An overview of several ethical considerations regarding anencephalic newborns as organ donors

About one in every 5,000 American babies born annually is diagnosed with a birth defect known as anencephaly. Major parts of the brain, scalp, and skull of the fetus do not form completely as it is developing in the womb. This defect occurs when the neural tube does not close properly between the third and fourth weeks of pregnancy. An infant who is born with anencephaly has some or most of the brain missing. As such, anencephaly is a fatal condition and the newborns that survive die within several hours, days, or weeks (Hinds, 1995). Death is imminent.
There is no cure for the condition and research shows a low intake of folic acid before getting pregnant and in early pregnancy increases the risk of having a pregnancy affected by neural tube defects, including anencephaly. Babies born to Hispanic mothers are at an increased risk for anencephaly for no unknown reasons.
Although these infants are fully developed otherwise, have healthy organs, and facial characteristics of a normal baby (although some have bulging eyes), a big part of their skull and brain are missing. Due to the missing higher brain centers, the anencephalic infants are considered unconscious (no awareness of themselves or surroundings), cannot feel, and are usually blind and deaf. Some infants may have a primitive brain stem at birth which would allow them to respond to sound or touch, but their reactions are involuntary and are caused by the central nervous system whose sole purpose is to keep an individual alive (breathing, blood pumping, etc.), (Bioethics Consultative Committee, 2009).
As the anencephalic newborns are bound to die at one point or another, one cannot help but wonder why not donate their healthy organs to infants who are born with a fully developed brain but may have a repairable birth defect? (Arras, 1988). The organ donation from the anencephalic individual would therefore allow the recipients to potentially live longer and grow up to be adults.
The possibility of harvesting organs from anencephalic newborns for the use of infants who have a higher chance at survival has been heavily debated in the medical community. Although there are many papers, opinions, debates, seminars, and such on the topic at hand, no ethical or legal decision has been made regarding whether organs from anencephalic individuals should be used to save the life of a another being.
The following paper will examine ethical considerations involving anencephalic newborns as organ donors. In particular, issues of how to define death, organ donation, the duty of care and patient-physician relationship, and making of a substitute-decision maker will be discussed.
Introduction
Currently in the US, between 30-50% of children under two years waiting for a heart, liver, or kidney transplant die before the particular organ becomes available (Bioethics Consultative Committee, 2009). Adult kidneys can be successfully transplanted into neonatal recipients but the process isn’t feasible for heart or liver transplants (John Hopkins University, 2015). In newborns, the heart is the most sought out organ needed for donation. In the US alone, there are nearly 40,000 newborns that have some form of CHD – Congenital Heart Defects (Centers for Disease Control and Prevention). “One third of infants born with CHD develop life-threatening symptoms within the first few days of life. The infant mortality rate in these cases is as high as 90 percent.” (Saenz, Beebe, & Triplett, 1999). Due their size, newborns cannot accept an adult heart and therefore leave the need for donation up to their small counterparts, the dying anencephalic. In England, around 2100 neonates die every year due to shortages of available organs (Brierley & Hasan, 2012). “The lack of available donors for the smallest potential organ recipients has led to the suggestion that anencephalic infants be used as organ donors” (Botkin, 1988).
