Clinical ethics—the business of being human in the interchange between physician and patient—has been an integral part of that interchange for as long as there has been a profession of medicine. Until the past several decades, however, it was assumed that being a physician meant being ethical; that everyone’s ethics were the same (or at least of equivalent worth); and that there was no underlying theory or set of standards necessary for ethical decision making. In part, this state of affairs was a reflection of the simplicity of life in general, and of medicine in particular. With advances in technology, more options became possible—options to evaluate new forms of treatment (clinical research) as well as to utilize proven diagnostic and therapeutic modalities (with their inherent risk-benefit calculus). In today’s world, questions of who should make which decisions in what circumstances, as well as who could and should pay for the costs of implementing those decisions, are being asked. As these changes have taken place, particular judgments no longer stood in isolation, but rather led to the formulation of rules that could govern in similar situations; a recognition of the principles upon which such rules might be based; and the development of theories underlying the principles—much as an understanding of anatomy, biochemistry, pathophysiology, and other basic sciences made it possible to clarify approaches to the complicated problems of stroke (for example). Some theorists appealed directly to conscience, developed and refined in reflection on individual cases without the formality of the process just described. Underlying it all, however, was the realization that ethical problems arise in almost any clinical situation, and that such problems should be addressed just as systematically as any dimension of the given clinical situation. This realization called forth a new academic discipline (biomedical or clinical ethics) out of what previously had been purely philosophical and, in a sense, impractical thought (theoretical ethics). From this generic discipline, there has evolved a particular focus on neurologic ethical dilemmas (neuroethics).
In reality and from the start, the discipline of ethics found fertile ground in neurology, where ethical theory met real-life problems such as brain death; the vegetative state; and other conditions of incapacity, neurogenetic diseases, and a whole gamut of issues at the end of life. More recently, questions relating to neuroenhancement, stem cell research, and other matters have been added to the stew. Early on, this meeting generated encounters with the law and the recognition that what is ethical may not be legal, and vice versa. To plow the field, one must first understand the background of ethical theories; develop a structured approach to the recognition and solution of ethical problems; and understand how that approach helps to deal with particular problems, as well as developing an effective interface with the law.
I. ETHICAL THEORIES
Before accepting any ethical theory as a basis upon which practical judgments can be made, ultimately and validly, one should inquire whether the basis of theory is adequate to the task by virtue of its satisfying certain criteria, and then look to the basis of the theory to determine its usefulness and applicability. No one theory satisfies every clinical situation. Some are better adapted to one circumstance and others to another, while yet additional circumstances demand a hybrid of complementing theories.
A. Criteria of an adequate theory. Beauchamp and Childress set forth a series of questions that should be answered in the affirmative with regard to any particular theory if that theory is to be regarded as adequate and helpful in a given clinical situation. Their questions are as follows:
1. Is it clear? Or is the language by which the theory is formulated so complex as to muddle the situation?
2. Is it coherent? Coherence is a necessary (although not sufficient) criterion of an adequate theory. It is missing when theory elements are in contradiction, one with another.
3. Is it complete, or at least comprehensive? Does the theory deal with all of the major questions raised in diverse clinical circumstances, or are there serious concerns on which the theory is silent?
4. Is it simple? Are there enough norms so that the theory can be used without confusion by clinicians, or are there so many that the answer becomes lost in practice?
5. Can it explain and justify the conclusions reached with its help? Or does it simply set forth in other words a preexistent, intuitive belief?
6. Does it yield new insights? Or does it only serve to repeat old convictions?
7. Is it practical? In short, does it provide a useful answer to the clinical problem or one that is attractive in theory only?
B. Types of ethical theory.
1. Utilitarianism. This theory looks to the consequences of acts and holds that an action is good if it produces more benefit than harm. It is the basis of the risk–benefit analysis, regularly used by clinicians in deciding and discussing with patients a recommended course of action in a given clinical circumstance. Problems arise when one looks for definitions of risk of harm and benefit (to or for whom?); to the relation between the individual acting or deciding and the society of which that individual is a member; and at single actions, each in isolation, or at classes of actions governed by rules that appeal to the principle of utility.
2. Obligation-based theory. The test of this theory is the categorical imperative of Immanuel Kant: The reason for an action should apply to everyone, and in all situations; moral rules are absolute. Problems arise when such rules—often abstract and legalistic, rather than relational—are found to be in conflict with each other in a particular circumstance.
