Physical Address
304 North Cardinal St.
Dorchester Center, MA 02124
The authors express their gratitude to previous authors of this chapter: Alex John London, Angelique Reitsma, and Connie Zuckerman.
Research advances and heightened clinical capabilities have enabled those who care for patients with neurosurgical disease to make great strides toward restoring the health and well- being of such patients and reducing morbidity and mortality. Yet for every new technologic advance and clinical application, new issues have also arisen for caregivers, such as (1) the appropriate selection of patients for application of new technologies and enrollment in clinical trials, (2) the involvement of patients and families in balancing the risks of new treatments against their possible benefits, and (3) how to make decisions for patients who may not be able to participate in the decision- making process yet for whom significant decisions must be made concerning the kind of care to be delivered.
Such questions demand that clinicians look beyond their clinical training and subspecialty expertise when facing the genuine ethical dilemmas that are now an integral part of the clinical setting. Determining the moral status of one’s actions can be a troubling and sometimes arduous process for even the most enlightened of clinicians. Because such moral issues permeate clinical practice and because their resolution often requires serious and extended deliberation, clinicians should become familiar with the systems of “clinical ethics” and research ethics that have emerged over the last 35 years. Such familiarity will enable clinicians to deal more effectively with these difficult issues by applying philosophical reasoning and ethical analysis to the problems they encounter in the course of research and clinical practice.
Heightened sensitivity to ethical concerns in the clinical setting has also been accompanied by increased awareness of and concern for the role of the legal system in clinical practice. As medical and surgical care has become ever more sophisticated and developments in the legal process have both educated patients and encouraged them to assert themselves in the provider–patient relationship, physicians have naturally become more sensitive to the legal status of their actions. A clinical ethics framework that incorporates a perspective of legal concerns as it also tries to determine the appropriateness of an action may lie well beyond narrow legal definitions applicable in a particular situation. Although it is incumbent on the clinician to be aware of the legal backdrop for clinical practice, many ethical dilemmas move beyond mere legal technicalities, requiring the clinician to evaluate concurrent and, at times, conflicting duties, rights, and values that are an inevitable part of the provider–patient relationship. In this chapter, we address the ethical issues that confront caregivers of the neurosurgical patient population.
We begin with an overview of the historic development of medical ethics. The account concentrates mainly on the Western secular tradition that begins with followers of Hippocrates and emerges in a fundamentally altered form in the current framework of clinical ethics. We then describe the essential features of the current framework.
Western medical ethics is believed to have originated with the Hippocratic cult (about 450 to 300 bc ), a group of early physicians who are thought to have been heavily influenced by the Pythagorean thinkers. Rather than ascribing disease to be solely the province of supernatural or deistic causes, this group was responsible for one of the first systemized efforts to impart a naturalistic approach to the study and practice of medicine. In addition to their accomplishments in mathematics, the Pythagoreans developed a moral philosophy that emphasized respect for life. This outlook would account, for example, for the apparent strictures on abortion and euthanasia that are features of a prominent version of the Hippocratic Oath. For different reasons, the oath also prohibits surgery, which was not regarded as a proper part of a physicians’ activities. The attitudes held by the Hippocratic physicians apparently were not widely held among other physician cults of the ancient world.
The Hippocratic tradition urges physicians to “do no harm” and to use their skills for the welfare of the individual patient. For many years these principles were thought to justify medical paternalism because they seemed to generate duties that were mainly intended to minimize physical harm and to improve the patient’s physical well-being. Given that the physician possessed specialized knowledge of the physical structures and causal processes of the patient’s body, the physician and not the patient was considered most qualified to determine a patient’s health care goals and the means to achieving them. On the basis of this reading of the Hippocratic Oath, patients were not thought qualified to shape the course of their individual care because of their general lack of scientific insight into the nature and workings of their own physical condition.
