Clinical Ethics and the Law



Clinical Ethics and the Law





The ideal standards of medical conduct are dictated by medical ethics. A parallel and frequently overlapping standard of medical conduct is that regulated by the law. Generally speaking, the law dictates standards of physicians’ professional conduct that are minimally acceptable to society. By contrast, medical ethics sets aspirational standards of professional conduct that an ideal physician should practice. In short, the law says what physicians must do whereas medical ethics says what physicians should do.

Medical ethics and the law have similar intents because both establish rules governing professional conduct. Although ethics is an ancient discipline, much of medical ethical analysis is of more recent vintage and has appropriated concepts first developed in law. For example, the legal doctrine of informed consent was developed before an analogous doctrine evolved in medical ethics. Similarly, the legal rules surrounding the obligations of fiduciaries, the avoidance of professional conflicts of interest, and the protection of rights of self-determination were well-developed legal doctrines before they became medical ethical doctrines. Thus, the content of medical ethics and law overlaps substantially.

The interaction between contemporary medical ethics and law is complex and symbiotic. Judiciaries and legislatures try to achieve ends similar in some ways to those of physicians during ethical deliberations. The legal system works to enact just laws and interpret them to respect and protect persons and society as a whole, whereas the medical profession tries to identify the medically and morally correct action to benefit and protect each patient. Indeed, in many judicial decisions on clinical issues, ethical reasoning has been utilized as the foundation of legal arguments.1 In many areas, the proscriptions and aspirations of the law are as demanding as those of medical ethics.

Just as clinicians need not be moral philosophers to make ethically sound decisions, neither do they require formal legal training to make appropriate clinical decisions. But having a working knowledge of the basic theory and operation of the law is useful because it permits clinicians to place proper emphasis on the role of law and legal process in their medical practices. There are relatively few times when legal considerations are paramount in making clinical decisions. This chapter explores the relationship of ethics and law, and highlights the relatively minor constraints that the law exerts on medical practice in contrast to the fundamental demands that medical ethics exerts on medical practice. I discuss specific legal rulings pertaining to individual neurological disorders in the remaining chapters.

There are three general medico-legal references with which neurologists should be familiar. Neurologists seeking an in-depth discussion of the legal issues in neurological practice should consult the authoritative monograph by neurologist and law professor H. Richard Beresford.2 Neurologists interested in important American judicial precedent-setting cases relevant to medical ethics
should consult the accessible monograph by Jerry Menikoff,3 and those interested in the application of American law to critically ill and dying patients should consult the indispensable, encyclopedic reference work by Alan Meisel and Kathy Cerminara.4


THE LAW

Legal scholars find it difficult to precisely define “the law”; it is easier to describe its purpose and function. Operationally, the law refers to the set of general and specific rules governing the conduct of individuals in their interactions with each other and with society.5 The law creates a system to adjudicate conflicts, solve problems, and adapt to change. It governs and protects individuals in their relations with each other, the state, institutions, and organizations. The law imposes penalties on those found guilty of breaking its civil and criminal rules. Finally, it comprises a superstructure that organizes society both by codifying the minimum standards of personal, professional, and institutional conduct and by permitting the orderly redress of a broad range of wrongs.6

The vast corpus of law can be classified into overlapping descriptive categories. Statutory law refers to the body of legislation enacted within a jurisdiction, including civil and criminal statutes. Common law refers to a process of judicial decision making, used most extensively in the United States, Canada, and England, in which judgments are rendered after a careful study of individual cases. Case law judgments result in the gradual evolution and articulation of general legal principles and the establishment of judicial precedents that influence subsequent decisions. Criminal law is statutory law enacted to prohibit the most severe acts of antisocial behavior, to punish perpetrators, and thereby to protect society by discouraging others from committing these acts. Civil law—statutory law enacted to protect personal interests—permits an injured party to receive compensation from a wrongdoer who harmed the party through intent or negligence. Administrative law consists of a body of regulations propounded by agencies to clarify the interpretation of relevant statutes. The term the law can refer to any or all of these categories.7

