Bioethical Inquiry DOI 10.1007/s11673-013-9492-1
ORIGINAL RESEARCH
Market Liberalism in Health Care: A Dysfunctional View of Respecting “Consumer” Autonomy Michael A. Kekewich
Received: 18 December 2012 / Accepted: 24 April 2013 # Springer Science+Business Media Dordrecht 2013
Abstract The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship. Keywords Autonomy . Paternalism . Liberalism . Consumerism . Freedom of choice
Introduction Sadly, a significant portion of 20th century medical history is littered with cases of patient abuse by paternalistic M. A. Kekewich (*) Department of Clinical and Organizational Ethics, The Ottawa Hospital, Civic Campus, 1053 Carling Avenue, Ottawa, ON K1Y 4E9, Canada e-mail: [email protected]
health care systems. Perhaps not surprisingly, this history of paternalism in both research and clinical care has resulted in a premium on matters of procedural justice—such as individual freedoms, rights, and responsibilities—rather than desired outcomes. In this climate, the right of patients to have their autonomy respected has ascended rapidly and without much hesitation, almost as if to compensate for the historical lack of status enjoyed by the concept. In a paper by Beauchamp, he describes this phenomenon as a “correction toward an autonomy model of patient care” (1995, 182). Accordingly, the right of patients to make decisions for themselves has gained increasing credibility and status. While those working in health care ethics seem to agree that there is no obvious hierarchy among the four principles of autonomy, beneficence, nonmaleficence, and justice made famous by Beauchamp and Childress (2009), the practical reality is that, in most instances, autonomy is given priority over other principles. According to Ranaan Gillion, respecting autonomy is “primus inter pares—first among equals—among the four principles” (2003, 310). In many respects, this bioethical liberalism is well justified. The rise of the universal human rights movement in the second half of the 20th century, along with the many injustices that have occurred in the medical context since then, has created an ideal moral market for rights and freedoms. In this context, conditions have been such that the view of individuals having the right to make autonomous decisions has become paramount, while the formerly paternalistic model has been rendered defunct. In fact, as Paul Root Wolpe notes, describing an act as paternalistic has become “a
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highly pejorative appellation in the present social climate” (1998, 45). Alternatively, the way in which respect for individual autonomy is demonstrated has continued to grow and evolve. Beginning as a negative right to informed consent (or refusal), it appears to have grown features of a positive right to request, reflecting the growth of a consumer or market liberalism model of medicine where individuals can exercise free choice and receive accommodation. Even the term “patient” seems to have gone out of vogue, as many health systems have adopted the term “client” or “consumer” as the most appropriate categorization of those seeking health care services in the modern world. In the context of the National Health Service (NHS) in the United Kingdom, Newman and Vidler (2006) have studied this phenomenon from a sociological perspective. They note that the view of patients as consumers is, in part, premised on the view that “people have become used to flexible, responsive, user-centered services delivered in the market-place and want the same when it comes to the NHS [or other health care systems]” (Newman and Vidler 2006, 197). As this view of health care becomes commonplace, an important question arises: Is this consumerist interpretation of patient autonomy a good thing? Does it even serve the interests of patients? From my own perspective, I conclude that the answer to either question is no. This article will argue against a consumerist view of patient autonomy and will suggest a more practical interpretation of the concept. I will also make an argument for limited paternalism and why this unpopular model is a necessary aspect of any therapeutic relationship. In fact, I submit that paternalism continues to exist quite evidently in the subtext of clinical practice without issue or concern. As I will argue, without some element of paternalism, the notion of autonomy quickly deteriorates into absurdity. Even Dax Cowart, one of the strongest advocates of patient autonomy, has asserted: “I’m willing to forgo some of my own autonomy in the interest of better decisions being made” (Cowart and Burt 1998, 24). This statement is profound in both its irony and its insight. Perhaps under certain circumstances, too much freedom is too much of a good thing. Perhaps, as Rebecca Kukla says, “patient autonomy is consistent with, and often even requires, the displacement of decisions away from the patient and into the hands of health professionals and institutions” (2005, 43). While there are countless
illustrations of bad paternalism and the rightful exercise of autonomy, the point remains that the right to exercise one’s autonomy does not exist in a vacuum and should not be unconstrained. Rather, it exists in balance with other important considerations, depending on the circumstance. In essence, the goal of this paper is to discuss this problem— what Bruce Jennings calls “the blindness of autonomy bioethics” (1998, 264)—and to endorse a more practical view of respect for autonomy. Moreover, although there is substantial literature on the challenges of consumerism in health care from a variety of perspectives (Lupton 1997; Lupton, Donaldson, and Lloyd 1991; Newman and Vidler 2006; Castiel 2003; Milewa 2009; Calnan 2010; Adams and de Bont 2007), there certainly appear to be a growing number of high-profile cases illustrating the ethical challenges associated with this model. It is my intention to reference some of these cases as evidence that the consumerist conception of patient autonomy has become ethically dysfunctional in both theory and practice.
The Evolution of Autonomy Perhaps the greatest evidence that respect for autonomy has ascended and remains atop the principlist understanding of ethical decision-making is evidenced by the abundance of laws, regulations, and codes of ethics that govern the practice of medicine today. Chief among these codifications are regulations around informed consent. A few examples can be illustrative. In Ontario, for example, the Health Care Consent Act (1996) enshrines the legal right of patients to decide for themselves and the obligations of substitute decision-makers to act in accordance with the wishes and values of incapable patients. In the context of research in Canada, the TriCouncil Policy Statement (TCPS2) highlights respect for persons as the first of three core principles to consider when conducting research (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada 2010). Similarly, the TCPS2 discusses requirements for informed consent at length, emphasizing the significance of patient autonomy as a primary consideration. Turning to professional codes of ethics, the Canadian Medical Association Code of Ethics draws attention to the right
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of capable patients to accept or reject medical treatment (Canadian Medical Association 2004), while the Canadian Nursing Association similarly emphasizes promoting and respecting informed decision-making (Canadian Nursing Association 2008). These codifications of autonomy represent significant progress and movement away from the disrespectful and inappropriate form of paternalism of past medical and research practices. At the same time, the sometimes single-minded focus on protecting the rights of capable patients has resulted in less emphasis on other ethical principles. Although beneficence, nonmaleficence, and justice remain salient considerations in everyday practice, it is clear that autonomy is the weightiest principle. In reference to this progression in Western bioethics, Wolpe has observed that: In fact … the four principles articulated by Beauchamp and Childress have not been—and can never be—given equal weight in American biomedical culture. For better or for worse, autonomy has emerged as the most powerful principle in American bioethics, and the basis of much theory and most regulation, and has become the “default” principle of applied principlism, the principle to be appealed to when principles conflict (Wolpe 1998, 43). According to a number of authors, the ascension of autonomy as a moral concept has mirrored the more general sociocultural liberalism that has become commonplace ideology in Western societies, particularly since the many atrocities of the Second World War (Agledahl, Førde, and Wifstad 2011; Jennings 1998; Wolpe 1998). This emphasis on individual rights and freedoms has resulted in patients having far more control over the care they receive and research they participate in. In many respects, this movement has been probably the most important progression in the history of medical ethics. However, the critical inquiry that gave rise to the autonomy movement requires that we ask whether we have stretched the concept too far. Perhaps one indication that the liberal interpretation of respecting patient autonomy has grown beyond its functional limits is its movement across the spectrum from a negative to a positive right. What started as an overly narrow and occurrent view of autonomy as the obligation to seek informed consent for treatment has
