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AUTONOMY, PATERNALISM, AND THEIR MEDICAL RELEVANCY By Kendall Nicosia-Rusin Honors Essay Philosophy University of North Carolina March 30, 2014 Table of Contents I. Introduction 3 II. Theories of Autonomy 6 III. Kantian Autonomy 10 IV. The Concept of Paternalism 14 V. Justification of Paternalism 16 VI. Divergence from Past Theories 19 VII. Case Studies 26 VIII. Conclusion 32 IX. References 34 2 I. Introduction Consider Robert, a 27 year-old who is admitted to a Chicago emergency room with cellulitis in his left leg. His physician discovers that he has been homeless for quite a while and has a history of intravenous drug use. He presents with a borderline-low white blood cell count, and the physician encourages him to test for HIV. Robert – lacking any additional symptoms such as weight loss, lymphadenopathy, and HIV-related illnesses – refuses the test. This is a very straightforward scenario that could happen anywhere, where a patient decides not to pursue certain screening and testing options. It is within the patient’s right to control what foreign objects enter his body or what is taken from it. In Illinois, however, physicians are permitted to test patients for HIV without their knowledge or consent. The motives for this law may be based purely in public health: the more people that are screened and aware of their infected status, the fewer people that are carelessly or unknowingly infected. In fact, in trying to justify this law, we can easily appeal to a utilitarian rationale. What is the comparable worth of the one patient’s right to consent to healthcare when the life and health of a larger number of individuals is at stake? It is also rather easy to remove the public health lens when considering Robert. What if the physician wanted to test Robert for the benefit of Robert? If he truly was HIV positive, he would need to start a strict drug regimen and make lifestyle changes to accommodate his infection. The difference between getting tested and not may be the difference between Robert dying in five to ten years and living for forty more. Therefore, the physician’s decision to test Robert is in Robert’s best interest – all motives for action reflect concern for the patient. Testing Robert against his will would align with a common conception of justifiable paternalism – a 3 coercive action for the benefit of the actor, in this case, the patient.1 In this case, the fact that such intervention is legalized makes the physician’s decision quite easy and defensible. However, what of other cases where no law exists to predetermine a physician’s actions? How do we know when paternalism is truly justified? While Robert’s case seems to be one where we intuitively agree with the choice of the paternalistic physician, it still raises a concern about what the patient is losing in this relationship. As stated previously, patients should have the right to determine how their body is prodded and manipulated. A common label for this characteristic is autonomy, often seen as a nearly inviolable right which I will show is wrong. If we agree with the physician’s decision regarding Robert, then we need to be able to explain why Robert’s autonomy may be overlooked or ignored. Further, we may also find that the importance of autonomy is such that paternalism is never justified, even if we intuitively believe it may be so. We may also note that due to the public health motive of the example of Robert, this is not a case of pure paternalism. The problem with this is that the justification for action may actually be swayed by characteristics that are unrelated to paternalism, preventing us from developing an analysis of valid and invalid paternalistic actions. Instead, consider the case of Rose, an 82-year old grandmother who has been hospitalized with severe heart and kidney disease. Given the severity of her illness and her age, it is very likely that she will die soon. While she is frail, she is still conscious and lucid, and she expresses an interest in understanding her medical condition. Her son, Peter, has told the physician that he would rather his mother just slip away without knowing any upsetting information that would cause her to worry. The paternalistic action, therefore, would be to go against the patient’s wish to know her medical 1 Feinberg, Joel. “Legal Paternalism.” Canadian Journal of Philosophy. Vol. 1, Issue 1. 1971. pp.105-124. 4 information and hide her bleak prognosis with the understanding that this knowledge would create misery and anxiety for her. Intuitively, we can say that this action is not justified. When a patient wants to know information regarding her health and the physician possesses this information, the patient has a right to disclosure. If the physician had a sense from the patient that she really didn’t want to know the information, that may change the scenario. However, in this instance, the decision is straightforward. Why can the physician act to coerce Robert but not Rose? Why does it seem like Rose’s autonomy demands more respect than Robert’s? Given the practical nature of these problems – that they are a common occurrence in medicine – it is imperative that we have a reliable method of approaching the ethical dilemma. Whether or not physicians act paternalistically or respect a patient’s autonomy depends on what those concepts mean and what they imply. This paper is dedicated to this analysis. After examining and criticizing some familiar conceptions of autonomy and paternalism, I will suggest that we return to the Kantian root of autonomy, the idea that autonomy is an essential aspect of moral agency. Since Kant’s definition of autonomy is heavily theoretical and impractical, I will suggest a new way to define autonomy: the rational setting of ends. Autonomy is frequently used interchangeably with liberty, but these, I argue, are two very different concepts. Liberty or freedom is about unrestrained action and choice whereas autonomous choices are constrained by rationality. Liberty may also be a claim-based right whereas autonomy never is a right. My definition of autonomy takes from Kant the idea that autonomy is status as a moral agent. It would be misleading to discuss a right to autonomy because to have rights, we must be moral agents, but autonomy is an essential condition of being a moral agent. Therefore, the order of attainment is first moral agency and autonomy and second, moral rights. I will then find that paternalism may be justified when it violates liberty but is not justified when it violates 5 autonomy. Finally, I apply these concepts to more complex medical cases to determine when physicians are justified in acting paternalistically. II. Theories of Autonomy We use the word autonomy loosely, and with it, we colloquially connote a certain ideal that some consider to be a right. Never are we criticized for acting autonomously or claiming our autonomy. Possessing this characteristic is seen as an indication of maturity, higher cognition, and responsibility for ourselves. If we are going to support and promote a behavioral characteristic or a property of morality, we must first fully understand the proper, not common, meaning of the word. Let’s consider the most basic idea of autonomy – the ability to make decisions about issues that affect one’s own life without interference from others. For instance, I may choose to exercise regularly and monitor my daily nutritional intake. This is a lifestyle choice I make independently, based on my desire to maintain my health and generally increase the quality of my life. This sort of independent choice that will affect the chooser is one we want to endorse. The interference of another who might say that I cannot pursue this lifestyle because I must do my fair share to consume a surplus of calories or who would reserve healthful resources for those with more need to lose weight than I is repellent. The choice affects the quality of my life and if I am not allowed to pursue improving the quality of my life, both in hedonistic and deeply meaningful non-hedonistic ways, then the incentive