Several categories of law are relevant to medical practice. The law governing medical malpractice is an example of tort law, itself a branch of civil law. The law regulating decisions to withhold or withdraw life-sustaining treatment is an example of common law, in which judicial precedents including high state court decisions and rulings of the U.S. Supreme Court have established certain principles and rights. Statutory law is exemplified by state laws governing the determination of death and the use of advance directives. Criminal law encompasses the determination of homicide, which may become relevant to medical practice if physicians act directly to take a patient’s life, even for compassionate motives or with the patient’s consent, as discussed in chapter 9. The “Baby Doe” regulations, insuring mandatory treatment of some severely-ill newborns, are an example of administrative laws and are discussed in chapter 13.


CONFLICTS BETWEEN CLINICAL ETHICS AND THE LAW

In an ideal world, medical ethics and the law would never conflict. Laws would be drafted carefully and completely to incorporate and epitomize ethical behaviors that would ultimately benefit individuals, institutions, and society. Each law would reflect and codify the morally correct behavior of an individual or institution in every foreseeable situation. In such a world, all case law emanating from judiciaries and all statutory law enacted by legislatures would be based on ethical arguments about what is right and just, and would clearly and comprehensively codify normative ethical behaviors.

In practice, however, the law considers factors in addition to those of ethics. Case law may be biased by the judge’s innate concept of justice, influenced by personal philosophical or political views, as discussed in chapter 1. The law evolves in a process of repeated statutory amendments and case law precedents in a continual attempt to codify the requirements
of ethical behavior as well as the rights and responsibilities of individuals and society. In the medical context, this activity is most apparent in the series of famously adjudicated cases of the right to refuse life-sustaining treatment encompassing Quinlan to Cruzan (discussed in chapter 8) in which many of the legal questions were framed in ethical and constitutional terms. Despite these accomplishments, law lags behind the requirements of ethics, ostensibly attempting to follow and capture these requirements.

In the real world, medical ethics and the law may conflict in those instances in which a law has been written inadequately to recapitulate ideal ethical conduct. Laws intended to protect individuals or institutions may be drafted clumsily or may generate unanticipated and seemingly perverse consequences. If their negative consequences ultimately become paramount, these laws will need to be amended or repealed because they have become dysfunctional, harming the very individuals and institutions they were enacted to protect, or harming others unjustly.

Most statutory laws are drafted in general language with the anticipation that they will be clarified later by judicial deliberation during the litigation of individual cases. Case law, produced by a series of judicial decisions, is an evolving, iterative process in which precedents are cited and analyzed. Through this process, the theory and meaning of the law are scrutinized to distill its essence and intent, leading to its gradual perfection.

Society empowers judges with authority to suspend certain laws and grant exceptions to them in justified cases. This power is based on society’s acceptance that the language of a law may not always be sufficiently clear and comprehensive to dispense proper justice. Although all citizens, including physicians, have an ordinary communal duty to follow the law, public interest is served best when exceptions to laws can be granted in those instances in which they are justified ethically.

Occasionally, physicians encounter situations in which their perceived ethical duty to patients conflicts with the law. If physicians, in their usual practice of following the law, find that doing so in a particular instance clearly produces more harm than good to a patient or others, if possible, they should contact a hospital attorney and seek a court order legally authorizing them to make an exception to the law. If such an order cannot be obtained with sufficient timeliness to permit physicians to protect the interest of those for whom they are responsible, generally they should act in accordance with the ethically correct decision, even if doing so conflicts with the law. In these unusual cases, seeking advice from the hospital attorney is essential.

In those rare instances in which following the law violates the requirements of medical ethics and a person is directly and avoidably harmed as a result, as a general rule, physicians are best advised to adhere to the obligations imposed by medical ethics. But because knowingly violating a law in such a circumstance could constitute civil disobedience, physicians who do so must be prepared to justify that such an action was courageously following the ethically correct behavior in response to an imperfect law. Physicians then should work within the political system to revise laws that systematically conflict with the mandates of ethics. In such potential conflicts of ethics and law, the best maxim for physicians to follow is: “Good ethics makes good law.”