Given that a fetus is considered viable at 28 weeks, if an organ from an anencephalic newborn became available, a transplant could be attempted very early in life. In the case of Roe v Wade, the US Supreme Court defined fetal viability as “The point at which the fetus is potentially able to live outside its mother’s uterus, albeit with artificial aid” (Coleman 7). Given the following information, one can easily see that newborns are dying due to birth defects and subsequently due to a lack of organs available for donation; organs which could come from anencephalic individuals who will ultimately die.
Defining Death
Before defining death, brief descriptions on the views of personhood are examined. Sentient cognitive awareness is the definition of personhood. Personhood is not centered in all parts of the brain but only in the cerebral cortex – the undeveloped part in anencephalic newborns. Legally, a fetus is said to become a person once it is born, although there are various ethical perspectives that consider the fetus a person beforehand. The personalist perspective sees the fetus as a person once it has the capacity for awareness and reasoning (Jones, 1998). According to Jones (1998), this occurs when the cerebral cortex is fully developed at around 20 weeks of gestation. The vitalist perspective considers the fetus a person when it is able to function in an integrated way, which occurs after the brainstem develops at about 12 weeks (Jones, 1998). The gradualist perspective states that a fetus will slowly become a person in a gradual fashion rather than at a set time (Sumner, 1981).
There are two criterions used to determine death in an individual, cardiopulmonary and whole brain death. Determining death using the cardiopulmonary perspective is an original materialist criterion which states life is dependent on the presence of a beating heart and functioning lungs. The cardiopulmonary criterion of determining death may not be reliable in all situation as seen in the example of severe hypothermia – especially in children, where the heart beat is not detected but the person is still alive (Barratt-Boyes, Simpson, & Neutze, 1971). Life support and advanced surgical techniques have forced a reexamination of the criterion, as the patient is artificially kept alive via ventilation and pumps circulating the blood.
The second criterion used to determine death is brain death, or whole brain death. “Brain death is the complete and irreversible loss of brain function (including involuntary activity necessary to sustain life). Brain death is one of the two ways of determination of death, according to the Uniform Determination of Death Act of the United States (the other way of determining death being “irreversible cessation of circulatory and respiratory functions”). It is not the same as persistent vegetative state in which the person is “alive”.” (Wikipedia, 2015). How does one ethically deal with the difference between a destroyed brain and one that never developed? Kluge (2013) states, “Someone is dead if and only if his or her brain has been irreparably destroyed.”, which would satisfy the notion to say an anencephalic newborn is dead as their brain is irreparably destroyed.
Legally, someone who is dead is no longer a person, as they have no cognitive awareness (higher brain function). In the development of the “Test of Death”, The Harvard Medical Committee (1968) stated “It is not the permanent destruction of supportive biological machinery that’s keeping one alive, but the permanent destruction of the brain.”
This examined the criteria of determination of death and brought on brain death as set criterion in the clinical setting. The controversy regarding brain death criterion remains unresolved; the matter whether cerebral or whole brain death criterion should be accepted.

