Handbook of Clinical Neurology, Vol. 118 (3rd series) Ethical and Legal Issues in Neurology J.L. Bernat and R. Beresford, Editors © 2013 Elsevier B.V. All rights reserved

Chapter 2

The analysis and resolution of ethical dilemmas ROBERT C. MACAULEY* Department of Clinical Ethics, Fletcher Allen Health Care and Department of Pediatrics, University of Vermont College of Medicine, Burlington, VT, USA

INTRODUCTION For most of the history of western medicine, ethics received relatively little attention because the right course of action seemed obvious. A short list of basic rules (e.g., do no harm, put the patient’s welfare before one’s own) sufficed to guide medical professionals. Paternalism reigned supreme, placing responsibility for medical decision-making entirely in the hands of physicians. Over time, however, the situation has become substantially more complicated. There are several reasons for this evolution. First, some historic assumptions have not translated well into the modern world. For instance, the overriding emphasis on beneficence (taken to its extreme in the form of paternalism) has gradually given way over the last century to a respect for patient rights and personal choice (i.e., autonomy). Second, in the aftermath of events such as the Nazi prisoner experiments and the Tuskegee syphilis study, physicians can no longer be assumed to do the right thing, even when it is obvious. And, finally, technologic developments in the practice of medicine have created an unprecedented level of complexity, such that well-intentioned, principled clinicians can reasonably disagree as to the best course of actions in ethically fraught situations (Thomasma, 1983). Perhaps no other field of medicine illustrates the ethical dilemmas occasioned by the explosion of technology more than neurology. Prior to the widespread use of ventilators and artificially administered nutrition and hydration, there was no occasion for debate as to the definition of death or to professional obligations toward patients in a vegetative state. The wealth of clinical information afforded by neuroradiologic studies – from CT to MRI to PET scans – has logically prompted the question of what to do with that information. Questions of

decision-making capacity, quality of life, and even personhood now arise frequently in the practice of neurology and require a structured ethical response. In the midst of technologic progress and increasing reliance on evidence-based medicine – where decisions are reached and treatment plans implemented based on empiric (i.e., observable and reproducible) data – ethical dilemmas stand out because they deal with conflicts of values, which are neither measurable nor externally verifiable (Jonsen et al., 2006). Unlike other decisionmaking fields that emphasize quantitative, structured analysis (Hunink, 2001), ethical decision-making is qualitative and narrative (Stiggelbout et al., 2006). This fact opens ethical deliberation to criticisms of lack of intellectual rigor, whether by virtue of the absence of established algorithms to follow or quantitative values to analyze (Engelhardt, 2012), or accusations of personal bias (Scofield, 1993). Indeed, surveys of ethicists reveal a wide diversity of opinion as to the optimal course of action (Fox and Stocking, 1993). As one critic stated, “One man’s categorical imperative is another man’s heresy” (Shalit, 1997). Even though ethics is taught at all medical schools in the United States (Fox et al., 1995) and most postgraduate residency programs (Forrow et al., 1991), many physicians possess only a rudimentary appreciation of the subject. The four principles of bioethics (Beauchamp and Childress, 2009) and the four-quadrant approach to ethical dilemmas (Jonsen et al., 2006) may be easy to remember, but applying these constructs to real-life situations requires nuance, expertise, and wisdom. Sometimes the constructs are so theoretical as to defy application to particular situations, and at other times the obligations that flow from them are clear but conflict with other obligations (Callahan, 1996). An effective

*Correspondence to: Robert C. Macauley, M.D., 111 Colchester Avenue, Smith 266, Burlington, VT 05401, USA. Tel: þ1-802-8472000, E-mail: [email protected]

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method of resolving ethical dilemmas must take theories into account but, more importantly, provide practical guidance to patients, families, and medical professionals (LaPuma, 1990). In this chapter, I attempt to dispel the common misperception that ethical analysis is idiosyncratic or overly theoretic by providing a structured approach for analyzing moral problems in the practice of medicine. In so doing, I present an approach which bears striking (and intentional) resemblance to the systematic evaluation of patients used by clinicians. In addition, this approach provides a method for resolving ethical disagreements, which often persist following a thoughtful and comprehensive analysis of a clinical situation. For unlike academic discussions of hypothetical ethical dilemmas, clinical ethics involves the very real problems facing patients, families, and clinicians. As such, it is not sufficient to recognize the complexity of a given situation by highlighting the respective arguments for and against a proposed course of action. A decision must be made, often choosing between alternatives of varying degrees of undesirability. As such, clinical ethics has been described as the search for the “least bad option,” since, if a good option were available, someone would have already identified it (Powderly, 2003).

Classification of the dilemma: Is it ethical? Yes

Resolution

Response determined by type of dilemma No

Yes

Communication Sharing of information

Relational Mediation

Acquisition of additional information: Resolved? No

Analysis: • Rights Resolution. Yes • Duties Fine-tuning of • Consequences response • Virtue Review and learn • Cases from process Resolved? No More information needed? Temporize Pitfalls to avoid: • Rationing at the bedside • Worst option • Impractical solutions

