November 30, 1999
This chapter presents some of the important ethical issues that arise in palliative medicine and will pay particular attention to how these issues bear on the treatment of patients living with AIDS. This chapter is not intended to be either comprehensive or introductory. It does, however, provide a systematic approach to the ethics of palliative medicine -- one that grounds the ethical principles appropriate for this field in the theoretical ideals of palliative medicine. It will show how these ideals and principles can be applied to resolve concrete cases involving patients living with HIV/AIDS.
Like other fields of medicine, palliative medicine is informed by theoretical ideals1, 2 that guide clinical decisions. Two of these ideals are discussed in this section: the ideal of honoring patient dignity and the ideal of promoting patient well-being. Clarity regarding these two ideals is essential in properly framing and addressing some of the most troubling dilemmas that arise in the palliative care context.
The ideal of honoring patient dignity is sometimes identified with the need to respect the patient's autonomy. Patients in need of palliative care, like other patients, have desires about the kind of treatment they would like to receive. The need to respect these desires grounds a number of clinical duties, some negative and some positive. Negative duties include the duty not to impose unwanted treatment on the patient. For example, if a competent patient refuses life-sustaining therapy, physicians must not administer it, even if they believe that it is necessary to keep the patient alive. Positive duties include the duty to assist patients in becoming adequately informed about the treatment options open to them. It also includes the duty to assist patients in thinking about the medical treatment they would like to receive should they become incapacitated. This is normally accomplished by encouraging the patient to fill out an advance directive or to appoint a surrogate decisionmaker. (See Chapter 18: Legal and Financial Issues.) With respect to patients living with HIV/AIDS, obtaining an advance directive can present special challenges. Fear of social and family stigmatization can make these patients reluctant to engage in end-of-life planning with their physicians. For example, some patients may attempt to keep their diagnosis a secret from their family members. Physicians must be aware of this possibility. They should discuss these concerns of stigmatization with their patients early on in the disease process. They should encourage their patients to consider appointing a suitable health care proxy and to inform the health care proxy of their underlying HIV/AIDS status (see Case 1).
Respecting patient autonomy is an important part of honoring patient dignity, but it is not the only part. Clinicians should not simply defer to the autonomous desires of their patients, whatever these desires may be. This is obvious in cases where patients ask their physicians to initiate interventions that are clearly medically inappropriate. If a patient asks his or her physician to administer treatment that the physician believes would set back the medical interests of the patient, then the physician need not provide the treatment. This is particularly important to bear in mind when dealing with patients near the end of life. These patients may ask their physicians to shorten their lives because they have decided that continued life is no longer a benefit, but a burden (see Case 2). Or they may ask for care that is biomedically futile. For now we wish to point out only that honoring a patient's dignity may, at times, require the physician not to comply with his or her patient's requests.3
This point is easily misunderstood. It is often said, for example, that human life is sacred or inviolable. Regardless of one's religious views, these expressions refer to the status of human beings as beings that command respect. Physicians, as well as others, must respond appropriately to this value. Consider, for example, the case of a patient living with HIV/AIDS who desires to participate in an experimental study with no known benefit and with excessive risk. A physician might reasonably refuse to enter the patient into the study, even if the patient desires to be enrolled, because the physician believes that to do so would be to fail to honor the patient's dignity. Of course, it will require ethical judgment to decide how, and when, a physician should defer to the desires of his or her patients. The point here is that honoring patient dignity is not exhausted by the need to respect patient autonomy.
The second theoretical ideal of palliative medicine is to promote the well-being of patients at the end of life. Patient well-being is promoted by advancing the patient's interests. But what are these interests? It is useful to divide patient interests into two broad categories. These are 1) phenomenological interests (those that directly relate to the actual experience of the patient) and 2) nonphenomenological interests (those that do not solely relate to the actual experience of the patient). The first category refers to the interests that patients have in being comfortable. A primary objective of palliative medicine is to provide relief for the pain and suffering that often are present at the end of life. Although in large measure these experiences are personal and subjective, good palliative care attempts to identify and measure them. Thus, to take just one example, patients in need of pain relief are asked to rank their pain on a scale of 0 to 10. Doing so provides guidance to clinicians who seek to restore them to a level of comfort.
To further the phenomenological interests of their patients at the end of life, then, health care providers must respond appropriately to pain. They must also, however, respond to suffering. The terms Pain and suffering are related but are not synonymous. According to a standard definition, pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage.4 By contrast, suffering is a broader condition -- one that includes pain, but is not limited to it. An important dimension of suffering concerns the social and psychological consequences that result from the perceived sense of damage to one's identity.5 For example, patients often suffer as a result of reflecting on their condition. Illness and disease may cause pain and deterioration in a patient's physical condition. The patient may then reflect upon the consequences of this for his or her life and sense of who they are. This may, in turn, lead to further suffering.
