Utilitarianism

The essence of utilitarian theory is the idea that the morality of an action is determined mainly by its consequences: the morally right action is the one that produces the best result [Beauchamp and Childress, 2001]. Of course, the result of an action may be quite complex. An action that helps one person may harm another person. Withdrawing support from a child in a vegetative state undoubtedly harms the child, since it results in the child’s death, but the action may help the family grieve and may allow society to use limited medical resources to help other patients. The utility principle states that one should act to produce the best overall balance of positive and negative consequences of the act. This idea is embedded in the concept of balancing risks and benefits to achieve the best overall result.

Utilitarian theory is often cited to justify actions that are most likely to increase happiness, but other desirable results are also possible. Individuals may wish to act in such a way as to increase personal quality of life, enjoyment of and satisfaction with life, success in a preferred career, and general knowledge and understanding, or to strengthen personal relationships. Lawyers and policymakers use the utility principle to produce the best overall balance of justice and fairness for society.

Utilitarian thinking is almost intuitive in many aspects of ordinary life. Understanding this form of thinking is important because it may help avoid the potential pitfalls that can result from uncritical application of the theory. Perhaps the most familiar situation is the use of utilitarian theory to justify the killing of defective newborns [Kuhse and Singer, 1985]. Although theoretically logical, such arguments are morally repugnant to persons who apply a different moral standard based on some other approach to ethics. Another problem with utilitarian theory is its failure to protect minorities, which results from its emphasis on producing the most good for the majority. The needs of children with rare neurologic disorders can be overlooked if utilitarian thinking allocates scarce medical resources primarily to children with more common disorders.

Deontology

Deontologic theory is based on the importance of “deon,” or duty. Duty is based more on the intentions that lead a person to act than on the outcomes or consequences of the action. Utilitarian thinking is mostly situational and depends on the specific aspects of a given situation; deontologic thinking strives to be more universal and to emphasize decisions that would apply in all relevant situations. Thus, Kant’s categorical imperative states that we should act only in a way that is consistent with a universal law or obligation [Kant, 1959]. Using people as means to an end implies that different actions (or reactions) are needed, depending on the end or outcome that is desired; therefore, the actions are not universally applicable. For this reason, deontologic thinking stipulates that we should treat all people as “ends” and not as means to an end. This could cause problems in thinking about the morality of organ transplantation if the organ donor is thought of only as a means to the end of survival for the recipient. Clearly, deontologic thinking imposes a duty to respect the rights and value of the donor as much as those of the recipient because anyone could be either a donor or a recipient.

Deontologic thinking emphasizes duties and obligations, but these may conflict. For example, physicians may have different and competing obligations toward patients, families, hospitals, insurance companies, and society. The attempt to describe duties leads to formulation of general or universal rules for moral action, but these rules may also conflict. Rules may be too abstract and impractical to apply to real-life situations. Deontologically based rules do not take into account the messiness of human relationships, a point that it is essential to keep in mind when considering the ethics of care discussed later in this chapter.

Common Morality and Natural Law

What are the universal rules that spring from deontologic thinking? Most Western philosophers would argue that these rules can be derived from the application of reason – from rational, logical thinking about the nature of human existence. The general argument is that “all rational persons would agree that these rules are essential to govern and guide the moral actions of individuals in a cohesive society” [Beauchamp and Childress, 2001]. Beauchamp and Childress [2001] describe the “common morality” as socially approved norms of human conduct that form the basis of ethical theory. This common-sense understanding of what is needed for individuals to behave in society is not derived from theory, but rather forms the basis for potentially competing theories.

Natural law theory is an ancient approach to deriving universal rules through the application of reason [Simon, 1992]. For Thomas Aquinas, natural law sprang from man’s participation in God’s eternal law and was brought into being by the application to action of human intelligence and reasoning [May, 1994]. This application leads first to the principle that all things desire that which is good; therefore, good is to be pursued and evil is to be avoided. Good things are those to which man has a natural inclination, such as life (existence), social interaction, family life, and civil government. To pursue these good things, one should act fairly, love God, and love other persons. Secondary precepts or rules (such as the Ten Commandments) follow from these basic principles.

Secular interpretations of natural law are as old as Aristotle and are still used in some forms of legal theory. Bernard Gert [2002] defined two sets of rules that he believed all rational persons would accept as natural and essential, without relying explicitly on natural law theory. Many of his rules are in fact similar to the Ten Commandments. Gert also emphasized that the rules are not absolute and that violations may be considered in specific circumstances. Beauchamp and Childress [2001] do not define any specific rules as part of their common morality, but they do define four principles that are not absolute and that need to be specified based on actual circumstances. None the less, their four principles may be seen to correlate with the precepts of natural law:

Whatever the source of the common morality, it is the basis for principlism, the ethical theory based on the application of principles to specific situations.

Principlism

Principlism is an approach to ethical problems that is based on the application of the four principles of beneficence, nonmaleficence, justice, and autonomy. It is more of a practical guide than an abstract theory, and it has found widespread acceptance in a variety of settings [Beauchamp and Childress, 2001]. It was adopted explicitly in the Belmont Report, which forms the foundation for research ethics in the United States [Belmont Report, 1979]. Although principlism is perhaps the best-known approach to clinical ethical problems, it is by no means the only approach. Understanding principlism is necessary to consider these alternative systems.