over time become a market-based right to request and expect accommodation. Informed consent, to be clear, is a primarily negative right. It is the right to receive information, to refuse unwelcome treatment, and to choose from a range of options made available to the patient. As a negative right, the purpose of informed consent is to protect patients from actions being done to them without their express and informed permission. This is the view of respect for patient autonomy enshrined in canonical documents such as the Declaration of Helsinki (World Medical Association 2008). In this model, autonomy is respected by seeking permission to provide certain treatments or interventions with the understanding that physicians are “still the translators and filterers of information to their patients” (Wolpe 1998, 52). However, while many patients are likely comfortable with their providers constructing the choices made available to them in this fashion, others are not. Evidently, a growing number of patients, or their representatives, are comfortable stepping out of the traditional role of recipient of care and stepping into the role of the consumer. In large part, this is because health care, like other customer-oriented services, has been “reformed by being subject to a free market model” (Lupton 1997, 373). Put nicely by Lupton: Those who have adopted this model of doctor– patient relations view doctors simply as suppliers of services. … It is assumed that consumers will benefit from a return to the free market because of increased competition, which will supposedly “weed out” inferior services and ensure optimal quality, consumer choice and price (1997, 373). Recent high-profile cases of providers refusing to provide requested care are both many and controversial. The Canadian cases of Samuel Golubchuk in Winnipeg and of “Baby Joseph” at London Health Sciences Centre have been illustrative of this consumerist movement. Most recently, the case of Hassan Rasouli at Sunnybrook Health Sciences Center in Toronto has brought fundamental questions around patient choice to the highest court in Canada for judgment (Cribb 2012; CBC News 2008; Mehler Paperny 2011; Thanh Ta 2011) In all of these recent cases, patients or their surrogates exercised their perceived right as autonomous consumers of health care services to
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demand certain interventions that providers felt were inappropriate, ineffective, or both. The difficulty with which providers refused to provide treatment in these three cases is also supportive of the notion that—at least according to many patients— respecting patient autonomy equates to delivering requested services. Furthermore, the legal battles that were spurred by these cases and others have in all likelihood resulted in providers feeling hesitant and apprehensive when refusing even the most unreasonable requests. In fact, a 2012 Medscape survey of the top 20 ethical dilemmas for physicians showed that 35 percent of doctors would provide a life-sustaining therapy they judged to be futile, while 41 percent said they would do the same depending on the circumstances. Only 24 percent of surveyed physicians said they would not provide such an intervention (Medscape 2012). These cases are indicative of a societal view of respect for patient autonomy as respect for consumer choice. Not unlike the consumer movement in general, the change of dynamics between patients and providers may be reflective of patients feeling decreased levels of trust and increased levels of skepticism when approaching providers. In this model, many patients may be comfortable challenging the professional authority of providers by empowering themselves (Newman and Vidler 2006; Adams and de Bont 2007). On this topic, Wolpe has observed that: The structural impediments to trust have resulted in a consumer orientation to medicine, and where caveat emptor reigns, the public will insist on good package labelling. In a world where medicine has become a good to be consumed and where patients are consumers to be wooed, informed consent becomes the disclosure of contents on the back of the box. Informed consent involves discussion of the nature of a procedure, its risks and benefits, and alternative treatments, and it is enacted through the modern ritual of free assent, the signing of a contract. The contract model reciprocally reinforces the primacy of autonomy by tying medicine to other ritualized signings in modern society—loans, rentals, licensing—where two parties are exercising their free right to exchange goods (Wolpe 1998, 51). Moreover, the increasing democratization of information through technology (Calnan 2010) has rendered complex information easier for consumers to both access and understand. Similarly, dissemination of information
through realistic television programming can act as a misguided form of patient education and empowerment. As an example, a 1996 New England Journal of Medicine article startlingly suggested that popular television shows such as ER, Chicago Hope, and Rescue 911 portrayed the rate of survival until discharge after cardiopulmonary resuscitation (CPR) to be as high as 100 percent, when in fact actual rates at the time of the study were closer to 30 percent (Diem, Lantos, and Tulsky 1996). Similarly, Castiel points out that, in the public health context, the Internet-based information used by patients to self-educate is of questionable quality and consistency (Castiel 2003). As a result of patients selfeducating in these ways, health care providers are at risk of being seen less as experts than “technicians, with no real ability to determine the manner in which their technical skills are applied” (Minkoff 2006, 310) and may become decreasingly successful in their attempts to filter and translate information according to their own professional judgment and expertise. In the context of this market-based view of respect for autonomy, there is no reason to believe that patients will not become even more comfortable approaching medicine like any other commodity. In a 2008 American College of Obstetricians and Gynecologists Committee on Ethics opinion paper on elective caesarean deliveries, for example, the physician authors succinctly summarize the concerns raised above: How should the physician respond to a patient who requests a specific surgical therapy without having an accepted medical indication? Should health care options be regarded in the same way as choice of cereal in the supermarket: the consumer makes a choice based on appearance, content, and cost, and the grocer takes the money and bags the cornflakes without providing any direction (American College of Obstetricians and Gynecologists 2008, 1)? For a growing number of patients and families, respect for autonomy has transformed from a system of patient protections to a system of patient entitlements that many “consumers” are dangerously attempting to make good on. As Bruce Jennings describes this phenomena, “[t]his is neither the liberalism of the Enlightenment nor the liberalism of the Reformation; it is the liberalism of the marketplace” (1998, 268). Is the market liberalist interpretation of respect for patient autonomy a good thing? Does it benefit patients in the way the concept of autonomy should?