Pain is reasonably well understood. As several writers in this volume have already discussed (see Chapter 2: Overview of Clinical Issues and Chapter 4: Pain), there are standard measures for clinicians to assess pain and standard interventions for relieving it. Suffering is a different matter. It is an ill-defined, controversial, and poorly understood experience. As one writer has noted, "there are no agreed-upon and validated standards or measurement instruments for health care providers to assess suffering and to discriminate how much there is. Similarly, there are no clear interventions that should be instituted and no clear understanding of when adequate palliative measures for suffering have been tried and failed."6 This uncertainty over the notion of suffering has important ethical implications in the delivery of palliative medicine, and we shall return to it when we discuss the practice of terminal sedation, below.
Much of palliative medicine is focused on the phenomenological interests of patients at the end of life. But the nonphenomenological interests of these patients should not be ignored. These are interests that are not well characterized in terms of maintaining the patient's comfort. A patient's interest in having his privacy respected or in remaining alert even if his pain is not fully controlled are examples of such nonphenomenological interests. These are discussed here because recent studies suggest that it is easy for clinicians to overlook them.7 Taking these interests seriously often requires clinicians to engage in active deliberation with their patients about their treatment options.
The two theoretical ideals of palliative medicine that have been discussed -- the ideal of honoring the dignity of the patient and the ideal of promoting the patient's well-being -- will sometimes come into conflict. Not everything that furthers the interests of a patient is compatible with honoring him as a being worthy of respect. Determining how to respond appropriately to these potential conflicts forms an important part of the ethics of palliative medicine.
The theoretical ideals of palliative medicine guide clinicians in determining which interventions and treatment options are appropriate for their patients. But, on their own, these ideals cannot resolve the ethical problems that arise in the palliative care setting. These situations require recourse to ethical or mediating principles. The term mediating is used because they intercede between the theoretical ideals discussed above and the concrete cases clinicians encounter.
There are several important ethical principles that are relevant to the practice of palliative medicine. This chapter will discuss three of them: 1) the Principle of Deliberation, 2) the Rule of Double Effect, and 3) the Principle of Proportionality. Each of these principles has been discussed in the medical ethics literature.9-15 However, they have not been discussed systematically in the context of palliative medicine and in the treatment of patients living with HIV/AIDS.
Before discussing these principles a few words of caution are in order. First, the three principles that we shall discuss are not the only ethical principles relevant to palliative medicine. Given the space constraints of this chapter, we cannot present an exhaustive discussion of these principles. However, the three principles that we will discuss are very important; and an understanding of them should provide an understanding of how ethical principles can be applied to concrete cases in palliative medicine. Second, some of the principles that we will discuss -- and in particular the rule of double effect -- are controversial. We shall, however, indicate to the reader when we advance claims that not all medical ethicists would agree with and we shall provide references to alternative points of view.
The Principle of Deliberation
The principle of deliberation concerns the manner or process by which physicians communicate with their patients. According to this principle:
Physicians should take an active role in eliciting from the patient the patient's own understanding of his condition and the values that may or may not bear on its treatment. This dialogue should be critical and deliberative. It should be based on the recognition that patients often do not have fully formed values and that they often make mistakes in thinking about how their values translate into particular treatment decisions.
This principle relies on a particular model of shared decisionmaking. Therefore, to explain this principle more fully, we must say a few words about shared decisionmaking in general. Shared decisionmaking depicts medical decision making as a collaborative process regulated by a division of labor between physician and patient.8-11 In this process, the role of the physician is to use his or her training, knowledge, and experience to provide facts to the patient about the patient's diagnosis and prognosis if alternative treatments (or the alternative of no treatment) are pursued.8 By contrast, the patient's role is to bring his or her values and preferences to bear on the assessment of these alternatives. In this way, shared decisionmaking enjoins patients to participate actively with their physicians in reaching decisions about treatment goals and options.