Organ donation

As it stands, due to some anencephalic individuals being born with a functioning brainstem, it would be unethical to call them dead or to kill them, as they are still considered alive, though perhaps not persons. Section 7 of the Canadian Charter of Rights and Freedoms states everyone has a right to life and the Law Reform Commission of Canada in Working Paper 28 on “Euthanasia, Aiding Suicide, and the Cessation of Treatment” stated, “Bringing about death of a person is murder.” (Kluge, 2013). Furthermore, the CMA in 2007 declared the distinction that “Canadian physicians should not participate in euthanasia or assisted suicide”, (Kluge, 2013).
There is a fundamental difference between having had liberty as a person and never having the opportunity to gain liberty, capacity, etc. as in the case of the anencephalic individual who is destined to die.
Recovering vital organs if patient is brain dead or near death but not yet dead seems to be ethically well grounded because death is imminent and the anencephalic has no sense of pain so there is no suffering brought on to the individual. However, the ethical norm, under the dead donor rule, which is neither law nor regulation, states an organ donor must be dead before vital organs are removed (Arnold & Youngner, 1993). This further creates problems as organs start decaying from when the individual dies and blood flow is no longer circulating throughout the body. As such, by the time the individual is declared dead and preparation for transplantation can begin, the organs are no longer viable.
In the case of individuals kept on life support, which an anencephalic may be, it is currently not legal to take them off for the purpose of organ harvesting. In the case of Karen Ann Quinlan (1976), the New Jersey Supreme Court decided withdrawal of life support doesn’t cause the patients death – it allows the patient to die. It is the disease or illness that causes death, not the physician.
“Ethical principles require that the potential organ donor be declared brain dead or pronounced somatically dead before organ donation using standard cardiorespiratory criteria – the ‘dead donor rule’. The same ethical principles and medical criteria for transplantation in adults and older children apply to infants, either as recipients or as donors. The process of discussion must be consistent with the standards of surrogate informed consent.” (Hanlon, 2015).
Some stipulations to organ donation include:
• 1. Decision to withdraw life support if anencephalic newborn is on it.
• 2. Consent of proxy.
• 3. No conflict of interest.
Because anencephalic newborns would have to be kept alive with or without support in order to permit tissue typing and surgical preparation, the unfortunate notion is that it seems these individuals are basically being kept alive for purpose of killing (harvesting organs).
Duty of care and patient-physician relationship
Before personhood there is no duty to keep the fetus alive and therefore no fiduciary relationship other than that of providing good care. However, “No physician in Canada can terminate a pregnancy over 24 weeks without serious indications that the life of the mother is at risk or that the fetus has very serious malformations.” (Russell, 2013).
How does one go about this if an anencephalic newborn is not considered a person? After personhood there is a right to life (ethically), and a fiduciary duty. The Canadian Medical Association Code of Ethics states, “…consider first the well-being of the patient,” and “Practice the profession of medicine in a manner that treats the patient with dignity and as a person worthy of respect.” The physician can follow the CMA codes of ethics without violating them by providing care for the fetus but not having the duty to keep it alive at any cost.
The two Canadian Charter of Rights and Freedoms applicable in this case are sections seven and 15. Section seven states the right to “life, liberty and security of person, and the right not to be deprived thereof except in accordance with the principles of fundamental justice. Section 15 states “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
The Principle of Autonomy, and the Right to Self-Determination applies to the gestational carrier as well as the anencephalic has no capacity and no sentient cognitive awareness. As such the fiduciary model is the only ethically defensible and legally permitted model in Canada (as opposed to the paternalistic, contractual, agency or friendship).
Under the Criminal Code of Canada, the following sections are applicable:
• S. 215 (1): “Everyone is under a legal duty (c) to provide necessaries of life to a person under his charge, if that person is (i) unable, by reason of detention, age, illness, mental disorder or other cause, to withdraw himself from that charge.”
• S. 216: “The duty of medical personnel to use all required knowledge, ability and attention when giving medical care”
• S. 217: Duty of all persons to continue life –saving acts”
In the case of the anencephalic, there is no capacity. So, although it may seem a physician need not provide care until personhood, the circumstances are that once in the womb, the fetus is a part of the carrier who does have capacity, and once born, its capacity is handed over to gestational carrier to act on behalf.
Under the physician-patient relationship the physician has a duty to both patients but under what views once the anencephalic fetus is born?
Making of a substitute-decision maker
Whether diagnosed with anencephaly or not, any newborn relies on the decisions of its caregiver or substitute-decision maker as it is not yet a fully developed person with capacity. In the case of organ donation, whose needs should come first? Hypothetically, an anencephalic newborn may need a ventilator to keep it alive, and its proxy may have the need to use its organs to save another child. The law states, if you do not appoint a substitute-decision maker, one will be appointed to you. In the realm of medical care, this will probably be your attending physician or a team of doctors. Unfortunately, not even the Biomedical Ethics Committee of Canada has a particular protocol when it comes to anencephalic newborns other than to provide accessible care and cause no suffering (Collier & Haliburton, 2011).
Currently, each situation involving anencephalic newborns is handled accordingly as by its team of care providers and the substitute-decision maker- if there is one.
Ultimately, best intentions for the anencephalic newborn are kept in mind, although this just falls to not causing further suffering. What is controversial is that anencephalic newborns experience no pain; therefore, technically they wouldn’t be suffering whether they are let to die on their own or whether someone unplugs the ventilator that is keeping them alive.