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The Evolution of Paternalism While this consumer model of patient autonomy has gained significant traction in Western health care, paternalism has come to embody a form of ethically shady behavior. Cases like Rasouli’s clearly illustrate the challenges met by health care providers refusing to provide requested care and the backlash that can ensue as a result. Based on these cases and others, one is led to believe that explicit refusals to provide inappropriate care, as well as explicit discussions around withdrawing care, are less and less likely to occur. But does paternalistic behavior continue to exist in more subtle forms? If so, is it justifiable? I submit that paternalism has evolved alongside our understanding of autonomy and continues to exist by virtue of what we might call the inherent purpose of medicine. First, the fact remains that health care providers are still “better placed to make good judgments about various important health care choices” (Kukla 2005, 42). In this sense, while patients are best positioned to know what they desire for themselves, providers are best positioned to know which options are available from which to choose in order to meet those desires. It would be impossible for the vast majority of patients to receive anything close to appropriate care if some form of paternalism did not continue to exist. In other words, whether we recognize this or not, providers are routinely limiting and contextualizing the choices made available to patients. Providers act paternalistically—in the basic sense of the word—by constraining “the range of choices over which a patient may exercise autonomy” (Lantos, Matlock, and Wendler 2011, 497). While it may be the case that the current market liberalism of health care systems allows for patients to choose their health care as they would any other good, the reality remains that “options are constructed” (Agledahl, Førde, and Wifstad 2011, 2) by health care providers in one form or another. This construction of choice happens in a variety of ways, all less explicitly paternalistic than was the case half a century ago. Perhaps most evidently, it occurs in the manner in which information is communicated and contextualized. As quoted from Paul Root Wolpe earlier, providers remain “translators and filterers of information to their patients” (1998, 52). While in most circumstances they do not have the ability to explicitly choose for the patient, providers do have the ability to choose how information will be presented. Consider
presentation of CPR. A physician might simply ask a patient: Do you want CPR in the event that you arrest? Presented in this way, the provider is creating a completely neutral context for the patient to act from. Alternatively, another physician, not at all believing that CPR is in the patient’s best interest, might draw attention to all the reasons why CPR is a downright ridiculous idea. By doing so, the provider creates a non-valueneutral context that the patient operates in, and by choosing the intervention the patient is in the now awkward position of deciding contrary to the provider’s recommendations. Depending on how strongly a physician advocates for or against a certain intervention and what language he or she uses, one might even argue that a patient’s freedom of choice is effectively eliminated because making a decision to the contrary would seem utterly absurd. Even further, as seen in the Canadian cases of Golubchuk, Rasouli, and “Baby Joseph,” a physician might ultimately consider refusing to provide an intervention altogether by not even offering it (Cribb 2012; CBC News 2008; Mehler Paperny 2011; Thanh Ta 2011). By passing judgment in the manner described above, a provider is normatively framing the context within which a patient must choose. With the resuscitation example, the provider is aware of the extreme risks and futility of CPR and persuades the patient, perhaps even desperately, to choose another option. While a patient may nonetheless choose to have full resuscitation efforts performed, the physician has paternalistically—and justifiably—attempted to direct the choice in question through his or her status as an expert. It is also important to note that this subtle control of patient choice is rather effective. David Orentlicher writes that: Studies of decision making for health care problems … have consistently demonstrated that people’s choices depend in part on the way that information is presented to them. … [W]hen patients are asked to make treatment choices for advance directives, they are more likely to choose treatment when the treatment is described in a positive way. In one study, patients chose treatment 30 % of the time when it was characterized in a positive way but only 12 % of the time when it was characterized negatively (1992, 2102). With this new form of paternalism, providers exercise persuasion and dissuasion—rather than imposition—to “steer patients’ choice” (Agledahl, Førde, and Wifstad
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2011, 3). Depending on the situation and how firmly a provider feels about an intervention, he or she can ultimately “recommend, offer, acquiesce, [or] refuse” (Minkoff 2006, 312), thus constraining the choices in question. While perhaps not as overt a form as once existed in medicine, this construction of appropriate options is nonetheless a common and justifiable form of paternalism. This soft paternalism is justifiable because, as many have noted, the market liberalism model of autonomy that has become commonplace in Western society fails to meaningfully protect patient interests in the way the concept should. Put succinctly by Agledahl et al., “the presence of a choice does not in itself ensure empowerment” (Agledahl, Førde, and Wifstad 2011, 3). In the context of health care, choices are complex, multifaceted, and influenced by a range of factors, including the judgments of those who provide the care. This reality is explained by Kukla, who discusses our current view of patient autonomy as being expressed by specific choices: Underwriting the standard bioethics picture is a strong assumption that the relevant “unit” of autonomy (or lack thereof) is the punctate decision—a decision made in response to a discrete choice that can be understood in isolation from the rest of a patient’s health care. A particular act or choice meets the standards of autonomy if it has its source in the deliberations of a properly informed self (Kukla 2005, 35, emphasis original). Kukla argues that this view of autonomy as occurrent patient choice is too narrow and does not meaningfully protect or serve patients. Because every patient’s autonomous actions exist within a “larger pattern of normative relations between the patient and her health practice … or self-management and her interactions with health professionals” (Kukla 2005, 41), it does not make sense to speak of autonomy as a narrow and decontextualized form of free-market choice. In reality, Kukla argues, laypeople are unable to make responsible choices for themselves without deferring authority to providers who are better positioned than they to make judgments and construct options (Kukla 2005). In this sense, the consumerist view of autonomy does not accurately reflect the reality or purpose of medicine. Most providers construct choices, create normative routines, constrain available choices, and steer
patients in a desired direction. This is because—contrary to the consumer understanding of respect for patient autonomy—medicine does not fit the profile of other commercial endeavors in which consumers are supplied with the goods they choose. Put differently, “medicine is not neutral, but is aimed at helping patients” (Agledahl, Førde, and Wifstad 2011, 3). This inherent goal cannot be accomplished by simply providing a range of choices and leaving patients to decide for themselves. According to Lupton, “[d]ependency is a central feature of the illness experience and the medical encounter and serves to work against the full taking up of a consumer approach” (Lupton 1997, 379). In part, this dependency is likely a factor of the “asymmetry of information between supplier (doctor) and consumer (patient)” (Lupton, Donaldson, and Lloyd 1991, 560). Thus, as a result of health care being a non-value-neutral enterprise, Kukla concludes “that either autonomy is not routinely worth protecting in health care contexts or autonomy is not the same as self-determination” (2005, 38). Based on these criticisms of consumer autonomy and our “tendency to treat moments of decision as the loci of ethical importance” when promoting it (Kukla 2005, 43), one is left to question what role autonomy should play in health care. From my perspective, I perceive that the formerly paternalistic and currently growing consumer-centric models of medicine are at opposite ends of the same spectrum, while also sharing a common dysfunction. In both models, there is little room for development of a meaningful therapeutic relationship between patient and provider. In the overly paternalistic model, providers showed little to no respect for the values, goals, and desires of patients. Similarly, in the current model of patient autonomy as a form of free-market consumerism, increasing numbers of patients feel empowered to place less importance on the expertise and judgments of providers. Unlike the previous model of informed consent as a negative right, the “positive-rights approach to the consent process assumes that, even as a lay person, each patient is capable of identifying medically reasonable alternatives and that physicians are obligated to carry out patients’ request simply because they are patients’ request” (Minkoff 2006, 310). Clearly, this is not the case. Similarly, Lupton argues that “the consumerist approach may be counterproductive, undermining the very trust and faith that is central to the healing and comfort that very ill people desperately seek in the medical encounter” (1997, 380). At the extremities of
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each discourse a lack of respect for the role of the other is evident. Such extreme views ignore the fact that the rights of each party are not mutually exclusive. In many ways, the swing from one end to the other is an unfortunate phenomenon. Those who do the difficult job of providing health care services should, as Kukla says, acknowledge the authoritative role they properly play in inculcating patients into normatively contoured health practices, and … need to claim and examine this role. … [T]hey need to find ways to use it to foster a conscientious relationship to appropriate health care practices (Kukla 2005, 43, emphasis original). At the same time, as well as having a basic right to refuse unwanted care, patients should have the right to choose a provider whom they feel aligns with their values and goals. In this ideal middle ground between paternalism and autonomy, patient and provider would work together with neither having an exclusive right over the other, except the right to exit the relationship if it ceases to function properly. In this model, providers retain the right to constrain choices in accordance with their judgment, and patients exercise something akin to what Kukla calls “conscientious autonomy” (2005, 38). This conscientious autonomy is exercised when patients uphold and communicate “principles, practices, goals, values or regimes that we take as our own normative standards” through self-reflection (Kukla 2005, 38). In this respect, patients and providers form a balanced relationship where each party’s role is transparent and respected. This proposed model of decision-making is not novel. There has been much discussion of “shared decisionmaking” (Kon 2010, 903) and its benefits. This model, which can take a variety of forms depending on the circumstances, has been formally supported by a number of prominent colleges and medical associations (Kon 2010, 903). In part, this model is premised on the notion of “relational autonomy” (Elwyn et al. 2012, 1). According to Catriona Mackenzie, this relational view rejects the individualist assumptions about agency implicit in mainstream conceptions of autonomy within bioethics, political philosophy, and moral psychology. Relational views are premised on a socially embedded conception of agency and argue that an adequate theory of autonomy must be
based on recognition of the ways in which, as agents, our practical identities and value commitments are constituted in and by our interpersonal relationships and social environments (2008, 519, emphasis original). This is similar to the idea of conscientious autonomy proposed by Kukla. In both theories—relational and conscientious autonomy—the mere presence of selfdetermination and free choice does not necessarily constitute meaningful exercise of autonomy. Instead, one’s autonomy exists in relation to a wide variety of other factors, including the relationship with the provider with whom one is interacting. In both of these models, patients do not exercise complete control; they are participants in a more complex, multifaceted, and shared decision-making process.
