Anencephaly is congenital disability in which the major parts of the brain, scalp, and skull of a fetus do not wholly form as fetus is developing in the womb. The defect results in minimal development of the brain. Specifically an anencephalic newborn will lack all or part of the cerebrum, the area of the brain used for thinking, seeing, hearing, touch, and movement. Additionally, anencephaly’s physical manifestation is marked by the absence of bone on the back of the head and missing bone structure on the front and sides of the head.
As is spina bifida and encephaloceles, anencephaly is the result of a neural tube defect. During pregnancy, the human brain and spine both begin as a flat plate of cells. These then roll into a tube, called the neural tube. If all or part of the neural tube fails to close, leaving an opening, it is known as an open neural tube defect. In the case of anencephaly, the neural tube fails to close at the base of the skull. Consequently, the developing brain and spinal cord are exposed to the amniotic fluid which surrounds the fetus in the womb. This exposure causes the nervous system tissue to degenerate, resulting in the missing cerebrum and skull bones.
Anencephaly is one of the most common types of neural tube defect, affecting about one in one-thousand pregnancies. However, most of these pregnancies end in miscarriage. Thus the prevalence of this condition in newborns is much lower than other similar defects, an estimated one in ten-thousand infants in the United States is born with anencephaly. More female newborns have anencephaly than males, possibly attributed to the higher rate of spontaneous abortions or stillbirths among male fetuses.
The diagnosis of anencephaly may be made either at birth; however, it is more commonly made during the pregnancy. Anencephaly results in abnormal blood or serum screening test during prenatal testing or may be observed during an ultrasound. Additionally, prenatal diagnoses have been made via amniocentesis. If not detected in utero, a diagnosis can be made immediately after birth by physical exam, as the baby's head often appears flattened due to the abnormal brain development and missing bones of the skull
There is no medical treatment for anencephaly. Due to the lack of development of the brain, approximately seventy-five percent of infants are stillborn, and the remaining twenty-five percent of babies die within a few hours, days, or weeks after delivery. Any treatment that is provided to the newborn is purely supportive, meaning all efforts and treatments are done so with the intention to keep the baby as comfortable as possible. Although such efforts are usually minimal, as these infants are unconscious, cannot feel, and are usually blind and deaf.
Organ Donation Basics: How Does the Process Work?
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For thousands of recipients each year an organ donation offers a renewed future. This additional chance at life is provided by donors, both living and deceased, who give their organs and tissues to others. A living donor can donate organs such as the kidneys, part of a liver and a lung. There are about as many living individual donors every year as there are deceased; however, most organ and tissue donations occur after the donor has died. There are an estimated one hundred and twenty-five million registered organ donors, with only about three in one thousand able to donation upon death. An individual must die under specific circumstances in order to be a viable deceased donor, most typically a donor’s death is the result of illness or accident, such as severe head trauma or stroke. The manner in which a person dies determines what organs and tissues can be donated.
Donation after death can occur after either cardiac death or brain death. Donation after Cardiac Death [DCD] is a viable option after a donor has suffered “devastating and irreversible brain injury and may be near death, but does not meet formal brain death criteria.” After the donor’s family decided to withdraw support, the patient is removed from a ventilator and death is determined. Cardiac death is declared after an individual no longer has a pulse, blood pressure, cardiac sounds, or spontaneous respiration. The care team then waits five minutes to ensure there is no auto-resuscitation. After five minutes of ceased circulation, a hospital physician declares death, and the transplant team immediately begins organ recovery. This type of donation does not cause or hasten death. From the time of the Quinlan decision in 1976, a generally accepted ethical norm is that withdrawal of life support does not cause the patient’s death, rather, withdrawing life support allows the patient to die — it is the disease or injury that causes the patient’s death, not the physician.
The majority of deceased donor organ donations take place following a declaration of brain death. According to the American Academy of Neurology, brain death is the irreversible
loss of clinical function of the brain, including the brain stem. Brain death is the legal definition of death. Brain death is not a coma or persistent vegetative state and is determined in the hospital by one or more physicians not associated with a transplantation team. To determine brain death for purposes of donation, the patient undergoes numerous tests to confirm an “irreversible loss of brain function and support the pronouncement of brain death.” In most cases, the brain-dead patient has suffered a brain injury resulting from trauma, oxygen deprivation or stroke. The person’s heart is kept beating by mechanical ventilation, which enables blood and oxygen to flow to their organs and preserve their viability.
How are These Two Related?