A STRUCTURED APPROACH TO ANALYZING ETHICAL DILEMMAS Over the past three decades, many approaches to analyzing clinical ethical dilemmas have been proposed (Thomasma, 1978; Siegler et al., 1990; Doukas and McCullough, 1991; Doukas, 1992; Gillon, 1994; Fletcher and Boyle, 1997; Finnerty et al., 2000; Kaldjian et al., 2005; Jonsen et al., 2006; Lo, 2009). As will be evident from the ensuing discussion, there are profound similarities between these methods, especially in the preliminary steps they advocate. Thus, while some might reasonably question the applicability and generalizability of the conclusions reached by these methods, the method of reaching these conclusions is remarkably standardized and thus not open to accusations of idiosyncracy. In order to maximize applicability in the day-to-day practice of medicine, the methods proposed tend to bear significant resemblance – often with explicit recognition of this fact (Thomasma, 1978; Kaldjian et al., 2005) – to the time-proven clinical assessment of a patient: subjective report (medical history), acquisition of clinical data (through physical exam, and laboratory and radiologic evaluation), assessment, and plan. As such, these methods should appear familiar and reasonable to clinicians, as they bring to bear well-honed skills traditionally used for diagnosis and treatment, now applied to the task of identifying and resolving ethical dilemmas.

No

Review of existing information: Resolved? Yes

Biotechnical Review of evidence

Fig. 2.1. Algorithm for analysis and resolution of potential ethical dilemmas.

These approaches generally involve the following steps/ components, which are depicted in Figure 2.1 and examined in greater detail below: 1. 2. 3. 4. 5.

Clarify and classify the dilemma Review existing information Acquire additional, relevant information Analyze the ethical issue, with reference to relevant legal and professional considerations Formulate response, consider criticisms, and identify lessons learned

Clarification and classification of the dilemma An ethical dilemma involves a conflict of values, in which there is more than one acceptable course of action or, more often, there are mutually exclusive goods, thus forcing the clinician to choose among them (Thomasma, 1978). Situations in which clinicians are unsure what to do – or where they are sure what to do but something is preventing them from doing it – often appear, at first glance, to be ethical in nature. The first step in

THE ANALYSIS AND RESOLUTION OF ETHICAL DILEMMAS addressing a perceived dilemma is to clarify the question to be answered, and then to determine if it is, indeed, an ethical dilemma. In some cases, this determination can be quite a challenge. A patient, family, or staff person may raise a profound concern, but they may not be able to articulate the precise nature of their discomfort. “This just feels wrong,” they might say. In the language of the classic medical model, this is akin to a patient presenting with a chief complaint, not yet knowing its cause (Kaldjian et al., 2005). The person’s feelings are valid and merit further analysis as well as clarification of the medical facts, but this may not represent an ethical dilemma (Ahronheim et al., 2005). As a practical example, consider a family member who is questioning why a patient is not receiving a requested treatment. There are many potential nonethical explanations for the family member’s concern. First, the reason for not providing the treatment may be biotechnical, rather than ethical (Lo, 2009). The treatment in question, for example, may not be indicated for the patient’s condition. Such concerns may also stem from a failure of communication (Kelly et al., 1997; Fetters and Brody, 1999; DuVal et al., 2001). The family may have come to believe – perhaps through independent research or media reports – that the treatment could be beneficial. Often additional conversation or review of all available information can resolve the perceived dilemma. Alternatively, the problem may be more relational than informational, based on interpersonal conflict between the patient, family, and/or healthcare team. The family may feel ignored or not taken seriously, and the treatment in question may be the occasion for expressing their underlying feelings. In situations such as this, mediation of the conflict can be helpful (Orr and deLeon, 2000), through acknowledgment of the autonomy of all parties, informed decision-making, and assurance of confidentiality (Dubler and Liebman, 2004). Situations such as those noted above are so common that some have even claimed that most conflicts encountered in the practice of medicine are false dilemmas (Fins, 1996). Conversely, some dilemmas which are, indeed, ethical in nature may initially not be acknowledged as such. In such cases, there may exist a failure to recognize either the overriding importance of one value, or the fact that two or more values are in conflict (Forrow et al., 1991). For instance, a clinician’s reluctance to provide a specific treatment for a patient certainly could initially be framed in terms of probability of success (a biotechnical question), but it could also be because of that clinician’s belief that the patient’s potential quality of life is not sufficient to justify the treatment (a profoundly ethical question). Only in situations

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in which the question is crisply framed and determined to be ethical in nature is further ethical analysis indicated. Proposed structures of ethical analysis differ as to the degree to which the question needs to be “classified” at this stage. Some advocate “[identifying] the basic principles involved and [explaining] how they relate to the case” (Rhodes and Alfandre, 2007), thus making it possible to distinguish between conflicting principles and uncertainty as to what a specific principle requires. Other experts consider identifying the conflicting principles to be premature at this stage, thus leading to an exaggerated use of principles in problem-solving (Fletcher and Boyle, 1997). While the former approach may be appropriate for trained ethics consultants, it is not reasonable to expect clinicians to classify ethical dilemmas at this early stage. Instead, it is enough simply to identify the competing goods – such as increased likelihood of survival, optimal comfort, respect for patient wishes, and proper use of scarce resources – that appear to be in conflict, and which render the dilemma ethical in nature. While the professional ethicist might tend to apply technical terms such as autonomy and beneficence to these goods, it is sufficient at this point to admit that all goods cannot be simultaneously achieved, forcing the patient and the medical team to make a difficult choice about which informed, well-intentioned people could reasonably disagree (Thomasma, 1978; Siegler et al., 1990; Forrow et al., 1991; Doukas, 1992).

