Anencephalic New-borns as Organ Donors:

Legal and Ethical Issues

Caroline Hinds*

Organ transplants have developed over the last few decades to provide a chance for patients suffering from chronic or fatal illnesses. The reality of this development is dependent upon the availability of donor organs. In many cases these are provided from cadavers with suitably intact organs.

In older patients, cadaver organs suitable for transplantation are primarily from the victims of accidents, notably automobile accidents. Relatively few new-borns or young children die under circumstances that would make them suitable organ donors. It is rare for death to occur in infants as the result of brain insult which leaves organs intact and suitable for transplantation. Thus there is a shortage of organs for infants requiring an organ transplant and painstaking delays for suitable donors.

Proposed alternative sources for infant organ transplantation include animal organs, human foetuses and dying infants. This paper focuses on one group of new-born infants, anencephalics, who have received attention as a source of organs for transplantation.

Using dying anencephalic infants for organ offers many benefits. These include:

Despite these benefits, the issue of anencephalic organ donation has been the source of considerable controversy. The questions raised are not medical in nature per se, but instead revolve around fundamental ethical, legal, political and philosophical debates. These relate to the definition of death, the justification of non-therapeutic intervention, the candidacy for organ transplantation, and ‘slippery slope’ concerns.

This paper outlines and evaluates some medical, legal and ethical issues concerning the use of anencephalic infants as organ donors.

Anencephaly is defined as the congenital absence of the skull, scalp and forebrain. The amount of nervous tissue present can vary from a few grams to normal full-term brain weight. Similarly, the brain stem may vary from being totally absent to relatively normal.

The cause of anencephaly is not understood. The defect originates early in embryogenesis. In most cases it can be readily detected during pregnancy. Pregnancy may then be terminated if the parents so choose. However, detection late in pregnancy or at birth is not uncommon.

If birth does occur, the presence of anencephaly is obvious in the great majority of cases. There is little chance of mistaking it for other conditions. Nevertheless, misdiagnosis can occur. Therefore, although the probabilities of such errors are low, policies developed as being applicable only to anencephalics could, through misdiagnosis, affect other patients with congenital brain malformations.

One commentator sets the natural prevalence of anencephaly in the United States in 1988 at 0.3 per 1000 births. Based on this statistic, the number of anencephalics born in the United States each year will be approximately 1200. The life span of an anencephalic new-born depends on the condition of the brain stem and the intensity of care provided. Most die within one week of birth. Only a fraction of anencephalics are potential organ donors. It has been estimated in the United States in the next decade that only forty infants will benefit each year from transplantation with anencephalic organs.

Despite these low numbers and the fact that harvesting anencephalic organs may not be the rich source hoped, the controversy continues. The number of infants needing heart, liver and kidney transplants places significant demand for sources of infant donors.

If the removal of organs from anencephalic infants seems to provide benefits for several groups of individuals, why then is there such controversy?

Modern medical techniques have altered the conventional conception of death. In Australia it is generally accepted that death occurs upon irreversible cessation of circulatory and respiratory function or upon irreversible cessation of the function of the entire brain, including the brain stem. In New South Wales, Victoria, Tasmania, South Australia and the Australian Capital Territory legislative provisions incorporate this definition for the purposes of the law of the State or Territory. In Queensland, however, the definition of death in the Transplantation and Anatomy Act 1979 is self-referential and only to be applied for the purposes of that Act. For this reason there is no legislative definition of the term for the purposes of the general and criminal law under the Queensland Criminal Code. Despite this, the courts have tended to adopt the legislative criteria of death for the purposes of the criminal law in that State.

The principles enunciated by the English Court of Appeal in R v Malcherek have been said by the Court of Criminal Appeal of Queensland to be applicable and correct. In R v Malcherek the English Court of Appeal essentially restated the legislative concept of death. Lord Lane CJ said that:

Following this in R v Kinash, Connolly J held that it was "universally accepted by the medical profession that permanent functional death of the brain stem warrants termination of the artificial intervention". Thus, following judicial authority and the legislative provisions, the definition of death can be considered uniform throughout Australia.

The main concern with anencephalic infants is that they are typically born with brain stem functions intact. Since they retain cardio-respiratory and brain stem function they cannot be declared dead at birth. Anencephalics are severely brain damaged and have a hopeless prognosis, but they are not brain-dead. This was recently reinforced in the United States in a case concerning an anencephalic girl, whose parents discovered her condition before birth, but decided to proceed with the birth and donate the organs. The United States Supreme Court ruled that the baby was technically alive and that organs could not be removed until she was brain-dead. The baby died before the decision on appeal was handed down. Nevertheless, infant anencephalics, satisfying neither the dead donor rule nor the strict criteria for whole-brain death, have been used as organ donors. This was rationalised as satisfying the spirit, if not the letter of the laws, governing brain death. This practice has been deplored by some bioethicists as confusing a necessary condition with a sufficient condition.