Conclusion Before concluding, some limitations to this argument should be noted and dealt with. This author’s experience of contemporary health care is limited to the Canadian health care system (Ontario, more specifically). This argument presupposes that circumstances in this part of the world are not entirely different than those in other Western health care jurisdictions. That being said, the literature certainly suggests that circumstances are very similar elsewhere. Second, this argument discusses issues that probably do not apply to the majority of patients. Clearly, a good number of patients enter into healthy and functional therapeutic relationships with few, if no, issues. A 1991 Australian study conducted by Lupton, Donaldson, and Lloyd, for example, showed that most patients did not behave “consumeristically” when approaching their choice of provider (1991, 567). Similarly, Timothy Milewa notes that more recent surveys specific to the National Health Service in the United Kingdom have indicated that approximately 80 percent of patients had complete trust in their providers (2009, 167). This argument is admittedly directed toward a minority of cases that appear to be materializing with increasing frequency and controversy. However, I would argue that the actual number of cases to which this argument applies is immaterial. Although the existing cases represent a minority of the overall patient population, they are incredibly resource-intensive, highly publicized, and speak to foundational questions in
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health care ethics. They no doubt affect the behaviors and perceptions of other patients and providers alike, and the general manner in which they play out in the public sphere speaks to present sociocultural attitudes. These attitudes are important to consider and critique. At this point in time, the attitude embodied by the free-market or consumerist view of respect for autonomy continues to threaten the ability of providers to place constraints on available options. In large part, this phenomenon appears to be a reaction to a sad history of uncontrolled and inappropriate paternalism. While today’s providers still exercise their right to present information as they see fit, a number of patients feel empowered to both go against recommendations and demand options that are not even presented. In all likelihood, there are numerous providers who simply concede that, in the current climate of health care ethics, they have a limited right to restrict patient autonomy. Consequently, patients run the risk of having inappropriate, futile, frequently expensive, and potentially harmful treatments delivered to them based on their sometimes ill-informed requests. This transformation of patient autonomy from a right to refuse unwanted treatment to a perceived right to demand begs several important questions. What are the goals of medicine? Is health care really a consumer industry? Is the freemarket choice represented by our current view of autonomy working? Are some patients being abandoned to their rights? I conclude that some element of paternalism must continue to exist for medicine to function as it should. This is premised on the view that “medicine is not neutral” (Agledahl, Førde, and Wifstad 2011, 3), that it can function only by virtue of having some paternalistic attitude toward patients and their interests. Given that most patients are not in a position to determine which options are best suited to their goals and values, providers must constrain and control the choices available at any given time. Without doing so, we run the risk of having a conception of patient autonomy that is fundamentally incompatible with the nature and goals of medicine. Moreover, the mere presence of paternalism should never amount to patients having unwanted treatment forced on them. Instead, the point of this argument is that patients are not in any position to require providers to provide or “supply” treatment. Patients’ role in the therapeutic relationship is to express their goals, values, and desires and to select the most appropriate option from among those that are being offered. Patients
and providers should be encouraged to discuss these issues as they enter into shared relationships to see if there is alignment. The simple upshot of this argument is that, rather than emphasizing consumerist autonomy over paternalism or vice versa, there needs to be recognition that decision-making in health care is more complex than wholesale adoption of either of these principles would suggest. In a strange way, it seems to be the case that these two divergent principles act as important checks and balances on each other. When one goes too far, the other evolves into another form to catch up to and constrain the other. Perhaps this is just the natural course of ethical principles and their relationship to the greater social attitudes that give them currency. In any case, it is important to monitor these trends as they develop. Without doing so, we run the risk of specific ethical principles becoming so entrenched that observers are reluctant to question their merits. Acknowledgments I would like to thank Dr. Thomas Foreman for reviewing this article and providing feedback. Competing Interests/Conflicts of Interest None
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Bioethical Inquiry Canadian Nursing Association. 2008. CAN code of ethics. Ottawa: Canadian Nurses Association. http://www2.cna-aiic.ca/CNA/ documents/pdf/publications/Code_of_Ethics_2008_e.pdf. Castiel, L.D. 2003. Self care and consumer health. Do we need a public health ethics? Journal of Epidemiology and Community Health 57(1): 5–6. CBC News. 2008. Winnipeg man at centre of end-of-life controversy dies. CBC News, June 25. http://www.cbc.ca/news/ health/story/2008/06/25/golubchuk.html. Cowart, D., and R. Burt. 1998. Confronting death: Who chooses, who controls? A dialogue between Dax Cowart and Robert Burt. The Hastings Center Report 28(1): 14–24. Cribb, R. 2012. Supreme Court decision on Hassan Rasouli will clarify end-of-life medical decisions. Toronto Star. Dec 10. http://www.thestar.com/news/canada/article/1300291– supreme-court-decision-on-hassan-rasouli-will-clarify-endof-life-medical-decisions. Diem, S.J., J.D. Lantos, and J.A. Tulsky. 1996. Cardiopulmonary resuscitation on television: Miracles and misinformation. The New England Journal of Medicine 334(24): 1578–1582. Elwyn, G., D. Frosch, R. Thomson, et al. 2012. Shared decision making: A model for clinical practice. Journal of General Internal Medicine 27(10): 1361–1367. Gillion, R. 2003. Ethics needs principles—four can encompass the rest—and respect for autonomy should be “first among equals. Journal of Medical Ethics 29(5): 307–312. Jennings, B. 1998. Autonomy and difference: The travails of liberalism in bioethics. In Bioethics and society: Constructing the ethical enterprise, ed. R. DeVries and J. Subedi, 258–269. Upper Saddle River, NJ: Prentice Hall. Kon, A.A. 2010. The shared decision-making continuum. The Journal of the American Medical Association 304(8): 903–904. Kukla, R. 2005. Conscientious autonomy: Displacing decisions in health care. The Hastings Center Report 35(2): 34–44. Lantos, J., A.M. Matlock, and D. Wendler. 2011. Clinician integrity and limits to patient autonomy. The Journal of the American Medical Association 305(5): 495–499. Lupton, D. 1997. Consumerism, reflexivity and the medical encounter. Social Science and Medicine 45(3): 373–381.