THE UNEASY RELATIONSHIP BETWEEN LAW AND MEDICINE

In contemporary American society, law and medicine have evolved an uneasy relationship. Marshall Kapp and Bernard Lo identified four reasons for the breakdown of their formerly collegial relationship.8 First, a general challenge to authority figures is a defining characteristic of contemporary American life. Physicians’ assertions no longer go unconditionally unchallenged, especially by other professionals such as attorneys. Second, the political movement asserting personal rights has expanded from the civil rights arena into the rights of patients. Because of public pressure, legislators have enacted statutes and administrative regulations to further protect patients’ rights. Similarly, judicial interpretations of individual cases have
highlighted the legal rights of patients, often against those of physicians. Third, the rise of consumerism has changed the distribution of power in the patient-physician relationship, making it more of an equal partnership by emphasizing patient autonomy over medical paternalism. Fourth, public financing of medical care through Medicare and Medicaid has thrust the legal system into the role of auditing the quality of medical care physicians provide, thus protecting the public investment.9

There are additional pragmatic reasons why physicians may be wary of lawyers and the law. First, and most importantly, contemporary American physicians nearly unanimously believe that the medical malpractice establishment systematically victimizes physicians, unjustly rewards lawyers, encourages lawsuits (because of the contingency fee structure), fails to provide efficient compensation for deserving patients, and generally falls short in dispensing proper justice.10 Nearly all clinicians have been involved in a malpractice suit or know another who has. They are only too familiar with the details of how lawyers subject defendant physicians to years of harassment, intimidation, and unfair and insulting allegations.11 The practice of most liability insurance companies to settle unmeritorious malpractice suits that they consider a “nuisance,” rather than to pursue more expensive courtroom litigation, compounds the physicians’ sense of injustice. The high prevalence of malpractice suits in some communities has instigated an unfortunate change in physicians’ attitudes. Some physicians have come to fear prospective patients as potential plaintiffs and to loathe interactions with lawyers.

A second reason that provokes physicians to avoid legal interactions is the intimidating power of the law and lawyers. A patient or family’s verbal or veiled threat to pursue legal action often is sufficient to win whatever demand either makes on the physician. Many physicians understandably lack the courage to endure a legal battle that they could avoid simply by capitulating to the demand. However, a poor medical decision may be made as a result of this capitulation, causing harm. Physicians would be better served to courageously stand by their medical judgments when these comprise the medically and ethically right course of action, but this decision is understandably difficult.

Third, because many physicians do not understand the law, they fear it and are suspicious of lawyers. For example, many physicians (and some lawyers) share the fallacious notion that anything not specifically permitted by law is therefore prohibited.12 These physicians become unnecessarily and undesirably preoccupied with legalistic process to the detriment of good patient care. Before they make certain medical decisions, particularly those to cease or reduce life-sustaining medical treatment, some clinicians erroneously believe that they require legal permission.13 Patients and their families may be harmed by this legalistic attitude because it inappropriately and unnecessarily insinuates a legal process into medical decision making with its consequent delays and misguided diffusion of authority.

There is a cultural reason for the American preoccupation with legal process. In his classic work Democracy in America (1835), Alexis de Tocqueville observed a quintessential American propensity to transform moral dilemmas into legal problems. He pointed out that Americans turn not to moral philosophy, religion, or cultural norms for insight and guidance on the right course of action, but to the courts.14

Van McCrary and Jeffrey Swanson examined the prevalence of legal defensiveness among physicians and its causes and effects. They found that 25% of surveyed Texas physicians who treat critically ill and terminally ill patients adopted a position of extreme legal defensiveness about clinical decision making, and found an inverse relationship between physicians’ knowledge of relevant laws and their degree of legal defensiveness.15 Their posture of legal defensiveness created conflicts between the physician and the critically ill or terminally ill patient and family resulting in an adversarial relationship that was counter-therapeutic.16 The same investigators showed that, with increasing experience, physicians lessened their legal defensiveness to the betterment of patient care.17 They also showed how highly publicized state judicial decisions influenced physicians’ legal defensiveness, such as that
seen in New York following the O’Connor decision, discussed further in chapter 15.18