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As of April 2018, there are more than 114,000 candidates for transplant on the U.S. national waiting list. However, only 34,770 transplants were performed in 2017 – a record high for the fifth consecutive year. Although this is a positive trend there is still a tremendous shortage; twenty people die each day waiting for a transplant. The shortage of organs available for infants is even more severe than that which exists for children and adults. Only 135 pediatric organ donors in 2016 were infants under the age of twelve months. The size of the body and of the organ are taken into account when matching donors to recipients and as a result infant children most often receive donations from other young people. However the number of viable infant donors is limited.
As a result of their size and short prognosis, anencephalic infants are often pointed to as possible donors to help aid in this shortage and provide the gift of life to other infant children. Anencephalic newborns may not be a complete solution, but they can be a worthwhile option when none others exist.
So why hasn’t that happened? Under the current medical and legal standards, the use of anencephalic infants as organ donors is not a straightforward task. Anencephalic newborns will not usually satisfy the standard brain death criteria for organ donation because of adequate brainstem function that maintains spontaneous respiration and heart rate after birth. Additionally, by the time brain death or somatic death has been declared, the organs will have undergone ischemic damage, making them unsuitable for transplantation. This occurs because cardiovascular and respiratory functions deteriorate gradually in anencephalic infants before death. Moreover, the use of life support does not improve the chance of successful organ donation from anencephalic infants. While organ function may be maintained with life support, as brainstem function deteriorates, multisystem organ failure develops before sudden death and thus the organs are not viable for donation.
Wait, should this happen? That is a question that has been raised as often as the initial question itself. The use of anencephalic newborns as organ sources poses significant ethical concerns. Among them are the more significant questions pertaining to the newborn itself, such as are anencephalic newborns human beings, or do they have interests? As well as those that extend to the parents and their rights to determine their child’s future and use.
II. Analysis Under Ethical Theories
Most prominent ethical theories fall under either a consequentialist or deontological theory. Consequentialism determines the ethical nature of an act based on “what its consequences are.” This line of theories are based two principles – an act is right or wrong depending only on the results of that act and, the more good consequences an act produces, the better or righter that act is. Utilitarianism is the most prominent of the consequentialist theories. Conversely, deontological ethical theories emphasize the relationship between duty and the morality of human actions. Theories derived from this line of thinking implement rules to distinguish right from wrong. In deontological ethics, an action is considered morally right because of some characteristic of the action itself, not because the product of the action is good. Immanuel Kant was the most influential of the deontological philosophers.
Utilitarianism
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Utilitarianism is a subset of consequentialist ethics, in which the right act is the action that maximizes the total well‐being. If an act tends to maximize the aggregate happiness or “utility” of society as a whole, it the action that should be taken, it does not, it should not. Utilitarianism is one of the dominant moral theories, with a significant influence in bioethical debates. According to utilitarianism, what matters most is the promotion of well‐being, not merely the treatment or prevention of disease.
University of Oxford’s Julian Savulescu and David Birks worked to identify key concepts of utilitarianism within the discipline of bioethics. Among them was the idea of assessing “how well or badly that person's life is going” when determining a person's well‐being to measure the aggregate happiness. Additionally, they identified a significant moral reason to select the best child, the one with the lowest chance of disease and the best prospects for the best life, when confronted with a decision to choose.
Determinizing the ethical permissibility of anencephalic newborns as organ donors would be a relatively simple decision for a strict utilitarian. One anencephalic newborn could save up to eight lives through organ donation. Moreover, an organ donor has the ability to enhance more than a hundred lives via tissue donation. Therefore an anencephalic newborn would be maximizing the aggregate happiness – and utility – of society in their action of becoming an organ donor for other young infants.
When addressing the questions posed by Savulescu and Birks this decision becomes more explicit. Anencephalic newborns have no measurable quality of life; they have no consciousness, cannot feel, and are usually blind and deaf. Therefore it can be said with minimal controversy that when assessing “how well” their life is going it pales in comparison to that of recipient’s life. Moreover, the team out of Oxford identified a moral command to select the child with the lowest chance of disease and the best prospects for the life. An anencephalic newborn will pass away within a few hours, days, or weeks after delivery. Whereas, with a life-saving transplant, an infant organ recipient has the potential for a full lifespan. In accordance to this utilitarian moral command the decision to use an anencephalic newborn as an organ donor would be ethically permissible, and even advisable.