to make efforts in life and the value of life is depleted. Does this mean that we can make decisions about traffic lights, sales at stores, and artwork hung in waiting rooms? Choices about these issues do affect our lives, insofar as our lives are shaped by our interactions with external forces; however, the effect of these external settings on 6 our lives is seemingly superficial or recognizable as uncontrollable by the individual. My life would be better if on my commute to work, every stoplight I encountered was green. To expect to be able to choose the timing of the stoplight to accommodate the needs of my routine is absurd because then everyone would try to lay claim to control of stoplights and all preferred timings would conflict to the point of chaos. Consider the interior design of waiting rooms. I may be in an extreme minority of people who care deeply about what prints of paintings are chosen for display. I need not experience the displeasure of modern abstraction if I were allowed to hang a couple of Monets and Cassatts. While this may lead to a more pleasurable time in a waiting room, this change in an external setting is very insignificant. The effects of this decision do not permeate my life beyond the moment I am in the waiting room. This superficiality of ‘an issue affecting one’s life’ in this instance indicates that autonomy needs some gravitas. Perhaps the previously suggested definition should be clarified and reread as ‘the ability to make decisions about issues that deeply affect one’s own life.’ This still lacks the ability to fully encompass the meaning of autonomy. If every day I depend on others to choose my meals and cook for me, I am clearly lacking a kind of autonomy; yet cuisine does not have a profound effect on my life. One difficulty in defining autonomy is finding the threshold. On the scale of unimportant to life-changing decisions, where do we want to allow autonomy’s jurisdiction? Additionally, the relevance of this example changes depending on the context of the situation. If I am physically disabled to the point that I cannot prepare my own food or if I have such extreme dietary restrictions that I require a nutritionist to oversee my diet, then it would be odd to say that this indicates a lack of autonomy. Similarly, if I choose to fly but cannot, this is no fault of autonomy but of physical limitation. Therefore autonomy must also reflect physical ability. 7 We seem to be straying too far from our understanding of this concept, and I suggest that we return to the original etymology of autonomy: self-governing. Self-governance is about controlling our own lives and the personal choices we must make, both superficial and profound. External issues are not at play – my inability to control the traffic that makes me late to work is not an infringement of my autonomy, but a law requiring me to wear my seatbelt may be. This second instance illustrates a possible violation of my will. Whereas I cannot will the traffic light to change and accommodate my schedule, I can will myself to wear or not wear a seatbelt. For now, let’s just continue with the idea that a violation of autonomy is a violation of the individual’s volition. What claims do we have to autonomy so defined? Autonomous individuals ought to be free from certain influences. Since I am an autonomous individual, I have rights to make decisions about personal matters, and such a right begets a duty of others to not interfere with my exercise of my autonomy. The formation of their rights is a recognition that individuals ought to employ their psychological capacities, for prevention or interference of such employment would diminish essential qualities of individuals, thus devaluing them. We have a right to freedom of expression; yet, if we were not a social species able to express our complex thought, violation of this right would not put us in a worse off situation. Nobody accuses one of a violation of free speech when giving a screaming baby a pacifier. In order to have a right to freedom or liberty, we must first possess some corresponding relevant psychological capability. All that has been discussed above captures the common conception of autonomy – a right to self-governance, a psychological capability that ought to be respected as a capability such that we are able to exercise the competency. However, considering autonomy as a right seems erroneous and doesn’t fully encapsulate its value. The kinds of moral rights relevant to our 8 discussion are claim-based, meaning that those with rights make claims on others to act in accordance or not interfere with the right. In essence, claim-rights beget duties. Specific to autonomy, it makes sense to discuss two rights-based duties: one, a duty to not interfere or restrict an individual’s autonomy, and the other, a duty to oneself to act autonomously if capable. I believe it is more instinctive to discuss these two duties than to discuss a right to autonomy. Perhaps one might say we have a right to not have others interfere with our autonomy – that is to say, we have a right that others obey their duty to not interfere with out autonomy. This right is not the same as saying that we have a right to autonomy; instead, this is a right regarding how others act towards us - that others respect our potential characteristics including autonomy. Additionally, others’ duties and our own duties with respect to our autonomy do not indicate that there is a corresponding right. While the existence of a right requires a duty related to it, the presence of a duty does not necessarily mean there is a right that the duty is respecting. We have these duties concerning autonomy, we may have a right regarding interference of our autonomy, but we don’t have a right to autonomy. Rejecting the concept of autonomy as a right, we are left with the layman’s understanding of autonomy – self-governance. While this is a wonderfully simple definition, it misses an essential complexity of this concept. It does not shed light on the value of self-governance nor does it explain why we don’t find control of young children’s behavior morally troublesome. The common conceptions of autonomy are too weak to serve us well in our exploration of patient autonomy. To find the essence of the meaning of contemporary autonomy, we should begin in its grounding with Kant. 9 III. Kantian Autonomy For Kant, autonomy is an essential part of the will of a rational agent – for one to act morally, the will must be autonomous. We cannot be bound by moral obligations and duties in Kant’s sense without autonomy as a property of the will.2 An explanation of Kant’s conception of the will and its function will help to illustrate the importance of autonomy. As previously mentioned, the will is the essential feature of an autonomous rational agent. It is the ability to act on the basis of principles, reason or duties. Thomas Hill, providing an interpretation of Kant, remarks, “The will is not, as it was for Hobbes, the last and strongest appetite in a deliberation that causes my body to move, nor is it, as it was for Hume, a peculiar sort of mental event (‘impression’) that occurs just prior to my acting.”3 It is deliberate choice based on maxims that marry universal laws with our particular actions. An autonomous will is free in a negative sense. This means that an individual is able to act without the choice of action being determined by external physical or psychological forces. An addict is not negatively free to indulge in the addiction because the addiction dictates the choice of action. Another aspect of a negatively free will is that it is able to choose actions based on maxims that are not the individual’s inclination. That is to say, our actions are not motivated solely by our desires, interests, or prospective happiness. Our actions may be motivated by reasons or principles that we choose to follow including reasons to act on some desires. Additionally, an autonomous will is also free in a positive sense. The will cannot be lawless, and Kant suggests that it is subject to laws of pure practical reason. Willing in this sense is making choices based on universal maxims of rationality. This may not seem like a freedom at 2 Hill, Thomas. “Kantian Autonomy and Contemporary Ideas of Autonomy.” Oliver Sensen, ed., Kant’s Conception of Autonomy. Cambridge University Press: 2013. pp. 15-31. 