Lupton, D., C. Donaldson, and P. Lloyd. 1991. Caveat emptor or blissful ignorance? Patients and the consumerist ethos. Social Science and Medicine 33(5): 559–568. Mackenzie, C. 2008. Relational autonomy, normative authority and perfectionism. Journal of Social Philosophy 39(4): 512– 533. Medscape. 2012. Physicians’ top ethical dilemmas: Medscape 2012 survey results. http://www.medscape.com/features/ slideshow/public/ethics2012#2. Mehler Paperny, A. 2011. Doctors should have final word on pulling life support, lawyers to argue. The Globe and Mail. May 17. http://www.theglobeandmail.com/life/health/newhealth/health-news/doctors-should-have-final-word-onpulling-life-support-lawyers-to-argue/article2025900/. Milewa, T. 2009. Health care, consumerism and the politics of identity. In The new sociology of the health service, ed. J. Gabe and M. Calnan, 161–176. New York: Routledge. Minkoff, H. 2006. The ethics of cesarean section by choice. Seminars in Perinatology 30(5): 309–312. Newman, J., and E. Vidler. 2006. Discriminating customers, responsible patients, empowered users: Consumerism and the modernisation of health care. Journal of Social Policy 35(2): 193–209. Orentlicher, D. 1992. The illusion of patient choice in end-of-life decisions. The Journal of the American Medical Association 267(15): 2101–2102. Thanh Ha, T. 2011. Ontario’s “Baby Joseph” dies at home after sparking fierce end-of-life ethical debate. The Globe and Mail, September 28. http://www.theglobeandmail.com/life/ health-and-fitness/ontarios-baby-joseph-dies-at-home-aftersparking-fierce-end-of-life-ethical-debate/article4200459/. Wolpe, P.R. 1998. The triumph of autonomy in American medical ethics: A sociological view. In Bioethics and society: Constructing the ethical enterprise, ed. R. DeVries and J. Subedi, 38–59. Upper Saddle River, NJ: Prentice Hall. World Medical Association. 2008. World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. http://www.wma.net/en/ 30publications/10policies/b3/17c.pdf.
ORIGINAL RESEARCH
Market Liberalism in Health Care: A Dysfunctional View of Respecting “Consumer” Autonomy Michael A. Kekewich
Received: 18 December 2012 / Accepted: 24 April 2013 # Springer Science+Business Media Dordrecht 2013
Abstract The unfortunately vast history of paternalism in both medicine and clinical research has resulted in perpetually increasing respect for patient autonomy and free choice in Western health care systems. Beginning with the negative right to informed consent, the principle of respect for autonomy has for many patients evolved into a positive right to request treatments and expect accommodation. This evolution of patient autonomy has mirrored a more general social attitude of market liberalism where increasing numbers of patients have come to embody the role of the “consumer.” This paper explores this transformation and critiques the current way in which respect for patient autonomy is put into practice. Ultimately, this paper concludes that the consumer view of patient autonomy is dysfunctional. Moreover, this paper argues that, based on the inherent goals of medicine, some form of paternalism is required in any meaningfully therapeutic relationship. Keywords Autonomy . Paternalism . Liberalism . Consumerism . Freedom of choice
Introduction Sadly, a significant portion of 20th century medical history is littered with cases of patient abuse by paternalistic M. A. Kekewich (*) Department of Clinical and Organizational Ethics, The Ottawa Hospital, Civic Campus, 1053 Carling Avenue, Ottawa, ON K1Y 4E9, Canada e-mail: [email protected]
health care systems. Perhaps not surprisingly, this history of paternalism in both research and clinical care has resulted in a premium on matters of procedural justice—such as individual freedoms, rights, and responsibilities—rather than desired outcomes. In this climate, the right of patients to have their autonomy respected has ascended rapidly and without much hesitation, almost as if to compensate for the historical lack of status enjoyed by the concept. In a paper by Beauchamp, he describes this phenomenon as a “correction toward an autonomy model of patient care” (1995, 182). Accordingly, the right of patients to make decisions for themselves has gained increasing credibility and status. While those working in health care ethics seem to agree that there is no obvious hierarchy among the four principles of autonomy, beneficence, nonmaleficence, and justice made famous by Beauchamp and Childress (2009), the practical reality is that, in most instances, autonomy is given priority over other principles. According to Ranaan Gillion, respecting autonomy is “primus inter pares—first among equals—among the four principles” (2003, 310). In many respects, this bioethical liberalism is well justified. The rise of the universal human rights movement in the second half of the 20th century, along with the many injustices that have occurred in the medical context since then, has created an ideal moral market for rights and freedoms. In this context, conditions have been such that the view of individuals having the right to make autonomous decisions has become paramount, while the formerly paternalistic model has been rendered defunct. In fact, as Paul Root Wolpe notes, describing an act as paternalistic has become “a
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highly pejorative appellation in the present social climate” (1998, 45). Alternatively, the way in which respect for individual autonomy is demonstrated has continued to grow and evolve. Beginning as a negative right to informed consent (or refusal), it appears to have grown features of a positive right to request, reflecting the growth of a consumer or market liberalism model of medicine where individuals can exercise free choice and receive accommodation. Even the term “patient” seems to have gone out of vogue, as many health systems have adopted the term “client” or “consumer” as the most appropriate categorization of those seeking health care services in the modern world. In the context of the National Health Service (NHS) in the United Kingdom, Newman and Vidler (2006) have studied this phenomenon from a sociological perspective. They note that the view of patients as consumers is, in part, premised on the view that “people have become used to flexible, responsive, user-centered services delivered in the market-place and want the same when it comes to the NHS [or other health care systems]” (Newman and Vidler 2006, 197). As this view of health care becomes commonplace, an important question arises: Is this consumerist interpretation of patient autonomy a good thing? Does it even serve the interests of patients? From my own perspective, I conclude that the answer to either question is no. This article will argue against a consumerist view of patient autonomy and will suggest a more practical interpretation of the concept. I will also make an argument for limited paternalism and why this unpopular model is a necessary aspect of any therapeutic relationship. In fact, I submit that paternalism continues to exist quite evidently in the subtext of clinical practice without issue or concern. As I will argue, without some element of paternalism, the notion of autonomy quickly deteriorates into absurdity. Even Dax Cowart, one of the strongest advocates of patient autonomy, has asserted: “I’m willing to forgo some of my own autonomy in the interest of better decisions being made” (Cowart and Burt 1998, 24). This statement is profound in both its irony and its insight. Perhaps under certain circumstances, too much freedom is too much of a good thing. Perhaps, as Rebecca Kukla says, “patient autonomy is consistent with, and often even requires, the displacement of decisions away from the patient and into the hands of health professionals and institutions” (2005, 43). While there are countless
illustrations of bad paternalism and the rightful exercise of autonomy, the point remains that the right to exercise one’s autonomy does not exist in a vacuum and should not be unconstrained. Rather, it exists in balance with other important considerations, depending on the circumstance. In essence, the goal of this paper is to discuss this problem— what Bruce Jennings calls “the blindness of autonomy bioethics” (1998, 264)—and to endorse a more practical view of respect for autonomy. Moreover, although there is substantial literature on the challenges of consumerism in health care from a variety of perspectives (Lupton 1997; Lupton, Donaldson, and Lloyd 1991; Newman and Vidler 2006; Castiel 2003; Milewa 2009; Calnan 2010; Adams and de Bont 2007), there certainly appear to be a growing number of high-profile cases illustrating the ethical challenges associated with this model. It is my intention to reference some of these cases as evidence that the consumerist conception of patient autonomy has become ethically dysfunctional in both theory and practice.