Shared decisionmaking is particularly important in palliative medicine. It has been well documented that good patient care at the end of life closely correlates with the willingness of clinicians to engage in discussions with their patients about prognosis and goals of care, advance directives, when to forgo specific treatment or diagnostic interventions and concerns about family support.1, 7 Applied to these specific areas, the model of shared decisionmaking can help clinicians honor the dignity of their patients and promote their well-being.16
This is true in two respects. First, in many areas of palliative medicine, there is a large measure of clinical discretion in decisions about which interventions are appropriate for specific patients. For example, there is no uniform appropriate response a physician must give to his or her patients regarding when to forgo medical interventions, how to best initiate an advance directive, or the most appropriate method for relieving end of life suffering. On these matters, research indicates that patients with AIDS have a wide variety of needs and understandings.16-20 Accordingly, the correct or most appropriate response to these issues will be known only after the physician has engaged in a process of careful questioning designed to elicit the patient's goals and expectations about the dying process. Indeed, with respect to these issues, the quality of patient care will depend largely on the skill of the clinician in reaching an understanding of the patient's values and needs and coaxing them into clarity.1, 7, 16, 19
Second, the preparation and approach to death involves patients in a series of unique and novel experiences. The health care provider, in contrast, will probably have cared for a number of dying patients and be much more familiar with the dying process than will his or her patient.16 The fact that every patient dies only once and every death is a new experience16 presents a special justification for shared decisionmaking between the clinician and patient in the palliative care context. Through shared decisionmaking the clinician can promote patient well-being by realistically describing to the patient what he or she can expect from the dying process. Although the clinician may not be able to predict with certainty when a patient is going to die, shared decisionmaking enables the clinician to assist the patient in setting reasonable and achievable goals. This model of decisionmaking also enables clinicians to identify mistaken beliefs that their patients may hold about what they should expect from the dying process. For example, some patients with AIDS-related pain may hold the belief that their pain is inevitable and that it is improper or useless to report it.11, 17, 21 Collaborative discussion with their physician is necessary to identify and correct these mistaken beliefs.
The extent to which shared decisionmaking serves the ideals of honoring patient dignity and promoting patient well-being turns, in part, on how the role of the physician is conceived in the decisionmaking process. On this matter, there are competing understandings.9 One might argue, for example, that physicians should provide their patients with adequate information and then simply let the patients decide for themselves which course of treatment should be undertaken. Against this, we believe that physicians -- at least physicians in palliative medicine -- should adopt a more "deliberative" stance with their patients. This means they should initiate a reflective and critical dialogue with their patients about how the patient's values and preferences bear on the treatment options available to them. The point of such a dialogue should be to help patients come to reasoned decisions about the treatment options they face.11
It is important to understand that the principle of deliberation does not direct physicians to correct, modify, or change their patients' values. Rather, it asks health care providers to take an active role in stimulating patients to deliberate about their values in a reasoned and well-informed manner. The goal of this is to improve the understanding of both the physician and the patient.
One objection to deliberative decisionmaking might be that it seems unduly time-consuming, hence clinically inappropriate. For those who specialize in delivering primary and palliative care to patients living with HIV/AIDS, however, these demands need not be excessive. Most HIV/AIDS clinicians as a matter of course already establish long-term relationships with their patients living with HIV/AIDS, providing both the physician and patient ample opportunities to engage in effective deliberation about the future palliative care needs of the patient.16
The fact that there is no uniquely correct treatment option for many situations at the end of life further underscores the importance of deliberation in this context. Depending on the values and preferences of the patients, a regimen that is good for one patient may be inappropriate for another, even though both have the same underlying HIV/AIDS diagnosis. Accordingly, in many instances, to determine the correct regimen for a particular patient, the physician will need to engage the patient in deliberative decisionmaking.11 For these reasons, then, a strong case exists for holding that the principle of deliberation should be a fundamental ethical principle guiding palliative care.
The Rule of Double Effect
Deliberative decisionmaking helps clinicians honor patient dignity and promote patient wellbeing through a process of reasoned dialogue that identifies, clarifies, and, where necessary, helps their patients to modify their preferences for care at the end of life. However, taken by itself, the principle of deliberation is insufficient for ethically appropriate palliative care. While the principle of deliberation enjoins clinicians to discuss their patients' preferences with respect to end-of-life care, it offers no guidance on the type of ends or goals that clinicians may permissibly advance. Nor does it speak to the issue of when it is permissible for clinicians to refuse to comply with the desires of their patients that emerge in the deliberative process.
These limitations to the principle of deliberation are important. They reinforce the point that clinicians are not ethically required simply to defer to the autonomous desires of their patients, whatever these desires may be. Indeed, as was stressed earlier, honoring a patient's dignity may, at times, require the clinician not to comply with his or her patient's requests. These considerations suggest that clinicians must be capable of bringing other ethical principles to bear on the deliberative process.
One such principle that has special relevance in the palliative care setting is the rule of double effect. This rule has a long history in moral philosophy and in medical ethics.12-15, 22 In palliative medicine, it is most frequently invoked by health care professionals to explain the moral difference between administering high-dose pain medication to a patient and euthanizing a patient as a means to treating his suffering.12, 13, 23 According to the rule of double effect, the essential difference between these two acts rests on the important distinction between an intended effect and an unintended side effect of a clinical intervention. In the instance of administering high-dose pain medication to relieve suffering, the intended effect is pain relief, and the unintended side effect may be the hastening of death due to respiratory depression. By contrast, in the instance of euthanasia, the intended effect is the death of the patient as a means to the patient's pain relief.