The principle of autonomy has become pre-eminent in Western society, although it may be less prominent in Eastern societies that place a greater value on social harmony. Physicians need to keep this in mind when caring for patients from other cultures. An autonomous choice is one that is based on sufficient knowledge of the facts involved, the ability to understand the situation, and the independence to choose without undue influence of other people. An autonomous person can determine for himself what he thinks is best, and this principle states that other people should respect these choices, even when they do not agree with or approve of them. Autonomy is the basis for the concept of informed consent, which requires that a patient has the capacity or competence to understand the issues, full disclosure of all of the information needed to make a decision, and freedom from any coercion that might influence the decision.

In general, persons younger than 18 years of age are not considered to have the capacity to make fully autonomous choices, although their preferences should be considered and respected, if possible. American law recognizes that persons 18 years of age and older are fully competent, unless a judge has determined otherwise. This recognition is critically important for young adults with neurologic disorders (such as intellectual disability) that may affect their capacity to make fully autonomous decisions. If capacity is in doubt, the family will need to initiate legal proceedings to obtain guardianship when the person becomes 18 years old. A young adult (over 18 years) with a neurologic disorder that results in limited competence is unable to give informed consent, but that individual’s parents cannot give consent for him or her unless they have obtained guardianship. Failure to obtain guardianship when it is necessary can interfere seriously with medical treatment.

The principle of beneficence encourages physicians to do good or to act in the best interest of the patient whenever possible. This principle can also be interpreted to suggest that physicians should seek to promote an optimal quality of life or satisfaction with life. Considerable debate exists about how to measure quality of life [Bowling, 2004; Nordenfelt, 1994; Nussbaum and Sen, 1993; Schalock, 1996]. Objective measures are based on the judgments of others, whereas subjective measures are based on the opinions of the patient about what constitutes a satisfying life. In general, preference is given to subjective judgments when they can be known.

The principle of nonmaleficence encourages physicians to avoid doing harm to patients and dates back to Hippocrates. It is related logically to the principle of beneficence. Both principles are considered when physicians attempt to strike a balance between providing a benefit for the patient (doing good) and not imposing a burden (avoiding harm). This balance may become especially problematic when the same action could produce a good, or desired, effect, as well as a bad, or undesired, effect. The classic example is prescription of sufficient medicine to reduce pain while knowing that it may also cause the patient to stop breathing. This problem is known as the “situation of double effect” [Beauchamp and Childress, 2001]. In Catholic moral theory (which contains the most explicit analysis of such situations), an action that causes double effects is morally justifiable only if it meets all of the following criteria:

This concept is admittedly difficult to apply in practice. Evaluation of each criterion may be arguable in a specific situation. Perhaps the best that can be expected is that physicians will make a good-faith effort to adhere to the principles involved and seek to obtain the optimal balance between benefit and harm for the patient and family.

The principle of justice requires that equals be treated equally, but the basis for an equal distribution of resources may be arguable. Should resources be distributed according to need, effort, merit, contribution to society, or some other factor? Utilitarian, libertarian, communitarian, and egalitarian approaches have been proposed to answer this question [Beauchamp and Childress, 2001]. Rawls [1971] suggests that resources should be distributed to ameliorate the effects of life’s natural and social lotteries. It may be simply bad luck (“losing the lottery”) that a child is born with a disabling condition or is born into poverty. If the child is not responsible for this condition, then society should act to remedy the situation. According to this rule, unfair situations would presumably have priority over merely unfortunate situations. How many resources should be provided to those who have been unfairly deprived? The limits of this redistribution policy may be the extent to which it disables or impoverishes the rest of society [Veatch, 1986].

Jonsen et al. [2010] suggest that ethical issues can be analyzed by asking the following four questions (which are, in fact, practical applications of the four principles discussed previously):

The questions may be somewhat hierarchic, in the sense that medical indications and patient preferences are usually more important than potential social burdens, but physicians should not be too rigid about this. In fact, asking (and answering) these four questions in a particular case is an excellent way to make sure that the relevant issues are identified and evaluated. These issues can then be considered by the caregiving team, patient, and family. Resolution of the issues may vary from case to case, but at least everyone involved will be able to see how the decision was made.

Virtue or Character Ethics

Virtue can be described as a trait that has moral or social value. According to Aristotle, virtuous behavior requires both the right motive and the right action. In other words, wanting (or intending) to do the right thing is not enough by itself. This idea is somewhat at variance with pure deontologic thinking, as described previously. In virtue theory, following a presumably universal rule is not necessarily a moral or virtuous act if it produces a bad result. Similarly, doing right for the wrong reason is not necessarily a moral or virtuous act if the motive itself was not virtuous.

The catalog of virtues is not exhaustive and varies from one writer to another. Pellegrino and Thomasma [1993] suggest eight virtues that are necessary for sound medical practice:

They argue that these eight virtues are necessary but not sufficient for physicians to practice ethically. Possessing these virtues provides evidence of good intent but they must be linked to ethical action. They suggest that principlism, although not specifically part of virtue theory, can provide a guide for virtue-based ethical action.

Ethics of Care

Care-based ethical thinking is prominent in nursing practice but may be somewhat unfamiliar to physicians. It arose as somewhat of an alternative to deontologic, rule-based thinking that depends on adherence to more or less rigid principles. It also arose from feminist research studies comparing male and female approaches to ethical dilemmas. Gilligan [1982] found that males were more likely to look for rules to follow and to insist on adherence to these rules. Females were more likely to look for some situation-based way to resolve a dilemma, taking into consideration the person’s feelings and significant relationships [Gilligan, 1982]. This “feminine” way is not exclusively reserved for women (or for nurses), of course. Rather, it provides an alternative and perhaps more subjective way to evaluate an ethical problem that is especially relevant when a rule-based approach seems to be inappropriate or unhelpful [Held, 2006; Kuhse, 1997; Taylor and Watson, 1989].