Kantianism
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Born from the thinking of the most influential deontological philosopher, Immanuel Kant, Kantianism measures moral action primary by whether it arises from “goodwill.” Kant’s goodwill refers to the individual’s character or moral goodness. The influential deontological philosopher’s framework is evident throughout the bioethics disciple, primarily in its emphasis on the inherent worth, dignity, and autonomy of individuals. Kant’s Categorical Imperative calls for individuals to “act in such a way that you treat humanity…never merely as a means to an end, but always at the same time as an end.” Regarding medicine, it commands respect for patient autonomy and dignity.
At first impression, it would appear as though Kant would whole-heartedly denounce the practice of allowing anencephalic newborns to be organ donors. In a strict sense, the process is very much using a newborn baby as a means to an end. The donation is using the body and life of one newborn as the means to continue sustaining another life. Under this interpretation of Kantianism, the practice would most certainly be ethically impermissible. However, Kant’s other concepts of autonomy and dignity prove to be a more complicated analysis.
Does autonomy depend on personhood? Does personhood rely on consciousness? Examining the practice of anencephalic newborns as organ donors under the framework of Kantian autonomy invokes the discussion of determining the personhood of these newborns. The medical definition of consciousness is “the state of being aware or perceiving physical facts or mental concepts; a state of general wakefulness and responsiveness to the environment; a functioning sensorium.” By this definition, anencephalic infants are not, nor will ever be conscious. Can someone be classified as a human being if they never experience consciousness, and does this entitle them to human rights? Dr. Robert J. Levine, Yale professor of medical ethics, reflected that answer might be a negative. He opines that these infants will never have thoughts, feelings, sensations, desires or emotions. They do not have any social interaction, memory, pain, or even suffering, thus us it hard to make a definitive determination if these beings have interests and by extension an investment in being kept alive.
However, biologically these infants are very much alive, and that carries its own set of rights and fundamentally the rational interest in staying alive. Harvesting their organs would seriously thwart that interest. The biggest problem with the ethical decision to donate the organs of live anencephalic infants is that they have not, and will never, reach a time that they can shed light on the decision to donate organs or not. If someone lives to the point of creating a living will or sharing with others his or her choice to donate, there is no problem with harvesting the organs, however, that is not an option present in the case at bar. The discussion of anencephalic newborn autonomy may raise more questions than it presents answers. Accordingly, anencephalic newborn organ donation under this strain of Kantianism appears to be ethically dubious.
Shannon A. Bowen out of the University of South Carolina reflected on the role of Kant’s thinking in modern medicine, noting that Kantianism would call for the mutually beneficial solution. Under this framework, anencephalic newborn organ donation would appear to be ethically permissible. Many grieving families of anencephalic newborns searching for meaning for their child’s life would seek comfort in their service to others. Moreover, families searching in hope for a way to continue their own child’s life would reap the benefits of that service.
Religiously-Based Ethics
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Religion grounds many individuals’ political, social and medical decisions. It follows that it too would mold many ethical theories. Religiously-based ethics rely on values that emerge from the guidance of scripture, respected teachers and disciples, an offical central church authority, or highly personalized spiritual perceptions, insights and experiences or, as often seen some combination of them. Religious approaches to bioethics vary considerably; however most major religions support organ and tissue donation.
Typically, religions view organ and tissue donation as acts of charity and goodwill. Accordingly, the process of organ donation itself in cases of anencephalic newborn donation would be ethically permissible. However, most religious groups take issue with this process, as it implicitly ends the life of the anencephalic newborn prior to its natural death.
Religious opposition to anencephalic newborn donation was solidified with the widespread highly critical reaction to a 1995 opinion from the AMA making the statement regarding the ethical permissibility of anencephalic organ donation in some situations. During the year following the opinion's release, the AMA received protests from individual parents and physicians, as well as advocacy groups such the American Association of Pro-Life Pediatricians, the Christian Medical and Dental Society, and some medical specialty societies. Under the framework of religious ethics, anencephalic newborn organ donation involves the prematurely ending the life of a child and is unequivocally ethically impermissible.
III. Legal Theories
Case Law: In Re TACP
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Minimal case law exists on the topic of anencephalic newborn organ donation. This is likely a result of the lengthy timeline of a litigated case that far exceeds the lifespan an anencephalic newborn. Accordingly, by the time a case successfully reaches the judgment stage, the argument would be moot as the infant in question would no longer be living or candidate for organ donation. However, there is a case out of the Florida Supreme Court that has become the leading case law authority on the issue, In re T.A.C.P.