3. Virtue-based, or character, ethics. This approach looks to the person acting and to the motives and desires that propel that person’s actions. Because even the most virtuous person can act wrongly—even for the best of reasons—a viable ethical theory cannot rest on character alone.
4. Rights-based ethics, or liberal individualism. Rights are justified claims that an individual or group is entitled to make upon a society at large. Such claims, while protecting the interests of an individual, at the same time may impose a corresponding obligation upon others. Rights may be positive (requiring an action by others) or negative (precluding such action). Overemphasis on rights may neglect the legitimate demands of the society at large.
5. Communitarian ethics. Rather than the rights of the individual, communitarians look to the needs of society at large. Prescinding from how such needs may be articulated by whom, an overemphasis on this aspect of morality may neglect the legitimate interests of the individual.
6. An ethics of care. Sometimes referred to as feminist ethics, the focus of this approach is on a caring, attached relationship between persons and on the implications of such a relationship. Impartiality and balance may suffer as a consequence, the result being a less complete and practical system than obtains with other theories.
7. Casuistry. This term invokes an image of Jesuitical sophistry, but really refers to the need to make decisions according to the particulars of any given situation. In reality, it was St. Thomas Aquinas who first described “situation ethics,” a much (and properly) maligned theory when reduced to the proposition that all morality is relative, dependent solely on the circumstances of an action. Every detail of the case is examined and weighed, and a judgment reached often by analogy to similar cases. The connection between cases provides a maxim to rule the case—but which maxim is given most credence in any particular situation, and why?
8. Ethics based on principles, or “common morality.” A “bottom up” approach to validating particular judgments looks to rules that govern such judgments, and from rules to the principles from which they are derived. Four such principles are woven into “commonsense” morality—an ethics that grows out of the nature of human beings, one that is simply put as “do good and avoid evil.” The principles in question are as follows:
a. Respect for the autonomous choices of other persons (autonomy).
b. The obligation not to inflict harm intentionally (nonmaleficence).
c. Actions taken for the benefit of others (beneficence).
d. A fair, equitable, and appropriate distribution of goods in society (justice).
Critics of the principlist approach refer to its elements as a mantra (specifically, the Georgetown Mantra, because its authors—Robert Beauchamp and James Childers—were at Georgetown University when they articulated it) without substance; one that does not offer a schema for resolving conflict when more than one principle applies; a ritualistic incantation without a unifying, overriding theory to govern its use. When all is said and done, similar objections can be leveled against any ethical theory. The heart of the matter is to recognize the (ethical) problem and to admit with honesty which approach to solving it is used and why. In today’s medical climate, however—when physicians have become providers, patients are now clients, and any cost is a medical loss to the insurance company (or governmental agency) that funds a managed care plan (see III.C.)—any of these theories, meant to guide ethical decision making in the practice of medicine, comes in conflict with the principles of business ethics. Those for whom the principles of business ethics are paramount have a primary fiduciary duty to the providers of capital—taxpayers, investors, and society at large—whose goals may be vastly different than those of traditional medicine. In a certain sense, the principle of justice comes to the fore in resolving these conflicts. Practical solutions (see III.C.) that preserve the essentials of the theory on which the physician’s judgment and actions are based in any particular situation must be sought as a way out of such dilemmas.
II. CASE METHOD APPROACH TO CLINICAL ETHICS
John Fletcher and his associates developed a case method approach to the recognition and solution of ethical dilemmas that mimics standard decision making in medicine. The elements of the method are as follows:
A. Assessment. What is the nature of the medical problem and the relevant context in which it occurs? What are the options for therapy, their foreseeable risks and benefits, their short- and long-term prognoses, and the costs and resources (or mechanisms for payment) that are available? What do the patient, family, and surrogate decision makers want? What does the patient need, and what other needs may compete with that need? Are there any institutional, societal, or legal factors impinging on the patient or problem? What are the ethnic, cultural, and religious backgrounds from which the problems have arisen?
B. Identification of ethical problem(s). Which ethical problems, ranked in order of importance, are self-evident, and which are hidden? Which ethical theories are most relevant to such problems? Are there analogous cases in medicine or law, and if so, how so they apply? Which guidelines are most appropriate?
C. Decision making and implementation. What are the ethically acceptable options for solving the problems, and which are most acceptable? What justifications can be given for the preferred resolution of the problems? How can the preferred resolutions of the problem be accomplished? Is ethics consultation necessary or desirable? Is judicial review necessary or desirable?