Review of existing information As an old saying goes, “Good ethics begin with good facts.” A review of existing information relating to the perceived dilemma will not only help clarify whether the dilemma is ethical in nature; it is also integral to resolving the dilemma. Throughout the review, it is crucial to keep an open mind regarding the competing issues at play, in order not to leap prematurely to a conclusion. As John Dewey (1991) wrote, “The essence of critical thinking is suspended judgment; and the essence of this suspense is inquiry to determine the nature of the problem before proceeding to attempts at its solution.” A thorough understanding of the clinical situation is the universal starting point for all proposed systems of ethical analysis, although the terminology varies slightly, with references to “medical factors” (Thomasma, 1978), “medical indications” (Jonsen et al., 2006), “medical facts and goals” (Kaldjian et al., 2005), and similar terms. This process necessarily involves a thorough review of the patient’s medical record and discussion with the professionals involved in the patient’s care. The end result is a comprehensive understanding of

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the patient’s current condition, prognosis, and treatment options, with attendant risks and benefits. The next step is to identify the patient’s goals (Kaldjian et al., 2005; Lo, 2009), what others have called “patient preferences” (Jonsen et al., 2006) or “human factors” (Thomasma, 1978). Patients who possess sufficient decision-making capacity may be able to express their goals and values directly. In situations where capacity is impaired or absent, the patient may have expressed his or her wishes at an earlier point in time, perhaps in the form of an advance directive. Additionally, loved ones (whether family or friends) may have a sense of the patient’s goals and values, gleaned from prior conversations or interactions, and thus are able to offer “substituted judgment” as to what the patient would want (Beauchamp and Childress, 2009). Here it is critical to distinguish – in the terminology of mediation – between positions and interests (Fisher et al., 1997). It is often said that a patient wishes to be “full code,” or “have everything done.” Strictly speaking, nobody wants to receive cardiopulmonary resuscitation or be intubated – as both are highly burdensome — and it is logistically impossible to do every possible medical procedure to a single patient. These are positions which reflect an application of the patient’s goals to a clinical situation. “Patient preferences,” on the other hand, are interests, by which we mean human hopes and longings. As such, they are not inherently linked to specific medical procedures. Viewed in this light, “full code” may represent a fervent wish to survive despite significant burden and low probability of success. It is crucial at this stage to identify the patient’s interests in nonmedical terminology, which allows them to be analyzed in light of the specific medical situation. In the well-known “four quadrant approach” (Jonsen et al., 2006), medical indications and patient preferences represent the upper two quadrants which, when not in conflict, are often sufficient to resolve perceived dilemmas. However, when the patient (or surrogate decision-maker) disagrees with the medical team as to what should be done – in ethical terminology, when autonomy and beneficence are in conflict – then further information is necessary. The third “quadrant” deals with the patient’s quality of life, both prior to the current situation and in the future, to the degree to which that can be predicted. Specific attention must be paid to the patient’s goals and values and how they relate to projected quality of life. It is imperative here to use the patient’s own measure of an acceptable quality of life, given that physicians tend to underestimate patients’ quality of life, especially in subjective domains such as emotion and pain (Janse et al., 2004). The fourth quadrant is “contextual features,” which take into account familial, social, religious, cultural,

and financial factors. Attention to these factors recognizes that a variety of considerations play into a patient’s or surrogate’s decision. In addition, it acknowledges that most patients have substantive personal relationships, such that what happens to the patient influences others as well. And while some might argue that the medical team’s concern should be solely focused on the patient, even a modest recognition of interrelationship necessitates consideration of other people’s feelings, beliefs, and values as well (McCullough, 1984).

Acquisition of additional, relevant information In many situations, a review of available data reveals that some pertinent information has not yet been obtained. There are several reasons for this deficiency. First, the situation may be sufficiently critical that the medical team has been so caught up in stabilizing the patient that they haven’t had the time or resources to acquire supporting information. Alternatively, the additional information may lie outside the traditional realm of data acquired in the care of a patient, especially one who is critically ill. For instance, it is not uncommon for the clinical team to focus on the patient’s chief complaint and history of present illness, delving into the patient’s goals and values only insofar as necessary to establish a “code status.” In such situations, it can be invaluable to obtain further information as to the patient’s beliefs and goals – such as by taking a “values history” (Doukas and McCullough, 1991) – which can then inform decision-making in ethically complex situations. In situations in which the patient is not able to provide such a history – or in which the patient is espousing goals or values that seem in conflict with the patient’s longstanding beliefs, leading to concern regarding decisional capacity – it is critically important to engage the patient’s family and friends in the discussion. Just as prior discussions with the patient concerning values may have been rather cursory, the same may have been the case with friends and family. If they were previously asked simply whether the patient wanted “everything done,” in the face of ethical complexity more details must be acquired. In addition, some individuals who know the patient well may not have previously been involved in the discussions. Steps should be taken to ensure that all relevant members of the patient’s family and other loved ones have the opportunity to share their perspectives (Levine and Zuckerman, 1999), with primary focus on the patient’s goals and values. Preliminary explorations of ethical dilemmas also frequently overlook nonphysician medical staff who may be able to provide useful information regarding the patient’s frame of mind and prognosis. For instance,

THE ANALYSIS AND RESOLUTION OF ETHICAL DILEMMAS nurses (especially the primary nurse) generally spend much more time with a patient and family than do physicians. Therapists (whether psychological, physical, or occupational) have valued windows into the patient’s mental and functional state. Chaplains may have had the opportunity to spend significant time with the patient exploring nontechnical issues, including hopes and goals and beliefs. In the case of hospitalized patients, outpatient clinicians (such as the patient’s primary care provider or staff from a nursing home or visiting nurse association, if applicable) can offer a perspective not otherwise available to hospital staff (Orr and Shelton, 2009). In addition to information regarding the patient in question, it may also be necessary to acquire additional information about the dilemma which the patient is facing. For instance, professional oaths or codes of ethics may refer to the clinical situation (British Medical Association, 2004; Turton and Snyder, 2008; American Medical Association, 2010–2011), although frequently such comments are too vague to be of assistance with specific decisions (Veatch, 2006). Certain hospital or institutional policies may address the particular situation. While these policies may not be determinative, at least they will provide a context for the decision to be made and additional perspective as to how similar situations have been resolved in the past. Finally, there may be legal ramifications to various courses of action, which would require a review of relevant statutes and case law, on both federal and state levels.