The Evolution of Autonomy Perhaps the greatest evidence that respect for autonomy has ascended and remains atop the principlist understanding of ethical decision-making is evidenced by the abundance of laws, regulations, and codes of ethics that govern the practice of medicine today. Chief among these codifications are regulations around informed consent. A few examples can be illustrative. In Ontario, for example, the Health Care Consent Act (1996) enshrines the legal right of patients to decide for themselves and the obligations of substitute decision-makers to act in accordance with the wishes and values of incapable patients. In the context of research in Canada, the TriCouncil Policy Statement (TCPS2) highlights respect for persons as the first of three core principles to consider when conducting research (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada 2010). Similarly, the TCPS2 discusses requirements for informed consent at length, emphasizing the significance of patient autonomy as a primary consideration. Turning to professional codes of ethics, the Canadian Medical Association Code of Ethics draws attention to the right
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of capable patients to accept or reject medical treatment (Canadian Medical Association 2004), while the Canadian Nursing Association similarly emphasizes promoting and respecting informed decision-making (Canadian Nursing Association 2008). These codifications of autonomy represent significant progress and movement away from the disrespectful and inappropriate form of paternalism of past medical and research practices. At the same time, the sometimes single-minded focus on protecting the rights of capable patients has resulted in less emphasis on other ethical principles. Although beneficence, nonmaleficence, and justice remain salient considerations in everyday practice, it is clear that autonomy is the weightiest principle. In reference to this progression in Western bioethics, Wolpe has observed that: In fact … the four principles articulated by Beauchamp and Childress have not been—and can never be—given equal weight in American biomedical culture. For better or for worse, autonomy has emerged as the most powerful principle in American bioethics, and the basis of much theory and most regulation, and has become the “default” principle of applied principlism, the principle to be appealed to when principles conflict (Wolpe 1998, 43). According to a number of authors, the ascension of autonomy as a moral concept has mirrored the more general sociocultural liberalism that has become commonplace ideology in Western societies, particularly since the many atrocities of the Second World War (Agledahl, Førde, and Wifstad 2011; Jennings 1998; Wolpe 1998). This emphasis on individual rights and freedoms has resulted in patients having far more control over the care they receive and research they participate in. In many respects, this movement has been probably the most important progression in the history of medical ethics. However, the critical inquiry that gave rise to the autonomy movement requires that we ask whether we have stretched the concept too far. Perhaps one indication that the liberal interpretation of respecting patient autonomy has grown beyond its functional limits is its movement across the spectrum from a negative to a positive right. What started as an overly narrow and occurrent view of autonomy as the obligation to seek informed consent for treatment has
over time become a market-based right to request and expect accommodation. Informed consent, to be clear, is a primarily negative right. It is the right to receive information, to refuse unwelcome treatment, and to choose from a range of options made available to the patient. As a negative right, the purpose of informed consent is to protect patients from actions being done to them without their express and informed permission. This is the view of respect for patient autonomy enshrined in canonical documents such as the Declaration of Helsinki (World Medical Association 2008). In this model, autonomy is respected by seeking permission to provide certain treatments or interventions with the understanding that physicians are “still the translators and filterers of information to their patients” (Wolpe 1998, 52). However, while many patients are likely comfortable with their providers constructing the choices made available to them in this fashion, others are not. Evidently, a growing number of patients, or their representatives, are comfortable stepping out of the traditional role of recipient of care and stepping into the role of the consumer. In large part, this is because health care, like other customer-oriented services, has been “reformed by being subject to a free market model” (Lupton 1997, 373). Put nicely by Lupton: Those who have adopted this model of doctor– patient relations view doctors simply as suppliers of services. … It is assumed that consumers will benefit from a return to the free market because of increased competition, which will supposedly “weed out” inferior services and ensure optimal quality, consumer choice and price (1997, 373). Recent high-profile cases of providers refusing to provide requested care are both many and controversial. The Canadian cases of Samuel Golubchuk in Winnipeg and of “Baby Joseph” at London Health Sciences Centre have been illustrative of this consumerist movement. Most recently, the case of Hassan Rasouli at Sunnybrook Health Sciences Center in Toronto has brought fundamental questions around patient choice to the highest court in Canada for judgment (Cribb 2012; CBC News 2008; Mehler Paperny 2011; Thanh Ta 2011) In all of these recent cases, patients or their surrogates exercised their perceived right as autonomous consumers of health care services to
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demand certain interventions that providers felt were inappropriate, ineffective, or both. The difficulty with which providers refused to provide treatment in these three cases is also supportive of the notion that—at least according to many patients— respecting patient autonomy equates to delivering requested services. Furthermore, the legal battles that were spurred by these cases and others have in all likelihood resulted in providers feeling hesitant and apprehensive when refusing even the most unreasonable requests. In fact, a 2012 Medscape survey of the top 20 ethical dilemmas for physicians showed that 35 percent of doctors would provide a life-sustaining therapy they judged to be futile, while 41 percent said they would do the same depending on the circumstances. Only 24 percent of surveyed physicians said they would not provide such an intervention (Medscape 2012). These cases are indicative of a societal view of respect for patient autonomy as respect for consumer choice. Not unlike the consumer movement in general, the change of dynamics between patients and providers may be reflective of patients feeling decreased levels of trust and increased levels of skepticism when approaching providers. In this model, many patients may be comfortable challenging the professional authority of providers by empowering themselves (Newman and Vidler 2006; Adams and de Bont 2007). On this topic, Wolpe has observed that: The structural impediments to trust have resulted in a consumer orientation to medicine, and where caveat emptor reigns, the public will insist on good package labelling. In a world where medicine has become a good to be consumed and where patients are consumers to be wooed, informed consent becomes the disclosure of contents on the back of the box. Informed consent involves discussion of the nature of a procedure, its risks and benefits, and alternative treatments, and it is enacted through the modern ritual of free assent, the signing of a contract. The contract model reciprocally reinforces the primacy of autonomy by tying medicine to other ritualized signings in modern society—loans, rentals, licensing—where two parties are exercising their free right to exchange goods (Wolpe 1998, 51). Moreover, the increasing democratization of information through technology (Calnan 2010) has rendered complex information easier for consumers to both access and understand. Similarly, dissemination of information
through realistic television programming can act as a misguided form of patient education and empowerment. As an example, a 1996 New England Journal of Medicine article startlingly suggested that popular television shows such as ER, Chicago Hope, and Rescue 911 portrayed the rate of survival until discharge after cardiopulmonary resuscitation (CPR) to be as high as 100 percent, when in fact actual rates at the time of the study were closer to 30 percent (Diem, Lantos, and Tulsky 1996). Similarly, Castiel points out that, in the public health context, the Internet-based information used by patients to self-educate is of questionable quality and consistency (Castiel 2003). As a result of patients selfeducating in these ways, health care providers are at risk of being seen less as experts than “technicians, with no real ability to determine the manner in which their technical skills are applied” (Minkoff 2006, 310) and may become decreasingly successful in their attempts to filter and translate information according to their own professional judgment and expertise. In the context of this market-based view of respect for autonomy, there is no reason to believe that patients will not become even more comfortable approaching medicine like any other commodity. In a 2008 American College of Obstetricians and Gynecologists Committee on Ethics opinion paper on elective caesarean deliveries, for example, the physician authors succinctly summarize the concerns raised above: How should the physician respond to a patient who requests a specific surgical therapy without having an accepted medical indication? Should health care options be regarded in the same way as choice of cereal in the supermarket: the consumer makes a choice based on appearance, content, and cost, and the grocer takes the money and bags the cornflakes without providing any direction (American College of Obstetricians and Gynecologists 2008, 1)? For a growing number of patients and families, respect for autonomy has transformed from a system of patient protections to a system of patient entitlements that many “consumers” are dangerously attempting to make good on. As Bruce Jennings describes this phenomena, “[t]his is neither the liberalism of the Enlightenment nor the liberalism of the Reformation; it is the liberalism of the marketplace” (1998, 268). Is the market liberalist interpretation of respect for patient autonomy a good thing? Does it benefit patients in the way the concept of autonomy should?