3 Hill p. 19 10 first but consider the concept more closely. Laws of pure practical reason are not imposed on individuals – instead, they are recognized by individuals who set them as their own standards. The freedom lies in our being subject only to the laws we and other rational beings will for ourselves and each other. Not only are we free to choose to act, we are also free because we have set the maxims. Taking all of this into account, Kant considers autonomy as “the property of making and being subject to laws ‘independently of every property belonging to the objects of inclination’.”4 So defined, autonomy is about setting and obeying laws that can be promoted by all rational agents as opposed to personal ideals or goals. Kantian autonomy retains and strengthens the implied value of commonly conceived autonomy. If autonomy is part of moral agency and moral agency is the standard to which we aspire, possessing a characteristic of it – autonomy – betters us as individuals. Kantian autonomy’s strength is its maturity over the colloquial understanding of autonomy as control of one’s own actions. Instead autonomy requires rationality (a good choice since we wouldn’t want to say that a young child is completely autonomous) and recognition of holding oneself to the same standards one holds everyone else. Through the concepts of negative and positive freedom, autonomy is no longer lawless – it cannot be solely subject to desire and inclination and it must work within accepted universal laws. Nevertheless, the Kantian conception of autonomy is not a practical one. It is abstract and theoretical, and while it unifies deeper concerns of what an autonomous agent is like, his theory has no direct implication that can be useful to us in pursuit of understanding autonomy and paternalism as they are understood in medical ethics. 4 Hill p. 20 11 In an effort to define autonomy in a way that captures the concerns of contemporary medical ethics without leading to theoretical incoherence, I propose that we adopt a neo-Kantian understanding of autonomy as the ability to set ends for oneself. This definition has a certain elegance to it that the more colloquial ones lack. Instead of trying to determine which things count for affecting our lives deeply or attempting to define which states of freedom are those of enough importance to contrast autonomy with physical liberty or unintentional action, we deal with one concern – values. Autonomy is about determining and ranking intrinsic goods for ourselves on a subjective ground. Meghan, an autonomous 29 year-old, has decided that for her, absence of chronic pain is more important than prolonging life, but prolonging life is more valuable than avoiding minor nuisances such as seatbelts. She has come to this prioritization on her own, through selfreflection and consideration of the possible lives that would result from an alternative ranking of values. On the other hand, Billy, a 5 year-old, lacks the capacity for this sort of prioritization. He may have certain values, but his expression of them is simply a regurgitation of what his parents have told him. This fits with our intuitive sense that children are not fully autonomous, for to have that characteristic, one must understand the concept of values, must be able to reason through their ranking, and to self-reflect on ingrained values from one’s past. The ability to set ends is fundamental to being a moral agent. This explains why we find violations of autonomy so repugnant. First of all, since autonomy is an essential characteristic of a moral individual, violating autonomy is a violation of the sanctity of the rational individual. This also clarifies why autonomy is not a right. As stated previously, moral rights are claimbased. Individuals are either autonomous or they are not – they cannot make any claim to autonomy just as they cannot make a claim to being a moral agent. These properties are inherent 12 to the moral agent and cannot be supplied by an exterior force. Autonomy is still very relevant to moral rights. Making claims requires autonomy since one must know one’s ends and thus make the required claims to achieve or protect those values. For instance, I as an autonomous agent have set my values, one of which is the prolongation of my life. Being autonomous requires rationality; therefore, I cannot value prolongation of my life at all costs nor could I value the presence of injustice. Such values are irrational as they are destructive to societal constructs and they promote self-interest at the expense of other individuals and their autonomy. For instance, I cannot claim the right to the kidney of my mother to save my life to promote my value of prolonging my life. I express my autonomy when I prioritize the value of my life highly. I have also prioritized the values of justice and others’ autonomy highly. Taking these other autonomously set values into consideration, I find that to claim a right to life does not accurately reflect what I value. Therefore, the right I autonomously claim is the right to not be killed unjustly. This demonstrates the close interplay of autonomy and rights. Autonomy is the foundation for the basis of all moral rights because the claims behind the rights derive from the rational hierarchy of values that is characteristic of autonomous individuals. Another explanation behind why others falsely claim autonomy as a right may stem from the fact that a violation of other rights seems to mirror what a violation of autonomy would produce. If a right not to be deceived could be considered a moral right, then imagine what occurs when the autonomous individual experiences deceit. False information, manipulation, and misdirection create a false reality which interferes with rationality. Impaired rationality impacts autonomous thought and the ability to set ends. It is for this reason that our interest in claimbased rights is due to our interest in preserving our autonomy – these rights assure maintenance of the conditions we require to set individual values and prioritize. This close relationship, where 13 impeded autonomy is a consequence of violated rights, is why we commonly think of autonomy as a right. It is important to remember that it is, instead, an essential aspect of a moral agent and imperative in making claim-based rights. IV. The Concept of Paternalism On the definition of autonomy as setting one’s own ends, it is easy to see how difficult it is to find a justification for a violation of this most essential characteristic of a moral agent. Often associated with a violation of autonomy is the concept of paternalism. As it is commonly understood, paternalism is a violation of autonomy for the benefit of the violated individual. The concept is derived from a parental relationship where a parent may restrict what type of foods her child may eat or force her child to take a nap. The parent does this not for her own benefit. She does not feel pleasure in controlling her child’s life nor does the child’s diet or nap time affect her. Instead, her rules and restrictions are constructed for the purpose of helping her child develop in the best way possible and to ultimately become an autonomous being. True paternalism should be used only to benefit the individual experiencing coercion. On the surface of it, paternalism does not seem controversial in the slightest – it does not involve manipulation of moral agents to be used as instrumental beings. The paternalist acts out of concern for others’ welfare. However, imagine yourself about to plan a two-week vacation to Europe, an expense you’ve been saving up for since you first thought it out a couple of years ago. Just as you are about to book your flight, buy your Eurorail pass, and reserve your villa, a non-profit group freezes your bank account and informs you that putting that money towards a retirement