Despite widespread acceptance of this rule among members of the medical community, many clinicians remain unsure of how to apply the distinction.23 Indeed, research suggests that lack of certainty in this regard results in inadequate control of distressing pain symptoms in terminally ill patients.23, 24 Because the distinction between an intended act and an unintended side effect is crucial to understanding the rule, it will be helpful to begin by considering a simple illustration, one that is not controversial and one that is not related to medical practice.
Consider the difference between the strategic bomber and the terror bomber.22 Both are engaged in a war and both drop bombs that result in the deaths of innocent civilians. However, the strategic bomber, unlike the terror bomber, does not intend to kill any innocent civilians. He bombs a munitions factory, and although he is aware that doing so will have the side effect of killing innocent civilians, he does not intend to kill them. The terror bomber, in contrast, intentionally kills the innocent civilians as a means of weakening the resolve of the enemy. It is widely believed that the action of the terror bomber is morally worse than that of the strategic bomber. The rule of double effect explains why this is the case.
In medicine, physicians rely on the distinction between an intended effect and an unintended side effect all the time. For example, when a physician treats streptococcal pharyngitis with penicillin, he or she foresees the possibility that the patient may develop an anaphylactic reaction and die.13 It is clear, however, that the intent is not to kill the patient. The foreseeable death of the patient in this kind of case would be an unintended side effect of the intervention.
Not every medical ethicist believes that the principle of double effect is as important to medical practice as is stressed here.15 For example, it has been claimed that the rule of double effect is weakened because the intentions of clinicians are inherently ambiguous.15 Even if this were the case it is most often clear both to clinicians and to others what their intentions are. And, when it is not clear what their intentions are, morally reflective clinicians will make some effort to clarify them.
We have said that the rule of double effect rests on a distinction between an intended effect and an unintended side effect of an action. Although it has been formulated in different ways, the full statement of the rule reads as follows:
An action with 2 possible effects, one good and one bad, is morally permitted if the action: (1) is not in itself immoral, (2) is undertaken only with the intention of achieving the possible good effect, without intending the possible bad effect even though it may be foreseen, (3) does not bring about the possible good effect by means of the possible bad effect, and (4) is undertaken for a proportionately grave reason.13
The statement on the rule of double effect notes four conditions that can be understood by returning to the example of the physician prescribing penicillin for streptococcal pharyngitis. The physician is intending to bring about a good effect: the destruction of the bacteria streptococcal pharyngitis. This action is not itself immoral. Indeed, it is an action that any competent physician would undertake in these circumstances. It therefore satisfies condition (1). The physician also does not intend the bad effect, although he may foresee it as a possibility. He realizes that there is some chance that the penicillin will kill the patient, but bringing about this possible bad effect is no part of his intention to act. His action therefore satisfies conditions (2) and (3) as well. The only remaining issue, then, is whether the physician's intervention was done for a proportionately grave reason. This means that if the intended good effect of the intervention is significant and if the foreseeable bad effect is either less significant or very unlikely to occur, then the intervention will count as one undertaken for a proportionately grave reason. Because the possibility that a patient will die from penicillin is very remote, the physician's intervention in this example satisfies condition (4).
The same analysis can be applied to distinguish aggressive pain management from euthanasia (see Case 2 and Case 3). Administering high-dose pain medication has both a possible good and a possible bad effect. The possible good effect is the relief of the patient's suffering. The possible bad effect is that the intervention will hasten the patient's death. If a physician were to administer the medication with the intent only of achieving the possible good effect, then his action would not be in itself immoral. It would satisfy conditions (1) and (2). If the patient's suffering were sufficiently intense, and if it were of the kind that is appropriately managed by pharmacological interventions (see discussion of the modified principle of proportionality), then the physician's intervention would be undertaken for a proportionately grave reason and would therefore satisfy condition (4). This leaves only condition (3). Unlike euthanasia, aggressive pain management does not aim to bring about the possible good effect by means of the possible bad effect of the intervention. In short, aggressive pain management does not kill the patient as a means to relieving his suffering. Rather, it administers medication to relieve his suffering that may have the foreseen, but unintended, bad effect of hastening his death.
The rule of double effect is ethically important in care of the terminally ill HIV/AIDS patient. In the previous section it was stressed that one of the theoretical ideals of palliative medicine is to honor the dignity of the patient. We claimed that this means that patients inherently have a status that commands respect. This status, in turn, grounds limits on how physicians may respond to their illness or disease. The rule of double effect adds content to this requirement in that it implies that physicians must never intend bad effects when treating their patients. This includes never intending to make one's patients dead. This point has particular relevance in the discussion of terminal sedation and its implications for the proper treatment of patients, including patients living with AIDS, at the end of life. When this rule of double effect is properly applied distinctions can be made that make clear the difference between physician-assisted suicide or euthanasia and appropriate treatment of intractable pain (which risks hastening death).