Somewhat obviously, care-based ethics does not have any fixed rules. In fact, it challenges the idea that impartial or universal rules should guide ethical action. Instead, it looks at the particularity of the patient and the clinical situation, and seeks to find answers that fit this unique case. Care-based ethics accepts the fact that emotions have important moral value and must be considered carefully. It also emphasizes the patient’s human relationships and the mutual interdependence of the patient, family, and all members of the caregiving team. A care-based approach to an ethical dilemma would say something like, “That can’t be the only possible ethical solution. There must be another way to resolve this problem that is acceptable to everyone here. We all want to do what’s best for the patient, so let’s think about what that means. Maybe we could start by understanding what the patient is feeling and by talking to the family. We should also talk about how we feel about all of this. Let’s brainstorm some ideas and think about what they would involve. Maybe we need to talk to some more people and get more information. If we keep working at it, we’ll find a way.”

This approach will sound familiar to anyone who has been involved in difficult cases in the intensive care unit, which emphasizes the ubiquity and usefulness of this way of thinking in clinical practice. Perhaps an awareness of the sound ethical foundation of care-based ethics will also help clinicians give this way of thinking the respect it deserves.

Casuistry

Casuistry, or case-based ethics, is another alternative to utilitarian or rule-based ethical approaches [Jonsen and Toulmin, 1988]. It rejects the very idea of a “moral calculus” that can be analyzed impartially, based on abstract concepts. Instead of a “top-down” approach, based on pure theory, it takes a “bottom-up” approach, based on the particularity of specific cases. Casuistry looks at specific cases and emphasizes points of agreement about those cases. It recognizes that moral intuition may be more important than adherence to principles. It is common knowledge that members of hospital ethics committees often agree on what needs to be done but cannot always say with clarity why they feel that way (or what ethical theory they relied on to make a particular judgment). This moral intuition may also reflect the influence of the “common morality” described previously. By looking at the particularities of a specific case, casuistry is also sensitive to contextual influences and individual differences.

The method of casuistry is somewhat analogous to the method of case law used in the United States. One first identifies several key cases about which there is a consensus regarding the proper ethical approach. These are cases that have had careful scrutiny in the past and are still believed to be instructive. New cases are then compared with these key cases, selecting those past cases that have the greatest similarity to the current case. One then seeks to develop a consensus about how to resolve the current case, based on how these past cases were resolved. Each new case that is resolved in this way goes into the body of case experience, so that the consensus is revised and modified incrementally in the light of clinical experience.

One can see that casuistry is very similar to what an experienced clinician does naturally, drawing on his or her experience in past cases to sort out the issues in a new case. One has to be careful about which past cases to consider and to what extent the decisions made in those cases apply to the current case. Experience in past cases may also be conflicting, and it may be difficult to sort out the similarities and differences compared with the current case. One also has to be careful about how much weight should be given to one past case compared with another past case. In a very real sense, every new case is different (as every clinician knows), but there is still much to be learned from past experience. Casuistry provides a sound ethical foundation for using this clinical experience in resolving ethical dilemmas.

Spirituality

Spirituality is variously defined, but it can be understood as a belief system that focuses on intangible elements that impart vitality and meaning to one’s life [Koenig, 2002]. Because it is based on beliefs, or faith statements, it is not provable through logical argument. Spirituality in medicine is often based on religious beliefs [Sulmasy, 1997], but it need not be. As an expression of ultimate concern, it reflects the elements of our lives that are the most important and make life worth living. Most people have some spiritual beliefs that become prominent when their health is threatened; yet these beliefs are often not considered by physicians and other health-care providers. Physicians may anticipate that patients would have certain beliefs based on knowledge of their religious background [Numbers and Amundsen, 1998], but individual differences exist, even within a religious tradition. A more direct understanding of the patient’s spirituality would be preferable.

One approach to understanding the patient’s spirituality is the “three ways of looking” [Coulter, 2001]. The first look is to see the person subjectively as an individual human being. Compassion requires distance and objectivity [Pellegrino and Thomasma, 1993], but this first look requires closeness and subjectivity. It is an attempt to understand the patient’s spiritual beliefs. The second look is to recognize in the other person that which we know to be central to our own existence. With the second look, we can value in the patient that which we most value in ourselves. These values include living, freedom, tolerance, respect, happiness, and satisfaction with life. Physicians would then seek to protect for their patients the values that they would protect for themselves. The third look is more elusive and is an attempt to grasp, through our relationship with another person, the transcendence or divinity that is the basis of our spiritual existence. This third look comes when it is least expected, often in the vulnerability of a frustrating or challenging ethical situation. When we are open to it, it can provide insight, enrichment, and ethical guidance.

The three ways of looking can be the basis for a spiritual approach to medical ethics. Three precepts can be identified:

These precepts do not appear to depend on any specific religious tradition and should be applicable in all cultures and religions. One need not be religious to apply them to one’s practice. They avoid the relativity of accepting cultural practices at face value by providing a general structure for applying differing cultural beliefs to specific clinical situations. Spirituality cannot and must not be coerced or imposed on others, but physicians who are open to the role of spirituality in the lives of their patients may find these precepts useful in considering difficult ethical challenges.