Fourth, physicians may receive unsound legal advice from hospital attorneys and risk managers. Hospital attorneys and risk managers have the responsibility to protect their institution, which at times may lead them to provide unnecessarily conservative advice. In cases in which physicians wish to withdraw life-sustaining treatment, they may advise continuation of life-sustaining treatment, ostensibly to protect the hospital or medical staff against perceived potential liability. Hospital attorneys also may recommend that the safest legal course for a physician planning to terminate life-sustaining treatment in a certain case is first to secure a court order.

A hospital attorney should voice her opinions to the administration about the potential legal consequences of particular options. Administrators then should choose the option that appears most prudent. Because some administrators and managers are markedly averse to risk, they may prefer options that maximize the protection of the institution and the physicians. Although such options may be legally sound insofar as the institution’s narrow interests are concerned, they may not be in the patient’s or family’s best interests. And most importantly, these options may not necessarily represent good medical care.19 There are convincing arguments that maintaining an attitude of strong patient advocacy represents the best legal advice an attorney can provide her hospital.20

The most poignant example of the devastating effect of overly conservative legal advice from a hospital attorney occurred in the Linares case. Sammy Linares was six months old when he aspirated a deflated balloon at a birthday party. He suffered cardiopulmonary arrest and hypoxic-ischemic brain damage sufficient to result in a persistent vegetative state (PVS). Thereafter, he was totally dependent on a ventilator and had failed many attempts at ventilator weaning. Sammy’s attending physician explained to his parents that there was no hope for his recovery: he would never regain consciousness or be able to be weaned from the ventilator. But because of advice from the hospital’s legal counsel, the physician further explained that he was not permitted to follow the wishes of the parents to terminate the use of the ventilator unless they first obtained a court order. Inexplicably, despite the parents’ obvious financial and educational limitations, no one in the hospital attempted to assist them in seeking such an order.

Mr. Linares visited Sammy frequently and, at one point, he was restrained by the nursing staff when tried to disconnect Sammy from the ventilator. After Sammy had been in PVS for nine months, his father, apparently motivated by compassion and desperation, entered the intensive care unit and held the nursing staff at gunpoint while he personally disconnected the ventilator. Mr. Linares held his son in his arms for an hour until he was certain that Sammy had died. At various times during the ordeal he said, “I’m not here to hurt anyone … I did it because I love my son and my wife. I only wanted him to be at rest.” Mr. Linares then surrendered to the police. He received a suspended sentence on a misdemeanor weapons charge, but a grand jury, apparently moved by his compassionate motive, refused to hand down an indictment for attempted criminal homicide.21

The physicians in the Linares case were led to believe that they had no choice than to continue ventilatory therapy that neither they nor the family wanted, and that represented inappropriate care given his prognosis and the parents’ treatment preferences. Although the hospital attorneys may have given the physicians and administrators proper legal advice based on their interpretation of Illinois law, clearly the wrong decision had been made. It appears that Sammy’s physicians felt bound to follow advice of legal counsel and believed the law prevented them from giving appropriate medical treatment. These physicians’ broader interest was in protecting the welfare of Sammy Linares, whereas the hospital attorneys’ interests lay in protecting the institution and its staff physicians. Because their fear of violating the law was judged to be of prime importance, Sammy’s physicians did not or could not make the ethically correct decision.