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The Evolution of Paternalism While this consumer model of patient autonomy has gained significant traction in Western health care, paternalism has come to embody a form of ethically shady behavior. Cases like Rasouli’s clearly illustrate the challenges met by health care providers refusing to provide requested care and the backlash that can ensue as a result. Based on these cases and others, one is led to believe that explicit refusals to provide inappropriate care, as well as explicit discussions around withdrawing care, are less and less likely to occur. But does paternalistic behavior continue to exist in more subtle forms? If so, is it justifiable? I submit that paternalism has evolved alongside our understanding of autonomy and continues to exist by virtue of what we might call the inherent purpose of medicine. First, the fact remains that health care providers are still “better placed to make good judgments about various important health care choices” (Kukla 2005, 42). In this sense, while patients are best positioned to know what they desire for themselves, providers are best positioned to know which options are available from which to choose in order to meet those desires. It would be impossible for the vast majority of patients to receive anything close to appropriate care if some form of paternalism did not continue to exist. In other words, whether we recognize this or not, providers are routinely limiting and contextualizing the choices made available to patients. Providers act paternalistically—in the basic sense of the word—by constraining “the range of choices over which a patient may exercise autonomy” (Lantos, Matlock, and Wendler 2011, 497). While it may be the case that the current market liberalism of health care systems allows for patients to choose their health care as they would any other good, the reality remains that “options are constructed” (Agledahl, Førde, and Wifstad 2011, 2) by health care providers in one form or another. This construction of choice happens in a variety of ways, all less explicitly paternalistic than was the case half a century ago. Perhaps most evidently, it occurs in the manner in which information is communicated and contextualized. As quoted from Paul Root Wolpe earlier, providers remain “translators and filterers of information to their patients” (1998, 52). While in most circumstances they do not have the ability to explicitly choose for the patient, providers do have the ability to choose how information will be presented. Consider
presentation of CPR. A physician might simply ask a patient: Do you want CPR in the event that you arrest? Presented in this way, the provider is creating a completely neutral context for the patient to act from. Alternatively, another physician, not at all believing that CPR is in the patient’s best interest, might draw attention to all the reasons why CPR is a downright ridiculous idea. By doing so, the provider creates a non-valueneutral context that the patient operates in, and by choosing the intervention the patient is in the now awkward position of deciding contrary to the provider’s recommendations. Depending on how strongly a physician advocates for or against a certain intervention and what language he or she uses, one might even argue that a patient’s freedom of choice is effectively eliminated because making a decision to the contrary would seem utterly absurd. Even further, as seen in the Canadian cases of Golubchuk, Rasouli, and “Baby Joseph,” a physician might ultimately consider refusing to provide an intervention altogether by not even offering it (Cribb 2012; CBC News 2008; Mehler Paperny 2011; Thanh Ta 2011). By passing judgment in the manner described above, a provider is normatively framing the context within which a patient must choose. With the resuscitation example, the provider is aware of the extreme risks and futility of CPR and persuades the patient, perhaps even desperately, to choose another option. While a patient may nonetheless choose to have full resuscitation efforts performed, the physician has paternalistically—and justifiably—attempted to direct the choice in question through his or her status as an expert. It is also important to note that this subtle control of patient choice is rather effective. David Orentlicher writes that: Studies of decision making for health care problems … have consistently demonstrated that people’s choices depend in part on the way that information is presented to them. … [W]hen patients are asked to make treatment choices for advance directives, they are more likely to choose treatment when the treatment is described in a positive way. In one study, patients chose treatment 30 % of the time when it was characterized in a positive way but only 12 % of the time when it was characterized negatively (1992, 2102). With this new form of paternalism, providers exercise persuasion and dissuasion—rather than imposition—to “steer patients’ choice” (Agledahl, Førde, and Wifstad
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2011, 3). Depending on the situation and how firmly a provider feels about an intervention, he or she can ultimately “recommend, offer, acquiesce, [or] refuse” (Minkoff 2006, 312), thus constraining the choices in question. While perhaps not as overt a form as once existed in medicine, this construction of appropriate options is nonetheless a common and justifiable form of paternalism. This soft paternalism is justifiable because, as many have noted, the market liberalism model of autonomy that has become commonplace in Western society fails to meaningfully protect patient interests in the way the concept should. Put succinctly by Agledahl et al., “the presence of a choice does not in itself ensure empowerment” (Agledahl, Førde, and Wifstad 2011, 3). In the context of health care, choices are complex, multifaceted, and influenced by a range of factors, including the judgments of those who provide the care. This reality is explained by Kukla, who discusses our current view of patient autonomy as being expressed by specific choices: Underwriting the standard bioethics picture is a strong assumption that the relevant “unit” of autonomy (or lack thereof) is the punctate decision—a decision made in response to a discrete choice that can be understood in isolation from the rest of a patient’s health care. A particular act or choice meets the standards of autonomy if it has its source in the deliberations of a properly informed self (Kukla 2005, 35, emphasis original). Kukla argues that this view of autonomy as occurrent patient choice is too narrow and does not meaningfully protect or serve patients. Because every patient’s autonomous actions exist within a “larger pattern of normative relations between the patient and her health practice … or self-management and her interactions with health professionals” (Kukla 2005, 41), it does not make sense to speak of autonomy as a narrow and decontextualized form of free-market choice. In reality, Kukla argues, laypeople are unable to make responsible choices for themselves without deferring authority to providers who are better positioned than they to make judgments and construct options (Kukla 2005). In this sense, the consumerist view of autonomy does not accurately reflect the reality or purpose of medicine. Most providers construct choices, create normative routines, constrain available choices, and steer
patients in a desired direction. This is because—contrary to the consumer understanding of respect for patient autonomy—medicine does not fit the profile of other commercial endeavors in which consumers are supplied with the goods they choose. Put differently, “medicine is not neutral, but is aimed at helping patients” (Agledahl, Førde, and Wifstad 2011, 3). This inherent goal cannot be accomplished by simply providing a range of choices and leaving patients to decide for themselves. According to Lupton, “[d]ependency is a central feature of the illness experience and the medical encounter and serves to work against the full taking up of a consumer approach” (Lupton 1997, 379). In part, this dependency is likely a factor of the “asymmetry of information between supplier (doctor) and consumer (patient)” (Lupton, Donaldson, and Lloyd 1991, 560). Thus, as a result of health care being a non-value-neutral enterprise, Kukla concludes “that either autonomy is not routinely worth protecting in health care contexts or autonomy is not the same as self-determination” (2005, 38). Based on these criticisms of consumer autonomy and our “tendency to treat moments of decision as the loci of ethical importance” when promoting it (Kukla 2005, 43), one is left to question what role autonomy should play in health care. From my perspective, I perceive that the formerly paternalistic and currently growing consumer-centric models of medicine are at opposite ends of the same spectrum, while also sharing a common dysfunction. In both models, there is little room for development of a meaningful therapeutic relationship between patient and provider. In the overly paternalistic model, providers showed little to no respect for the values, goals, and desires of patients. Similarly, in the current model of patient autonomy as a form of free-market consumerism, increasing numbers of patients feel empowered to place less importance on the expertise and judgments of providers. Unlike the previous model of informed consent as a negative right, the “positive-rights approach to the consent process assumes that, even as a lay person, each patient is capable of identifying medically reasonable alternatives and that physicians are obligated to carry out patients’ request simply because they are patients’ request” (Minkoff 2006, 310). Clearly, this is not the case. Similarly, Lupton argues that “the consumerist approach may be counterproductive, undermining the very trust and faith that is central to the healing and comfort that very ill people desperately seek in the medical encounter” (1997, 380). At the extremities of
