Approach to Ethical Issues in Neurology

Michael P. McQuillen

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:

Respect for the autonomous choices of other persons (autonomy).
The obligation not to inflict harm intentionally (nonmaleficence).
Actions taken for the benefit of others (beneficence).
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. A bond 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 sce nario 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.

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