D. Evaluation. This is an ongoing process that seeks to recognize missed opportunities and correct unworkable solutions. The process carries a preventive dimension that may propose changes in policy or provide educational opportunities to minimize the chance that similar problems will occur.
III. ETHICAL DECISION MAKING IN GENERAL
At the heart of any interaction between physician and patient is the matter of who decides what shall be done when. The physician brings to this interaction experience, knowledge, skill—and a set of personal values that may or may not be the same as, or even compatible with, those of the patient. In years past, the physician’s judgment ruled supreme. Today that judgment is tempered not only by a primacy of respect for the wishes of the patient, but also by the rules and regulations of various health care plans as well as by statutory and case law.
A. The primacy of the patient. A competent patient with the capacity for decision making can and should decide—even before the fact, anticipating the future through advance directives (e.g., “living will” and durable power of attorney for health care decisions [“health care proxies”]). Because many neurologic illnesses are chronic and inexorably disabling, often leaving the person without the capacity to decide, it is wise to introduce discussion of advance directives early in the course of caring for such a patient. Indeed, federal directives now require patients to be asked, on admission to hospital, whether they have executed, or wish to execute, an advance directive. Abond of trust should first be established, so that the patient does not interpret such discussions as a plan to abandon them at the end of life—an element of ethical decision making missing from the federal requirement. It is important to emphasize that decisions may change as a situation evolves.
B. Surrogate decision making. When capacity is lost, surrogates may be called upon to decide for the patient. Unless previously identified and appointed (in a health care proxy), the appropriate surrogate may be selected according to a hierarchy spelled out in state law. In extreme circumstances, a court-appointed surrogate may be necessary. Surrogates may strive to determine what the patient would have wanted (substituted judgment standard) or may try to decide what is best for the patient (best interests standard). The former standard is generally thought to be better, avoiding as it does conclusions made by one person (the surrogate) about another’s (the patient’s) “quality of life.” Courts may require “clear and convincing evidence” of what it is the patient would have wanted under the circumstances in question. However, because such a scenario rarely exists in fact, and people often change their minds, requirements of this sort are most impractical. In all instances, it is wise to seek consensus and to continue to act in favor of life until that consensus is reached. It may take time to develop consensus, even when a surrogate has previously been appointed, especially when capacity is lost suddenly and without warning (e.g., after stroke). Physicians should be sensitive to the possibility of ulterior motives on the part of surrogates, fiscal, or otherwise.
C. “Managed care” plans. The spiraling cost of health care, among many contributing factors, has fueled an ongoing process of “health care reform”—much of which is basically about money. Because an immediate effect of health care decisions is the expenditure of money, a feature common to many proposals for such reform is a process requiring approval before decisions can be implemented. Sometimes the process has at its center a “gatekeeper”—often a primary care physician, who may be guided by situation-specific protocols. The rewards built into the system are keys to its ethical dimension. Under traditional fee-for-service medicine, the more a physician did, the more that physician was paid. Often under “managed care,” the less a physician does, the more that physician is paid. The concept of “managed care” emphasizes the physician’s obligation to all patients covered by a given plan—indeed, to society at large (i.e., putting the principle of justice foremost). If a physician hews to the primacy of the patient (the principle of autonomy) as the guiding principle in ethical decision making (see III.A.), any decision suggested by a physician and made by a patient should be made in the particular patient’sbest interest. No tests should be done, no treatment instituted, without that interest in the forefront of the physician’s mind. If the system stands in the way of such decisions, physicians should oppose the system on behalf of their patients, vigorously—but fairly as well, not “gaming” the system with fabrications and the like. “Managed care” plans that reward physicians with incentives that limit or compromise care (e.g., by restricting the time that can be spent with a patient, denying access to appropriate consultants, and requiring the use of generic drugs when they may be less effective or more toxic) should be avoided.
To guide the physician through this narrow maze of ever-diminishing resources at a time of ever more complex and expensive options for diagnosis and therapy, the field of evidence-based medicine has developed. Practice guidelines, critical pathways, and similar approaches are being articulated from a wide range of sources. Physicians are well-advised to listen to and follow such approaches unless the approach is of the gobsat (“good old boys sitting around a table”) variety.
