Ethical Issues in Ophthalmology
BRUCE D. WEINSTEIN, GEORGE W. WEINSTEIN and JOHN L. BURKARD JR.
Table Of Contents
WHAT IS ETHICS, AND WHAT DOES IT HAVE TO DO WITH OPHTHALMOLOGY?|
MEDICINE AS A MORAL PRACTICE
CODES OF ETHICS: FROM HIPPOCRATES TO THE AMERICAN ACADEMY OF OPHTHALMOLOGY
ETHICAL DECISION MAKING
DOES A PATIENT HAVE A RIGHT TO BE TOLD WHICH SURGEON IS PERFORMING THE SURGERY?
IS THERE A RIGHT TO UNNECESSARY SURGERY?
TO SEE OR TO LIVE?
|Imagine the following situation:|
Case 1: A 78-year-old patient of yours presents in the eye clinic complaining of vision problems, and an examination reveals extensive bilateral macular degeneration. Several years ago the patient had good visual acuity, but now he sees 20/100 with the right eye and 20/200 with the left eye. You explain to the patient that his poor vision is age related and that there are no surgical or medical interventions which can correct this problem. “I'm afraid that you don't see well enough to drive a car,” you tell him. “You shouldn't be driving anymore.” The patient becomes irritated by your suggestion and tells you that he enjoys driving and will not cease to do so. He tells you that he will find an ophthalmologist who can help him.
What should you do? Different people will give different answers to this question. Some will say you should counsel the patient and his family but make sure that his license to operate a motor vehicle is revoked. Others will claim that it is not the ophthalmologist's business to get involved with issues that belong to the state government, such as who ought to drive an automobile. Still others will say that the easiest thing to do would be to refer him to another physician and let that be the end of it. At stake is the patient's right to self-determination, the public's right to be protected from harm, and the physician's time and energy which might be devoted to other patient-care activities.
Clearly the question, “What should you do?,” is of no small importance. Whenever we ask such a question, particularly with respect to the welfare and rights of others, we are asking an ethical question. This chapter examines the nature and scope of ethics as it relates to the practice of ophthalmology, and will do so through an examination of realistic clinical situations, the sort described above. We begin with a brief discussion of the field of ethics and its relationship to clinical ophthalmology.
|WHAT IS ETHICS, AND WHAT DOES IT HAVE TO DO WITH OPHTHALMOLOGY?|
|Ethics is the systematic study of what is right and good with respect to
conduct and character. As a branch of both philosophy and theology, ethics
seeks to answer two fundamental questions: (1) should we do?, and (2) should
we do it? As an intellectual discipline, ethics is concerned
not only with making appropriate decisions about what we ought to
do, but withjustifying those decisions. Thus, unlike other forums for the discussion of moral
issues (e.g., television talk shows, barroom debates), ethics seeks to provide good
reasons for our moral choices. In fact, it is the attempt to justify our
actions that gives ethics its distinctive character.|
Medical ethics is an application of ethical rules and principles to the practice of medicine. To ask what a physician should do in a particular case is to ask an ethical question, and to justify our answer we appeal to the same rules and principles that apply to persons in society generally.1 For example, the physician's obligation to protect patient confidentiality is merely an application of the rule that all of us have to guard carefully information that is entrusted to us. However, sometimes health care professionals are ethically required to assume risks not shared by laypersons, such as caring for persons with acquired immunodeficiency syndrome (AIDS).2 To be a professional thus involves having certain obligations not shared by nonprofessionals. To understand why this is, it is helpful to examine what it means to be a physician, and how medicine differs from other sorts of occupations.
|MEDICINE AS A MORAL PRACTICE|
|Medicine is a moral practice, because physicians are concerned primarily
with advancing the interests of patients and doing for patients what
they wish to have done for themselves. Unlike members of other kinds
of practices (business, for example), the physician places the interests
of others above her or his own interests. Indeed, this feature of medicine
is one of the defining characteristics of the health care professions
in general. Every encounter between a physician and a patient
implicitly raises ethical issues, because a physician may--and indeed
must--ask questions about how the welfare of the patient should be promoted.|
Although every encounter between physician and patient raises ethical issues, these issues are not necessarily ethical or . A situation in which two or more choices are morally justifiable, but only one is capable of being acted on at a particular time, represents a moral dilemma.3 An ophthalmologist who has to decide between protecting the confidentiality of a patient with macular degeneration and protecting society from potential harm is caught in an ethical dilemma, since there are moral reasons for justifying each of two mutually exclusive options. No moral dilemma exists when a patient provides an informed consent to have cataract surgery, but the situation raises a moral issue, namely, whether the physician ought to act in the best interests of the patient and perform the surgery. Moral issues are unavoidable in ophthalmology because of the nature of professions in general and ophthalmology in particular.