Duties as a Physician

The AMA Code of Ethics is a document that has been revised over the years and includes opinions and statements on a variety of current issues. It incorporates the current version of the Code of Medical Ethics [American Medical Association, 2009]:

Additional guidance may be found in descriptions of the virtues needed for medical practice [Pellegrino and Thomasma, 1993]. These include the need for trustworthiness, compassion, empathy, prudent clinical judgment, altruism, fortitude, temperance, integrity, and primacy of the patient’s interest. Indeed, many of these virtues are implicit in the principles delineated by the AMA.

Many professional societies have developed ethical codes or guidelines that are specific for their field. The websites of the American Academy of Pediatrics (www.aap.org), the American Academy of Neurology (www.aan.com), and the Child Neurology Society (www.childneurologysociety.org) may be consulted for the most up-to-date statements about the ethical responsibilities of members of these societies. Legal issues involved in neurological professionalism were reviewed recently [Larriviere and Beresford, 2008], and the issues that define professional ethical responsibilities for neurologists were outlined by the past president of the American Academy of Neurology [Sergay, 2009].

Conflicts may arise in applying these principles during ordinary practice. For example, physicians should generally tell the truth, but what if truth-telling would appear to be harmful to the patient? There are no easy answers. The application of a care-based ethical approach may be useful in such situations. A carefully considered amount of information may be provided in such a way and in a particular context, taking into account the physician–patient relationship, so that all involved will understand the information being conveyed and be able to use it to benefit the patient.

Consider this example. A 5-week-old infant had severe neonatal hypoxic-ischemic encephalopathy and remains on a ventilator. The magnetic resonance image shows extensive brain damage. In order to maintain optimal care and plan for the future, the clinical team has recommended a tracheostomy and gastrostomy. The neurologist is asked to provide an estimate of the child’s developmental potential, knowing that the family is also looking into withdrawal of life support and organ donation after cardiac death. The neurologist realizes the great diffficulty in predicting outcomes in this context, but also is aware of the literature that predicts severe neurological disability in this case. How should the neurologist present this information? Emphasizing the small but real possibility of an outcome that might be better than expected could help the family choose to maintain support and plan for rehabilitation. Emphasizing the greater possibility of a poor outcome will likely result in the child’s death. Ultimately, it is the family’s decision to make, but the neurologist’s role in telling the truth about the prognosis will have a significant impact on the family’s decision and on the child’s life.

Physicians are often called upon to write letters for patients. These letters may be used to secure benefits for the patient in school, work, or other settings. Letters may also be requested to assist the patient or family in obtaining insurance coverage for tests or treatments, or in obtaining help with housing and utilities (heat, electricity, or telephone services). In general, physicians would seem to be required to do what is best for the patient, but what if this seems to conflict with a duty to respect the law and to do what is best for the community?

Consider this example. A 10-year-old boy had Lyme meningitis 5 years ago and now is experiencing problems in school. The neurologist has recommended neuropsychological testing to help define the child’s school-related needs, but the family’s insurance company has stated that it will not cover testing for educational purposes. The neurologist is asked to write a letter to support the request for insurance authorization for the testing. Should the neurologist request the testing in order to define the cognitive implications of possible chronic Lyme encephalopathy (since the insurance company will cover neuropsychological testing for medical indications), even though the neurologist does not believe that the child has this condition?

In a more general sense, is it ever ethical to lie to an insurance company for the benefit of the patient? The question puts so many ethical principles in conflict that no single answer can be given that would apply in every case. One way to approach the question is through virtue ethics. Compassion and effacement of self-interest might support lying for the benefit of the patient, but following the virtues of integrity and fidelity to trust might indicate otherwise. In this context, each physician would have to develop a balancing of these virtues that he or she can live with in good conscience.

Physicians are often requested by insurance companies to prescribe older, cheaper drugs or to use generic products instead of new brand-name products. Indeed, in some insurance arrangements (such as full capitation), physicians may receive a financial benefit by limiting the cost of the patient’s care. Should a physician order expensive tests or prescribe expensive treatments anyway, if they are believed to be in the patient’s best interest? How much is a physician responsible for the overall cost of health care in society, and how should this responsibility be balanced against the responsibility to do what is best for the patient?

Consider this example. A 14-year-old girl with epilepsy had a breakthough seizure after having been well controlled for several years. She had been taking brand-name oxcarbazepine but was recently switched to the generic equivalent. The neurologist checks the blood level and finds that it has dropped from 20 to 10 mg/dL. Should the neurologist rewrite the prescription to specify brand name only (which increases the cost of health care in general), or just increase the dose of the generic product?

Physicians are members of their community and ethical questions can arise in the course of fairly ordinary activities. For example, suppose a physician is in church and observes a young child who is being presented for baptism. The physician suspects the child may be showing signs of autism, which the child’s parents do not seem to recognize. Knowing the importance of early diagnosis and treatment of autism, should the physician say something to the family or to the minister? This may be a situation where spiritual ethics might help guide the physician toward an answer.

Clearly, application of general principles of medical ethics to complicated clinical situations is anything but straightforward. None the less, physicians should make a genuine effort to do the best they can. The requirement to make the patient’s interests paramount would appear to be the defining standard in most cases. In doubtful or difficult situations, consultation or discussion with one’s colleagues (either formally or informally) is probably a good idea.