The last 40 years or so have witnessed a trenchant and often passionate critique of the idea that a patient’s best interests are limited to or exhausted by his or her physical wellbeing. Because a patient’s best interests must be determined in light of his or her values and life goals and because the value a patient places on physical well-being depends on how it fits within this larger framework of values and projects, the competent and well-informed patient is generally recognized as the best judge of appropriate health care goals. Few would deny the accuracy of the Hippocratic conception of medicine as a science whose goal is the health and physical welfare of the patient nor challenge the claim that physicians must always look after the best interests of their patients. However, the fact that a competent patient lacks specialized medical knowledge is generally recognized to be less important than the fact that each patient is the most qualified judge of the relative value of his or her physical well-being in relation to his or her larger life goals and projects. For this reason, patient self-determination, as well as its culmination in the doctrine of informed consent, represents the bedrock of contemporary clinical ethics.
As medical science has progressed and physicians have developed the ability to alter the course of a person’s life with the use of an array of medical technology, patients have taken a greater interest in determining the way their lives should be shaped. The early seeds of patient self-determination and the doctrine of informed consent began developing as early as the latter part of the 19th century. This period and the early part of the 20th century saw many legal cases involving surgical patients whose consent to excision of tissues had not been obtained. Under prevailing legal theories, these actions were at first considered torts, such as battery or “unconsented touching.” As medical and judicial systems evolved, they were then gradually brought under a negligence theory. This change strengthened the growing expectation that informing a patient of the reason for the procedure and obtaining consent for it were proper parts of the physician–patient relationship. In theory, at least, obtaining the patient’s informed consent became an essential aspect of the developing standard of care. However, honoring this legal requirement in clinical reality awaited the increased attention to ethical issues that emerged in the late 1960s.
Although we focus here on clinical ethics, no survey of the history of medical ethics can omit society’s reaction to the abuses of human beings perpetrated by physicians and scientists in the concentration camps of Nazi Germany. The revelations at Nuremberg led to the promulgation in Helsinki and Geneva of international standards for the protection of research subjects. Unfortunately, these efforts did not prevent blatantly unethical practices in the context of subsequent research by American investigators. As a result, strict statutory protections were established to ensure the informed consent of research participants, including protocol review by institutional committees. Public recognition of research abuses led to heightened scrutiny of the physician–patient relationship in the clinical setting and greater support for the concept of informed consent.
Technologic advances once again profoundly influenced the direction of medical ethics, beginning in the later 1960s with the arrival of practical artificial respiratory equipment and, in the early 1970s, with the development of materials that facilitated artificial hydration and nutrition. These advances—combined with social and political changes, including the civil rights movement—culminated in the celebrated legal case of Karen Ann Quinlan in 1976. In the Quinlan decision, the New Jersey Supreme Court established that the right to refuse medical treatment was fundamental and could be exercised on behalf of an incompetent patient by informed surrogates who were knowledgeable about the patient’s previous values and lifestyle. The family was found to be in the best position to represent the wishes of their close relative.
In summary, the history of Western medical ethics has featured a transition from the “beneficence” orientation (doing good for the patient) of premodern medicine to the view that the patient must ultimately decide what his or her best interests are after going through a process of informed consent. Both morally and legally, patient self-determination has become the gold standard of modern biomedical ethics. In the next section, we review the prevailing philosophical principles and theories that are often used to further assess ethical problems in modern medicine.
The term medical ethics, as it is used in contemporary society, is somewhat ambiguous. It may refer to those rules of conduct established by the formal bodies of the medical profession in the course of regulating itself, such as the prohibition of the sexual exploitation of one’s patients, or it may refer to novel ethical dilemmas that actually confront health care workers and have no obvious solution in terms of traditional values and ethical codes, such as the removal of life-support systems from irreversibly comatose patients.