The cause of death in anencephalics has not been systematically studied and remains largely unknown. Death probably arises from cardio-respiratory failure, but may vary from case to case, depending on the severity of the anomalies of brain and other organ system functions. This means that by the time brain death is declared, donor organs may be damaged by poor profusion making them unsuitable for transplantation.

If anencephalic infants are to be viewed as a valuable source of organs for transplantation, questions arise as to the strategies to adopt for the collection of viable organs and the difficulties these create.

A number of medical strategies have been considered for the collection of viable organs from anencephalic infants. Briefly these are:

Some of these strategies have clearly contributed to the controversy, raising questions about their legitimacy and moral acceptability.

Several proposals have been made in order to address the legal requirements and ethical concerns associated with these strategies. Proposals include:

The option of waiting for death as defined by existing law before taking the organs is consistent with the procedure used for the collection of organs from other donors. The steps taken to sustain the transplantable organs accord with current practices with adult organ donors. When life can be sustained, the emphasis shifts from prolonging life to maintaining organ vitality for transplantation. The infant is placed on vigorous life-support. The infant is then removed from life-support at regular intervals for short periods of time to assess the cardio-respiratory function and brain function. When either is assessed to be irreversibly stopped, death is legally declared. Assuming death is diagnosed on accepted grounds and parental consent is obtained, the organs may then be removed for transplantation. This 'wait until death' strategy has been used since 1987. However, it does not seem to have been as worthwhile as initially anticipated.

The strategy is not without its technical and ethical difficulties. The problem of confirming brain death in children less than two months old and, in particular, children less than seven days old, has been widely reported. Accepted clinical criteria for determining brain death in adults cannot be confidently applied to new-born infants. Vital signs are changeable and the prediction of irreversibility of brain function is unreliable.

One ethical issue raised by this strategy concerns the life-support of new-borns solely for maintaining organs to be used for the benefit of others. This has been criticised as violating the dignity of the infant donor. It may be argued that ethically, continued resuscitation is not needed. It is only being used to preserve the organs and the donor patient can derive no benefit from it. Standard treatment for an anencephalic infant not considered for organ transplantation is merely ‘comfort care’.

An anencephalic new-born is not competent to give consent and, arguably, is unharmed by having life extended for a few days. However, neither does the infant benefit from prolongation of life. A consequentialist, utilitarian approach would view the decision in terms of the action which would yield the greatest good and maximise societal welfare.

A further ethical issue relates to the violation of the Kantian mandate against the use of a person as a means to an end. In such a deontological analysis, the competing duties are compared. These duties include respect for the anencephalic infant, attention to the family's wishes, concern for the recipient and regard for the legal requirements.

The courts have ruled on the duties owed when making decisions about whether or not to treat severely disabled or brain-damaged infants. This raises issues about the sanctity of life. In establishing the duties the law merely formalises what is morally of social importance. As Lord Chief Justice Coleridge has stated:

Lord Donaldson in his judgment relating to the mechanical ventilation of a severely brain-damaged, four month old child, stated that:

At common law the lawfulness of medical treatment conducted on mentally impaired children depends on whether the treatment is in the best interests of the patient, taking into account the gravity of the consequences of wrongly authorising the treatment.

Walters and Ashwal and Williams argue that Kant, in his categorical imperative, did not have 'non-self-aware' individuals in mind when formulating his theory. Kant believed that in order to be autonomous and therefore eligible to be treated morally, a person should be rational and capable of choosing moral actions. Therefore, the applications of Kant's philosophy to anencephalic infants falls outside the scope of his moral theory. If the infant is not an autonomous moral agent, the Kantian objection to the use of a person as a means to an end is not violated. Another commentator, Davis, herself a spina bifida patient, argues strongly and convincingly against the need for rationality in order for a person to be treated morally.

Death is seen by many in society as an all-or-nothing truth. Many consider that the definition of death should not be malleable or arbitrary. It should be independent of the purpose for which it is required.

Some philosophers suggest that there is no true definition of death. Instead, at any given time, the definition of death is merely that which is accepted by social convention. It is created by society and exists to solve problems such as that discussed here. Throughout history definitions of death have merely mirrored a consensus of society's views. The compatibility of 'socially-accepted' definitions of death and religious doctrine has been and remains an area of controversy, due to different interpretations of religious beliefs. Nevertheless, it is submitted that the definition of death should not be arbitrary, even if it is subjective and reflects society's values. Walters argues that society is now ready to accept another change to the definition of death, namely in the case of anencephalics.

Green and Wikler argue that death should equate with the irreversible loss of cortical function rather than the loss of whole brain function, as is required by current law. The brain stem controls 'vegetative' functions, that is, it controls the integration of the functions of the major organ systems. The higher brain or cortical brain endows the individual with human qualities such as personality, consciousness and social interaction. The cortical function is thus responsible for 'personhood' and unique human values and is argued to be the brain function that is of moral importance.