Analysis of the ethical issue Essentially every published approach to resolving clinical ethical dilemmas advocates delineation of the question and acquisition of all relevant information, both that which is known and the additional information that is required. In the process, many purportedly ethical dilemmas are shown not to be ethical, and the appropriate method of resolution becomes clear. In situations in which the dilemma is deemed to be ethical in nature, these steps ensure that any proposed resolution will be, at the very least, fully informed. In addition, they achieve the basic task of ensuring that moral perceptions – which may have previously been unspoken or even unrecognized, yet nevertheless prompted ethical examination of the case – are made explicit and transparent (Brody, 1989). At this point, however, the various approaches diverge as to how to resolve an ethical dilemma once all relevant information is in hand. This divergence will not surprise clinicians who have grappled with such situations. As noted in Chapter 1, there is a wide variety of paradigms by which ethical decisions can be made. One might, therefore, be tempted to choose one particular

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paradigm (principlism, for example) to analyze ethical dilemmas. There are two major drawbacks to this approach, however. In the first place, reliance on one paradigm is no guarantee of resolution. For if autonomy and beneficence are in conflict – as in the above example of a patient or family requesting nonbeneficial treatment – it is not entirely clear how a principlist should decide which principle takes precedence (Thomasma, 1978; Gillon, 1994; Beauchamp and Childress, 2009). And, secondly, even if the paradigm generates a conclusion, exclusive reliance on one theory will limit the applicability and generalizability of that conclusion. As a result, the most one can hope for is a measured conclusion that “the principlist would do this, and the consequentialist would do that” (Finnerty et al., 2000). Thus, even if such an approach necessarily generated a response to an ethical dilemma, that response would likely not be universally embraced. Indeed, the very act of applying a theory – any theory – is open to criticism because it assumes a deductive approach to the problem, through reliance on universal rules which may not pay sufficient attention to the details of a particular case (Jecker, 1997). Recognizing this potential drawback, some experts limit the use of principles to hypothetical – rather than determinative – guides (Fins et al., 1997), while others go further in recommending an explicitly inductive approach to ethical decisionmaking, whereby the case in question is compared to similar cases in order to determine where the limits of acceptability reside (Jonsen and Toulmin, 1988). On such an approach, the rules are generated by a thoughtful analysis of cases, instead of the analysis of the case following logically from predetermined rules. This represents a practical recognition that specific facts about the world and people in it affect – perhaps even determine – the principles we choose to apply to a particular situation (Hare, 1981). Rather than appealing to one specific ethical theory – or to any theory at all – it is more practical as well as more generalizable to draw from a variety of approaches in addressing ethical dilemmas. In so doing, a wide swath of relevant concerns can be taken into consideration in the formulation of what has been called – in keeping with the parallel structure of the clinical workup – an “ethical differential diagnosis” (Fins et al., 1997). Examples of such an eclectic, broad-based approach include Rhodes and Alfandre’s consideration of the “principles/duties/concepts of medical ethics” that are listed in Table 2.1 (Rhodes and Alfandre, 2007), as well as Doukas’ consideration of “ethical norms,” such as autonomy, beneficence, contract keeping, honesty, and justice (Doukas, 1992). The strength of this approach is its comprehensiveness. By balancing not only deductive approaches (such as principlism and consequentialism) but also inductive

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Table 2.1 Principles/duties/concepts of medical ethics ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ● ●

Duty to provide care Assess decisional capacity Confidentiality Assess surrogate appropriateness Truth-telling Respect for autonomy (patient goals) Minimize harms Beneficence/caring (team goals) Duty to warn Nonjudgmental regard Professionalism Trust/fiduciary responsibility Informed consent Justice (fair allocation of scarce resources) Justify paternalism Futility (furthers no goals) No conflict of interest Professional competence Evidence-based practice Responsibilities to peers and institutions

Adapted from Rhodes and Alfandre (2007).

ones (such as casuistry), this approach strives for coherence between theories that describe how one should act, and practical examples of ethically appropriate actions (Beauchamp and Childress, 2009). However, this feature is also potentially its greatest drawback. For if principlism, for example, can be criticized for not providing a method of adjudicating between at most four competing principles, how much more could an eclectic approach be criticized for not providing a clearcut mechanism for balancing competing considerations drawn from numerous rights, duties, consequences, virtues, and cases? This criticism can be tempered in two ways. First, it is important to recognize that such complexity is intrinsic to the endeavor of ethical deliberation, lacking as it is in quantitative or objective measures. Further, the approaches included in this method are more complementary than competitive, and thus provide a well-rounded and comprehensive assessment of complex issues. To enhance applicability, specific concerns within each “consideration” that typically take precedence are highlighted, in order to streamline the process of ethical decision-making.

