Promoting Informed Choice: Transforming Health Care To Dispense Knowledge for Decision Making

Patients need good information to make good choices, but supplying that needed information is not something that physicians and hospitals do well. Among the great ironies of the modern health care system is how poorly it delivers knowledge at a time when society enjoys unprecedented access to information. Americans can obtain so many facts with the click of a button yet must struggle to gather well-tailored information about their clinical options or ways to care for their own health. Consumers encounter a system designed to deliver the material commodities of care (such as tests and drugs) but not knowledge. According to the results of a Commonwealth Fund survey published in 2004 (1), the frequency (33%) with which sick patients in the United States leave the physician's office without getting important questions answered is the highest among the 5 countries studied (the others being Australia, Canada, New Zealand, and the United Kingdom). The mounting need for consumer information is, in many ways, a contemporary phenomenon. Generally speaking, patients of previous generations merely needed to decide whether to seek medical attention and whether to follow their physician's advice; it was not their place to decide which options were best. Physicians tended to fill a paternalistic role, maintaining exclusive purview over medical knowledge. The expectation of both providers and consumers of health care was that the physician knew what was best (2). Today, roles and expectations for information have shifted, giving way to the newer model of informed choice and active patient participation in care (3). This dynamic is placing new demands on both the provider and the health care system, perhaps too quickly for either entity to respond. In this article, we outline patients' expanding needs for decision support and the challenges clinicians and health systems face in meeting those needs. We then explore 2 categories of solutions to facilitate informed choice: expanded information resources for decision support and the coupling of information with decision counseling. We conclude that no current model can succeed without a major transformation in system design to make knowledge a key commodity accessible to all participants. The Patient's Expanding Role in Making Decisions For millions of Americans who lack health insurance or a regular clinicianproblems that disproportionately plague the poor and minoritiesinformed choice is a marginal concern eclipsed by the larger priority of gaining access to care (4). However, among those with established access (and even for those without), deeper engagement in decision making is increasing for several reasons: increased patient autonomy, broader access to information, expanding clinical options, rising costs, ascendancy of chronic illness, complex tradeoffs, and greater accommodation of personal values. Increased Patient Autonomy The culture of consumerism in the United States encourages the public to exercise control over life choices (5). This trend and the ethical imperative to respect patient autonomy have shifted the locus of control in the clinicianpatient relationship toward a patient-centered model that eschews paternalism and invites patients to engage actively in the decision-making process (6, 7). Broader Access to Information This increased desire for control arises in an era of 24-hour news, direct-to-consumer advertising, search engines, and high-speed Internet connectivity. Patients have grown accustomed to accessing information and are acquiring the tools to research clinical options and review personal medical data. The physician is no longer the sole purveyor of medical knowledge (8). Expanding Clinical Options Advances in medications and biotechnology have yielded a complex menu of choices for conditions that once had a single standard of care. The sophistication of these procedures gives patients the added task of processing scientific nomenclature, data, and technological concepts, a special challenge for those patients with literacy, numeracy, or language barriers (9-12). Rising Costs Consumers must consider the economic implications of clinical choices as they encounter higher insurance copayments and deductibles (13). Medical savings accounts and defined contribution plans are promoted on the premise that patients will pay closer attention the cost of health care services. Ascendancy of Chronic Illness Active engagement is vital for the growing number of patients with chronic diseases (14). Self-management, a centerpiece of effective long-term care, requires greater access to information (15, 16). Complex Tradeoffs Patients face a more difficult task in weighing benefits and harms (17). Yesterday's patients confronted tradeoffs with less difficulty by relying on the intuitive judgment of clinicians. Today's patients expect clinicians to help them to understand sophisticated probability data used to weigh the tradeoffs of a therapeutic option, such as the number of patients per 1000 who benefit from an intervention versus the number who are harmed (18, 19). Greater Accommodation of Personal Values For the growing number of decisions for which the best choice depends on personal preferences (20), patients must consider how procedures will affect their lives and must cope with the scientific uncertainties surrounding outcomes. For this kind of analysis, patients require informed decision making (21), which involves a level of counseling that goes beyond the offhand advice that clinicians conventionally offer in busy practice (22). On topics ranging from screening tests (23) to surgery and end-of-life care (24-27), patients cannot properly weigh the benefits and harms without examining the evidence in light of personal values (28). To do so, they require the more substantive support offered by informed decision making and shared decision making (19, 29-32), as shown in Table 1. The intensity of informed decision making must be calibrated to the type of clinical decision, as others have elucidated (29). Table 1. Components of Informed Decision Making Promoting informed decision making is motivated not only by moral arguments (that beneficence requires knowledge of what the patient wants) but also by economic and legal considerations (33). The high costs taxing the U.S. health care system stem largely from costly procedures that often have weak supporting evidence; some of these procedures might be deferred if patients knew more about possible complications and other tradeoffs (34). A notable example is intensive care and other interventions at the end of life, which are often inconsistent with the preferences of patients (35, 36). Teno and associates (36) reported that 60% of seriously ill Medicare beneficiaries preferred comfort care over aggressive interventions, but only 41% of these patients believed their care reflected this preference. Unwanted, costly interventions might become less common if they were preceded by well-informed discussions with patients and loved ones. Challenges to Informed Decision Making Even when information is readily available, the public faces difficulties with informed decision making (37-39). Although people generally want to be educated about health care options and appreciate having the freedom to participate in decision making, not everyone wants this role (40-43). Patients face cognitive and emotional challenges in vetting complex decisions (19). Minorities and disenfranchised patients often arrive at the clinical encounter with less knowledge about certain topics (44) and are less likely to be actively engaged in decision making (45-47). Clinicians also face barriers to implementing informed decision making (48). The busy pace of patient care leaves little time for long discussions and detailed presentations of options and statistics. Few clinicians can quote accurate data or divorce themselves from personal biases to ensure a balanced presentation of options. Many lack the time or aptitude to consider patients' risk profiles, to predict preferences, or to help patients apply these values to select the best personal choice (49-52). The best approach to informed decision making varies by patient, requiring clinicians to adjust to the individual. Low literacy and cultural barriers intensify the challenges in communicating facts and eliciting preferences (53, 54). Clinicians, caught in a struggle for economic survival, receive little reimbursement for this effort. The health care system as a whole faces its own difficulties in implementing informed decision making because it is not well designed for this task. Health care has been slow to respond to society's appetite for communication and has not reorganized itself to provide high-quality information about options and outcomes. The system is not equipped to inform patients in a manner that is timely, easily understood, and jargon-free, nor does it encourage people to consider consequences, to ask questions, to clarify values, and to express preferences. Potential Solutions and Their Limitations Thus, the problem at hand is an expanding need to help patients navigate complex decisions set against the limitations of the health care system in delivering the salient facts and guidance. We explore 2 potential solutions: information resources for decision support, and the coupling of these tools with decision counseling. Information Resources for Decision Support The Information Superhighway Much of the information that patients require is available amid the vast resources of the Internet and other media. The Internet is especially helpful because of its accessibility, convenience, and capability for interactive tailoring of information. However, the quality of Web sites and chat-room information is suspect (55), and patients do not always recognize embedded advocacy and sponsor biases. The sheer volume of available information is itself a problem, making it difficult for patie