Two philosophical approaches dominate the literature. Tracing its roots to the German philosopher Immanuel Kant (1724–1804), the Kantian tradition holds that people have a fundamental right to be treated as ends in themselves and not merely as a means to some other end. The basis of the Kantian view is that each person has the capacity to take on projects and to give a distinctive shape to his or her own life. This capacity must be respected in each individual because the value of all other things is derived from the exercise of this capacity. Patient self-determination and informed consent are, therefore, the preeminent Kantian values for clinical ethics, because without them we cannot freely set the ends for ourselves that give all other things their moral worth. As such, they represent the necessary conditions for treating a patient as an end in himself or herself.
Utilitarianism traces its roots back to the English philosophers Jeremy Bentham (1748–1832) and John Stuart Mill (1806–1873). Utilitarianism is a form of consequentialism, which holds that actions or policies are right in proportion to the extent to which they promote the aggregate happiness or well-being. Whereas the Kantian can claim that physicians have special duties to their patients, which derive from the need to respect their patients as ends in themselves, the utilitarian must argue that any duties physicians owe to their patients are rooted in the fact that fulfilling those duties maximizes overall happiness.
Although the principle of autonomy is commonly regarded as the first principle of contemporary medical ethics, those with a more utilitarian slant believe that it is conceptually balanced by the principle of beneficence; the obligation to do good for the patient. Beneficence is closely associated with the traditional Hippocratic obligation to at least not harm the patient, or the principle of nonmaleficence. Arguments that establish the moral basis of beneficence and nonmaleficence are available both to Kantian and utilitarian theories. The main difference between these theories, therefore, lies not in the principles they recognize but in the way they justify those principles and the way they order them in relation to one another.
Strictly speaking, autonomy refers to the potential for the individual to be self-determining. Self-determination is, in this line of thinking, regarded as a good thing in itself and also as a means to an end. It is the expression of an individual’s personality. Self-determination is thought to be the best means of identifying an individual’s best interest, a determination that involves the incorporation of that person’s values into a decision. This concept suggests that each individual is in the best position to assess aspects of decision making in the context of his or her own value system. In the clinical setting, self-determination is exercised through the informed consent process, which allows the patient ultimately to determine the most individually appropriate health care choice on the basis of his or her own values and preferences.
Because self-determination is regarded as good, certain individuals may be obligated to foster another’s self-determination, if they have a certain type of relationship with that individual. An example is a parent who has a unique opportunity to help the developing child realize his or her individuality by helping to prepare the child to make his or her own choices. Choices are not thought to be truly the result of self-determination until they are considered judgments that encompass the person’s reflective deliberation. It is implicit that these judgments would then also be authentic and reliable representations of that person’s character and values.
The promotion of a patient’s self-determination is a major responsibility, and many conditions could prevent its realization in the clinical setting. One of these is the sense of vulnerability that can accompany illness. Physicians and other health care providers are in a powerful position, either to exploit this sense of vulnerability or to reduce it and instead promote a feeling that the patient has some measure of control over the situation. Ensuring the patient’s control would be a first important step in promoting the patient’s self-determination. A second important step would be to help the patient identify his or her own authentic preferences among the diagnostic or treatment options available.
Confidentiality is one of the pillars of the Hippocratic tradition, and it is a fundamental concept that still forms an essential aspect of the physician–patient relationship. Although its strong theoretical basis is maintained, however, it is a concept under continuous assault in the clinical setting. Computerized databases containing sensitive information, team coverage of patient needs, and the demands of third-party insurers have all converged to threaten this fundamental aspect of the bond between patient and provider.
At its core, the concept of confidentiality means that all information that the patient shares with the provider during the course of being treated should remain private and confidential; it should not be revealed to those outside the patient–provider relationship. The trusting bond and fiduciary nature of the relationship should allow the patient to feel comfortable when revealing to the provider all information necessary to ensure a comprehensive understanding of the patient’s circumstances and a correct diagnosis of the patient’s condition, thereby fostering an individually appropriate caregiver response. In turn, as a means to encouraging the patient to be forthcoming, the provider ensures that no one else will come to know this highly personal and perhaps embarrassing information. Currently, “intrusions” are permitted into this relationship. Examples are multiple caregivers who learn of the patient’s circumstances in acute care settings and the insurance company that learns of the patient’s condition to determine whether reimbursement is warranted. Nonetheless, the notion that those who do not need to know these intimate details of the patient’s condition will not know is still an essential factor in the bond that ties the patient to the provider.