To ask what one should do as a physician is often to ask a legal question as well, but it is incorrect to reduce the question to a matter for the legislature or the courts to resolve. For any legislative or judicial resolution to a problem concerning appropriate conduct, we may-and should-ask, “Is the law a good one?,” or “Was the court right?” Ethics, and not the law, establishes the ultimate standard for evaluating conduct.4 Still, there is a moral obligation to obey the law, and thus ethical analyses need to take into account the relevant statutes and court decisions.
A difficult problem in ethics concerns the source of ethical standards. People have appealed to many sources of authority in ethics: religious texts (e.g., the Bible, the Koran), natural law, philosophical argument (reason), intuition, personal experience, governmental decree, and the free negotiations of persons within a community. Traditionally in medicine, it has been the members of the profession who have selected its ethical norms and established codes of ethics. Because laypersons have a significant stake in the way that professionals conduct themselves, however, it is appropriate to include them in the selection of these norms.s Our discussion is thus based not only on what the profession of ophthalmology has held to be right and good, but more broadly on what a reasonable person with knowledge of the relevant facts might hold to be appropriate. Since many ophthalmologists refer to codes of ethics, such as that of the American Academy of Ophthalmology, for solutions to ethical problems, we consider next the role of such codes in clinical ophthalmology.
|CODES OF ETHICS: FROM HIPPOCRATES TO THE AMERICAN ACADEMY OF OPHTHALMOLOGY|
|One of the ways in which professionals have traditionally governed their
behavior is through a code of ethics. A code of ethics is a statement of general principles of duty to which
the members of the profession commit themselves, and through which the
profession is given its moral character. The most familiar code of ethics
in medicine is the Oath of Hippocrates, a document which may not
have been written by Hippocrates6 at all and which contains several prohibitions that physicians no longer
observe, such as the prohibition against performing surgery. Still, the
Hippocratic Oath contains a statement which has profoundly shaped
the distinctive nature of the practice of medicine for thousands of years: “I
will apply dietetic measures for the benefit of the sick
according to my ability and judgment.”6 As medical ethicist Robert Veatch has noted, “many modern physicians
expand [this statement] beyond its original literal applications
to dietetics to apply to all medical treatment, in fact, to
all behavior affecting the patient.”7What might be referred to as the Hippocratic principle summarizes the physician's
commitment to benefiting patients, and suggests that it
is the physician who determines what counts as beneficial.|
Modern codes of medical ethics have a direct debt of gratitude to the Hippocratic principle. For example, one of the principles of the American Academy of Ophthalmology (AAO) Code of Ethics states that “it is the responsibility of an ophthalmologist to act in the best interest of the patient,” a commitment that the Academy has elsewhere described as the code's “exclusive goal.”8 Some have criticized the paternalistic nature of the Hippocratic principle, since the patient's values and preferences are not taken into consideration.5 However, the AAO Code of Ethics, like the code of the American Medical Association (AMA), recognizes a commitment to respecting patient autonomy by requiring ophthalmologists to obtain informed consent before performing medical or surgical procedures and to provide services with “respect for human dignity” and “honesty.”
A code of medical ethics tells physicians not only what they should do, but what kinds of physicians they should be. For example, the AMA's Principles of Medical Ethics makes reference to “physicians deficient in character,” and the AAO Code mentions the character traits of compassion and integrity. In other words, codes of ethics describe moral virtues as well as moral duties. A virtue is any quality of character that is valued; a moral virtue is a quality that has moral value.9 Other moral qualities that are valued by ophthalmologists are kindness, charity, and a commitment to ending unfair discrimination. A study of virtues complements that of duties by stressing the importance of good character in the moral life, and this is why many codes of professional ethics include reference to virtues.