Overly conservative legal advice may have a more pernicious and enduring effect on
physicians’ thinking than the direct effects of legal advice in a particular case. Physicians may develop a false belief that formal legal proceedings represent the best or only resolution of a patient’s complex medical-ethical problem. Not only is this belief incorrect, but it encourages the physician, consciously or subconsciously, to misconstrue a patient’s ethical conflict as a legal one.22 Physicians should retain responsibility for their patients’ medical care and should not willingly transfer it to, or unnecessarily allow it to be usurped by, a lawyer or court of law.23

Fifth, physicians are understandably intimidated by criminal law, particularly the increasing and disturbing tendency for cases of extreme medical negligence to be subjected to criminal prosecution. One area where practicing clinicians may encounter the criminal justice system is when law enforcement officials wish to interview hospitalized patients who may have experienced, witnessed, or perpetrated a crime. Physicians may be unsure how to balance patient confidentiality with the requirements of law, particularly given the fact that state and federal regulations and professional guidelines governing this activity are minimal. Paul Jones and colleagues developed five guidelines for physicians: (1) respect for patient autonomy permits the competent patient to decide whether to speak with the police; (2) police interviews should not interfere with medical care unless competent patients accept the risk of harm; (3) patient privacy should be respected by strict adherence to HIPAA regulations as discussed in chapter 3; (4) clinicians should maintain professional boundaries by clarifying that they have no role in the criminal justice operation; and (5) hospitals should proactively form committees to develop guidelines governing the interaction of medical and other personnel with the law enforcement system.24

Finally, physicians should not ask the law to grant them unconditional immunity from liability for their medical decisions. Although no physician wishes to be a party to civil or criminal litigation, her best protection is to practice medicine according to the highest ethical standards. Requesting absolute immunity from legal liability before making a potentially controversial decision (such as termination of life-sustaining treatment) is unnecessary, time-consuming, and inefficient. In the end, the request may backfire, as occurred in the tragic case of the anencephalic Baby K discussed in chapter 10.

Insisting upon unconditional immunity represents poor medical practice for other reasons. It incorrectly displaces the focus of decision-making responsibility to the court, where it does not belong. This decision rightfully belongs to the principals involved: the physician, the patient, surrogate decision maker, family, and health-care facility. Requests for unconditional immunity foster poor patient care because of delays and deferral of responsibility. Finally, requests for immunity are of questionable morality because they place the self-interest of the physician (in trying to guarantee her absolute protection) above the interest of the patient.25

Attorneys also have grounds to distrust physicians. Many attorneys regard the negative attitudes that physicians harbor against the medical malpractice system to be largely their own fault because physicians have failed to properly police their profession to weed out incompetent colleagues and improve patient safety. Attorneys further view physicians’ attempts to pursue tort reform and other institutionalized means of providing immunity from liability simply as the machinations of a special interest group to protect itself. They believe that a robust malpractice system remains the best public protection against physicians’ carelessness and incompetence.

Despite these differences and conflicts, physicians and lawyers share much common ground. They share a set of core social and ethical values, interests, and experiences that define both physicians and attorneys as professionals, particularly their fiduciary duties to their patients/clients.26 Further, they share respect for individual patient/client autonomy, a commitment to reason and the rule of law, and the use of professional judgment and experience as grounds for decision making.27 They should use these shared values to lessen antagonism, build better professional relationships, and work together to solve mutual problems such as: (1) the optimum way to conserve
medical resources while accommodating individual patient autonomy and social concepts of fairness; and (2) the design of an improved patient safety system that maintains appropriate accountability but permits a confidential reporting system.28 One example of their past cooperation was during the development of the Patients’ Bill of Rights.29

In an ideal world, physicians and lawyers would have mutual respect and work together toward a common goal—the betterment of health and the protection of personal and institutional rights. For their part, physicians should concentrate on identifying and following the medically and ethically correct course of action in patient management and try not be unnecessarily preoccupied with legalistic concerns.