Duties as a Pediatrician

Many (but not all) child neurologists have trained as pediatricians and have some experience with the roles and responsibilities of a pediatrician. Most also have frequent contact with referring pediatricians who provide primary care for the patients seen in neurologic practice. The role of a pediatrician often involves primary care in the United States, but in other countries and other settings the pediatrician is a specialist who manages diseases involving other parts of the body. Child neurologists interact regularly with pediatric specialists involved in the care of children with complex disorders. Thus, there is an overlap between the duties of the child neurologist and the pediatrician that warrants some exploration.

Primary care involves the longitudinal management of all of the health issues of the child and family, and requires a commitment to being accessible, available, and capable. Effective primary care is compassionate, culturally competent, and comprehensive, and includes coordination and oversight of all of the child’s health problems [Tonniges and Palfrey, 2004]. Most child neurologists do not provide this type of primary care. Many do, however, provide many of the same elements of care for children whose neurologic problems constitute the main health issues. These include older children and adolescents who are otherwise healthy but have on-going neurologic problems, as well as patients with complex neurologic problems whose general health problems are fairly straightforward. Child neurologists have no obligation to take on this role and may confine their role to that of a consultant. Those who do take on this role would seem to have the same duties as those of a primary care physician, as listed above, except that their duties are limited to management of the child’s neurologic problems.

All physicians who care for children (including pediatricians and child neurologists) have a duty to understand and respect the child’s status as a minor. This duty has two elements: one involves promoting the child’s emerging development into an adult, and the other involves protecting the child from harm. Promoting the child’s development involves an understanding of normal child development and helping the child succeed as much as possible. Child neurologists ordinarily monitor the child’s progress in school and provide whatever assistance is possible to secure special education and therapeutic resources needed to promote the child’s development. Although the primary responsibility rests with the parents and the school, the child neurologist should be available and capable of providing help when needed.

Because children are not capable of making sound judgments about their own best interests, others must judge for them what is in their best interests. Social convention and the law generally recognize that parents are the best judge of what is in the child’s best interest, but this recognition is not absolute. A substantial body of law and regulation governs when and in what circumstances a parent’s rights may be superseded. Consideration of these laws and regulations is beyond the scope of this chapter [see Beauchamp and Childress, 2001; Bernat, 2008]. Child neurologists may be called upon to give an opinion about what medical care is in the child’s best interest. They may also be asked about whether they believe the child is capable of independent judgment. Persons who are 18 years old are usually assumed to be fully autonomous adults who are capable of giving informed consent for medical treatment. Many neurologic patients with significant intellectual disabilities are not capable, however; therefore, others must be designated as guardians for them. The child neurologist should be aware of what is involved in determining the need for guardianship, and assist the patient and family in whatever way is appropriate.

The United Nations [1990] has formulated a declaration on the rights of children, the Convention on the Rights of the Child, which contains 54 Articles that stipulate the rights of the child to life, safety, health, education, and a decent standard of living. Article 23 states that a mentally or physically disabled child should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance, and facilitate the child’s active participation in the community. It further recognizes the rights of the disabled child to special care. Article 24 states that the child should have access to quality health services, including primary care, preventive health care, and treatment of health conditions. Although the Convention’s declaration is not legally binding, it provides a strong moral statement about the internationally accepted obligations of states to protect the best interests of all children. Awareness of this international consensus may be helpful to physicians who are advocating for children under their care.

Duties as a Neurologist

Child neurologists are specialists or subspecialists and have duties that correspond to this role. They provide longitudinal care for children and adolescents with chronic neurologic disorders, and this includes corresponding duties that resemble those of primary care, as described previously. They also provide consultative opinions about diagnosis and treatment, both in outpatient and inpatient settings. As a consultant, the child neurologist has a duty to provide a fair, impartial, accurate, and (as much as possible) evidence-based statement about the facts of the case. The child neurologist’s principal role in evaluating ethical dilemmas is to clarify the facts. This is a critical role, because accurate data are essential for making sound ethical decisions [Coulter et al., 1988]. Indeed, poor or questionable ethical decisions often are due to inadequate specialized medical information regarding the diagnosis, treatment, and/or prognosis of a case. This problem is illustrated well in cases when the patient is in a vegetative state. Some may consider such a state permanent and hopeless after only a few weeks and seek to withdraw life-sustaining treatment. The child neurologist, acting as a consultant in such a case, would inform the family and caregivers about the published data indicating that the vegetative state is not considered permanent until 3 months after an anoxic injury and 12 months after a traumatic brain injury [Multi-Society Task Force on PVS, 1994]. The family may be given some hope for possible recovery of consciousness before these time periods, which may call for continued treatment and rehabilitation.

The role of an expert consultant has certain limitations. For the most part, child neurologists are experts in child neurology and not in ethics. The child neurologist should distinguish between opinions regarding the neurologic data and opinions regarding the ethical issues involved in cases that present ethical dilemmas. The child neurologist’s opinion about the ethical issues is one voice among many and is not necessarily the most important or determining opinion. Normally, the family’s opinion about the ethical issues is the most important. The views of the extended family and the family’s religious or faith community are often important. In many cases, the views of individuals who have had long-term, close, and personal relationships with the patient (e.g., friends, personal attendants, or group home staff) also deserve consideration. Child neurologists, as well as other physicians and nurses involved in such cases, should be careful not to impose their own ethical opinions or attempt to override the expressed opinions of the patient’s family and friends.

The child neurologist also has a duty to maintain expertise in the field. This is a duty that is shared with all medical specialists. Expertise is maintained through continuing education, which may involve reading journals, attending conferences, and discussing issues or cases with colleagues who may have more knowledge or experience regarding the issues in question.