There are limits to the usefulness of any code of ethics. A code should be of reasonable length (i. e., it should be concise). In order for it to apply to a range of situations, it must be general and avoid specificity. Both the brevity and generality of codes of ethics may make the principles contained in them difficult to apply in many situations. For example, the prohibition against deceptive or misleading advertisements in the AAO Code may not help ophthalmologists decide whether particular advertisements they want to place violate the Code; they need to know specifically what kinds of statements are deceptive or misleading. To counter this problem, some professional organizations, like the AAO, issue advisory opinions through an ethics committee or related body. These opinions clarify the codes and answer questions that practitioners have about how the code should be applied to specific circumstances.
A more deeply rooted problem concerns how the best interests of the patient are to be determined, and this problem cannot be easily resolved by requesting an advisory opinion from the ethics committee. The concept of the patient's best interest is a value laden one, and thus the best interests of the patient cannot be determined independently from a particular set of values. For example, is it in the best interests of a patient to forego surgery so that the patient may attend a grandson's wedding? If the problem may worsen irreversibly without surgery in the near future, the ophthalmologist is likely to say that the procedure is in the patient's best interests. The patient might reply, however, that it is in his interest to attend the wedding. The dispute here concerns not the likelihood of delaying the surgery--both might agree that vision can be improved only by having the surgery sooner rather than later-but rather on the relative importance of two values: seeing, and attending an important event. A code of ethics does not and cannot decide how these values are to be rank-ordered, and thus it is often the case that appealing to a code of ethics will not resolve an ophthalmologist's ethical concerns.
How, then, should an ophthalmologist approach ethical problems in the clinical setting? We present a systematic answer to this question.
|ETHICAL DECISION MAKING|
|Suppose that your best friend calls you one evening and tells you that
he/she is faced with a difficult ethical dilemma involving an intimate
other. “I don't know if I should leave this relationship or try
to work it out,” your friend says. “Please give me some advice!” What
will your response be--to make a recommendation right
away, or to ask for some more information? Most people choose the latter. This
is because we recognize that good moral decision making begins
with getting the facts straight (Table 1). Thus, the first step for making ethical decisions, in the clinical setting or anywhere else, is gathering the relevant facts.10|
In the case presented at the beginning of the chapter, the relevant facts are that this patient's macular degeneration is age related and irreversible. The patient does not accept this clinical reality, and his denial makes appropriate treatment difficult for both himself and his physician. There is an increased likelihood of an accident in any patient with poor visual acuity, since such a person may miss seeing signs, road hazards, pedestrians, or other motor vehicles. A legal fact which plays a role in this case is that some states ophthalmologists to report patients with inadequate vision to the Department of Motor Vehicles, so that the patients' licenses can be revoked.
To resolve an ethical dilemma such as the one in this case, facts are necessary but not sufficient. Addressing moral problems differs from addressing mere technical ones in that the former involves a consideration of values as well as facts.11 In addition to the relevant facts, an appropriate response to the question, “What should you do?” requires an account of the values that play a role in the case, and what moral guidelines or rules those values suggest. Identifying values is thus the second step of ethical analysis. Certainly one important value suggested by the case is the welfare of the public, which gives rise to the moral rule, “Protect others from harm.” It is this rule which is the moral basis of the law requiring ophthalmologists to report such cases to the Department of Motor Vehicles, since allowing patients with poor visual acuity to drive places others as well as the patients themselves at serious risk of injury and even death.
If the public's right to be protected from harm were the only value that played a role in the case, there would be no moral dilemma facing you, for you would be bound to report the patient despite his request to be free to drive his car. There are other relevant values, however. Chief among them is the patient's right of self-determination. This value is the basis of the moral principle of respect for autonomy, and it has received much attention in the literature.3bBecause reporting the patient to the Department of Motor Vehicles helps to prevent harm to others, there are good moral reasons for taking such steps. Because doing so violates the patient's wishes and thus the principle of respect for autonomy, there are good reasons for not contacting the bureau. You are thus faced with a true ethical dilemma. What should you do?
This brings us to the third stage of ethical analysis, generating options. We have already considered several options open to someone in this situation: (1) help the patient accept the irreversibility of his condition but make sure that his driving activities are stopped; (2) heed the patient's request not to inform the bureau; and (3) refer him to another physician. There are other possible courses of action, but these are the most obvious ones and correspond most closely to the values presented earlier. Which option is best from a moral point of view, and why?