STANDARDS OF SURROGATE DECISION MAKING

The doctrine of valid consent, described in chapter 2, requires physicians to obtain a competent patient’s free and informed consent before embarking on diagnostic testing or treatment. Respect for patients’ rights of self-determination and the duty to promote patients’ medical welfare predicate this ethical and legal responsibility of clinicians. Competent patients are partners with their physicians in a shared decision-making process in which the physician contributes her specialized knowledge, skills, and experience and the patient contributes her unique values and preferences for health care.30 The right of competent patients to give or refuse consent extends to instances in which they are profoundly paralyzed and have difficulty with communication, as discussed in chapter 14.

When a patient is incompetent, a surrogate decision maker must be identified from whom the physician obtains valid consent for tests or treatment. In the ideal circumstance, the patient previously will have named a legally authorized surrogate in a durable power of attorney or a document appointing a health-care agent. In the absence of a legally authorized surrogate, an informal surrogate must be chosen. In the selection of a surrogate decision maker, physicians should consider the urgency of the situation and the existence of suitable candidates, such as family members or guardians. When an emergency situation arises, the physician in charge must make a rapid decision that she believes to be in the patient’s best interest. But in a non-emergency situation, the nuclear family generally serves as the appropriate surrogate decision maker. There are several reasons to justify this practice: (1) family members usually have the greatest concern about the patient’s welfare; (2) family members are most knowledgeable about the patient’s health-care values and goals; (3) family members form a social unit that should be recognized as a unitary decision maker; and (4) there is a common law basis for respecting the wishes of family members in the absence of a prior formal surrogate appointment.31 Physicians can respect the wishes of the family as a surrogate assuming the family speaks with one mind and is not divided. The problem of handling the divided family is considered in chapter 2.

Surrogate decision makers cannot properly execute their important role in making health-care decisions for incompetent patients without understanding the standards that guide their decision making. Three general decision- making standards are recognized in ethics and the law: the standards of expressed wishes, substituted judgment, and best interests. Different jurisdictions have cited these standards in rulings with varying degrees of emphasis. I discuss these three standards in descending order of their ethical power, a hierarchy based upon their ability to recapitulate the decision that would have been made by the patient and thus respecting the patient’s autonomy.32


Expressed Wishes

Surrogate decision makers first should try to follow wishes expressed previously by patients when they were competent that pertain to the current clinical situation. For example, if the patient had expressly stated that she did not wish to receive cardiopulmonary resuscitation in the event of expected cardiopulmonary
arrest, the surrogate should insist that the physician write a Do-Not-Resuscitate order. Patients’ written advance directives (such as living wills or proxy appointment written directives, discussed later) are an important place to search for their expressed wishes.

Following the standard of expressed wishes most closely respects a patient’s autonomy by permitting her to continue to consent for or refuse specific medical treatment despite the fact that she now is incompetent. The practical problem with this standard is that most patients cannot possibly have anticipated and discussed their preferences in the numerous specific clinical states that later may occur. Even written wishes expressed in a living will (see below) usually are too vague and ambiguous to be of use except in the most general way. Thus, though it is powerful ethically, this standard often cannot be applied in practice.


Substituted Judgment

When a surrogate does not know the patient’s expressed wishes, she should attempt to reproduce the decision the patient would have made by applying the patient’s values and preferences to the situation in question.33 This process of making a judgment by “walking in the patient’s shoes” is known as the standard of substituted judgment. Success in executing true substituted judgment requires the proxy to have a clear concept of the patient’s health-care preferences, goals, and values as well as the courage to apply and uphold them despite her own potential misgivings. Preferences of the patient may be evident from written directives, conversations the proxy had with the patient, or deductions the proxy can make based on the way in which the patient has lived her life.34

Substituted judgment is an ideal that does not succeed fully in clinical practice. Its practical limitations were illustrated convincingly in a study of spouses’ predictions of patients’ choices for undergoing cardiopulmonary resuscitation (CPR). Each spouse surveyed was asked to predict whether or not the patient would choose to undergo CPR if the patient’s heart stopped beating. Several scenarios in which this event could occur were depicted. Spouses were assumed to be the ideal surrogate to employ a standard of substituted judgment because of their intimate knowledge of the patient. However, spouses chose incorrectly in over one-third of the cases, usually stating that the patients would wish CPR when in fact they would not. Physicians also erred by a similar percentage in their predictions of patients’ wishes. Tellingly, when the physicians erred, they usually predicted that the patients would refuse CPR when in fact they would consent.35