Research

Many child neurologists are involved in research, which carries additional ethical duties. One of the challenges for child neurologists involved in clinical research is to separate their ethical obligations as investigators from their ethical obligations as physicians responsible for treating patients who may be enrolled as subjects in the neurologist’s research study. This challenge is harder than it may seem. In the United States, research ethics is based on the Belmont Report [1979], which adopted the principles of autonomy, beneficence, and justice (see earlier discussion) as the basis of research ethics. In general, the researcher’s principal ethical obligation is to protect the rights and welfare of the research subject [Dunn and Chadwick, 2004]. Poorly designed research studies are inherently unethical because they are not likely to produce sound scientific results, and thus they place the patient-subject at risk for harm without the prospect of benefit. The researcher’s ethical obligation as an investigator to pursue well-designed scientific studies is secondary to his or her obligation to protect the subject involved in the research. When the research subject is also a patient, this means that the child neurologist-investigator’s clinical duties to the patient are ordinarily stronger than his or her duties to enroll subjects in the research study.

In the United States, federally sponsored research is governed by the Code of Federal Regulations, which stipulates the roles and responsibilities of researchers and institutions involved in clinical research [see Dunn and Chadwick, 2004]. Researchers are required to obtain review and approval of the research study by a properly constituted Institutional Review Board for the Protection of Human Subjects in Research (IRB). Child neurologists involved in clinical research have legal and ethical obligations to follow these rules and regulations. In general, ethical issues in research should be considered when the study is being designed, not just at the end of the process when IRB review and approval are requested. The researcher should be knowledgeable about ethical issues in research. If the researcher has questions about ethical aspects of study design or protocol development, most IRBs will provide assistance. Building ethics into the study from the beginning will usually prevent problems later during the process of IRB approval, as well as during continuing review and oversight of the study.

Personhood

Critical ethical problems in child neurology often center on the question of personhood. Some authorities [Field and Behrman, 2004] consider this the most important problem in bioethics. Indeed, the history of the concept of personhood can be traced to Plato and Aristotle [Mahowald, 1995]. This history includes many rich and varied discussions based on several key questions. Should all human beings be considered persons, in a moral sense, to whom ethical duties are owed? Or are some human beings (such as fetuses or infants with anencephaly) “nonpersons” who can be treated differently than “real persons”? Is personhood absolute or are there degrees of personhood, and thus degrees of ethical obligations? Can personhood be lost while human existence persists – for example, in a vegetative state? Are there reliable and valid criteria that one can use to determine whether a human being is a person?

The capacity for rational thought is often considered to be what separates human persons from nonpersons, yet rationality may not be sufficient by itself. Plato, Aristotle, Augustine, Aquinas, and other classical philosophers emphasized the unity of reason and spirit, or soul [Mahowald, 1995]. Current religious and theological arguments maintain this position by arguing that all human beings have a God-given soul, which confers moral personhood and that requires ethical respect. Berrigan wrote that the presence of God is most apparent when we are with those who are unable to respond to us [Berrigan, 2000]. These arguments are unconvincing to those who do not share the underlying religious premise, however.

Enlightenment philosophers, such as Locke and Kant, redefined the issue to emphasize self-consciousness, or the rational ability to have a concept of oneself as a unique being and thus to exercise autonomy or free will. This definition would suggest that human beings who do not have this ability may not be fully human persons in a moral sense. Modern thinkers have sought to identify criteria by which one may determine whether personhood is present. Fletcher [1979] identified a number of such criteria, including self-awareness, self-control, a sense of one’s history and future, the capacity to relate to others, and the ability to communicate. For Fletcher, IQ could be used as a surrogate measure of these abilities, so that an IQ below 20 meant that one was not a person. Utilitarian theory has been used to arrive at essentially the same position [Kuhse and Singer, 1985]. This position has been criticized on philosophical grounds [Byrne, 2000]. Hauerwas considered the question of developing criteria for personhood “fundamentally wrong-headed” because it ignores the real question, which is how others should relate to those who may not meet these criteria: “I suspect that we are human exactly to the extent we can reach out and provide care to those who have no right to it” [Swinton, 2004].

The question of what it means to be human can be considered from an anthropologic and historical perspective. Fernandez-Armesto [2004] identified six challenges to our understanding of human personhood:

Considering these challenges, he concluded that the boundaries of what we consider “humankind” or human personhood, from an anthropologic perspective, are by definition necessarily indistinct [Fernandez-Armesto, 2004].

What does this mean for child neurologists? Many patients (such as infants with severe neurologic disabilities, children with profound intellectual disability, and adolescents in a persistent vegetative state) would not meet the criteria of personhood advocated by Fletcher. Are physicians’ ethical obligations to them any less than to other patients who are more obviously human persons, or do theories of justice require physicians to provide more compensatory resources to help them function more effectively in society [Veatch, 1986]? Theories of beneficence argue that physicians should attempt to promote and protect the patient’s quality of life as perceived by the patient, regardless of what physicians may think of it [Beauchamp and Childress, 2001]. From a clinical perspective, parents rarely regard their children with severe disabilities as nonpersons. Child neurologists, working together with parents and other caregivers, will want to focus on doing what is best for the child and family. Distinguishing between moral status and moral agency [Mahowald, 1995], physicians may conclude that patients whose moral status is questionable because of presumably limited personhood are still moral agents with human rights to whom those with greater moral status have ethical obligations as members of human society.