The Principle of Proportionality
The rule of double effect is somewhat controversial. Not every medical ethicist believes that it is as important to medical practice as we have suggested.15 But the fourth condition in the rule of double effect -- the one that specifies that a physician must act for a proportionately grave reason -- is widely accepted even by those who reject the rule of double effect. Therefore it can and should be considered on its own terms. So understood, we shall refer to it as the principle of proportionality.
This principle is very important to palliative medicine. A number of writers have appealed to this principle in their explorations of when, and under what conditions, a physician's obligation to relieve terminal suffering may justifiably override his or her obligation to prevent harm.12, 25 According to Timothy Quill, Bernard Lo, and Dan Brock, for example, the concept of proportionality requires that the risk of causing harm bear a direct relationship to the danger and immediacy of the patient's situation and expected benefit of the intervention.25 These writers have proposed the following formulation of the proportionality principle for regulating physicians' use of vigorous pharmacological measures in the palliative care setting:
[T]he greater the patient's suffering, the greater risk the physician can take of potentially contributing to the patient's death, so long as the patient understands and accepts the risk.25
This formulation of the principle, however, does not specify what type (or types) of suffering justifies a physician's use of pharmacological interventions to treat suffering. It simply instructs physicians to sum up the total amount or intensity of the suffering their patients are experiencing. In this formulation all terminal suffering is on equal footing and it is all subject to the requirements of proportionality.
This principle of proportionality can be extended and refined by considering the theoretical ideal of promoting patient well-being and distinguishing between different kinds of pain and suffering and the different sorts of therapeutic interventions they may require. For example, a patient living with HIV/AIDS who is nearing the end of life may experience suffering that results from his terminal condition as well as suffering that results from his own reflection on his condition. Suppose, for example, that this patient blames himself for his illness and this causes him great inner turmoil. The resulting psychosocial suffering may be as intense as, or even more intense than, the pain and suffering caused by his underlying physiological condition. It would be a mistake, however, simply to sum up his suffering as if it were all the same. Some of the suffering that this patient experiences -- what we have referred to here as psychosocial suffering -- is not appropriately managed by aggressive pharmacological measures. Unless these thoughts are symptoms of major depression, the patient's psychosocial suffering should be managed by appropriate psychological or spiritual counseling.
This point is important for all patients in need of palliative care, but it has particular force when applied to patients living with HIV/AIDS. Recent studies suggest that a high proportion of patients living with HIV/AIDS who desire euthanasia or assisted suicide do so for reasons other than the need to avoid pain.6, 26 Depression, hopelessness, psychological anguish, distress caused by stigmatizing events related to their HIV status, and loss of community have been identified as key factors contributing to the suffering of these patients.26 These forms of suffering, however, are not appropriately managed by high-dose narcotics.14, 27 This strongly suggests that physicians who treat patients living with HIV/AIDS at the end of life should not rely on a simple formulation of the proportionality principle if they are to diagnose and treat their patients' suffering appropriately.
A reformulation of the principle of proportionality that takes these issues into account follows:
A physician's therapeutic response to terminal suffering is justified, even if it foreseeably hastens the patient's death, if and only if (1) the measures implemented properly correspond to the intensity of the patient's suffering; (2) the measures implemented are appropriate for the type of suffering the patient is experiencing; and (3) the patient understands and accepts the risks associated with the measures.14
Clearly, the word "appropriate" in the second clause of this principle is crucial. It should be understood in light of the interest the patient may have in being restored (as much as their condition permits) to a state of psychosocial well-being. As has been suggested, one important way in which this interest can be ignored is when physicians prescribe high-dose narcotics to treat psychosocial suffering. Such interventions are effective in the sense that they alleviate suffering, but they are inappropriate in that the restorative interests of patients are ignored or set back.
The requirement that the therapeutic measure be appropriate to the kind of suffering the patient is experiencing calls for discrimination on the part of the physician in diagnosing suffering. In particular, it enjoins the physician to attempt to distinguish between the pain and suffering that is caused by the underlying physiological condition of the patient and psychosocial forms of suffering.5, 14, 27, 28
Additionally this modified principle of proportionality requires physicians to recognize the limits of their medical authority. Physicians can fulfill their duty to relieve certain types of suffering by relying solely on pharmacological measures, but these measures are inappropriate responses to other forms of terminal suffering that are likely to be experienced by patients living with HIV/AIDS. With respect to psychosocial suffering, patients may need other measures such as counseling or spiritual support.5, 14, 28, 29 Some physicians are skilled in providing these interventions, but many are not. For those who are not, they best fulfill their obligation to relieve this kind of terminal suffering by involving other members of the palliative care team in the care of the patient.