plan is a much better investment for you. Assuming you are many years away from retiring, you would truly resent this override of your decided priorities. At this stage in your life, 14 this trip has greater value to you than your financial situation 40 years down the road. This captures not only the bizarre idea of external others interfering with actions chosen by our internal thoughts and mindsets but also the high value we place on liberty. Liberty or freedom is not the same thing as autonomy. Freedom describes being physically unrestricted – a free person may act however they choose as long as their action does not restrict the freedom of another. Autonomy on the other hand is not a description of our physical state but is a characteristic of our moral selves. An individual could be autonomous but unfree or free but not autonomous. For instance, a convict in prison obviously lacks freedom. He may still be autonomous because he is still able to set ends for himself, like whether it is more important for him to have a reduced sentence due to good behavior or whether he values his rank within the prison system and acts out to show his dominance. Alternatively, anyone could have freedom and do whatever they desire but if they do not rationally prioritize their values, then they do not act autonomously. When it comes to paternalism, both autonomy and freedom may be affected to different degrees. Consider seatbelt laws. A law requiring all drivers to wear seatbelts is definitely an infringement of liberty. The range of choice of action is limited to one (realistically two – you either wear the seatbelt or you don’t – but legally, one). Whether or not this is a violation of autonomy is another question. If the driver values her life but irrationally favors not wearing a seatbelt, then forcing her to wear the seatbelt does not violate her autonomy; in fact, it encourages her to act in ways that align with her autonomously set ends. On the other hand perhaps it is conceivable that a driver may rationally rank freedom and physical comfort as more valuable than prolongation of life in that case. Another commonplace example would be a scenario at a bar. Suppose you and a friend are out and have had a couple of drinks. Your friend 15 wants to act impulsively – get in a fight with a stranger, hook up with a casual acquaintance, drive home while drunk – and you prevent him from doing so. Obviously, you are interfering with his liberty and restricting his actions; however, his autonomy is untouched. First of all, his mind is in an altered state, where he is clearly unable to rationally prioritize his values. Second, you know that tomorrow, he will regret these decisions and their consequences, and so you save him the pain of that shame and act paternalistically. These are just a couple of cases of justified paternalism. Unless you are a strident libertarian, you probably find nothing wrong with the paternalistic action taken here. Obviously not all cases of paternalism are justified but there are instances where we find worth in paternalistic action. What is the essence of the action that makes it valid? In both the case of the seatbelt and the friend at the bar, paternalism involves only a violation of liberty, but in the case of Rose, the 82-year old grandmother who wants to be informed of her medical condition, paternalism would involve a violation of her autonomy. I propose that the rule of thumb is that a paternalistic interference with liberty is sometimes justified and a paternalistic interference with autonomy is never or rarely justified. Whether or not paternalism is justified must then depend on what aspect of the human experience it is affecting. V. Justification of Paternalism The argument for the justification of paternalism cannot rely solely on examples. Why is autonomy inviolable but liberty not? Autonomy is a fundamental attribute of a moral agent. An individual is either autonomous or they are not. Autonomy so defined cannot be claimed as a right because it is a capability and a utilization of rationality; rationality is an essential feature of autonomy and no right can be claimed to rationality. Similarly, we cannot claim a right to be a 16 moral agent – it makes no sense to talk of such a capability as a right. We possess rationality, consciousness, and self-awareness that allow us to practice morality, but if we weren’t those things, we wouldn’t claim a right to them. To give an analogy, we possess optic nerves, rods and cones in our retinas, and accommodating lens, all which contribute to our ability to see. Those with damaged optic nerves do not talk of a violated right to vision, but instead discuss capability and impairment. Autonomy is a status of moral agency which is dependent on the existence of several other mental capabilities of humans. None of these properties could rationally be claimed as a right. Unviolated autonomy is essential to moral agency. Arguably, moral agency is the most inviolable characteristic of any individual. To restrict or prevent full actualization of moral agency is to prevent an individual from accessing a trait most unique to humans. If a steadfast rule is never to prevent someone from being a moral agent and if autonomy is essential for moral agency, then it would follow that autonomy may also never be violated. Autonomy is also a basis for reciprocal claim-based rights. As the autonomous individual rationally prioritizes her values and sets her own ends, she claims rights to the means to achieving these ends. These rights heed respect and attention of other moral agents for consideration because these rights are derived from an inviolable autonomy. Via the connection of rights to autonomy and autonomy to moral agency, respect for an individual’s rights is therefore a way to promote moral agency. Rights to liberty are among the rights connected to autonomy. In order to meet many different ends, the moral agent requires liberty of action. Freedom to choose how we act is essential to reflecting how we have ranked the importance of different values. 17 Rights are not set in stone – that is, if you claim a certain right, you are not guaranteed limitless acknowledgment or fulfillment of the right. First of all, rights are claims made on others and therefore are dependent on the acceptance of the claim by others to grant the right. The idea of reciprocal claim-making is key here.5 This means we claim rights with the understanding that others may claim the same rights, and we are more likely to grant each other rights with the understanding that the same rights will be granted to us by others. This also means that if one individual does not respect the rights of others, it is an appropriate response to limit the offending individual’s rights. For instance, a basic right is the right to not be killed unjustly. The common response to murderers is to severely restrict their right to liberty. Rights are not above violation, but such violation must be justified. Paternalism as an interference with liberty is a prima facie violation of the right. In the case of the friend at a bar who has had too much to drink, restricting his liberty is justified with the understanding that he would truly regret his actions once he was sober. This underlying subtext of paternalism – that the action will truly reflect what the coerced individual values but does not necessarily want at the moment – is central to the justification of the action. Another way to say this is that justified paternalism is an effort to restore or protect autonomy. Whether it be micromanaging a drunk friend in a bar, enforcing a ‘click it or ticket’ law, or restraining an emotional person from committing suicide, the idea behind each act of paternalism is that coerced individual’s choices will not result in the truly desired or valued consequence of that action. Interruption of these non-autonomous choices is justified because paternalism is promoting the individual’s welfare. 5 Anderson, Elizabeth. “If God Is Dead, Is Everything Permitted?” Philosophers Without Gods: Meditations on Atheism and the Secular Life. New York: Oxford University Press, 2007. pp. 215-230. 