Euthanasia

The challenge of euthanasia is one of the most important ethical issues in neurology and medicine today. Conventional thinking distinguishes between passive euthanasia (not doing something to preserve life) and active euthanasia (doing something to end life). Passive euthanasia is generally considered acceptable medical practice in some situations, whereas active euthanasia is not (and is illegal in most situations). However, this distinction may be vague and confusing in some cases. Legitimate and illegitimate applications of both passive and active euthanasia can be identified. In their discussion of the ethical principle of nonmaleficence, Beauchamp and Childress [2001] argue for recasting the distinction in terms of respect for autonomy and serving the patient’s best interests. They argue that, in some carefully specified situations, physicians may legitimately assist patients in dying (active euthanasia) if the action responds to the patients’ wishes and serves their interests.

Passive euthanasia (withdrawal of life-sustaining treatment) is often considered for persons who are in a persistent vegetative state (PVS). Consensus exists regarding the medical aspects of a vegetative state in children and adults [Multi-Society Task Force on PVS, 1994], but the ethical and legal issues are more contentious [Jennett, 2002]. With respect to children and adolescents, two questions arise:

The Multi-Society Task Force on PVS included representation from the Child Neurology Society and reviewed the literature to address these questions. The Task Force concluded that the concept of the vegetative state cannot be applied to preterm infants, and the diagnosis of a vegetative state is difficult to make before 3 months of life. An exception to this statement may be made for infants with true anencephaly who, by definition, are in a vegetative state. Caregivers are often confused when patients demonstrate subtle or minimal signs of responsiveness, which would suggest that the diagnosis of PVS is no longer accurate. Patients who demonstrate minimal but definite behavioral evidence of self or environmental awareness may be diagnosed instead as being in a minimally conscious state, which is distinct from the vegetative state. Diagnostic criteria exist for distinguishing between a minimally conscious state and a vegetative state in children [Ashwal and Cranford, 2002]. Data also exist regarding the prognosis for children and adolescents in a minimally conscious state or a vegetative state. It is possible to distinguish between a mobile (ability to lift the head, roll over, or sit) and an immobile minimally conscious state, but studies have found little difference in survival between children in either state [Strauss et al., 2000]. For children 3 years of age in a vegetative state or an immobile minimally conscious state, 12–18 percent had evolved to a state better than a minimally conscious state after 3 additional years. For children in a vegetative state from birth to 1 year of age, median survival was 4.2 years and life expectancy was 7.2 additional years. For adolescents still in a vegetative state 1 year after onset, median survival was 5.2 years and life expectancy was 10.5 additional years [Strauss et al., 1999]. Unpublished clinical experience suggests that these survival estimates are probably too conservative, since currently available medical and nursing care may permit much longer survival in some cases.

Withdrawal of life-sustaining treatment (including nutrition and hydration) is generally considered legally and ethically appropriate for children and adults who are in PVS [Jennett, 2002], although others disagree. For example, Pope John Paul [2004] argued that the withdrawal of assisted (artificial) nutrition and hydration “has to be considered a genuine act of euthanasia by omission, which is morally unacceptable.” For Roman Catholics, this is an important opinion that should be considered carefully in the on-going debate about the care of patients in a vegetative state [Shannon and Walter, 2004]. The legal and ethical standards for withdrawing life-sustaining treatment from patients in a minimally conscious state are much less clear, since such patients theoretically could feel pain and suffering [Ashwal and Cranford, 2002].

The concept of futility implies that a proposed treatment or course of action offers negligible potential for overall patient benefit, whether that potential is considered quantitatively in terms of the probability of success or qualitatively in terms of the expected impact on the patient’s quality of life. The question often arises when patients or families request treatment that caregivers do not believe is appropriate. Rather than focus on strict guidelines or policies to follow in such cases, physicians are encouraged to develop fair and transparent procedures for decision-making that encompass the views of all parties involved in these difficult situations [Shevell, 2002].

Voluntary active euthanasia is much more controversial than passive euthanasia [Smith, 1997]. Often called mercy killing or physician-assisted suicide, it is opposed by the American Medical Association and is illegal in all of the United States, except in Oregon. On the other hand, it is legal in some countries, most visibly in the Netherlands, where it has been extended to include children younger than 12 years of age. Following Beauchamp and Childress [2001], many people wish to be able to exercise their autonomy rights and to choose death (with or without medical assistance) when this is a conscious, carefully considered, noncoerced, personal decision they make for themselves. Whether it is ever ethical for others to make this decision on behalf of nonautonomous persons (such as children and adolescents) is not at all clear (even in the Netherlands), and no convincing ethical argument has been advanced so far to support a consensus on this point.

Organ Donation

The question of whether or not to withdraw life support takes on a special urgency when the possibility of organ donation is present. Organ donation is often considered after a diagnosis of brain death has been made, but the number of organs available in this context is limited. Efforts to increase the number of organs available for donation has recently focused on developing policies and procedures to be followed in cases of cardiac death. This is called “donation after cardiac death,” or DCD. Patients become candidates for DCD if they are on life-sustaining treatment (such as a ventilator) and a decision has already been made to withdraw the life-sustaining treatment. Patients in PVS who are not on a ventilator are not candidates for DCD, since withdrawal of nutrition and hydration leads to death too slowly for organs to be recovered. When the family consents to DCD for a patient who is a good candidate, the patient is taken to the operating room, where life support is withdrawn and the medical team waits for the patient’s heart to stop beating. After a reasonable interval has passed to be certain that cardiac arrest is irreversible (generally a few minutes), cardiac death is declared and surgery for organ procurement begins [Steinbrook, 2007]. Current DCD policies do not evaluate the decision to withdraw life support, however. For example, a DCD procedure could be implemented if parents requested that life support be withdrawn from a child who is in a vegetative state 1 month after a traumatic brain injury, even though the child might have recovered consciousness and had an acceptable quality of life if life support had been maintained [Coulter, 2010]. Current DCD policies do not consider whether the decision to withdraw life support is ethical, since DCD procedures begin only after this decision has already been made. Thus, a key ethical issue in DCD would seem to consist of careful scrutiny of the decision to withdraw life support prior to DCD. This scrutiny provides a key role for the child neurologist in clarifying the diagnosis and prognosis.