IV. APPROACHES TO PARTICULAR PROBLEMS
A. “Brain death.” An unwanted consequence of the development of more effective intensive care was the recognition that patients whose brains had suffered complete and irreversible loss of all brain function could continue to manifest adequate cardiovascular, renal, and gastrointestinal functions, as long as pulmonary function was supported by a ventilator. The presence of death—previously identified by the absence of heart action and breathing—could no longer be affirmed in such patients. This state of affairs called for the development of a new set of criteria by which the presence of death could be recognized—not for a new definition of death. Once those criteria are satisfied, the patient is dead—an unsettling conclusion for many to whom a warm body with a strong pulse and a chest moving in rhythm with a machine cannot be dead, must be asleep.
1. “Whole brain” criteria. Death of the whole brain is recognized in a normothermic body when loss of brain function results from an identifiable, irreversible, structural lesion, in the absence of sedative–hypnotic drugs or other, potentially reversible, metabolic conditions. Clinical examination for death of the whole brain requires the absence of brainstem reflexes (e.g., oculocephalic and ice water caloric stimulation evokes no eye movement; pupils are dilated and fixed to light; corneal responses are not present) and no ventilatory movement when the ventilator is stopped after a period of ventilation with 100% oxygen, even though the PCO2 increases above 60 torr without ventilation. Recognition must be affirmed with a second examination, separated in time from the first by a variable interval, dependent on factors such as age and clinical cause. The interval may be specified by local statute or hospital policy. As with the use of cardiorespiratory criteria to recognize the presence of death, the patient is dead when the criteria are satisfied—that is, when the second examination affirms the findings of the first. A number of confirmatory tests are helpful when the clinical condition is compromised (e.g., when a patient has been in barbiturate coma after head injury) and may be required in certain circumstances (e.g., the patient is a child younger than 1 year). However, such tests are neither necessary nor sufficient to affirm the presence of death by themselves.
2. “Brainstem” criteria. In the UK, emphasis has been placed on the fact that the clinical examination on which the criterion of “brain death” is based looks only at the functions of the brainstem and not at whole-brain function. Higher cortical function is irrelevant in UK practice. This means that a person whose brainstem has irreversibly ceased to function but whose cerebral hemispheres are still working—a person with the so-called “locked in” syndrome—can be declared dead in the UK even though their cerebral hemispheres are still functioning. To the astute clinician, evidence of a working brain (in the form of eye movement, eyelid blinking, and the like) can usually be recognized, if one takes the time to look for it. However, in part because of this dilemma, many “brain death” policies and procedures in the US require a confirmatory test (e.g., isoelectric electroencephalography or cerebral angiography showing no flow within the cranium) to demonstrate that higher brain function is or must be absent to affirm the presence of “brain death.”
3. “Higher brain” death. Certain philosophers (e.g., Robert Veatch) have called for a new definition of death, one holding that death is the permanent loss of that which is essential to the nature of a human being—consciousness and cognition. Prescinding from the difficulty of establishing the criteria by which death, so defined, might be recognized, certain practical problems arise when one considers the implementation of such a definition (e.g., can someone in the end stages of Alzheimer’s disease, still breathing with normal vegetative function, be buried?).
4. Ethical considerations.
a. Telling the family. Once the physician has recognized the presence of death using “brain death” criteria, the fact of that recognition should be conveyed to the family and others with ethical standing in those circumstances. The physician should be aware that statutory law (as in New Jersey) or Department of Health regulations (as in New York) may make allowance for the family to reject the use of “brain death” criteria on religious grounds—in which case the physician may be required to rely on traditional (cardiorespiratory) criteria in identifying the fact that death has occurred. As in every interchange between physician and patient (including the extended patient-family and others), the physician should convey the fact gently, with compassion, and repeatedly until the fact is understood and accepted, if necessary. Although the family and others should not be burdened by being asked for permission to discontinue the ventilator (and thus, to allow cardiovascular death to ensue within a short time), the physician should be sensitive to reactions of denial and the like. The family should be given time to assimilate and accept the sorrowful fact of death. The physician should be sensitive to different ethnic and cultural heritages and to unresolved issues from the past, which can determine how long it will take for acceptance of that fact to occur. Terms such as brain death and life support should be avoided because they convey erroneous information. When someone is dead, the person is dead—not just the brain—and there is no longer any human life to support.
b. After “brain death.” In addition to solving the problem of inappropriate and theoretically indeterminable use of a scarce resource (an intensive care bed), recognizing the death of a person whose body can continue to be kept “alive” permits a utilitarian calculus for the benefit of others. This is true in two instances—organ donation and the continued nurturing of an unborn child beyond the point of viability inside the body of a mother who has died. Permission for either action must be sought in the standard manner (see III.A. and B.). Considerations of justice weigh heavily in these situations. Different ethical theories come to different conclusions with regard to either action.