18 Paternalism towards liberty is vastly different from paternalism towards autonomy because the latter reflects a judgment on an individual’s set ends, namely that they have been incorrectly set. For a system of values that is determined rationally, this is a reflection of autonomy and thus moral agency. Any attempt to correct the system of values indicates a lack of respect for the moral agent and is never justified. Therefore, paternalism can either be a violation of autonomy or liberty for the benefit of the individual whose autonomy or liberty is violated. A violation of autonomy is never justified, but paternalism with regards to liberty is sometimes justified, specifically in cases where the violation of liberty reinforces the individual’s autonomy. VI. Divergence from Past Theories This concept of paternalism differs from what others have claimed the concept means. For instance, a popular reading of John Stuart Mill suggests he believed the only justification for interfering with liberty was to prevent harm to others.6 According to this interpretation, his philosophy did not even allow for a concept of paternalism because he saw the individual as having sovereignty over body and mind. His principle of non-interference except to prevent harm to others is known as the harm principle and only applies to humans with mature faculties. Mill’s strongest argument for why interference with liberty is wrong is that such interference may be wrong, i.e. there is a possibility we may cause harm by interfering with liberty and so to err on the side of caution, we should not interfere. If we are willing to impose our own morality on someone else, then we best be ready to have someone else’s morality imposed on us. If that causes concern, then we should just respect liberty and never violate an individual’s right to it. While Mill’s theory is attractive in its simplicity and its staunch defense of a right to liberty, it fails in that it does not explain our commonsense reactions to different scenarios. Under Mill’s 6 Mill, John Stuart. On Liberty. 1859. Kitchener: Batoche Books. 2001. 19 theory, we should not interrupt our drunk friend at a bar. We shouldn’t hold his car keys for him and we should let him pick a fight with a stranger. In reality, we would never act this way. Any theory of paternalism must be able to explain our intuitive actions in relatively black-and-white scenarios. Another concept of paternalism is that of legal paternalism: justified coercion by the state to protect the actor from his action.7 In more extreme cases, interference with liberty is justified on the grounds of betterment of the actor versus simple prevention of harm. Cases of legal paternalism imply that the state knows the interests of its citizens better than the citizens know themselves, giving the state guardianship over those interests in loco parentis. Feinberg indicates the potential danger of legal paternalism by extending the citizens as children of the state analogy: after a while, you must treat children more maturely or else they never leave their child stage. Similarly, citizens without rights necessary to exercise their autonomy8 lose power of rational judgment and decisive action. However, as stated previously in response to Mill, Feinberg thinks that to reject paternalism entirely would be to go against commonsense. It would mean that a person’s own good is never a valid reason to coerce him. It is commonsense to reject the validity of an individual’s consent to undergo disablement, murder, or slavery. Under this logic, we should act to prevent anyone from selling themselves into slavery because it is intuitively against their welfare and lacks any semblance of rationality. Where Mill only allows for interference when harm to others is involved, Feinberg states that the individual’s personal good plays a large role in justifying choices for or against certain actions. When personal good is not promoted, paternalism may be justified. 7 Feinberg, “Legal Paternalism.” Here, autonomy does not reflect the proposed definition of a rational ability to set one’s ends, but is understood more loosely. 8 20 Since actions towards oneself can be considered consensual if they are informed and voluntary, Feinberg finds it important to distinguish the degree of volition involved with action. A voluntary assumption of risk is equivalent to the Aristotelian deliberate choice. Impulsive or emotional actions are not chosen – instead, this is acting on desire which is not in accord with the Kantian idea of autonomy. Voluntary actions are those that come from a place of calmness and deliberateness, without distractions, emotions, compulsion, and misunderstanding. These distinctions will be important to consider when examining practical cases of autonomy in medicine. To me, misunderstanding seems to be the most interesting consideration related to volition and the right to liberty. As Feinberg illustrates, the woman who thinks she is sprinkling salt on her dinner when it is actually arsenic is acting involuntarily.9 Here, Mill would permit paternalism to protect an individual from her own ignorance, given sufficient evidence that her misinformed choice differs from her intended choice. Feinberg goes further and says that “on other occasions a person may need to be protected not from his ignorance but from some other condition that may render his informed choice substantially less voluntary.”10 In this way, paternalism is justified for children and the mentally ill. Mill would not allow any individual lacking the ability to reflect and reason to jeopardize their safety. Feinberg concludes that paternalistic interference may occur to prevent self-harm when the action is not voluntary or when the interference may halt the action to allow for establishment of whether or not the action is truly voluntary. 9 Feinberg, “Legal Paternalism.” Feinberg p. 117 10 21 This view of paternalism is an easy pill to swallow. It is not a true violation of voluntary action and is concerned with the individual’s own concern for her well-being. The major problem is this: how can we determine whether someone has full reflective and reasoning capacity? If I see someone about to jump off a bridge, I will try to stop them to prevent them hurting themselves. However, if I personally find suicide to be an irrational decision, no justification the jumpee gives me will show me that that he has made a rational decision. The fact that I am moved to interfere with liberty indicates that I already have a preconception of what is a rational choice and what is reckless. Ultimately, Feinberg’s conception of paternalism isn’t sufficient because beyond violated involuntary action, there are instances of violated voluntary action that are justified. Note the similarities, though, between his theory and mine. He justifies paternalism when action seems involuntary or rash, but respects the sanctity of voluntary actions arrived at through rationality. This seems to be reflective of autonomy in that both voluntary actions and autonomy require rationality. I think that the concept of autonomy further embodies the respect both theories are allotting to the moral agent and it would seem as though the contrast between liberty and autonomy may allow for more cases of justified paternalism then allowed via the distinction between involuntary versus voluntary action. Gerald Dworkin defines paternalism as “the interference with a person’s liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests, or values of the person being coerced.”11 Culver and Gert find this definition too limiting and to prove the narrow scope of this definition, they give the case of Mr. N, who for religious reasons, refuses blood transfusions and makes this clear to doctors upon his arrival to a hospital following 11 Dworkin, Gerald. “Moral Paternalism.” Monist. Vol 56.1. 