These same errors in substituted judgment have been replicated in several subsequent similar studies, showing only a modest level of accuracy when spouses, children, and other surrogates attempt to replicate patients’ treatment decisions. David Shalowitz and colleagues performed a meta-analysis on 16 studies of surrogate decision making using a substituted judgment standard for end-of-life decision making. They found 151 hypothetical scenarios involving 2,595 surrogate-patient pairs, with a collective analysis of 19,526 patient-surrogate paired responses. Overall, surrogates predicted patients’ treatment preferences with 68% accuracy. Surrogates’ treatment preference accuracy was improved neither by patient designation of surrogates nor by prior discussion of patients’ treatment preferences.36

In one study, chosen surrogate decision makers scored no better than volunteers picked randomly to answer a questionnaire listing clinical scenarios about the treatment choices that patients preferred.37 Most of the substituted judgment errors in these studies were committed because surrogates misunderstood patients’ true wishes and had failed to discuss them in advance. One study in England showed that patients’ relatives could not exercise a substituted judgment because they did not know the patients’ CPR wishes. Their decisions presumed what the patients wanted and accorded with those of the physicians.38 Some legal scholars have expressed doubt that the doctrine of substituted judgment, originally created to settle property disputes, ever can be applied usefully to medical decision making.39


Suggestions to improve the accuracy of substituted judgments have included requiring the use of a decision-making syllogism in which the patient’s values are stated explicitly as a premise,40 encouraging the use of concurrent written explicit directives, and most importantly, emphasizing the need for patients while healthy to engage their chosen surrogates in detailed conversations about their health-care values and treatment choices in anticipation of possible future incompetence. Jeffrey Berger recently emphasized that surrogates’ substituted judgments also should take into account what most patients really care about, namely the effect of the clinical decision on those whom the patient loves.41


Best Interest

In instances in which a surrogate decision maker lacks reliable evidence of the patient’s values and preferences, substituted judgments cannot be made. Here, the surrogate must rely on more objective grounds to decide which treatment course is best for the patient. Examples of such objective grounds include the degree of the patient’s suffering with or without treatment, the likelihood of her recovery, and the impact on the family. This decision-making process, known as the best interest standard, asks how a reasonable person would balance the anticipated burdens borne as a result of a proposed treatment course against the benefits accrued from it. If the burdens exceed the benefits, a reasonable person using a utilitarian analysis would conclude that is in the patient’s best interest not to proceed with treatment.42

Best interest judgments are made routinely in infants and young children whose stated health-care preferences do not exist, by state-appointed surrogates who do not know the patients they represent, and by any surrogate who does not know the patient’s values and preferences. The best interest standard is less powerful ethically than the substituted judgment standard because the latter permits physicians to respect the patient’s personal autonomy and self-determination despite her present incompetence. No such goals are possible with a best interest standard. From a best interest decision-making process, a third party can only make a reasoned judgment of what she thinks is best for the patient without applying the patient’s personal ranking of health-care goals and values.

The best interest standard has been justifiably criticized because it requires a judgment about the patient’s quality of life which, although it attempts to be objective, remains inherently subjective.43 Survey studies have shown that physicians systematically underestimate the quality of their elderly patients’ lives and the important meaning to them of even a limited quality of life. Thus, physicians or surrogates could make treatment decisions based on an erroneous concept of a patient’s best interest.44 The personal preferences of spouses and physicians also influence their perceptions of patients’ preferences.45 Decisions of physicians and surrogates reached by a best interest process may be seriously flawed, therefore, because they may differ systematically from the decisions the patients would have made for themselves.