Conclusion
Unfortunately, it is the reality of the situation, the fact that anencephalic newborns feel nothing, know nothing, which scares people into making ethical decisions regarding bringing about their death. When you have a human being in front of you which looks and may even act as a baby (looking around, breathing, etc.), it is hard to think about ending that individuals’ life. I believe that people are worried about the “slippery slope”; bringing about the death and harvesting organs of a disabled individual may open doors to do the same to others considered disabled. Allowing anencephalic organ donation may lead to similar procedures under shady regulations and/or experimentations on other dying patients or even patients whose lives appear to have little value. However, should we draw the line at personhood? If a person has no higher brain awareness, should they be allowed to let die and/or should their organs be considered for donation?
These are questions a lot of people don’t want to entertain, although I am sure they would love an answer to. No one wants to play God and be at sole responsibility for the consequences their decisions may bring. I believe this is the root of the problem when considering anencephalic newborns as organ donors. The authorities and committees may have an answer regarding the matter but they are not putting it through to become law and an ethical consideration due to how taboo the subject is.
We cannot compare past wrongdoings to other human beings with decisions to be made today that could save lives.
There is a shortage of organs and an allocation of resources. Providing scarce organs to the smallest of benefactors would celebrate the life of the one who couldn’t live for one that had a better chance at it. Parents of the donor infant would be able to derive some satisfaction knowing good has come from their tragedy and society and the healthcare system would be spared the costs of caring for a terminally ill infant where death is imminent.
Due to advanced prenatal technologies, rates of anencephalic newborns have decreased (17%). This advancement therefore removes one option to save the smallest in organ needs. However, development of new technologies such as the bionic heart, (Baddour, 2015), a process advanced at the Texas Heart Institute in Huston, or 3D printed organs, may in the near future provide the smallest of recipients with a fighting chance at life.
References
Arnold, R. M., & Youngner, S. J. (1993). The dead donor rule: Should we stretch it, bend it, or abandon it? Kennedy Institute of Ethics Journal, 3(2), 263-278. doi: 10.1353/ken.0.0153
Arras, J.D., & S. S. (1988). Anencephalic newborns as organ donors: A critique. JAMA , 259 (15), 2284-2285.

Baddour, D. (2015, March 12). Researchers build bionic heart. Houston Chronicle. Retrieved from http://www.chron.com/life/healthzone/article/Researchers-build bionic-heart-in-Houston-6130108.php

Brierley, J., & Hasan, A. (2012). Aspects of deceased organ donation in pediatrics. British Journal of Anaesthesia, 108(1), 92-95. doi: 10.1093/bja/aer405

Canadian Charter of Rights and Freedoms, Part I of the Constitution Act, 1982, c. 11.

Collier, C., & Haliburton, R. (2011). Bioethics in Canada: A philosophical introduction. Retrieved from https://books.google.ca/books?id=jTUq 89BNscC&pg=PA231&lpg=PA231&dq=anencephalic+substitute+decision+ aker&source=bl&ots=9Ijtp-rtUC&sig=5_TIbSVWod2kjS1M tZz3UDDfOI&hl=en&sa=X&ei=8DooVYTwBILjoATX2YG4Cw&ved=0CDgQ wBA#v=onepage&q=anencephalic%20substitute%20decision%20maker&f false

Committee, B. C. (2009). Organ donation from anencephalic infants. BBC.

Fost, N. (2005). Use of anencephalic newborns as organ donors. Canadian Paediatric Health, 10(6), 335-336.
Hanlon, T. (2015). Ectogenesis: Development of Artificial Uteri and their Implication in the Abortion Debate.
Hinds, C. (1995). Anencephalic newborns as organ donors.

Jones, G. (1998). “The Problematic symmetry between brain birth and brain death. Journal Medical Ethics 24, 237-242.

Kluge, E. H. W. Ethics in Health Care: A Canadian Focus. Toronto: Pearson, 2013.
Parker, S., Mai, C., Canfield, M.A., Rickard, R., Wang, Y., & Meyer, R.E. (2010). For the National Birth Defects Prevention Network. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006. Birth Defects Res A Clin Mol Teratol. 2010; 88(12):1008-16.
Russell, P. (2013, February 5). Today’s letters: Late term abortions are not happening in Canada without a ‘reason’. National Post. Retrieved from http://news.nationalpost.com/full-comment/letters/todays-letters-late trimester-abortions-are-not-happening-in-canada-without-a-reason
Saenz, R.B., Beebe, D. K., & Triplett, L. C. (1999). Caring for infants with congenital heart disease and their families. American Academy of Family Physicians, 59(7), 1857-1866. Retrieved from http://www.aafp.org/afp/1999/0401/p1857.html

Sumner, W., Abortion and Moral Theory (Princeton, NJ: Princeton University Press, 1981).
410 U.S. 113. Roe v. Wade (No. 70-18), Dec.1971.

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