RELEVANT LEGAL AND PROFESSIONAL CONSIDERATIONS Rights While there has long been a recognized need for clinicians and patients to engage in shared decision-making (National Commission for the Protection of Human

Subjects of Biomedical and Behavioral Research, 1978), nevertheless, situations occur where patients and clinicians disagree as to the appropriate course of action. In such situations, the rights of the patient and family might be seen as in conflict with the rights of the professionals involved. While one could generate a long list of relevant human and professional rights (Freeden, 1991), for the purposes of this discussion I will focus on patient autonomy and professional autonomy.

PATIENT AUTONOMY In modern American culture, autonomy reigns supreme (Veatch, 2009). The right of competent patients to refuse essentially any treatment is clearly codified in the law (Cruzan v. Director, Missouri Department of Health, 1990) and in standard bioethics treatises (Beauchamp and Childress, 2009). This emphasis on autonomy can be taken to extremes, however. Some commentators seem to feel that no ethical dilemma can exist when the patient’s wishes are clearly known. Indeed, some clinical ethicists seem to be no more than protectors of patient autonomy, rather than experts in negotiating moral ambiguity (Gorovitz, 1986). The application of this right is not as clear cut as it first appears, however (Schneider, 2002). One reason for this is that “autonomy” can be understood in two different senses. Classically, an “autonomous” choice was not only a freely made choice, but also a rational one (Kant et al., 2002). On this understanding, an illconsidered, impetuous decision would not be considered truly “autonomous.” In the medical literature, however, autonomy is often reduced to a choice made without coercion and without significant cognitive impairment, regardless of the negative consequences for the patient. While routinely overriding seemingly irrational – or “heteronymous” (Trotter, 2012) – decisions would make a sham of the principle of the right of patients to disagree with their physicians, there are certain situations in which the patient’s decision-making capacity warrants more in depth evaluation, in order to be sure that the decision truly reflects the patient’s goals and values (however rational or irrational those may appear to be). Situations in which the decision is extremely complex, the consequences of the decision are especially grave, or the decision is contrary to what a “reasonable” person would typically want require the physician to be certain that the patient has sufficient decision-making capacity to make that decision (Buchanan, 2004). Such a slidingscale approach either to the patient’s capacity (Buchanan and Brock, 1989; Grisso and Appelbaum, 1998) or evidence of that capacity (Beauchamp and Childress, 2009) recognizes both the importance of respecting autonomy as well as the consequences of

THE ANALYSIS AND RESOLUTION OF ETHICAL DILEMMAS decisions made in the context of uncertain decisional capacity (Pellegrino and Thomasma, 1988). The right of autonomy is also relevant to patients who can no longer exercise that right (In re Quinlan, 1976). For a patient who lacks decision-making capacity, those who know the patient well – whether appointed by the patient in durable power of attorney for health care, appointed guardian by a court, or else identified as an appropriate surrogate according to relevant state law (Pope, 2011) – provide “substituted judgment” based on what the patient would have wanted. This necessarily injects an additional layer of complexity, given the inherent uncertainty as to what another person might choose (Shalowitz et al., 2006), not to mention the potential for the surrogate’s own feelings or beliefs to influence his or her decision (Fagerlin et al., 2001). Just as the capacity of a patient must be taken into account in respecting the patient’s autonomy, so must the reliability of a surrogate in estimating what that patient would want. The concept of autonomy also needs to be applied differently in situations in which a patient is requesting a treatment, compared to one in which the patient is refusing a treatment. Here the distinction between positive and negative rights is critical (Feinberg, 1973). A negative right is one of noninterference, according to which others cannot stand in the way of a person’s obtaining something. This right is based on the Fourteenth Amendment to the Constitution, which bars the government from depriving a person of “life, liberty, or property” without due process of law. A positive right, on the other hand, is a right of entitlement, which necessarily incurs an obligation on the part of another (often the government) to help people obtain that to which they have a right, if they are unable to do so on their own. Because positive rights are so broad, there are relatively few in American society: education through grade 12, police protection, fire protection, and military protection are among them. In a medical context, the “right” of autonomy is predominantly a negative right. That is to say, patients with sufficient decision-making capacity have the right to refuse unwanted treatment, even one that is lifesustaining. However, patients do not have the right to receive any treatment which they request. Plentiful reasons exist – such as lack of benefit, disproportionate burden, and scarcity of resources (as in solid organ donation) – for not providing a requested treatment. Indeed, the American Medical Association clearly states that “patients should not be given treatments simply because they demand them” (American Medical Association, 2010–2011). Thus, a patient’s “right” to a requested treatment is less compelling than their “right” to refuse unwanted treatment, causing the clinician to take multiple other factors into account.

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PROFESSIONAL AUTONOMY The right to decide for oneself (e.g., autonomy) is a basic human right, and as such it is considered inalienable and nonnegotiable (Freeden, 1991). Professional rights, on the other hand, are more circumscribed, based on the social contract under which that profession functions. Physician autonomy is often manifested in the form of the professional right of conscience (Wardle, 1993). If patients do not have an absolute right to any treatment they request, to what degree should the physician’s own moral beliefs be taken into consideration when determining whether to provide that treatment? Often a physician’s refusal to provide a specific treatment is a biotechnical decision that is defensible based on the best available evidence (Cassel and Guest, 2012). In other cases, however, the physician’s refusal is based on ethical rather than empirical grounds. While some defend the physician’s right to refuse (Wicclair, 2008), others assert that someone who is unwilling to provide requested legal procedures should essentially choose another profession (Savulescu, 2006). In balancing the patient’s right of autonomy and the clinician’s right of conscience, the former typically takes precedence based on the fiduciary responsibility of the physician to the patient (Swick, 2000). In most situations, the physician may be able to transfer care of the patient to a colleague who does not hold the same moral reservations about the requested procedure (Curlin et al., 2007). Where that is not possible – and the physician’s refusal essentially determines that the patient cannot receive the procedure – the physician may be obligated to provide the treatment, as long as it is legal and consistent with the standard of care.