To answer this question, we take the fourth and final step of ethical analysis, choosing an option and justifying it. The first option would realize your obligation to protect the public from harm, but in so doing it would violate the patient's right of self-determination and right to privacy, since information which belongs to him in a sense (i.e., the result of his ophthalmologic examination) would be taken away without his consent. The second option is the moral mirror image of the first, since the patient's right of self-determination would be respected, but at the likely expense of violating the public's right to be protected from harm, since their risk of being injured in an automobile accident would be increased. By choosing the third option you would fail to fulfill responsibilities to both patient and society, because the patient may decide not to follow through with the referral yet continue to drive. In this case, neither his interests nor the interests of society would be promoted, although it is true that he would retain the freedom to drive his automobile. The choice thus appears to be between the first and second options. Which one is better, and why?
If both a patient's right of self-determination and the public's right to be free from harm were absolute, then there would be no rational way to make a choice, since whatever you did, you would be violating the rights of one party or another. All you could do would be to make a choice on some nonrational basis (e.g., flipping a coin or going with your intuitions). There is a way to make a rational choice, however, if we realize that a patient's right to self-determination is a limited right, and it is limited by, among other considerations, the degree to which its exercise places others at risk of harm or compromises the integrity of the health care professional. For example, a patient cannot come to the office, demand that you remove one of her eyes, and expect that you will do so. No one has ever defended such an interpretation of the principle of respect for autonomy. Thus in the case under analysis, a patient's autonomous request to be allowed to continued to drive his car does not require that the ophthalmologist respect it, because in so doing the physician would be placing others at risk. For this reason, option 1 (reporting him) appears to be the most defensible choice from an ethical viewpoint, recognizing that option 3 (referring him) would be easier, and option 2 (going along with him) would be more likely to leave the patient satisfied.
This analysis suggests that some approaches to ethical problems in the clinical setting are more ethically defensible than others, and that through ethical analysis one is able to distinguish better from worse approaches. It is sometimes the case that any option one picks will have unfortunate consequences (in this case, the patient may be extremely upset by the ophthalmologist's action), but this is not the same as saying that there are no answers to ethical problems. Indeed, the circumstances ophthalmologists find themselves in often require some kind of decision or action, and thus in many instances it is impossible to avoid making moral choices. Through ethical analysis and reflection, as well as discussing the problem with others in a systematic way, one is more likely to achieve a reasoned and justifiable decision.
We turn next to ethical analyses of several cases which might present to ophthalmologists today.
|DOES A PATIENT HAVE A RIGHT TO BE TOLD WHICH SURGEON IS PERFORMING THE SURGERY?|
|Case 2: The ophthalmology department at University Hospital has an extensive
residency program. In order to complete the program, residents must
perform various surgical procedures, so that they will develop the
skills they need to be competent ophthalmologists. However, patients
are not always told when a resident is performing the surgery as first
surgeon, because the faculty believe that patients might object and possibly
refuse the surgery. Besides, faculty are always present either
as first surgeon or as assistant during the operations to ensure that
the patient's welfare is promoted and protected.|
One day a new patient, S.R., complaining of “flashing lights and floaters” presents to the hospital's clinic and is discovered to have a macula-threatening retinal detachment. When she is scheduled for scleral buckling surgery she asks Dr. A., the faculty member who examined her, whether he will be performing the procedure. “I know this is a university hospital, and that sometimes the students do the operations,” she tells him.
“I will be there for you,” he responds, knowing that a second-year resident may actually be performing the surgery as first surgeon.
The ethical question raised by this case- “Does a patient have a right to be told who is performing surgery, as long as the faculty member is present as part of the surgical team?”--may be turned around and stated another way: “Does the attending ophthalmologist have a duty to tell the patient that a resident may be performing surgery?” Both of these are ethical questions, because they concern appropriate conduct with respect to the welfare or rights of others. One can imagine four responses to the latter question: (1) Yes, the physician should tell the patient who may be performing surgery. Whose eye is it, anyway?; (2) No, the physician should not tell the patient who the primary surgeon may be. The specific activities in the operating room are too complex to explain in great detail to the patient, and it would only upset the patient if the attempt to explain were made; (3) It would not be wrong if the physician told the patient, but the physician is not morally obligated to do so. Patients do not need to know the particulars of who is performing surgery; and (4) It depends on the circumstances. We will take the cautious approach of the fourth response and apply the method for addressing ethical problems delineated above to case 2.