Perfection and Neuroethics

The attempt to create more perfect children is universal and perhaps understandable. Parents do not wish to create a child whom they believe to be imperfect [Murray, 1996]. Some deaf parents may wish to create a child whom others might consider imperfect because of deafness but whom they consider more perfect because of the child’s ability to participate in deaf society [Middleton et al., 2001]. Even parents who love and accept their child’s imperfections would likely still prefer to have those imperfections disappear if possible. In asking whether “the retarded suffer from being retarded,” Hauerwas [1986] argues that individuals project on them their own fears of what it would be like to have an intellectual disability and thus fail to imagine what living with such a disability is really like. Obversely, people desire perfection for their children because they value perfection in themselves.

The desire for perfection may be a relevant consideration when parents must make decisions about life-sustaining treatment for infants and young children faced with the prospect of lifelong severe disability. Often, the child is still dependent on life-sustaining technology, the withdrawal of which will result in the child’s death. The prognosis may be somewhat uncertain and likely to become clearer with time [Coulter, 1987]. Yet if the parents wait, the child’s medical situation may stabilize and no longer require life-sustaining technology. Parents who are relatively intolerant of imperfection (lifelong severe disability) may thus choose to withdraw life-sustaining treatment before the exact prognosis is clarified, rather than wait and lose the opportunity to choose. Another factor that may influence the decision to withdraw life-sustaining treatment is the opportunity it provides for DCD, which some parents may consider a better outcome than survival with lifelong severe disability. This situation is very difficult for the child neurologist caring for the patient, whose principal duties are to provide accurate data about diagnosis and prognosis and to support the family’s decision [Glass, 2002]. Although some observers think that parents may be making these choices earlier and withdrawing support more often than they did in the past, little or no published data are available to verify this observation or to explore why this might be true. Literature on the social and spiritual significance of disability [Eiesland, 1994; Vehmas, 2004] points out that individuals with disabilities often perceive their quality of life to be better than those without disabilities might expect. On the other hand, some contemporary philosophers argue that personhood is limited in the presence of severe disability, and withdrawal of life support is appropriate [Kuhse and Singer, 1985]. Perhaps child neurologists can do no more than be aware of these issues and discuss them with families who are faced with these difficult choices.

The issue of perfection is framed more starkly when considering what has been termed cosmetic neurology [Dees, 2004]. Chatterjee [2004] distinguished between the goal of medicine to treat disease and the goal to enhance quality of life by improving normal functions. Should drugs be prescribed to enhance strength, coordination, attention, learning, memory, mood, and affect in those who are neurologically normal? He identified four ethical dilemmas related to cosmetic neurology:

Furthermore, if the advent of cosmetic neurology is inevitable, how will neurologists respond when their patients request it? Child neurologists will be faced with an additional ethical question: Should parents be able to request cosmetic neurology for their children? Clearly, much ethical thought will be needed to address these questions.

Another aspect of cosmetic neurology considers whether and to what extent parents should be able to modify their children who have significant neurological disabilities. What are the ethical boundaries of such treatment? Suppose a drug were available that might inprove cognitive function in a child with intellectual disability, but which also had significant potential adverse effects, including death. (Indeed, drugs of this type are being studied.) Should parents be able to choose this treatment for their child? Suppose a treatment were available that would attenuate the growth of a child with severe disability, so that the child would remain small and immature and the family would be able to continue to care for the child at home [Gunther and Diekema, 2006; Diekema and Fost, 2010]. Should parents be able to choose this treatment for their child, even if the treatment is irreversible and the expected outcome is unproven? These are difficult questions and no general consensus exists regarding how to answer them. At this point, it is probably best to consider them in a research context and apply the ethical guidelines that are appropriate for conducting clinical research [Dunn and Chadwick, 2004].

Cosmetic neurology is one aspect of what has been termed neuroethics. This concept incorporates the application of modern neuroscientific research to clinical problems and to general society. Related to this, the term neurotheology has been coined to encompass the application of neuroscientific research to understanding religious and spiritual experience [Joseph, 2002]. Functional neuroimaging now allows us to evaluate personal information such as personality traits, social and moral attitudes, individual preferences, deception, guilt, and thoughts [Farah and Wolpe, 2004]. The principal ethical challenges of these applications of neuroimaging relate to privacy, autonomy, and respect for the person.

Another aspect of neuroethics is the use of new genetic knowledge to diagnose and treat neurogenetic disorders. Ethical issues in genetic diagnosis include stigma and privacy, whereas gene therapy raises ethical issues similar to those of cosmetic neurology [Avard and Knoppers, 2002]. Scientific progress is inevitable and desirable, and the challenges of neuroethics will become even more important in the near future. All neurologists must be aware of these ethical challenges and become informed about appropriate responses as they are developed.