Duties In addition to the rights of patients as human beings and to physicians as conscientious moral individuals, there are also specific duties which the physician owes to the patient by virtue of the professional relationship (Gert et al., 2006). Several of these are directly relevant to the resolution of ethical dilemmas.

NONMALEFICENCE Perhaps the most compelling duty of a physician to a patient is to “first, do no harm” (Beauchamp and Childress, 2009). There may exist debate as to a patient’s right to a certain intervention and whether that intervention holds out the prospect of benefit, but before proceeding with any intervention the physician must be confident that it will not cause undue harm to the patient. This duty applies to nearly all medical procedures, since

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it is difficult to imagine a procedure that does not hold out some risk of injury or suffering, however minor. The duty of nonmaleficence is an important counterbalance to physicians’ recognized tendency towards action, which some have termed “commission bias” (Groopman, 2007). This tendency – especially when coupled with the patient’s autonomous request for a specific treatment – can make it very difficult for the physician to decline. Yet when there exists a significant risk of harm – especially without prospect of proportional benefit – physicians are permitted (even obligated) to refrain from acting, or at least defer action until the risk/benefit ratio improves.

TRUTH-TELLING Another duty the physician has toward patients and family is that of veracity, or truth-telling. This duty relates to the patient’s right of autonomy, since it is not possible to exercise that right if the patient does not have an accurate sense of the present situation, future prognosis, and options available. One can imagine situations, however, when this duty seems to conflict with other duties or responsibilities. For instance, in situations where certain information is deemed potentially detrimental to a patient, some physicians have invoked “therapeutic privilege” in withholding that information. The courts have looked with disfavor upon this practice (Thornburgh v. American College of Obstetricians, 1986), however, and recent revisions of the American Medical Association Code of Ethics have deemed the practice “ethically unacceptable” (American Medical Association, 2010–2011). Other challenging situations include potential pressures to withhold or alter information provided to a third party, such as an insurance company, in order to procure needed services for a patient (Morreim, 1991). While the pressures are real and the motivations for considering such a course of action may be noble, there is no ethical justification for lying. However, there may be situations in which complete disclosure is not required, and may even be contraindicated. For instance, patients may waive their right to informed consent if they freely choose not to know the risks, benefits, and alternatives of a given procedure (Faden et al., 1986). In certain cultures, the locus of decision-making is not so much the patient (as it is under the autonomy-dominated American model), but rather the family. In such cases, it is appropriate to ask the patient how much information he or she would like to receive, and whom he or she would want to make medical decisions. In so doing, patients’ autonomy as well as their cultural background are respected (Searight and Gafford, 2005).

CONFIDENTIALITY Treating patient information as confidential has been an integral part of medicine since the age of Hippocrates (Moskop et al., 2005), and is also explicit in the law (Health Insurance Portability and Accountability Act, 1996). There are, however, specific legal obligations which supersede the patient’s right of confidentiality, namely the duty to warn or protect others at risk of harm (Soulier et al., 2010), as well as the duty to report certain situations or results, such as specific communicable diseases or the abuse or neglect of a child or vulnerable adult (Mathews and Kenny, 2008). Generally, the duty of confidentiality is compelling unless there is a specific legal requirement to breach that duty.

Consequences BENEFICENCE In addition to the rights of patients and physicians, and the professional duties of physicians toward their patients, another major consideration in examining an ethical decision is the expected outcome of that decision (Smart and Williams, 1973). Physicians are tasked with determining a course of treatment that not only reflects the patient’s goals, but also represents the optimal balance of benefits and burdens. While the future cannot be known with certainty, recommendations should be based on the best available evidence. Arguably, most true ethical dilemmas stem from a conflict between what the patient wants – and may or may not have a right to – and what the physician believes is best for the patient (i.e., the principle of beneficence). When paternalism reigned supreme, this conflict did not represent a problem, because patients’ wishes were not solicited, nor was their consent for treatment sought. In the era of patient autonomy, however, physicians are often faced with situations where the patient is refusing something potentially beneficial, or requesting something that is potentially harmful. In situations in which the patient has sufficient decision-making capacity and is fully informed, the right of refusal trumps the duty of beneficence (McCullough, 1984). And when the patient requests something whose harms are well known and disproportionate, the physician’s obligation of nonmaleficence takes precedence. But what about situations in which the patient requests something that might work but is suboptimal, or for which the balance of benefits and burdens is unfavorable? Here one might imagine an experimental treatment, or one which merely sustains the patient in a compromised condition in the slim hope of subsequent improvement. The issue here is not the physician’s

THE ANALYSIS AND RESOLUTION OF ETHICAL DILEMMAS personal moral objections, but rather professional disagreement as to the most beneficial course of action. Clearly, a wide variety of other concerns are relevant to the provision of treatment of questionable benefit, such as resource allocation, creation of false hope, and potential harm to the patient. In general, though, where the burden/benefit balance is not overwhelmingly negative and the related costs (both monetary and material) are not exorbitant, and where there exists the potential for improvement, the physician should provide the treatment (at least initially). As noted below, this course of action preserves options, since it is possible to scale back subsequent treatment, but it is not always possible to escalate it. In addition, it provides the patient and family reassurance that relevant measures have been used (Kasman, 2004), and also potentially brings them to a point in which they clearly recognize that the treatment in question is not providing benefit.

