Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.
Last week, you voted on who defines death of a child.
Should Jared and Susanna be permitted to take this child, who is legally dead, home with them on "life support?"
Yes: 77%
No: 23%
Until the second half of the 20th century, most legal systems defined "death" as the cessation of heartbeat, the cessation of breathing, or both -- hence the iconic image of the 19th-century physician holding up a mirror to the mouth of a cadaver to check for vapor from the patient's breath. These standards proved problematic with the development of artificial methods of respiration, such as ventilators, and later with the invention of ventricular assist devices (VADs) to help pump blood. Such machines allow a patient with no brain function or prognosis for recovery to remain "alive" (under the cardio-pulmonary definition of death) for an extended period of time while hooked up to medical equipment.
Starting in 1968 with the report from the Ad Hoc Committee of the Harvard Medical School, the concept of "brain death" or "whole brain death" gained social and legal traction in the U.S. In 1981, a presidential commission initially appointed by Jimmy Carter issued Defining Death: A Report on the Medical, Legal and Ethical Issues in the Determination of Death, which urged states to adopt the "whole brain death" standard. A majority of states have done so. (An alternative approach, that asks whether a patient retains "higher" brain functions, such as the ability to think, has been largely rejected.)
While most Americans now accept brain death, some cultural and religious minorities reject this new criterion. In several high-profile cases -- including those of Mordechai Dov Brody (1996-2008), an Orthodox Jewish boy, and Jesse Koochin (1998-2004), the son of religious Christians -- parents have fought hospitals in court for the right to opt out of the brain-death standard in favor of the cardiopulmonary standards embraced by their own traditions. The family of Jahi McMath, a 13-year-old girl who was declared brain-dead after a surgical procedure in California in 2013 had their daughter relocated to New Jersey, one of two states that allow families to opt out of the brain-death standard on religious grounds. Her family removed her from life support in 2018, and a death certificate was issued.
The core question in these cases is whether a uniform measure of death is necessary, or whether flexibility should exist for those with sincerely held dissenting beliefs. Yet the matter is more complex: few families will be able to afford to pay to keep a brain-dead child on a ventilator indefinitely, so usually the public -- through Medicaid or private insurance -- will end up absorbing the costs. Death also has significant implications for the living: keeping a brain-dead person "alive" could prevent his heirs from inheriting in a timely manner, might continue alimony or social security indefinitely, and has implications for the ability of a surviving spouse to remarry without a divorce. Finally, one cannot ignore the fine line between divergent values and those that are truly macabre or gruesome. If a family wanted to take home the corpse of a loved one -- a body dead by both cardiopulmonary and brain-death standards -- with the plan of letting the cadaver decompose in their living room (let us say in a sealed, transparent bag to prevent the spread of disease), many people would object on the grounds that such an approach simply violates contemporary norms of decency. What is not clear is why the situation is different when that cadaver is hooked up to a machine.
Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.
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