1972. p. 65 22 extreme blood loss. He loses consciousness, and the doctor, believing Mr. N will die without one, carries out a blood transfusion. Culver and Gert argue that this is not coercive and does not interfere with the person’s liberty of action.12 I feel as though Culver and Gert read Dworkin’s definition too literally. While Dworkin says ‘liberty of action,’ I never interpreted him as restricting paternalism to physical immediate action and behavior. Liberty can also include the freedom to make choices about actions, not just the freedom to act. In the case of Mr. N, his liberty of action is extended to his liberty to choose action done to him, and this is violated by the physician. Dworkin’s definition of paternalism is similar to mine – however, he does not make the distinction between autonomy and liberty. In fact, his definition seems to permit a violation of autonomy due to a justification based on ‘values of the person being coerced.’ I argue that the only time a person’s values may be judged as wrongly upheld are when the values are arrived at irrationally. Without this distinction, Dworkin runs the risk of supporting an environment where paternalistic action is justified based on a difference of values, a situation we intuitively would not endorse. Culver and Gert make the argument that only moral rules – killing, causing pain (mental or physical), disabling, deceiving, breaking a promise, cheating, and depriving of freedom, opportunity, or pleasure – require justification for breaking.13 Therefore, since paternalism also requires justification, it must be concerned with the violation of moral rules. I find this to be a compelling aspect of the Gert/Culver definition because as they show, it accounts specifically for many instances we consider as paternalism (not telling a patient the truth about a delinquent son or giving a patient a placebo treatment). 12 Culver, Charles M; Gert, Bernard. “Chapter 7.” Philosophy in Medicine : Conceptual and Ethical Issues in Medicine and Psychiatry. New York: Oxford University Press, 1982. 13 Culver and Gert, Chapter 7 23 Culver and Gert consider three conclusions concerning paternalism – it is always justified, never justified, or sometimes justified. The first conclusion, that paternalism is always justified, can be defended by act-utilitarianism. This theory states that the right course of action is that which causes the most good and/or prevents the most evil. Commonly called situation ethics, this denies the importance of moral rules since the only required justification for action is the caused good or averted evil. However, since situation ethics does not require moral rules, it cannot be explain why paternalism is always justified because it is incongruous with Culver’s stipulation that paternalism violate moral rules. The second conclusion, that paternalism is never justified, is explained by Tom Beauchamp who claims that we should never act paternalistically even in cases where it seems obvious that paternalistic intervention is allowed.14 Consider this case of intuitively justified paternalism: a friend accidentally ingested a toxin that produced suicidal tendencies. Here, we would feel justified in preventing him from killing himself; in fact, we would judge a bystander for not alerting him to the imminent danger. Beauchamp would agree with us, but would instead say that in this case, this is not actually paternalism because the interfered action is not voluntary. Culver and Gert do not find the voluntary or nonvoluntary nature of the action to be the distinguishing feature for justification. They defend the third conclusion, that paternalism is sometimes justified. For them, “in order to justify paternalistic behavior, it is necessary (not sufficient) that the evil prevented for S by the moral rule violation be so much greater than the evil, if any, caused to S by it, that it would be irrational for S not to choose having the rule violated with regard to himself.”15 A 14 15 Culver and Gert, Chapter 8 Culver and Gert, p. 148 24 comparison of evils caused and prevented is not sufficient to justify paternalism, nor is an assessment of the patient’s rationality adequate. They find validity in theoretical universality of a proposed paternalistic intervention. Shying away from utilitarian constant support of paternalism and heading down a Kantian highway, they find that if you considered a paternalistic intervention on a universal scale, the action is justified if all rational persons will publicly advocate the act. If we can argue for the universality of a certain action, then it would seem odd to try to conclude that the action may not be done, for if everyone agrees to it, then in a holistic sense, no moral rule is violated. By this, I mean that while paternalism violates a moral rule in the immediate sense, in the bigger picture, no rational being objects to it, so it is not immoral. If we were all masochists, then prevention of pain would not be a moral rule, because no one would be disquieted by its violation. If Dworkin is concerned with a violation of liberty, then Culver and Gert are concerned with moral rules. These are violated, not liberty. However, adherence to moral rules is what enables the presence of liberty; therefore violating a moral rule is in turn violating liberty. The other problem the authors find with Dworkin’s definition was the use of the word coercion. They argue that when a patient is unconscious, paternalistic action with regards to the patient is not coercion since the patient is not actively resisting the action. It seems strange not to see action taken towards unconscious person to be coercive if it is an action to which the person would otherwise object. Coercion can also be considered as domination or use of authority. In these cases, the doctor uses his authority to order medical procedures as a way of inciting paternalistic behavior. Additionally, if someone is ‘manhandling’ an unconscious person, they have 25 dominated them even if there was not resistance – they are making choices for the person and are affecting what happens to the body. While Culver and Gert’s theory is very promising because it clearly distinguishes some of the nuances of paternalism, I think its specificity misses the overall point. For these authors, paternalism is a violation of moral rules with respect to an individual for that individual’s benefit without the individual’s consent. The focus on violation of moral rules can easily be summed up as a violation of liberty. Deceit, infliction of pain, and deprivation of opportunity are all moral rules outlined by the authors. Arguably, the violation of these moral rules are also violations of liberty, if not directly then secondarily. Deception, pain, and limited opportunity all interfere with the ability to choose a course of action or a person’s freedom. While I see moral rules as synonymous with liberty, the larger objection I have to the paternalism defined by moral rules is that no distinction is made with regards to autonomy. While these moral rules relate closely to liberty, they also relate to autonomy. In some sense, if we think of a Kantian explanation for morality, these moral rules stemmed from autonomous moral agents who saw the universality of these duties. Additionally, violation of some of these moral rules may directly conflict with ends set by an autonomous individual such as the infliction of pain. Ultimately, Culver and Gert offer no way of insuring the sanctity of autonomy and therefore their theory fails to accommodate for the distinction I make between liberty and autonomy. VII. Case Studies I have argued that autonomy is a rational setting of ends and that paternalism as an interference with autonomy is not justified whereas paternalism as an interference with liberty is 26 sometimes justified. Let’s return now to our initial cases of Robert and Rose and explain the intuitive decisions using my posed theoretical framework. In the case of Robert, we would agree that paternalism is justified. Public health concerns about the unknowing transmittance of HIV aside, we think the physician is justified in testing Robert even though he has not consented to the test. This is a case of paternalism because the results of the test will ultimately benefit Robert by deciding his future course of medical treatment. To