Virtues Up to this point, the analysis has focused on rights, obligations, and outcomes, without taking into account the motivation behind the actions. By contrast, some commentators place virtue in a pre-eminent position in evaluating the propriety of a certain decision, citing specific qualities of exemplary physicians, such as compassion, fidelity to trust, and practical wisdom (Pellegrino and Thomasma, 1993). Others situate virtue in a confirmatory position, asking whether a presumptive decision is what “a consensus of exemplary doctors would agree to” (Rhodes and Alfandre, 2007). Even scholars associated with supposedly “rival” methodologies, such as principlism, recognize the importance of virtue in determining an appropriate course of action (Beauchamp and Childress, 2009). At the very least, an analysis of motivation can serve to clarify, confirm, or nullify a proposed response to an ethical dilemma. In certain situations, the complexity of the ethical analysis may be overwhelming, thus making it impossible to settle on any specific conclusion. Interpreting the situation in light of the motivation that would drive a person to pursue competing options may reframe the discussion in a way that permits additional progress and, eventually, resolution. In other contexts, an analysis of virtue can confirm the appropriateness of a certain course of action, based on its alignment with what a virtuous physician would do. Finally, there may be instances in which a virtue-based analysis nullifies a proposed resolution dilemma, if one is unable to conceive of an exemplary physician acting in such a fashion. As is true with all the other methodologies noted so far, a virtue-based approach is susceptible to internal tension or disagreement. Two or more virtues may appear to be in

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conflict with each other, such as compassion and fidelity to trust in the case of a patient with a newly diagnosed terminal illness whom the physician is reluctant to inform of his diagnosis. Even when a specific virtue is acknowledged as most compelling, there may be disagreement as to what actions that virtue should lead to. By referencing virtues along with the other considerations noted above, however, a balanced and comprehensive response can be reached.

The use of cases Some approaches to ethical dilemmas do not emphasize principles at all (DuBose et al., 1994). Casuistry, for instance, reasons inductively from “paradigmatic cases,” using analogy to determine whether a proposed course of action is ethically acceptable (Jonsen and Toulmin, 1988). While some scholars criticize such an approach precisely because it appears to be devoid of any ethical theory, others appropriately claim that casuistry is “theory-modest” (Arras, 1991), in that it takes a structured approach based on the belief that ethics is “a series of practices that arise from human moral experience” (Ahronheim et al., 2005). Casuistry offers many potential benefits. First, like virtue ethics, casuistry offers a valuable confirmation and/or clarification of a presumptive decision, by placing that decision on a spectrum of similar dilemmas. Casuistry can also provide guidance in situations where the competing ethical theories, duties, and obligations are so complex that it is difficult even to generate a presumptive resolution. Finally – and here casuistry distinguishes itself from virtue ethics – case-based reasoning recognizes that sometimes it is easier to agree on a practical resolution than on the ethical underpinnings of that solution. There are plentiful examples of groups reaching consensus as to the appropriate course of action, only to devolve into fervent dissent when attempting to identify the appropriate rationale for the consensus (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). Irrespective of the route which brought involved parties to a given decision, if that decision represents consensus – and meets the requirements of the respective ethical models used to reach it – then that decision should be accepted.

Formulate response, consider criticisms, and identify lessons learned The more comprehensive an approach one takes to an ethical dilemma, the more cumbersome and potentially conflicting the results will be. As Beauchamp and Childress (2009) note, “No theory approximates [the ideal of putting] enough content in its norms to escape conflicts and dilemmas in all contexts.” The approach

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outlined here attempts to divide considerations into manageable and applicable divisions – rights, duties, consequences, virtues, and cases – while prioritizing arguably the most important elements within each category (such as the right of patient autonomy, the duty of nonmaleficence, and goal of maximizing beneficial outcomes). Such a structure is helpful in identifying the nature of an ethical dilemma by delineating relevant considerations and generating potential responses. Because this approach does not rely exclusively on one methodology, it is valuable in forging consensus. It also resembles the “clinical pragmatism” approach of John Dewey, which “treats moral rules and principles as hypothetical guides that identify a range of reasonable moral choices for the deliberations of patients, families, and clinicians” (Fins et al., 1997). Even when a decision is reached in response to a dilemma, the process of ethical deliberation is not finished. At this point, it is crucial to explore the potential criticisms of the proposed course of action, which can serve to identify previously unrecognized concerns and potential drawbacks to the proposed solution (McCullough, 1984). In addition, once the solution has been enacted, it is important to observe the results and continue to modify future responses in light of them. Proposed ethical resolutions, therefore, represent “hypotheses to be worked out in practice, and to be rechecked, corrected and expanded as they fail or succeed in giving our present experience the guidance it requires” (Dewey, 2004). This process also builds greater expertise in addressing future ethical dilemmas, based on the skills and experience acquired.

NEXT STEPS IN THE ABSENCE OF RESOLUTION Despite its comprehensiveness, this approach is no guarantee of reaching consensus regarding an ethical dilemma. In such cases, it is important to review the steps noted above to determine if any relevant considerations have been overlooked. Can more information as to the patient’s preferences or the medical context be acquired? Have all persons with relevant knowledge (whether personal or professional) been consulted? Have any relevant considerations been overlooked or misprioritized? If resolution is still not possible, certain intermediate steps can be taken while the process of ethical deliberation continues.