The modified principle of proportionality therefore differs significantly from the simple formulation of the principle of proportionality introduced at the beginning of this section. It provides a more precise response to the specific types of ethical dilemmas surrounding pain and suffering that clinicians are likely to encounter in the palliative care context. These include dilemmas surrounding the use of terminal sedation and other measures that go beyond routine clinical interventions. Different types of suffering at the end of life may call for different therapeutic interventions. Thus, to comply with this reformulated principle of proportionality, physicians treating patients living with HIV/AIDS must develop skill in working as a member of an interdisciplinary team as well as in diagnosing, and appropriately attending to, the different types of suffering present at the end of life. The training clinicians should receive to develop these clinical skills is addressed in detail in other chapters of this guide.
The following three cases are presented to illustrate how the theoretical ideals and ethical principles that have been discussed can be brought to bear on clinical decisionmaking.
Case 1: AIDS, Patient Confidentiality, and Surrogate Authority
Mr. A is 62 years old, is HIV positive, and has hepatitis C cirrhosis and chronic renal insufficiency. He has been on antiretroviral therapy since his diagnosis of HIV. He has attended clinic appointments regularly and he has stated that he does not want anyone in his family to know that he is HIV seropositive. End-of-life care issues were not documented in the record of these visits and Mr. A did not assign a durable power of attorney for health care nor did he write a living will. After being admitted to the hospital, Mr. A was eventually transferred to the intensive care unit (ICU) with a diagnosis of acute respiratory failure and anoxic encephalopathy. After numerous failed attempts at extubation, the medical team requested that the ear, nose, and throat (ENT) team evaluate the patient for tracheostomy. At this point a family meeting was held. In attendance were the patient's wife and two children. The patient's wife was the court-appointed surrogate decisionmaker for Mr. A and she consented to the tracheostomy. Given Mr. A's previously expressed wish to keep his HIV status confidential, the ICU physicians felt an obligation not to disclose this information to Mr. A's wife. The ENT surgeons, however, objected that she could not give informed consent to the tracheostomy unless she were informed of her husband's HIV status. They believed that Mr. A had active AIDS, and was not merely HIV positive, and that his surrogate decisionmaker needed to know this. An ethics consult was called.30
The central ethical question raised by this case is how physicians can respect a patient's interest in keeping his HIV status confidential when it conflicts with his surrogate's right to have full information about his condition. The patient's interest in confidentiality is an example of a nonphenomenological interest. Respecting this interest serves the patient's well-being. This remains true even when the patient has become incapacitated. The surrogate's right to be fully informed, however, is also an important right that serves both the patient's autonomy and his well-being. Finally, this case underscores the importance of the principle of deliberation for the palliative care of patients living with HIV/AIDS.
There is no clear consensus as to how this case should be resolved. Some have argued that if the knowledge that Mr. A is HIV positive is reasonably thought to be relevant to the medical decisions the surrogate decisionmaker must make, then this information must be disclosed to the surrogate.30 Physicians have an ethical, and in many states a legal, duty to ensure that surrogates have complete and accurate information on which to base their decisions.30, 31 This duty is not defeated by the patient's interest in confidentiality. The patient's interest in confidentiality, while certainly important, is not absolute. It can be overridden for a number of reasons.32 For example, health care providers are required to report certain sexually transmitted diseases to public health authorities to allow for contact tracing.12 Additionally, many state surrogacy statutes grant the surrogate the right to access the patient's medical records.30 Thus, some conclude that if people with HIV/AIDS do not wish to have their condition disclosed to family members, they must take active steps such as executing an advance directive or executing a health care proxy. This would assure that adequate care would be provided should they become incapacitated and that their interest in confidentiality would be fully protected.33 Others, however, maintain that the patient's interest in confidentiality is not defeated by the surrogate's need to have full relevant medical information. They point out that given the fact that society has tended to stigmatize those who have AIDS, the presumption in favor of patient confidentiality is especially strong in this kind of case.34, 35
The intent of this case is not to resolve the ethical dilemma but to demonstrate how deliberative decisionmaking could have prevented it. It is clear that physicians and patients must devise strategies to avoid this kind of situation. The principle of deliberation is critical to such an approach. The fundamental mistake in Mr. A's case was made prior to his becoming incapacitated. His physician should have discussed with him early on the possible limits to patient confidentiality. He should have helped Mr. A understand that if he became incapacitated, then his surrogate decisionmaker would need to be fully informed about his condition. With this in mind, Mr. A and his physician could have discussed possible options for protecting his interest in not disclosing his HIV status. Empirical data suggest that virtually all persons with HIV do disclose their diagnosis to at least one nonphysician.36 It is very likely, then, that there was some person who knew about his HIV status that Mr. A could have appointed as a surrogate decisionmaker. Alternatively, Mr. A could have written an advance directive that appointed a surrogate, but explicitly limited the surrogate's right to have full information.30
End-of-life decisionmaking is never easy for either the health care provider or the patient. This is especially true for physicians caring for patients who are HIV positive.16, 18, 20 Because this disease is becoming increasingly chronic in nature, physicians may be tempted to put off having these discussions until late in the course of the patient's illness.30 Moreover, they may be tempted to allow the health care surrogacy laws that many States have enacted in recent years to substitute for more deliberative discussions about durable powers of attorney for health care.30 However, given the importance of the interests involved, health care surrogacy laws are a poor substitute for deliberative discussion between physicians and patients. To avoid the type of conflict illustrated by Mr. A's case, physicians should adhere to the principle of deliberation.30 Specifically, they should take an active role in initiating discussions about advance care planning. This is the best strategy for respecting both the rights of patients and the duties of surrogates.