Attempts have been made to enhance the objectification of best interest determinations, to make them less ad hoc, and to make them depend less on the surrogate’s attitude about the patient’s quality of life. For example, James Drane and John Coulehan devised a biopsychosocial model of best interest decision making designed to incorporate and properly weigh all relevant factors in the surrogate’s decision.46 This attempt to systematize the best interest standard will help reduce some of its inherent subjectivity but does not compensate for its ultimate reliance on a judgment about the patient’s quality of life.

Both best interest determinations and substituted judgments are imperfect decision-making processes. In executing their difficult task, surrogates first should try to employ the expressed wishes standard. When the patient’s expressed wishes are unknown, they should decide by substituted judgment to the best of their ability. With no knowledge whatsoever of the patient’s values, they should employ a best interest process but should attempt to objectify assessing the burdens and benefits of treatment and to exercise caution and prudence
when rendering quality of life determinations for elderly or disabled patients. Hospitals should draft policies stipulating the procedures for decision making using the best interest standard when patients lack a surrogate decision maker and advance directives.47


ADVANCE DIRECTIVES FOR MEDICAL CARE

The advance directive is the most powerful extension of the competent patient’s right of self-determination. The physician who respects a patient’s advance directive fulfills her ethical duty to respect the autonomy of a person. Theoretically, an advance directive is superior to a substituted judgment or best interest determination because, as an ex-pressed wish, it does not attempt to reproduce a patient’s decision, it is the decision.48 Physicians have an ethical duty to attempt to follow relevant advance directives to the fullest extent possible and a legal duty to follow those that are legally authorized.

Advance directives are of two principal types: (1) written instructional statements of a patient’s wishes for treatment in different anticipated clinical situations; and (2) written appointments designating surrogate decision makers whose authority is activated when a patient becomes incompetent. Often, the appointment is accompanied by written instructions. There are advantages and disadvantages of each type of advance directive.49 Both have been incorporated into statutory law in the majority of states in the United States and in several other countries.50

Advance directives are a tool to help execute the broader concept of advance care planning. Advance care planning encompasses patients’ prudent anticipation of future medical events and their clear communication to their family and physicians of how they wish to be treated if these events should occur.51 Advance care planning includes patients’ understanding of their diagnosis, the burdens of treatment, the possible outcomes and their likelihood, and their treatment preferences based on their health-care values and goals.52 Patients should communicate clearly with their physicians and close family members to insure that both groups understand their wishes for future treatment and are willing to uphold them.53 Many nursing homes and other chronic care facilities require the completion of an advance care plan to determine in advance what level of treatment to provide in anticipated situations. Unfortunate instances of unwanted and unnecessary aggressive treatment may result from the absence of such advance care plans.54 Advance directives have value when they help in correctly formulating care plans.


Living Wills

The written instructional directive popularly known as the “living will” and called the “terminal care document” in some jurisdictions states the patient’s preferences for future treatment in certain anticipated circumstances. Commonly, living wills contain language such as “If I am ever terminally ill without reasonable hope for recovery, I wish to be permitted to die naturally without receiving life-sustaining treatments.” Although the impetus for executing living wills usually is to limit or terminate life-sustaining treatment in the event of terminal illness, they are not categorically restricted to termination of treatment and may be designed to indicate a wish for maximum medical treatment.55 As a rule, living wills become activated only in the setting of terminal illness. Most but not all states have statutes permitting living will directives.

Most written directives are brief general statements but others are more expansive, with details of particular clinical scenarios and instructions, for example, about whether artificial hydration and nutrition are considered therapies to be withheld. Instructional directives on state-authorized forms are legal documents that require the signature of patient and witnesses. The precise language of written directives and the regulations regarding their execution and implementation, such as the definition of terminal illness, vary from state to state. Some states, such as Ohio, have chosen to legislate lengthy and onerous conditions before a patient can exercise the directive.56 In all jurisdictions, the living will directive
becomes activated only in the presence of a terminal illness that must first be certified by a physician.

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Aug 2, 2016 | Posted by in NEUROLOGY | Comments Off on Clinical Ethics and the Law

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