Temporize The first step is to buy time, if possible. Some situations are, by nature, not critical, and thus deferring a decision may be the wisest course of action. While this approach runs counter to the “commission bias” noted above, it is

often the most prudent response which can, at the very least, spare the patient from potential unnecessary harm. In situations which do appear critical, erring on the side of overtreatment (assuming that the burdens of that treatment are not overwhelming) keeps multiple avenues of response open. For instance, if there is debate over whether to intubate a patient with impending respiratory failure, proceeding with mechanical ventilation preserves future options. It is well accepted in both ethics and the law that there is no distinction between withdrawing and withholding treatment (American Medical Association, 2010–2011), and thus if it is determined at a later time that the patient would not want mechanical ventilation, then it can be discontinued. If, however, one decided not to intubate, subsequent information that the patient would have accepted that treatment leaves no recourse.

Options to avoid Clinical ethics tends to focus on identifying a range of ethically permissible options, rather than one clearly superior option (Orr and Shelton, 2009). Thus, even if it is not clear what the optimal course of action is, it may nevertheless be clear what some clearly unacceptable responses are. At the very least, identifying these responses prevents obvious errors, and at the same time narrows the remaining list of possibilities.

WORST OPTION While most potential responses to an ethical dilemma can be ranked on a spectrum of varying propriety or acceptability, there may be some options which definitely violate sacred oaths or considerations, and thus can be excluded from consideration. Among these options are overriding the informed, voluntary refusal of a patient with clearly intact decision-making capacity (a violation of autonomy), putting a patient at disproportionate risk of harm (a violation of nonmaleficence), and explicitly lying to a patient (a stark failure of veracity). While it is true that duties are generally prima facie in nature – in other words, they are compelling unless another more pressing duty supersedes them (Beauchamp and Childress, 2009) – one could reasonably argue that some obligations are so sacred that it is difficult (or perhaps impossible) to imagine a realistic situation when that duty would not take precedence.

IMPRACTICAL SOLUTIONS, OR FAILURE TO CONSIDER POTENTIAL ALTERNATIVES

An appropriate solution to an ethical dilemma must not only be ethically acceptable, it must also be practical. It is all well and good, for instance, to conclude that a

THE ANALYSIS AND RESOLUTION OF ETHICAL DILEMMAS reluctant adolescent patient should be compelled to undergo chemotherapy for a treatable malignancy, but that conclusion does not answer the question of how to achieve this goal over the patient’s objections. Overreliance on theory to the exclusion of logistic considerations is not helpful. In addition to avoiding practical solutions, it is important not to overlook any potential alternatives (Kaldjian et al., 2005). This approach may involve “thinking outside the box” to identify previously unconsidered options, and at other times carving out a middle ground. For instance, the family may request maximal treatment for a patient whose quality of life is severely diminished and whose prognosis is guarded. The treating team, on the other hand, may feel that a change of goals to comfort measures only is indicated. In addition to likely attendant communication (perhaps stemming from a common misperception that DNR [do not resuscitate] means “do nothing”) and interpersonal (likely resulting from divergent goals) challenges, the primary issue here is the unwillingness to consider a compromise option. Some limitation of treatment – such as DNR status, or a “do not escalate treatment” order if the patient’s condition were to worsen – might be acceptable to both the team and the family. In such cases, the dilemma is not so much choosing between option A and option B, but rather identifying option C which (at least temporarily) avoids the pitfalls of the other two.

RATIONING AT THE BEDSIDE The last pitfall to avoid is allocation at the bedside. The rising cost of medical care in the United States is well known (Swensen et al., 2011), as is the proportion of those expenditures – especially as a fraction of Medicare spending – devoted to care in the last 6 months of life (Hogan et al., 2001). It is tempting, therefore, to ration expensive but potentially beneficial healthcare on a case-by-case basis. In situations in which ethical consensus is not currently achievable, the drive to rein in costs or shift resources to patients with a better prognosis may seem compelling. There are profound justice-based problems with this approach, however. As possessors of human dignity, every person deserves to be treated with respect (Outka, 1974). Further, similar patients should be treated similarly (Aristotle and Thomson, 1953), rendering caseby-case resource-based decision-making inherently problematic. If society as a whole were to determine that patients with a certain condition or prognosis should not be offered a specific therapy, that would ensure standardization of treatment. But if practice standards vary from hospital to hospital – or physician to physician – then

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it is quite likely that essentially equivalent patients would receive substantially different levels of treatment.

CONCLUSION Given the highly personal and qualitative nature of the enterprise, ethical deliberations do not lend themselves to linear algorithms and neatly wrapped solutions. While the approach documented here does not guarantee a universally accepted solution to ethical dilemmas, it does represent a structured and comprehensive response. By incorporating elements of several methods of ethical analysis – and by attempting to balance inductive and deductive approaches – this approach allows an ethical dilemma to be identified, clarified, and analyzed from multiple perspectives. And in situations where resolution is not forthcoming, intermediate steps provide practical guidance while additional information is acquired, and further discussions pursued.

ACKNOWLEDGMENT This chapter was adapted from my book Handbook of Ethics in Palliative Care (forthcoming), by Oxford University Press, who have granted permission for this material to be used by Elsevier for this book.

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