B. The “vegetative state.” Although the condition is regarded by some as a “fate worse than death,” a certain proportion of patients who have incurred overwhelming damage to their cerebral hemispheres (from anoxia after cardiac arrest or from massive traumatic brain damage or stroke) may—after a period of coma—evolve into a state of “wakefulness without awareness” accompanied by sleep–wake cycles and essentially intact brainstem and autonomic functions. Other patients may reach this state at the end of a chronic degenerative process. In 1994, a multisociety task force published its consensus on the clinical, diagnostic, and prognostic features of this condition—a consensus—a consensus with the particulars of which some physicians disagree, particularly because the task force did not acknowledge the concept of a “minimally conscious state” or deal with implications of the “locked-in” syndrome and other stops along the way from coma to full consciousness. At the heart of the matter is the issue of whether a patient in a “vegetative” (or any related) state is truly unaware of all stimuli and has no conscious thought; when the condition can rightly be regarded as persistent or permanent; and what, if any, impact may be had by a variety of therapeutic efforts and at what cost. Some regard these issues as incapable of anything but an arbitrary resolution. The task force deemed that any motor response of a patient in a “vegetative state” was primitive, random, or reflex, and as such, could not be interpreted as evidence of cognition. Further, the task force relied on imaging and pathologic studies, using modalities available at the time, as excluding any anatomic substrate for consciousness. Techniques such as functional MRI, single photon emission computed tomography, and so forth have called these judgments to question.
1. Withholding/withdrawing. It is generally accepted that patients with the capacity to decide for themselves are not obliged to accept all treatments, diagnostic studies, and the like, and may reject these even if one of the results of such rejection is death. With patients in the “vegetative state,” such decisions devolve upon surrogates, duly identified (see III.B.). Most commonly, a burdens–benefit calculus is used to make a decision to reject. Such decisions should never be made with the intent of causing death but may be made even when the probability is that death will ensue. The obligations of the physician in this process are 3-fold: to reach medical certainty, as far as that is possible; to convey that certainty to the decision makers, as gently and as often as is necessary to ensure understanding and acceptance; and to respect and implement the decision, as long as that does not violate the conscience of the physician. From an ethical point of view, withholding is more problematic than withdrawing. Withholding does not give the patient the benefit of a therapeutic trial, even a time-limited trial. The physician does not know whether what might have been proposed would have helped the patient if it is not tried. It is imperative that all involved recognize (and behave accordingly with such recognition) that it is not care that is being withheld or withdrawn but rather a burdensome treatment or diagnostic study without sufficient benefit for the patient. The natural tendency to avoid such patients, visit them less often, even not to speak (as though they might understand), should be steadfastly eschewed.
2. Nutrition and hydration. Given the deep meaning of food and water in human society, it is no wonder that some have balked at the withholding or withdrawing of these as symbolic of abandonment of the patient. Others have equated the food and water given to a patient in the “vegetative state”—generally through a gastrostomy tube, with all of its attendant paraphernalia and cost—with any other therapy that may be rejected (for reasons previously given), making such a decision to take that action more acceptable by use of the terms “artificial nutrition and hydration.” Clearly, it is licit to reject such measures for the benefit of the patient—as when the intent is to minimize excess gastric or pulmonary secretions, incontinence, and the like. However, when the intent is to cause death, some regard that not as a benefit for the patient, but rather as the beginning of a “slippery slope” that would lead inexorably to the elimination of “absolutely worthless human beings.” (Retarded children were referred to as “absolutely worthless human beings” in Nazi Germany.)
3. Other considerations. In making judgments about level of care of patients in the “vegetative state” or with other devastating, irremediable neurologic conditions, the physician is increasingly called upon to consider questions of distributive justice. These arise in such matters as access to intensive care, “managed care” decision, and even conservation of individual and group resources. Ethical physicians owe primary responsibility to their patients, unless both have knowingly entered into a contract with each other that permits limitation of care on such bases. That is not to demean the need to be in constant dialog with the patient or surrogate, in a gentle yet persistent effort to convince them of the reason of a considered position that may be different from theirs.
C. Neurogenetic diseases. There has been an explosion in the understanding of heritable neurologic disorders since 1983, when a marker for the gene for Huntington’s disease was identified on chromosome 4.