The relevant facts of the case are that without surgery to repair the detached retina, the patient will permanently lose sight in that eye. (Even with the surgery, no matter who is the primary surgeon, S .R. might not regain vision, although the chances that she will retain good vision are significantly improved.) Dr. A. believes that disclosing to patients the fact that a resident might be performing a surgical procedure will unduly frighten them. Dr. A. is concerned that patients may choose not to have the surgery they need, and there are not enough faculty to provide all of the eye care that patients in the community require. Also, residents need to do procedures on their own if they are to acquire the skills necessary to be competent ophthalmologists. Another relevant fact is that the patient in this case, S.R., has some anxiety about a “student” performing the surgery she needs, and she wants to know whether Dr. A. will be the one working on her. S.R. might refuse the surgery if she knew that a second-year resident were doing the reattachment procedure.
There is one more piece of information that may help us to decide whether Dr. A. is doing the right thing in avoiding telling the patient the whole truth: The law requires physicians to tell patients what they might reasonably want to know about their health care. This legal requirement is a part of the doctrine of informed consent, or the process by which a patient is provided with the relevant information he or she needs to have, and is presented in a way he or she can understand, so that the person may freely decide whether to accept or reject a proposed therapy.12 As we will see in the next step of our analysis, informed consent has a sound ethical as well as legal basis.
The values that play a role in this case are again the patient's welfare, which the physician has a moral obligation to promote and protect. If this were the only value that played a role in the case, then Dr. A. might be justified even in deceiving the patient, since he can restore her vision only if she consents to the surgery. The patient's welfare, in the narrow sense of having restored vision, is but one of several values that play a role in this case, however. Another value, as before, is the patient's right of self-determination. However unreasonable it might seem to Dr. A., S.R. does not want to be operated on by a resident. If it is the case that our eyes belong to us and we have a right to decide what will be done with our bodies, then it follows that we have a right to be provided with the information we need to make the decisions we wish to make.13 It is difficult to see how this information would not include knowing who is going to perform surgery on us, since this information may play a significant role in our decision making. A third value is the obligation to obey the law, which in this case requires the physician to disclose to the patient information that the reasonable person would want to know in order to make an informed decision. These are the central values in this case.
Proceeding with our analysis, we turn next to generating options open to Dr. A. after the patient asks him whether he will be performing the surgery. He could misrepresent the situation and tell her that he will be operating on her. He could tell her that he will be there for her (as reported in the case). Or he could tell her that a second-year resident will be performing the procedure, and that he will be guiding the resident and will ensure that she receives the best possible care. Which of these options is the best one ethically, and why?
Few people will defend the first option, because there is a strong presumption against misrepresentation to others, whether in the health care context or generally. Even if Dr. A. were to defend this choice on the grounds that he has the patient's best interest in mind, it is hard to justify misrepresentation in order to restore S.R.'s vision. If this were a defensible policy, then the trust which patients place in their physicians, and upon which the physician-patient relationship is predicated, would eventually erode. Furthermore, if it is wrong to lie to patients, even for benevolent (well-intentioned) reasons, then it is hard to justify deceiving patients, even for their “own good.” Lying, misrepresentation, and deception violate our duty to give to others information which is owed to them. Only the third option, truthful disclosure, takes the patient's right to self-determination seriously. Because we cannot assume, as Dr. A. apparently does, that S.R. would refuse the surgery if she knew a resident were performing it, then it does not follow that telling the patient the truth would jeopardize her welfare. Of course, her reaction to truthful disclosure may have as much to do with the way it is presented (kindly or abruptly) as it does with the fact of its presentation.