Mr. B is a 38-year-old patient who was first identified as HIV positive 10 years ago. Mr. B's condition has deteriorated over time and he has been admitted to the ICU after contracting pneumonia. Although his pain can be managed, Mr. B is bed-bound and near death. He is not clinically anxious or depressed, and a consulting psychiatrist asserts that he retains decisionmaking capacity. Mr. B fears what he sees as the impending loss of control over his life and becoming a burden to his family. He repeatedly asks his physician to induce a barbiturate coma, and to provide no artificial hydration or nutrition. After a prolonged consent discussion, his physician agrees to do so. Mr. B dies 14 days later.
An important goal of palliative medicine is to ensure that patients do not needlessly suffer in the dying process. Those living with HIV or AIDS often express the worry that their deaths will be slow and painful.26 Many experience hopelessness, disintegration of self, and a loss of community. In responding to the terminal suffering of these patients, physicians frequently experience an ethical conflict between their duty to relieve suffering and their duty not to cause harm. The physician in this case administered terminal or palliative sedation.14, 25, 27, An important ethical question for palliative care physicians who treat patients living with HIV/AIDS is when, if ever, such a practice is justified and can be distinguished from physician-assisted suicide.
Some may hold that because he respects the desires of his patient, the physician in this case acted correctly. However, as we have argued above, to honor the dignity of patients, physicians must do more than respect their autonomy. Recourse to the rule of double effect, accordingly, can assist the physician in thinking about what is morally permitted in this kind of case.
It might be held that in administering terminal sedation Mr. B's physician acted consistently with the rule of double effect in that he did not intend to hasten Mr. B's death but, rather, wanted to relieve his terminal suffering. This is a misapplication of the rule of double effect. It is clear from the description of the case that even if the physician's ultimate objective is to relieve Mr. B's suffering, he intends to hasten his death as a means to this objective. Importantly, however, the rule of double effect holds that one should never intend the bad effect of an intervention whether as an end itself or as a means to an end. This remains true even though Mr. B's physician intends his death as a means for bringing about an important treatment goal (the relief of suffering). If the rule of double effect is a valid rule, and the physician is opposed to euthanasia, then this intervention, even though motivated by good will, is ethically impermissible.
It has been noted above that the rule of double effect is controversial and that some medical ethicists deny its validity. A further analysis of this case is therefore warranted to explore other morally significant features. This case also raises the principle of proportionality.
From the description of the case, we know that Mr. B does not suffer from unmanageable physical pain but from his fear of losing control of his life and becoming a burden to his family. This kind of suffering is significant and can often be intense. The application of the unmodified principle of proportionality discussed (and rejected) above holds that in order to determine whether terminal sedation would be ethically appropriate for a patient like Mr. B, the total amount or intensity of his suffering should be quantified and weighed against the bad effect of shortening his life. If we do this, it may then be reasonable to conclude that Mr. B's suffering is sufficiently grave to warrant terminal sedation.
However, a refined principle of proportionality -- one that discriminates between different kinds of pain and suffering -- would lead to a different conclusion. Mr. B experiences different kinds of suffering. Some of these, such as the dyspnea that results from his AIDS-related pneumonia, are appropriately managed by opioids. Other kinds of suffering , however, are not appropriately managed in this way. For example, the psychosocial suffering that results from his fear of losing control of his life is best managed by psychological and spiritual counseling, which may help restore Mr. B to a state of psychosocial health.14, 27, 28
Restoration of psychosocial health is a central goal of palliative care regardless of the stage of illness. Patients confront many important issues in their approach to death. How should they face death? Should they pray or not? How should they say goodbye to loved ones and family members? Do they have outstanding concerns that have not been addressed? Mr. B, like other terminally ill patients, has an important interest in responding to these questions in a manner that is consistent with his character and considered values. He has, therefore, an important interest in being in a psychosocial condition that makes this possible.14, 28, 29
For these reasons, a refined principle of proportionality rules out terminal sedation in this case. While his suffering is intense, it would be a disproportionate and, therefore, inappropriate intervention to sedate Mr. B into oblivion.