1. Diagnostic testing. Research and commercial laboratories can provide the physician with DNA and non-DNA information helpful in the diagnosis of more than two dozen disorders of the central and peripheral nervous system (including various genetic forms of myopathy) with the likelihood that information about more diseases—and even such considerations as behavioral traits—will be available in the near future. Such testing may yield information pertinent not only to the diagnosis of an existing condition but also in the presymptomatic—even prenatal—situation, as well as with regard to carrier detection. Some—but by no means all—institutions use an extensive counseling system before and after testing, to ensure thorough, informed decision making for testing and appropriate support after results are made known to the patient or the guardian or surrogate.
2. Ethical considerations. Because the information garnered through diagnostic testing for neurogenetic disease in essence belongs to the persons being tested, it is important to their decision making that they understand all of the implications of testing and are prepared—with support from the physician—to deal with those implications. For example, knowledge that one is a carrier of a neurogenetic disease may allow for more responsible parenthood. Prenatal recognition that a neurogenetic disease is present in a developing infant may allow that infant’s parents to prepare to shoulder the burden of that disease or to elect termination of the pregnancy. Because certain neurogenetic diseases (e.g., Huntington’s disease) are associated with a higher rate of suicide than obtained in the population at large, presymptomatic diagnosis may enhance the risk of suicide, especially in a person who has experienced the ravages of the disease in an affected family member. Confirmation of the diagnosis of a neurogenetic disease may help the patient to cope with that disease because certainty is always easier to deal with than uncertainty. Caution must be expressed over the misuse of information from diagnostic testing—by employers and insurers (especially health care insurers), who might arbitrarily exclude persons with proven disease without reference to the impact (present or future) of the particular disease on specific job performance or to its call on pooled health care resources. With regard to the latter issue, competing considerations of justice may enter in and may require the person being tested to disclose the results of testing. In the last analysis, the physician requesting the test as well as the person being tested should be aware of and informed about the various aspects of testing before proceeding with it. Genetic testing should never be done as part of the “routine” evaluation of a patient without such considerations being taken into account and explored.
3. Gene therapy. A promise for the future in neurogenetic disease is the hoped-for ability to insert or replace missing or defective genes in the cells of persons affected by such diseases. When the manipulation is directed at the affected cells, the procedure is termed somatic cell therapy; when it is directed at the initial fusion of sperm or ovum (or at those precursors of new human life themselves), it is termed germ cell therapy.
Somatic cell therapy raises issues common to research (see IV.F.). Germ cell therapy, with its implications for future generations, raises other considerations beyond the scope of this chapter. Mention should be made, however, of the proposed role of stem cells in this line of research. Stem cells, as the name implies, have the capacity of developing into any tissue (totipotential); many but not all tissues (pluripotential); or only some tissues (unipotential). They differ in source of derivation. Totipotential stem cells come from an embryo at the very earliest stage of development; pluripotential cells come from fetal tissue; and unipotential cells from adult tissue (e.g., bone marrow). The embryo and fetus do not survive harvesting of stem cells, so although the goal of stem cell development (e.g., cure of neurodegenerative diseases, repair of traumatic brain and spinal cord injury, cure of stroke, etc.) may be understandably laudable, the moral status of the source of stem cells cannot be ignored.
D. Static or progressive disorders with intact cognition. A spectrum of neuromuscular or spinal cord diseases have in common absence or loss of varying degrees of motor function (and hence—basically—of independence) with intact higher cortical function. Examples include spinal muscular atrophy, muscular dystrophy, and spinal cord dysraphisms (e.g., meningomyelocele), injuries, and other illnesses (e.g., multiple sclerosis [although mental functions may be impaired in multiple sclerosis]).
1. Truth-telling. Truth-telling becomes exceptionally painful for a physician when confronted with a healthy mind in a body now or predictably about-to-be robbed of its normal function. Maintaining hope and thwarting inevitable depression without making false and empty promises is an art not easily learned—and yet one whose reward is 100-fold from the patient and family, for whom life does, indeed, go on. Truth—though painful for physician and patient alike—is a reliable ally in the practice of this art. Physicians must be exceedingly sensitive to, and take time to care for, the emotional dimensions of the state in which their patients find themselves. As difficult as it may be not to do so, one must never abandon patients in this state. This is especially true in circumstances in which breathing becomes progressively more difficult.