A very important implication flows from this: it is often possible for an ophthalmologist to fulfill both responsibilities: to promote patient welfare and to respect the patient's right of serf-determination. It is not the case that one must necessarily choose between, say, restoring the patient's vision and allowing the patient to make an autonomous choice. If the ophthalmologist takes the time to educate the patient and has sufficient interpersonal skills, then even patients like S.R. may come to realize that surgery performed by residents under the skilled supervision of attending physicians may well be in their best interests. Of course, some patients may refuse the surgery when the truth is disclosed. However, Dr. A. is justified in making a benevolent deception only if he is prepared to give primacy to restoring vision above doing for patients what they want to have done for themselves.
|IS THERE A RIGHT TO UNNECESSARY SURGERY?|
|Case 3: D.M. is a 73-year-old woman who has been blind for 12 years. She
lives with her 54-year-old daughter, and although she is able to manage
her affairs, Ms. M. has not accepted her handicap. The patient has
glaucoma and advanced cataracts, which brings her to her ophthalmologist, Dr. B. Ms. M. has
heard of advances in ophthalmology, such as lens
implantation, same-day surgery, and small incisions leaving minimal
scarring, and she would very much like to try them. However, tests reveal
extensive optic nerve damage, which indicate that there is no possibility
of visual improvement. For this reason, Dr. B. does not recommend
surgery, and instead suggests Ms. M. consider a rehabilitation program.|
Nevertheless, Ms. M. wants to have surgery. She can pay for the procedure and claims, “These are my eyes, and I have a right to surgery.” Because the patient is already blind, Dr. B. recognizes that there is little risk in a surgical intervention. He also believes that, unless Ms. M. has the surgery, she will never accept the irreversibility of her condition. Should Dr. B. perform the procedure?
The ethical issues raised by this case concern the principle of justice, which requires society to provide to citizens what is rightfully due to them.
D.M. claims that she has a right to health care, specifically to eye surgery, even though her ophthalmologist, Dr. B., believes that the surgery will provide no medical benefit. The ethical question suggested by case 3, then, is this: Does a patient have a moral right to therapy which probably will not benefit her?
Not surprisingly, there is much disagreement among ethicists about the answer to this question. Libertarians argue that a basic human right to health care does not exist. If physicians wish to provide such care, they might be praised for doing so, but they are not obligated to do so. A moral right to health care would require some unspecified group (physicians presumably) to provide goods and services without their consent, and thus the principle of autonomy would be violated. A second option, supported by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, holds that society has an obligation to provide at least a decent minimum of health care, even if there is no moral right to this care. Others have argued that there is both a right to and an obligation to provide health care. On the subject of rights to health care, then, the experts disagree.
How are we to resolve Ms. M's dilemma, then? We might consider Dr. B.'s claim that the surgery is of no clinical benefit. If this is correct, then the patient's appeal to health care rights may be weakened. However, Dr. B.'s evaluation is accurate only if benefit is understood in a narrow, technical sense. Let us assume that his ophthalmologic judgment is accurate: Ms. M's vision will not improve with the surgery. If the procedure helps her to accept the irreversibility of her condition, we may conclude that she has benefited by it. Thus, the surgery might provide a psychological benefit, even if it does not result in a visual one. (Such a benefit might also be considered a moral one, since it contributes to her welfare.) Dr. B. is mistaken in his belief that cataract surgery would not benefit the patient, if we construe the concept in its broader sense.
Still, the potential benefit posed by the surgery does not obligate Dr. B. to perform this procedure. He might argue, for example, that he is an ophthalmologist, not a psychiatrist, and if the goal of a medical intervention is to help the patient overcome her denial, she would be better off with a psychiatrist. In other words, even if one argued that D.M. has a right to be treated, it would not follow that any physician she chooses has an obligation to provide the treatment. Rather than argue over rights and duties, however, Dr. B. might continue to help Ms. M. accept her condition without C0-92 having to operate. A psychiatric consultation would be in order, and rehabilitation specialists may convince the patient that a fulfilling life is possible for visually impaired persons. The resources associated with cataract surgery would be spared, and the risks associated with it avoided completely.
|TO SEE OR TO LIVE?|
|Case 4: J.R., a one-year-old child, was noted by his parents to have difficulty
seeing. He was checked by a pediatrician who referred him to
an ophthalmologist because of a mass in the right eye which prevented
a view of the interior of the eye.|
Dr. C., an ophthalmologist, examined J.R. and found an advanced growth in the right eye, typical of retinoblastoma, a malignant tumor of the retina with a predilection for spread to the brain. Also, careful examination of the left eye revealed a growth in it, which was much smaller but still of significant size.
Dr. C. discussed the situation with the parents, pointing out that there was no question that the growth in the right eye had effectively destroyed vision. Furthermore, if unattended, the growth could extend into the brain, threatening the child's life. To some extent, the same was true of the left eye. The smaller growth impaired vision, but could be amenable to treatment with radiation therapy. Shrinkage of the tumor might well improve vision to a level where J.R. would probably be visually functional again, although not with perfect reading vision.