Importantly, it does not follow from this that terminal sedation -- or as we would prefer to call it, the sedation of the imminently dying -- is never justified.37 There are circumstances in which hastening the death of the patient plausibly can be considered a morally permissible side effect of treating pain and suffering that is both unresponsive to standard palliative care and not appropriately managed by other interventions.13 Many physicians, fearful of unwittingly participating in euthanasia, have become reluctant to prescribe high-dose opioids for pain relief.23 The rule of double effect and the principle of proportionality are important to palliative medicine because they explain how physicians can conscientiously use potent drugs to treat terminally ill patients while maintaining a commitment to the value of human life.
Mr. C is a 30-year-old man with end-stage osteogenic sarcoma. Cure is no longer possible after years of struggle with surgery, radiation, and chemotherapy. In expert hands, he has required increasing doses of morphine for pain relief. However, he has now developed very bothersome myoclonus as a side effect of protracted high-dose opioids. He is bed-bound, dyspneic, and near death. Standard doses of muscle relaxants and benzodiazepines have not controlled the myoclonus and, despite adjuvant pain treatments, his pain is increasing and responds only to increasing opioids, thereby exacerbating his myoclonus. He is groggy, but alert. After a prolonged consent discussion with him and his family about the risk of complete sedation, his physician -- who herself has principled objections to physician-assisted suicide and active euthanasia -- prescribes increasing doses of benzodiazepines until the myoclonus is controlled. The dose required to do so precipitates a coma. Mr. C dies 2 days later.14
In this case the patient suffers from intractable pain that is caused by his deteriorating physiological condition. His physician has attempted to manage his pain by less drastic measures, but these have all failed. Mr. C is not experiencing any significant psychosocial suffering. The issue before his physician, then, is whether the need to respond to his intractable physical pain and myoclonus might justify administering high doses of sedating medication. The rule of double effect permits sedation in this case. Mr. C's physician has a duty to treat Mr. C's intractable pain and the myoclonus that treatment has precipitated. In discharging this duty she can plausibly construe an appropriate intervention (such as high doses of diazepam) that might hasten Mr. C's death to be an unintended side effect of the intervention. Thus, if relieving Mr. C's pain is a proportionately grave reason -- and from the description of the case it appears to be so, then Mr. C's physician can permissibly administer the sedating medication. She can do this, moreover, while consistently maintaining her principled opposition to physician-assisted suicide and active euthanasia.
Determining when physicians should violate their patient's interest in confidentiality or when physicians can and should administer high doses of sedating medication to dying patients are challenging and complex matters that require sound clinical comprehension of the patient's condition, good ethical judgment, and an understanding of the ideals and principles that have been discussed. Although certainly not definitive, the discussion of these cases has shown how the theoretical ideals of palliative medicine inform certain fundamental ethical principles, which in turn provide guidance in clinical cases.
These cases and the principles they illustrate are not the only ones relevant to the ethics of palliative medicine. We have not discussed a number of issues that raise important ethical problems for palliative care physicians, such as issues that surround decisions to withdraw or withhold medical interventions. To be sure, the principles that we have discussed in this chapter are relevant to these issues. For example, according to the rule of double effect, a physician should not withhold food and fluids from his patient as a means to hasten the patient's death. Nonetheless, she could withhold or withdraw feeding tube treatment from a patient whose medical condition had made him unable to eat if the treatment were disproportionately burdensome, even if this would forseeably (but unintentionally) shorten the lifespan of the patient. We have not attempted to provide a full discussion of these issues here.
The cases that we have discussed in detail, however, are particularly important for several reasons. Studies indicate that ineffective communication between physicians and their dying patients is a major cause of inappropriate care for dying patients.6 Likewise, uncertainty over the rule of double effect has been cited as a key factor in the inadequate control of distressing symptoms in terminally ill patients.23 And -- for HIV and AIDS patients in particular -- the issue of patient confidentiality remains a vital one as physicians struggle to honor the dignity and promote the well-being of their patients as they approach death.38, 39 With respect to each of these pressing issues, a good understanding of the considerations discussed in this chapter is essential if health care providers are to respond adequately to the difficult ethical challenges they now confront, and will continue to confront, in treating AIDS patients.