This argument suggests that if higher brain function is irreversibly lost, the individual ceases to be a person and should be considered dead because the moral person is dead. Since the anencephalic lacks a functional cortex, he or she could be regarded under this definition as dead, and a suitable organ donor, even while the body 'lives on' by virtue of technological support devices. The anencephalic is then only ‘alive’ because the brain stem alone continues to function.

While this definition may have philosophical merit, it raises serious legal and social implications for other patients. While the differences between anencephalics and those in a persistent vegetative state are clear, they are not compelling. This raises concerns of a ‘slippery slope’. In the desire to find other organ donors, such people could be included in an expanded definition. This suggestion has already been made. The higher brain definition also poses a threat to the senile elderly and the profoundly brain damaged. The potential for inappropriate application of this definition of death to clinical situations is clearly apparent.

However, such a utilitarian proposal encourages a new definition whenever utility requires. Death, therefore, could be redefined in whatever way maximises the greater good at that time. Anencephalics, or indeed unwanted persons, could be 'defined away' in the interests of the ‘greater good’.

Creating an exception to the requirement for a dead donor within the existing definition of death is clearly a utilitarian move to place anencephalics in a special category. The justification is that anencephalics are unconscious, with higher brain absence, facing eminent death and have no hope of recovery. In essence, this special category authorises the termination of the infants life once parents agree to the donation of organs. The burden is therefore placed on the parents to agree to the cessation of the life of their child. This raises the question of whether parents should have unrestricted rights to donate organs of their children, and the further question of whether this makes children their parents' property. These are beyond the scope of this paper.

Potential errors in diagnosis of anencephaly give rise to another problem under this approach. Malformations lie on a continuum and diagnosis is not always straight forward. Other patients may be mistakenly categorised as anencephalics, namely, patients with neurological defects such as hydraencephaly, spina bifida infants and some microcephalics.

A further problem relates to ‘slippery slope’ concerns. The danger is the possible slow erosion of barriers to what are now unethical practices and the desensitisation to the cessation of life. Once a special exception is made for one group, there is no reason why similar exceptions should not be made for other groups who currently have legal rights. If organs can be taken from anencephalics there is no reason why they cannot be taken from other groups including patients with severe abnormalities, terminal illness or those near death. It must be asked how long society will keep anencephaly as a unique exception in the face of demand for organs.

The benefit of creating an exception to the dead donor rule for anencephalics is that rather than two inevitable child deaths, one may be prevented. The anencephalic’s parents’ grief at their child’s certain death may be eased by the saving of another child's life. However, as in any dilemma, when creating an exception to the dead donor rule for anencephalics, the benefits must be weighed against the possible detriment.

The anencephalic infant has no consciousness, no self awareness, no autonomy and no future life. Given this, Wilke and Andrusko have argued that the anencephalic is a non-person, a mere function, not a person in the legal and moral sense. This argument was expounded by those in favour of redefining death to mean higher brain death. This has been a common denominator in several of the options already discussed, namely conceding that the child is alive but removing the organs on utilitarian grounds, or changing the definition of death to accommodate anencephalics.

Considering the anencephalic child to be a non-person reduces their sole utility to a source of organs for transplantation. Such utilitarianism would appear to deny the humanity of anencephalics. This clearly contradicts with medical codes and social traditions requiring members of society to treat, care and respect each other as persons with intrinsic worth and rights.

Some issues facing society are interminable, with both sides raising valid points. Yet a decision has to be made, whether or not it can be fully justified. The donation of organs from anencephalic new-borns is one such ethical dilemma, where decisions are difficult but necessary.

Morality is a system for guiding and judging behaviour. Like many other moral dilemmas, this problem cannot be considered in isolation. Its treatment will have implications for many other closely related problems. The two ethical theories that dominate such moral disputes are those of Immanuel Kant and John Stuart Mill’s utilitarianism. These have been referred to at various points throughout this paper. Each depicts certain aspects of the moral issue. The courts have emphasised that every moral obligation does not involve a legal duty, but every legal duty is founded on a moral obligation.

Each of the four strategies for harvesting anencephalic organs discussed in this paper is fraught with either moral dangers or legal and medical impediments, or both. Despite the acknowledged demand for infant organ sources the law should not be manipulated to suit the needs of a select few. It has been said that:

If anencephalics are acknowledged as an appropriate source of organs, which categories of dying or impaired patients is next?

Traditional Western medical ethics are founded on the Christian theology which prohibits the taking of human life, irrespective of the benefits. Therefore resources should be directed toward greater research to develop monitoring and maintenance systems that would satisfy existing ethical and legal mandates. Given the advancements in improving the effectiveness of pre-natal screening for anencephaly, the question as to whether anencephalics are a valuable source of transplantable organs may become a moot one. Ways should be found to care for dying infants, including anencephalics, so that when death is declared they can become organ donors. Changes in the law and moral gymnastics of the type discussed in this paper will be as unnecessary then, as they are now undesirable.

Copyright 1999 Australian Law Students' Assoication, Inc. Page last updated 30th April 1999.