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each discourse a lack of respect for the role of the other is evident. Such extreme views ignore the fact that the rights of each party are not mutually exclusive. In many ways, the swing from one end to the other is an unfortunate phenomenon. Those who do the difficult job of providing health care services should, as Kukla says, acknowledge the authoritative role they properly play in inculcating patients into normatively contoured health practices, and … need to claim and examine this role. … [T]hey need to find ways to use it to foster a conscientious relationship to appropriate health care practices (Kukla 2005, 43, emphasis original). At the same time, as well as having a basic right to refuse unwanted care, patients should have the right to choose a provider whom they feel aligns with their values and goals. In this ideal middle ground between paternalism and autonomy, patient and provider would work together with neither having an exclusive right over the other, except the right to exit the relationship if it ceases to function properly. In this model, providers retain the right to constrain choices in accordance with their judgment, and patients exercise something akin to what Kukla calls “conscientious autonomy” (2005, 38). This conscientious autonomy is exercised when patients uphold and communicate “principles, practices, goals, values or regimes that we take as our own normative standards” through self-reflection (Kukla 2005, 38). In this respect, patients and providers form a balanced relationship where each party’s role is transparent and respected. This proposed model of decision-making is not novel. There has been much discussion of “shared decisionmaking” (Kon 2010, 903) and its benefits. This model, which can take a variety of forms depending on the circumstances, has been formally supported by a number of prominent colleges and medical associations (Kon 2010, 903). In part, this model is premised on the notion of “relational autonomy” (Elwyn et al. 2012, 1). According to Catriona Mackenzie, this relational view rejects the individualist assumptions about agency implicit in mainstream conceptions of autonomy within bioethics, political philosophy, and moral psychology. Relational views are premised on a socially embedded conception of agency and argue that an adequate theory of autonomy must be
based on recognition of the ways in which, as agents, our practical identities and value commitments are constituted in and by our interpersonal relationships and social environments (2008, 519, emphasis original). This is similar to the idea of conscientious autonomy proposed by Kukla. In both theories—relational and conscientious autonomy—the mere presence of selfdetermination and free choice does not necessarily constitute meaningful exercise of autonomy. Instead, one’s autonomy exists in relation to a wide variety of other factors, including the relationship with the provider with whom one is interacting. In both of these models, patients do not exercise complete control; they are participants in a more complex, multifaceted, and shared decision-making process.
Conclusion Before concluding, some limitations to this argument should be noted and dealt with. This author’s experience of contemporary health care is limited to the Canadian health care system (Ontario, more specifically). This argument presupposes that circumstances in this part of the world are not entirely different than those in other Western health care jurisdictions. That being said, the literature certainly suggests that circumstances are very similar elsewhere. Second, this argument discusses issues that probably do not apply to the majority of patients. Clearly, a good number of patients enter into healthy and functional therapeutic relationships with few, if no, issues. A 1991 Australian study conducted by Lupton, Donaldson, and Lloyd, for example, showed that most patients did not behave “consumeristically” when approaching their choice of provider (1991, 567). Similarly, Timothy Milewa notes that more recent surveys specific to the National Health Service in the United Kingdom have indicated that approximately 80 percent of patients had complete trust in their providers (2009, 167). This argument is admittedly directed toward a minority of cases that appear to be materializing with increasing frequency and controversy. However, I would argue that the actual number of cases to which this argument applies is immaterial. Although the existing cases represent a minority of the overall patient population, they are incredibly resource-intensive, highly publicized, and speak to foundational questions in
Bioethical Inquiry
health care ethics. They no doubt affect the behaviors and perceptions of other patients and providers alike, and the general manner in which they play out in the public sphere speaks to present sociocultural attitudes. These attitudes are important to consider and critique. At this point in time, the attitude embodied by the free-market or consumerist view of respect for autonomy continues to threaten the ability of providers to place constraints on available options. In large part, this phenomenon appears to be a reaction to a sad history of uncontrolled and inappropriate paternalism. While today’s providers still exercise their right to present information as they see fit, a number of patients feel empowered to both go against recommendations and demand options that are not even presented. In all likelihood, there are numerous providers who simply concede that, in the current climate of health care ethics, they have a limited right to restrict patient autonomy. Consequently, patients run the risk of having inappropriate, futile, frequently expensive, and potentially harmful treatments delivered to them based on their sometimes ill-informed requests. This transformation of patient autonomy from a right to refuse unwanted treatment to a perceived right to demand begs several important questions. What are the goals of medicine? Is health care really a consumer industry? Is the freemarket choice represented by our current view of autonomy working? Are some patients being abandoned to their rights? I conclude that some element of paternalism must continue to exist for medicine to function as it should. This is premised on the view that “medicine is not neutral” (Agledahl, Førde, and Wifstad 2011, 3), that it can function only by virtue of having some paternalistic attitude toward patients and their interests. Given that most patients are not in a position to determine which options are best suited to their goals and values, providers must constrain and control the choices available at any given time. Without doing so, we run the risk of having a conception of patient autonomy that is fundamentally incompatible with the nature and goals of medicine. Moreover, the mere presence of paternalism should never amount to patients having unwanted treatment forced on them. Instead, the point of this argument is that patients are not in any position to require providers to provide or “supply” treatment. Patients’ role in the therapeutic relationship is to express their goals, values, and desires and to select the most appropriate option from among those that are being offered. Patients
and providers should be encouraged to discuss these issues as they enter into shared relationships to see if there is alignment. The simple upshot of this argument is that, rather than emphasizing consumerist autonomy over paternalism or vice versa, there needs to be recognition that decision-making in health care is more complex than wholesale adoption of either of these principles would suggest. In a strange way, it seems to be the case that these two divergent principles act as important checks and balances on each other. When one goes too far, the other evolves into another form to catch up to and constrain the other. Perhaps this is just the natural course of ethical principles and their relationship to the greater social attitudes that give them currency. In any case, it is important to monitor these trends as they develop. Without doing so, we run the risk of specific ethical principles becoming so entrenched that observers are reluctant to question their merits. Acknowledgments I would like to thank Dr. Thomas Foreman for reviewing this article and providing feedback. Competing Interests/Conflicts of Interest None
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