However, the possibility of the spread of the tumor to the brain would also exist were the eye not to be removed. It is also conceivable that antineoplastic therapy, such as irradiation (whether by external beam or plaque), and chemotherapy might induce secondary neoplasms.
Dr. C., being an ophthalmologist (i.e., a health care provider who places a high value on vision), is strongly in favor of preserving J.R. 's left eye. The parents agree that this would be worthwhile if possible. However, both Dr. C. and J.R.'s parents realize that this may place the child at greater risk of dying from spread of retinoblastoma. At this point there are insufficient scientific data to provide a firm basis for predicting the implications of either approach over J.R.'s lifetime.
Is it justifiable for Dr. C. to preserve J.R. 's vision since doing so may place the child at increased risk of death ?
The central ethical question raised by this case “What is best for the patient?”-lies at the heart of all moral problems in health care. This question appeals to the principle of beneficence, which requires physicians, nurses, and other health care providers to do what is good for their patients. As noted earlier, it is a principle firmly rooted in the Hippocratic tradition and articulated in modern codes of ethics, such as that of the American Academy of Ophthalmology. Another ethical guideline we have discussed, the principle of respect for autonomy, does not apply in this case, since J.R. has never had the capacity to express his wishes regarding treatment options. By default, the duty to promote J.R.'s best interests is the moral guideline for those caring for him. It is not clear what those interests are, however. Enucleating the left eye would reduce the risk of premature death but would leave the infant sightless for the rest of his life. Not doing so would allow for the possibility of sight but at the expense of an increased risk of death. Again we ask, which choice is better, and why?
The answer to this question turns on how one rank-orders several values that play a role in the case. While we value both life itself and the ability to see, this case shows that sometimes one has to choose which of these values is more important. If one believes that life without vision is meaningless, one places the value of seeing above mere existence. One would then hold that J.R. would be better off having radiation therapy, for even though the risk of premature death is increased, he would still have the potential to see.
If, on the other hand, one holds that life is of supreme importance, and that even a life of sightlessness is to be preferred over death, then the value of seeing is subordinated to the value of life. One would then believe that enucleation is in J.R.'s best interest. As H. Tristram Engelhardt, Jr., has noted,14 unless one can definitively rank-order the two competing values, there is no conclusive answer to the question of what is best for the patient.
One's inclination to take risks also plays a role in this case. Dr. C. might not wish to rank-order the values of vision and life itself; instead, he might say, “I hold both to be important. I'm simply willing to accept a risk of a shorter life if it is possible to save the boy's vision.” J.R.'s parents might also agree that both values are important but be less willing to take such a risk. They might choose to have surgery performed for their son for this reason. People are willing to accept risks to different degrees, and one's risk-adverseness or risk-inclination affects the decision one makes in cases like this.
The above points apply not only to other cases like this, but to all clinical ethical dilemmas. For example, a patient with squamous cell carcinoma of the esophagus might be faced with having to choose between endoscopic bougienage or tube implantation, among other treatment options.15 The former has a complication rate of 1% but offers only short-term relief, whereas the latter has a 15% complication rate but can provide immediate long-term repassage. Each option has what the patient would consider to be risks and benefits, and the determination about which choice is better turns on how he or she rank-orders the values of security and longevity. This decision is thus an evaluative one and cannot be made by appealing to technical information alone.
Similarly, even if the patient and physician agree that tube implantation's 15% complication rate presents a greater risk than a 1% complication rate, the physician might be more inclined to choose it over bougienage, because he is less fearful of taking risks or believes the benefits to be gained are worth the risk. Our point is that legitimate differences about how moral values are to be rank ordered as well as which risks are worth taking preclude definitive answers to the moral problems facing not only Dr. C. and J.R. 's parents but all providers and consumers of health care.
