Uniform determination of Death Act.
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Death is a transition laden with meaning. Rather than overrule a common lifeworld understanding of death with scientific criteria, a process of involvement and interpretation might help health-care practitioners understand what death means for the family and the patient and possibly allow all to come to some shared agreement on appropriate treatment. The UDDA was offered as a way to standardize the practice of diagnosing death based on brain-related criteria. While these criteria may be essential to recognizing death in certain circumstances, they should not be used as the final word on withdrawal of life-support in the absence of or in place of an understanding with the patient's family.
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The recent abandonment of the only active US protocol for harvesting organs from anencephalic "donors" indicates both the practical and the ethical problems inherent in such an effort. Various data suggest that surprisingly few such organs would actually end up benefiting other children. Attempts to revise either the Uniform Anatomical Gift Act or the Uniform Determination of Death Act to allow organ removal from spontaneously breathing anencephalic infants face major ethical objections. Even if this posed no ethical problem in theory, the ultimate harm to society would not be offset by the good of the few surviving recipients of these organs. Furthermore, providing anencephalic infants with intensive care would tend to preserve the brain stem as effectively as the other organs, predictably rendering the occurrence of brain death unlikely. Thus, despite the great need for newborn organs, anencephalic infants are not as attractive a source as some had hoped.
Proposals to use organs from anencephalic infants to meet the growing need for transplantable organs are well-meaning but misguided. It would be unwise to amend the Uniform Determination of Death Act to classify anencephalics as "dead." They are in the same situation as other patients (such as the permanently comatose). Likewise, amending the Anatomical Gift Act to permit organs to be removed from anencephalics would be unjust, would set a bad precedent, and would likely reduce overall success in this field.
Death cannot be viewed properly as either an event or a configuration. Indeed, multiple parts of the body can continue to live long after the disintegration of its central organization is recorded. Instead of collapsing at a moment in time, technological mechanisms are capable of sustaining the major bodily processes indefinitely--all designed to allow for the harvesting of needed organs for transplantation. State legislative efforts have been undertaken in America to define those specific circumstances when death occurs legally. Although always allowed to exercise reasonable discretion in their decision making, attending physicians will nonetheless be aided by these laws that only limit their legal liability but assure for the patient that his final choices will be honored consistent with basic principles of self-determination. The Law Reform Commission of Canada recommended in 1987 that criminal liability be rejected for the offenses of helping, advising, or inciting a person to commit suicide. This is an exceedingly wise and humane position to follow. Instead of being held captive to words such as "rational suicide" or "euthanasia", what is needed is an acceptance of more contemporary watchwords such as autonomy and self-determination. When at all possible, final choices about death should be made by the patient's family and their medical advisers--and not be subjected to judicial scrutiny.
OBJECTIVES: To inform physicians of the critical shortage of neonatal heart donors and to provide arguments for and against selecting brain-absent anencephalics as heart donors for brain-normal infants who are dying of hypoplastic left heart syndrome. DATA SOURCES: International scientific journals of medicine, genetics, epidemiology, bioethics, and public health; adjudicated U.S. civil court cases; and state regulations and statutes. STUDY SELECTION: Worldwide experience with anencephalics as homologous organ donors. DATA EXTRACTION: Demographic and epidemiologic data on anencephalic births and natural histories; U.S. civil, district, and appellate court case decisions directing or prohibiting organ donation; state determination-of-death acts; state uniform-anatomical-gift acts. DATA SYNTHESIS: Organization of all data into either moral challenges or legal challenges to anencephalic organ donation. CONCLUSIONS: Statutory laws pose a greater challenge to anencephalic organ donation than moral laws. Case law reviews eliminate substituted judgment rulings in directing anencephalic organ donation. A redefinition of brain death applying only to human beings born without a brain would make more donor hearts available to brain-normal infants dying of hypoplastic left heart syndrome.
We will set the stage for our analysis by reviewing selected medical aspects of anencephaly, outlining the history of the use of anencephalics as organ sources, and summarising the results of an important study recently completed at Loma Linda University. We will then employ some of the arguments and justifications underlying the Uniform Determination of Death Act (UDDA) to claim that anencephaly is morally equivalent to brain death, i.e., the reasons for considering brain-dead patients to be dead also apply to anencephalics. Finally, we will critique our proposal and discuss its implications.