The costs of not guaranteeing confidentiality or breaching it when previously assured are significant both for the individual patient and for society. Patients who believe they cannot trust their providers and are, therefore, less than candid in their descriptions are likely to suffer the consequences of an incomplete assessment or even a misdiagnosis of their condition. They lose out on what their physicians may have to offer. Also, providers who breach their duty to keep information confidential fail in their ultimate obligation to act beneficently toward their patients and to do them no harm. Moreover, society as a whole is not served well when individuals in need of medical care feel inhibited or are unwilling to seek that care.
Our legal system has recognized the fundamental requirement of confidentiality between doctor and patient. Under most circumstances, information that passes between doctor and patient during the course of care is “privileged,” that is, inaccessible in a court of law; a judge or jury will be unable to learn of it. This special exclusion of possibly relevant information further ensures that patients do not feel inhibited when conversing with providers. Despite the essential drive in our court systems to bring out all possibly pertinent information in an individual case, society has nonetheless recognized that our interests as a whole are better served when patients and providers can feel assured that their discussions are private and confidential.
To further safeguard and protect an individual’s health information in an era of technologic sophistication, Congress enacted the Health Insurance Portability and Accountability Act (HIPAA) in 2003. The Privacy Rule of HIPAA limits the ability of health plans, hospitals, physicians, and other covered entities to use and share a patient’s personal medical information through oral or written communication, computer transmission, and other communication methods. Many have criticized the burden and cost of the implementation of HIPAA and have expressed concern about its impact on research and clinical care, although few would question the challenges to privacy and confidentiality that exist in modern health care environments.
Nonetheless, in certain circumstances, other societal interests are believed to outweigh the interests served by confidentiality. For example, in the midst of certain public health epidemics, in which the obligation to protect the health of society may conflict with the desire to maintain individual confidentiality, a societal consensus is morally and legally justifiable to breach individual confidentiality under certain limited conditions. One example involves laws requiring the reporting of certain diagnoses to health departments and perhaps the tracing of contacts who may have been exposed to an individual’s illness. Another example concerns the need to protect the public from harm. Under the state’s “police power” (a constitutional concept), physicians have the obligation to report certain medical conditions, such as gunshot wounds. A third example occurs with respect to the state’s obligation to protect its most vulnerable members, also known as the state’s parens patriae power, which obliges health care providers to routinely breach confidentiality and report instances of known or suspected child abuse. Although the circumstances permitting the breach of confidentiality are limited, they clearly represent instances in which other significant societal interests make such a breach justifiable and even desirable, despite the potential harm that may befall an individual patient.
As stated earlier, the informed consent process permits the expression of individual self-determination in the clinical setting. From a legal perspective, this means that providers are obligated to disclose to patients all information that will allow them to arrive at an informed decision about their choices, including such information as the patient’s diagnosis and prognosis, a description of the proposed intervention and its risks and benefits to the patient, and the existence of alternative interventions, along with their risks and benefits. In some jurisdictions, there is the requirement that information “material” to that individual patient be disclosed. This requirement might oblige the provider to disclose certain details that he or she might not normally discuss under routine circumstances. Overall, it is essential that the physician provides information to the patient, so that the patient can consider the options and select the choice that promotes the patient’s best interests as the patient assesses them.
Philosophically, autonomy and its promotion both undergird the legal doctrine of informed consent and exert greater demands than the doctrine does. Indeed, one seminal philosophical account of the legal doctrine of the informed consent process exhibits a more detailed conceptual scheme than is found in the law ( Box 26.1 ) as we will discuss below.
Competence (a threshold requirement)
Information requirements
Information
Understanding
Consent requirements
Consent
Authorization
Become a Clinical Tree membership for Full access and enjoy Unlimited articles
If you are a member. Log in here