2. Problems at the end of life. Despite all attempts at describing life on a ventilator, the patient may not be able to decide what that life might be like unless a trial of assisted ventilation is undertaken. After this point, the problem of withdrawing such assistance enters the scene. Minimizing suffering during withdrawal (e.g., with sedative–analgesic medications) runs the risk of suppressing what ventilatory function the patient still has. However, as long as the intent is the relief of that suffering and not to cause a more rapid demise, the use of such medication is appropriate (see IV.G.). In all such circumstances, physicians should call upon colleagues with complementing skills (such as nurses, social workers, physiotherapists, hospice workers, and the like) to help them implement the health care decisions reached by their patients, properly informed.
E. Static or progressive disorders with impaired cognition. Absence or loss of that which makes us uniquely human—consciousness and related higher neurologic functions—poses a number of dilemmas for the physician, who must deal with surrogates or even the courts in attempting to resolve those dilemmas. The paradigm clinical conditions range from anencephaly at one end of life to end-stage Alzheimer’s disease at the other, with varying degrees of mental retardation and behavioral disorders—all of diverse causation—in between.
1. Limiting medical interventions. Until a new definition of death (see IV.A.3.) is accepted, persons with these conditions remain human beings—as difficult as it may be to recognize that fact at any given moment. One may argue whether some human beings have more of a right to use health care resources than others, but that is a societal decision that must not be invoked at the bedside of a given patient by that patient’s physician, absent agreement by the decision maker for that patient. On the other hand, the focus of decision making should properly be on compassionate care, not high-technology cure, once it is clear that one is dealing with a definitive, irreversible process.
2. Making decisions. Surrogate decision making according to a substituted judgment standard (see III.B.) is particularly problematic when the person has never had the capacity for independent judgment (e.g., an infant with anencephaly, or a person of any age with severe mental retardation). A sorry chapter in US jurisprudence in this regard dealt with involuntary sterilization—justified by the alternate, more subjective, best interests standard. The latter standard often is used in dealing with unwanted, sometimes self-injurious, behavior by means of medication, restraints, institutionalization, and the like—even “psychosurgery.” Extreme caution must be the rule, and compassion the guide. The use of advance directives—particularly the appointment of someone to hold a durable power of attorney for health care decisions—is critical to the goal of making decisions when patients can no longer articulate their own decisions. Physicians who care for patients with neurodegenerative disorders (in particular) are well-advised to encourage their patients to consider and implement advance directives earlier rather than later, involving friends and family in discussions that will make possible valid substituted judgments, when and if those become necessary, well before their patients lose the capacity for truly informed decision making.
3. Involvement of family. Family members and others bearing responsibility for the care of persons without the capacity to decide for themselves should be intimately involved with decision making in this category, unless there is a valid reason for them not to be involved. When capacity has been present and is now lost (as in the end stages of Alzheimer’s disease), attention should be paid to health care proxies if previously executed. It must be borne in mind that people change their minds, especially as circumstances change. Few of us can truly be aware of what it is like to become demented, nor can we truly know what it is we would decide for ourselves if and when we were to reach such a state. The burden of dementia is on those who care for the demented, not on the demented themselves.
F. Research in neurology. Dr. Labe Scheinberg once described the practice of neurology with the aphorism, “diagnose—then adios!” at a time when there were few, if any, effective treatments for neurologic disease. The last decade of the 20th century was deemed the “Decade of the Brain” because of the remarkable advances in the understanding and management of neurologic disease that began to come forward during that time. The move from Scheinberg’s aphorism to a brave and wonderful new world occurred in large measure because of research—often involving human subjects early (because no appropriate animal model existed), often with great risk (in searching for an elusive benefit), and often raising the spectra of a conflict of interest (between physicians caring for patients and conducting meaningful research by enrolling those patients in controlled clinical trials).
1. Valid versus invalid research. The sine qua non of valid research is peer review—approval of a research proposal by a thoughtful, responsible, knowledgeable group of peers to judge the question as worthy of being asked; the answer as likely to be forthcoming; and the hoped-for benefit as worth the predicted risk. The availability of external funding makes it possible to conduct approved research honestly and openly, without employing the subterfuge of paying for research under the guise of acceptable patient care. The process that effects valid research involves institutional review boards and other oversight bodies to ensure validity at every step along the way.