In addition to the substantive question of what is in J.R.'s best interests, one also needs to address the procedural question of who ought to make this decision. In fact, since the substantive question does not admit to an objectively correct answer, deciding who has the moral authority to act on J.R.'s behalf is the only appropriate way of resolving the problem. We have already ruled out J.R. himself as the decision maker. Dr. C. clearly has expertise in the clinical component of ophthalmology, but as we saw in another case, this does not confer expertise in deciding what is best for the patient. Our society grants authority, with some limitations, to parents to make medical ethical decisions for their children. After being informed about and understanding the risks and benefits of each treatment option, J.R.'s mother and father, and no other parties, have the moral license to act on behalf of their son's best interest. Dr. C. ought to refrain from swaying the parents one way or another, since his rank ordering of values may not be shared by the parents, but his position of authority as a physician might unduly influence the family.
What ought Dr. C. do if J.R.'s parents disagree between themselves about what is in their child's best interests? Does one parent have greater moral authority than the other in making a best-interests determination? One might argue that because mothers generally spend more time with their children and have a greater physical and emotional investment in them than do fathers, Ms. R.'s choice about what to do and why has greater moral validity. Although some fathers might not admit it, mothers are usually more perspicacious about what is happening in their children's lives, and the knowledge this discernment provides appears to confer on mothers greater moral authority for making health care decisions.
Even if it were true that mothers as a general rule are in a better position than fathers to assess what is in their children's best interests, however, the problem facing J.R.'s parents cannot be resolved merely by having more relevant information (though having less information clearly places one at a disadvantage). As stated earlier, there is a legitimate difference of opinion about which treatment option is better, so disagreement between Mr. and Ms. R. may reflect not a lack of true concern or having the relevant factual information but a more fundamental and intractable problem: the absence of a definitively correct answer to the dilemma they face.
Adjudicating disputes between parents in situations like this ought not to be left to courts of law. Instead, institutional ethics committees or ethics consultation services offer the promise of resolving these challenging situations before they become legal problems. Ethics committees and consultants are becoming increasingly useful resources to patients and health care providers.16 Many moral problems which arise in the clinical setting are a result of poor communication, and consultation with the interdisciplinary ethics committee is a means by which all of the relevant parties can gather peaceably and articulate their concerns. While the precise nature and scope of ethics consultation services remain unclear (e.g., to whom does the clinical ethicist owe allegiance, to whom does he or she report, and must he or she meet with the patient and/or family?), institutional ethics committees and consultation services can clear up a great deal of the misunderstanding that prevents these problems from being satisfactorily resolved.17
|This chapter has suggested that being an ophthalmologist involves more
than possessing certain skills or having clinical knowledge. If medicine
in general, and ophthalmology in particular, is understood to be a
moral practice, then its practitioners have special moral obligations, including, but
not limited to, promoting the welfare of patients, protecting
them from harm, and respecting their right of self-determination. Still, being
technically competent and respecting patients' rights
are necessary but not sufficient conditions of being a good ophthalmologist. Developing the professional
virtues of kindness, compassion, and a sense of justice, among others, also
plays an important role in the moral life of the professional.|
We have used several realistic clinical examples to illustrate these points and to suggest that it is possible to approach ethical problems in ophthalmology systematically. This systematic approach involves (1) gathering the relevant facts pertaining to the case, (2) clarifying the values, (3) generating options open to the ophthalmologist, and finally (4) picking an option and justifying it. Nevertheless, ethical analysis is only a tool for the conscientious ophthalmologist. It is up to the practitioner to fulfill the moral responsibilities that give ophthalmology its distinctive character as a profession.
The authors wish to thank residents and faculty of the WVU Department of Ophthalmology, particularly Drs. Scott Corin, Terry Schwartz, Marian Macsai, Ameet Goel, Kurt Klussman, Barbara Schroeder, Joseph Feghali, and Judie Charlton, for contributing some of the cases used in this chapter.
10. Reynolds CH, Eaddy JA, Swander KK: On bridging the theory/practice gap in training medical ethicists. In Ackerman TF, Graber GC, Reynolds CH et al (eds): Clinical Medical Ethics: Exploration and Assessment, p 53. Lanham, MD, University Press of America, 1987
13. Members of some religious traditions, such as Orthodox Judaism, believe that the human body is not our property, but God's. They might nevertheless argue that they are entitled to receive information necessary to make medical decisions, although the moral justification may be different from the one discussed. See, for example, Jakobovits I: Jewish Medical Ethics: A Comparative and Historical Study of the Jewish Religious Attitude to Medicine and Its Practice, new ed. New York, Bloch Publishing, 1975
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