.” The patient is part of a community in the Jewish tradition, not an isolated agent, and thus must participate in care. Rather than attempting to define quality of life, Zoloth asked the question: How do we understand such participation when the patient can no longer express his or her wishes? In this case, said Zoloth, benevolence is the central philosophical principle, not autonomy. The Jew is the shomer, the guardian of a life, not the owner; as such, a different set of options must be considered. Zoloth also issued a passionate call for justice in the distribution of resources, especially for the sake of the disabled. “It cannot be that the only request we hear,” she said, “is the one to die.”
The second session confronted the current trend of elective medicine. The number of procedures performed by cosmetic surgeons has increased manifold over