The court In re T.A.C.P, addressed the question, “is an anencephalic newborn considered ‘dead’ for purposes of organ donation solely by reason of its congenital deformity?”
The case was brought by the parents of baby T.A.C.P., who after the eighth month of pregnancy were informed their child would be born with anencephaly. Baby T.A.C.P.’s parents continued the pregnancy to term with the agreement that the mother would deliver via cesarean procedure with the expressed intent the infant’s organs would be donated to other sick infants. T.A.C.P. herself had a grim prognosis, however, her parents both “testified in court that they wanted to use this opportunity to give life to others.”
After the scheduled cesarean procedure and birth of baby T.A.C.P., her parents requested that she be declared legally dead for the purpose of organ donation. However, her health care providers refused to do so out of concern that they could incur civil or criminal liability as a result. The parents filed suit in the district trial court to certify the determination of death. The trial court found against the family and an appeal to the Florida Supreme Court ensued.
The Florida Supreme Court began their inquiry by examining the state statutes, which found no binding legal authority to determine an anencephalic child alive or dead organ donation. No statute adequately met the needs of the court to make a definitive decision as to the status of the newborn. The court then turned to common law and policy considerations, which were equally as unconvincing. The court noted it was not “persuaded that a public necessity existed to justify” the indented action at issue.
Ultimately the holding rested on the overall lack of consensus as to the utility of organ transplants at issue, the ethical issues invoked, and the legal and constitutional problems implicated, finding against the parents. The court noted that T.A.C.P.’s heart was beating, and she was breathing at the time in question and accordingly was not dead under Florida law and no donation of her organs would have been legal. This case remains good law and precedent in the state of Florida. It has become a persuasive authority on the subject nationally, cited to in a number of decisions across jurisdictions and in countless articles and journals.
Statutory Change: What would that look like?
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Current United States law precludes parents from choosing organ donation as an option for their anencephalic newborns on account of the “whole brain death” definition of death. All fifty states have inducted the neurological criteria for determining death into their law by statute, regulation, or judicial decision. The widely adopted Uniform Determination of Death Act recognizes total brain death, or the irreversible cessation of all functions of the entire brain, including the brain stem, as a valid criterion for determining death. Born in conjunction with the Uniform Determination of Death Act, is the Dead Donor organ donation principle. The Dead Donor rule requires patients to be declared legally dead prior to the removal of life-sustaining organs for purposes transplantation. The generally accepted criteria of the Dead Donor Rule have been either the irreversible loss of heart/lung function, or, the irreversible loss of brain function. Live-born anencephalic infants do not meet either criterion. As noted earlier, these newborns have spontaneous respiration and brain stem function; thus organ retrieval would violate the Dead Donor Rule. However, waiting until either heart/lung or brain function deteriorates to the point at which death could be declared results in nonviable organs.
From this conundrum a push was born to broaden the definition of death under the Uniform Determination of Death Act to create a provision to provide the option for anencephalic newborn organ donation. Two suggestions have dominated this conversation. The first being, an amendment to the definition of brain death, so that an individual is declared dead with the irreversible loss of “all higher brain function.” This proposed amendment would allow for an individual to be legally dead even in the presence of some remaining brain stem function. It is important to note that this language change would extend past just anencephalic newborns to a number of other situations in which higher brain function is either lost or never present.
The second proposed amendment is more widely promulgated as well as more limited in scope, providing a provision strictly for anencephalic newborns. This proposal adds the term “brain-absent” to the category of brain-dead. This argument is grounded in the notion that such a large extent of an anencephalic brain is missing, including those portions that control consciousness, responsiveness and other hallmarks of personhood, that the brain is absent altogether. This proposal gained some traction, with California, New Jersey, and Ohio all having made legislative attempts to modify the Uniform Anatomical Gift to reflect the brain absent language.
Critics of these proposed statutory amendments make the argument it is a legally slippery slope. They note that if the organ donation shortage galvanized this statutory change, could it push the law further? Could the need for adult organs lead to the command for death row inmates to be organ donors? It is a significant jump, but critics argue it could all be made accessible with the passage of this first set of expansions.
IV. Conclusion
The determination if the parents so anxiously holding their anencephalic newborn baby girl can elect to use their infant as an organ donor for the child down the hospital corridor, and those across the nation remains unanswered, though highly discussed. The legal and ethical uncertainties impleaded in the discussion, in conjunction with its innate emotional component, are likely to keep the discussion of anencephalic organ donation a pervasive topic within the bioethical community for the foreseeable future.