determine whether or not the act is a violation of autonomy or liberty, we must consider what values are at play and how coercion affects the values. Robert is young and while he is a drug-user and homeless, he hasn’t expressed any opinions with regard to the value of his life. I would assume that it is safe to presume that unless a patient explicitly states otherwise, the patient wants to continue to live as healthy a life as possible. The test for HIV is minimally invasive, but the cost of lifetime treatment is high at $367,000 in Illinois.16 Unaware of any sort of insurance Robert may have, the hospital’s procedure on treating patients who cannot afford treatment, or any other external factor, I would argue that the cost of treatment isn’t a viable reason to refuse information about his state of health. Living, medical expenses aside, is expensive at the standards we expect in this country, but that doesn’t mean we value life any less. The cost of treatment is an irrelevant aspect of Robert’s decision to not be tested. Instead, this seems to stem from a fear of knowledge and a preference for oblivion. Robert arrives at this preference irrationally. It indicates a lack of responsibility to himself to know his own health and a disregard for his other values such as life. Since the decision is made irrationally, it is not a reflection of his autonomy, and therefore paternalistic action is violating his freedom of choice. I would also argue that this action is justified because it restores his 16 According to the Centers for Disease Control and Prevention 27 autonomy. By knowing fully the conditions affecting his body and future, he can then choose a course of action that reflects what he values as opposed to making such choices based on limited information. In the case of Rose, the paternalistic action would be withholding her prognosis with the intent to prevent her mental duress. This action is not justified because Rose has made it clear that she wants to know information related to her medical condition. The explanation behind this commonsense conclusion is that such information is relevant to Rose, the autonomous agent, not just Rose, the patient exercising her liberty. Rose doesn’t want to know her medical information for entertainment purposes; she plans on taking this information and making choices about her treatment, her affairs, and her family. Additionally, paternalistic action in this case seems to almost micromanage Rose’s welfare. To a certain extent, physicians must respect the liberty Rose has to determine what is good for her. Consider the harm caused – this is not a case where paternalism is preventing a great harm to Rose. She is already terminally ill; to be caught up with concerns about worrying her with a prognosis seems to indicate a lack of perspective on the situation. Ultimately, Rose has asked for the information. To not respect this request interferes with her autonomy and is not justified. The decisions regarding Robert and Rose are pretty uncontroversial. The following cases are less clear and will rely less on an intuitive feeling. Case 1. R.L. is an 80 year-old male living with his wife in a retirement community. He values his independence, but has recently needed to rely more on others. Difficulties include walking and managing medications for diabetes, heart disease, and kidney problems. He starts to indicate a loss of interest in what he once enjoyed, and his doctor diagnoses him with depression. R.L. continues to deteriorate, gaining weight, feeling lethargic but unable to sleep. He talks about killing himself with a gun. His doctor prescribes medication to treat the depression which R.L. agrees to start taking. Two weeks later, before the antidepressants have a chance to take effect, 28 R.L. suffers from a heart attack and is hospitalized. Damage is extensive, affecting his kidneys and requiring dialysis to keep him alive until it is certain whether or not his heart and kidneys will recover. Care now requires moving him three times per week to the dialysis unit where he is connected to a machine for up to four hours. Following his second treatment, R.L. demands dialysis be stopped and to be allowed to die. The paternalistic action in this instance would be for the physician to ignore R.L.’s demands and continue dialysis, prolonging his life. Is paternalism justified in this instance? First, we must consider what we know about R.L.’s values. He values independence which he is obviously losing as his medical condition worsens. His suicidal thoughts and desire to end dialysis seem to suggest that he values his independence more than the prolongation of his life. However, we must keep in mind that these thoughts began with a diagnosis of depression. Does depression affect the required rationality of autonomy? Since depression is an abnormal mental state that alters perception of reality, this suggests that depressed people are not autonomous. Given the vast number of people diagnosed with depression and the implication that an even smaller portion of the population is therefore autonomous, this is not a conclusion I want to endorse. For the sake of argument, however, let’s continue to consider R.L. as irrational. One key indicator of this is that he is no longer interested in what previously gave him joy. If he used to love puzzles, then apathy towards puzzles precipitated by his difficulty to walk is irrational. Walking does not affect the puzzle. This loss of interest would not be irrational if the activities were dependent on his independence. Loss of independence would negatively impact his activities making them less enjoyable. On the other hand, if he values his independence much more than he values puzzles (which seems like a rational prioritization), his loss of interest in puzzles may be relative to his loss of independence. The loss of a higher value means more than 29 the continued pursuit of a lower value. Perhaps depression indicates a loss of rationality; perhaps it indicates a higher exercise of rationality. This paper will not be able to settle that question. R.L.’s desire to die stems from a depressive state which is presumably treatable with antidepressants. Given that he has not had a chance to respond to medication or dialysis, it seems that his latest request to be taken off of dialysis is hasty and depends on his present feeling, not on a consideration of his future state. While I find this a tough case, I would advocate keeping R.L. on dialysis until the status of his kidneys and heart are determined. The justification for this paternalism is that it ultimately promotes R.L.’s autonomy. If his kidneys and heart are permanently damaged, then his request to die is rational because of the value he places on independence. If his heart and kidneys recover, then he is able to continue antidepressant treatment. If this treatment works and he is no longer suicidal, then we see that depression interferes with rationality. If the treatment works and he still wants to die due to limited mobility and the burden of medications, then depression did not interfere with rationality and he should be allowed to end his own life. In the end, the best choice is to wait for more information before making irreversible decisions. Paternalism is justified. Case 2. Patient K.B. is a 25 year-old pregnant female living in a major city in the USA. The fetal red blood cells are being destroyed by K.B.’s Rh-sensitized immune system. The fetus will likely die unless she receives a blood transfusion to replace the fetal erythrocytes. The intent of the treatment is to keep the fetus alive and healthy until the fetus can be delivered. K.B. refuses treatment – she is a Jehovah’s Witness and blood transfusions are forbidden. The difficulty behind this case is that the choices of K.B. and the actions of the physician are not limited to K.B. only. Paternalism in this case would involve giving a blood transfusion to K.B. without her consent. First of all, this touches on some discussion points that typically come out during debates regarding abortion. I support the argument that pregnant women ultimately 