2. Consent issues. Persons with devastating illnesses (e.g., most neurologic diseases) are particularly vulnerable to any offer of hope, even when that offer wears the cloak of a research hypothesis. The offer of hope may come in the form of a controlled clinical trial, in which the decision as to which treatment (e.g., active treatment for placebo) the patient is to receive is made by the parameters of the trial, not by the patient’s physician. Physicians who refer their patients for enrollment in such a trial must do that with clinical equipoise—meaning that they must agree that the trial is necessary; that there is not, as yet, any proven approach that would guarantee benefit to their patient (for if there is, their patient cannot be denied access to that—which may mean a more cumbersome, likely less valid, trial of the unproven therapy); and that the risks of the trial are balanced by the benefits their patient can expect. If there is no expected benefit to patients, then—at the very least—society should benefit from the expected gain in knowledge that will come from the trial. Consent is especially problematic for children and for others without the capacity to give their own consent. Some have gone so far as to take the position that nontherapeutic research involving patients should never be done, whereas others emphasize a broader debt to society that can only be paid by advancing knowledge through valid clinical research.
G. Chronic pain. Diverse neurologic conditions are commonly associated with pain, often requiring hefty doses of potent analgesics for relief—doses of medications that may suppress respiration, lower blood pressure to dangerous levels, and have other unwanted effects. The ruling principle here is that of the double effect—the unwanted (indirect, merely permitted) effects (in this instance, possible aspiration or even death) are allowed, as long as the primary (direct, intended) effect (in this instance, relief of pain and suffering) is desirable, and cannot be achieved in any other way. It is important to remember that pain can be physical and identifiable, or metaphysical and existential. Adequate relief of both kinds of pain is at the heart of comfort care, which can be chosen by patients at any stage of their lives, especially at the end of a terminal illness. In this regard, hospicemay be an ideal setting in which to provide such care (although the trajectory of neurologic illness often exceeds the arbitrary limits set by Medicare and other funding agencies for the provision of hospice care).
V. INTERFACE WITH THE LAW
Many of the most notable, landmark legal decisions involving patient decision making have dealt with patients with neurologic problems. In the matter of surrogate decision making with regard to the withholding or withdrawal of medical treatment, Quinlan and Saikewicz set the standard of substituted judgment for once-competent and never-competent patients, respectively. Conroy affirmed the fact that autonomy remains intact, even when a person is no longer able to assert that right or even appreciate its effectuation. Cruzan acknowledged the right of states to require stringent (“clear and convincing”) evidence of the prior wishes of a once-competent person as applicable to his or her current status. The physician should be aware of such cases and should try to discern their relevance to the situation at hand (see II.B.). The physician should recognize that the impact of such cases (in terms of setting precedent) is limited to the jurisdiction in which the decision was rendered but may (in terms of argument) be of probative value in other jurisdictions.
VI. REFERRALS
Most ethical dilemmas can (and should) be dealt with by physicians with colleagues (nurses, social workers, clergy, and the like) in the care of their patients—perhaps with the help of ethics consultation and the awareness of hospital administration and attorneys. In solving such dilemmas, physicians should keep the general principles of decision making, truth-telling, and involvement of family (see III.A. and IV.F. in particular) in mind at all times. Physicians should not hesitate to seek the guidance and assistance of senior, more experienced clinicians in dealing with these issues at a practical level. Generally, recourse to the courts should be a last resort, because the legal process takes an interminable length of time and often is not sensitive to the important nuances of a particular situation.
Recommended Readings
American Academy of Neurology Code of Professional Conduct. Neurology 1993;43:1257 (revisions available on the AAN website).
American Medical Association Council on Ethical and Judicial Affairs. Code of Medical Ethics: Current Opinions and Annotations, 2010–2011. Chicago, IL: American Medical Association.
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 4th ed. New York, NY: Oxford University Press; 2008.
Bernat JL. Ethical Issues in Neurology. 3rd ed. Boston, MA: Butterworth-Heineman; 2008.
Fletcher JC, Lombardo PA, Spencer E. Fletcher’s Introduction to Clinical Ethics. 3rd ed. Frederick, MD: University Publishing Group; 2005.
Giordano JJ, Gordijn B, eds. Scientific and Philosophical Perspectives in Neuroethics. New York, NY: Cambridge University Press; 2010.
In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.U. 922, 1976.
Jennett B. The Vegetative State. Medical Facts, Ethical and Legal Dilemmas. New York, NY: Cambridge University Press; 2002.
Lo B. Resolving Ethical Dilemmas. A Guide for Clinicians. 4th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2009.
Wijdicks EFM, ed. Brain Death. Philadelphia, PA: Lippincott Williams & Wilkins; 2001.