30 have control over their own bodies and that a distinction cannot be made between woman and fetus until the fetus is viable outside of the womb. For K.B., we cannot argue that the treatment is for the fetus and not for her and since the fetus holds no religious beliefs, action is justified. While the intent of the transfusion is to affect the fetus, it still enters the mother and it still violates her religious beliefs. K.B.’s values stem from her religious views. Are these autonomously determined values? In one respect, no. Religions are by nature indoctrinating – followers subscribe to a set of beliefs. To determine if K.B.’s values are rational would require a whole other paper on the rationality of faith. In general, I think that physicians would want to abide by the assumption that religious values are synonymous with autonomous values. In this case, to give K.B. a blood transfusion would be a violation of her autonomy, and it is not justified. Case 3 C.M., a male 32 year-old, comes into the doctor’s office with headaches and blurry vision. The physician reviews the possible diagnosis with him, one of which is cancer. C.M. says that he does not want to know if he is terminally ill. After performing a brain scan, the physician finds that C.M. does in fact have a tumor in his occipital lobe that is generally inoperable. However, a new clinical trial with experimental techniques of targeting this type of cancer is accepting patients and the physician thinks that C.M. would have good odds of surviving if he participated in the trial. The paternalistic choice would be to tell the patient that he has a lethal form of cancer. The intent would be to encourage C.M. to enroll in the study and possibly beat the prognosis. The patient values not knowing when he is going to die. A rational avoidance of this knowledge could relate to C.M.’s concern that he would change his perceptions and live his life differently, either becoming reckless or depressed. C.M. did not express such a concern to his physician, and so another common understanding of his desire to not know his prognosis is fear of death. Similarly with Robert, I would argue that knowing important aspects of one’s health is part of 31 responsibility to self. C.M. is able to act more autonomously with the knowledge of his diagnosis – whether he wants to enter the trial, whether he wants to avoid the pain of treatment, what activities are most important to him to complete – and so the paternalistic physician is justified in acting. VIII. Conclusion After examining concepts of autonomy that are commonly used in discussion of medical ethics, I’ve found that these more familiar definitions don’t sufficiently describe the essence of the concerns at hand. Autonomy is holds more gravitas than simple self-governance; it is held to high esteem and seen as inviolable. Pulling characteristics from Kantian thought, I define autonomy as the rational setting of personal ends, a quality of a moral agent. Autonomy and liberty/freedom are also very distinct ideas; liberty is the right to choose actions or to act freely. Rationality is not a requirement of a free individual and free individual is not necessarily a moral agent. Understanding this distinction, I find that a paternalistic violation of autonomy is never justified whereas a paternalistic violation of liberty may be justified, depending on the scenario. When paternalism is justified, does this mean we are obligated to act or simply allowed to act if we choose to? This, I believe, is dependent on the degree of interference with an individual’s liberty and the degree of damage to her welfare if no intervention occurs. For instance, it may be cheaper for my friend to shop at one grocery store than another, but the dollars saved don’t seem to be worth the violation of liberty. It takes a certain amount of commonsense and consideration to decide if justified paternalism demands action. 32 The general concern in the medical field to protect patient autonomy is addressed by Emanuel and Emanuel through a discussion of four models of the physician-patient relationship.17 1. Paternalistic Model: the physician acts to ensure patients receive treatment that is in their best interest. This can vary from selectively presenting information to sway a patient’s decision to imposing the treatment on the patient without seeking consent. 2. Informative Model: the physician relays all information about the condition, possible treatments, and corresponding outcomes without discussing the patient’s values. Ultimately, the patient makes the choice for treatment herself. 3. Interpretive Model: the physician relays all medical information but also works to help the patient articulate her values. Ultimately, the patient determines the values and the treatment to follow. 4. Deliberative Model: the physician relays all medical information but also tries to help the patient choose the best values related to health. Ultimately, the physician goes no further than moral persuasion and the patient still chooses which values to prioritize. The paternalistic model has obvious objections – it’s prevalence in the past was what ignited the discussion for more patient autonomy. The informative model is seen as impersonal and robotic. Many view a technically proficient physician who lacks bedside manner as defective. Patients still want their relationship with their physician to have a caring characteristic to it. For someone to be as intimately involved with your physical body as a physician, you would hope that she cares that your body is treated well and cares that your interests as a patient and an 17 Emanuel, Ezekiel J; Emanuel, Linda L. “Four Models of the Physician-Patient Relationship.” JAM. Vol 267, No 16. April 22, 1992. pp. 2221-2226. 33 autonomous individual are respected. Emanuel and Emanuel suggest that the informative model is best used in situations of a one-time patient-physician relationship, such as in a walk-in clinic. The interpretive model incorporates the caring element of the relationship, but is still flawed because with limited time and technical specialization, it would be difficult for physicians to remain completely impartial – they may accidentally impose their own values on the patient instead of working to illuminate the patient’s values. The deliberative model is the one which Emanuel and Emanuel endorse above all else. This model promotes the patient’s autonomy above all else. For Emanuel and Emanuel, autonomy “requires that individuals critically assess their own values and preferences; determine whether they are desirable; affirm, upon reflection, these values as ones that should justify their actions; and then be free to initiate action to realize the values.”18 The deliberative model, by involving the physician in the argument for which values are to be upheld, makes this an active process and ensures that physicians understand how rational their patients’ values are and safeguards against accidental paternalistic violation of autonomy. References: Anderson, Elizabeth. “If God Is Dead, Is Everything Permitted?” Philosophers Without Gods: Meditations on Atheism and the Secular Life. New York: Oxford University Press, 2007. pp. 215-230. Culver, Charles M. Philosophy in Medicine : Conceptual and Ethical Issues in Medicine and Psychiatry. New York: Oxford University Press, 1982. Dworkin, Gerald. “Moral Paternalism.” Monist. Vol 56.1. 1972. pp. 64-84. Emanuel, Ezekiel J; Emanuel, Linda L. “Four Models of the Physician-Patient Relationship.” JAM. Vol 267, No 16. April 22, 1992. pp. 2221-2226. Feinberg, Joel. “Legal Paternalism.” Canadian Journal of Philosophy. Vol. 1, Issue 1. 1971. pp.105-124. Hill, Thomas. “Kantian Autonomy and Contemporary Ideas of Autonomy.” Oliver Sensen, ed., Kant’s Conception of Autonomy. Cambridge University Press: 2013. pp. 15-31. “HIV/AIDS: HIV Cost-effectiveness.” Centers for Disease Control and Prevention. April 16, 2013. Accessed March 13, 2013. http://www.cdc.gov/hiv/prevention/ongoing/costeffectiveness/ Mill, John Stuart. On Liberty. 1859. Kitchener: Batoche Books. 2001. 18 Emanuel and Emanuel, p. 2225 34