Does Informing Patients of Choice Support Patient Choice?
by Margaret Holmes-Rovner, Ph.D.
Patient choice is gaining popularity among policy makers as a tool of healthcare reform. Before embracing patient choice, however, we must critically analyze its effectiveness as a vehicle for such reform. Can increased patient choice succeed as a health care reform strategy? That is, what are the drivers of patient choice, and what are the likely outcomes in producing better health and expanding healthcare for more people? Further, does increased patient choice support patient autonomy? Based on recent research in the psychology of choice, I argue that, by itself, giving patients increased choice supports neither health policy reform nor patient autonomy. In fact, I claim that both rational reform and patient autonomy may instead be enhanced by less choice. The notion of “shared decision-making” affirms that healthcare professionals and patients will engage equally in the decision making process, though they may have different roles and perspectives. I posit that for true sharing to occur, choices presented to patients should include analyses that summarize the evidence for and against competing choices and should also identify the “best” choice from an individual utility maximizing standpoint.
I make this argument in the context of a concrete set of tools that are designed to support evidence-based patient choice. These tools are patient education materials frequently called “patient decision supports,” including booklets, internet sites, or videos designed to support individual patients making real-time decisions about their own health care. An example designed to help patients decide about treatment for early stage prostate cancer can be found at www.prostatecancer decision.org. Such “decision support tools” and “decision aids” are designed to summarize the evidence for and against each treatment option, including watchful waiting (no treatment), and to encourage patients to engage in the process of shared decision-making with their personal health care providers. Developers and users of these tools have recently established a set of standards designed to insure that the evidence presented gives a balanced view of each option--to inform patients rather than to persuade them to make a particular treatment choice. Using a Modified Delphi approach, a large group of international experts (IPDAS consensus group) recently formulated a set of standards for presentation of data about choices presented in a decision aid. The patient decision aid:
Conspicuously absent from this list is what the “best” answer is: what an individual utility maximizing model would suggest is the “best” answer for an individual with certain risks and what a population-relevant technology assessment would say the “best” answer is for a population offered the options being considered. In the shared decision-making and decision support movement, we have shied away from presenting a rational “best” choice. Population-relevant answers probably are not offered because decision supports are largely designed to help individuals. At the individual level, there are two reasons for not revealing a “best” answer. One is the belief that patients should always have the right to be “irrational” if they are fully informed. The other is that measurement error in model construction and in patient value elicitation is simply too large to support recommending specific choices as being the best for a particular patient. Health care professionals for well-intentioned reasons often do not present recommendations resulting from a technology assessment of information designed to directly aid patients in making decisions about their own health choices. However, I argue that in doing so they may ultimately defeat the very objectives they mean to endorse, both in terms of supporting healthcare reform and supporting shared decision-making and patient autonomy.
Does increased patient choice serve the interests of healthcare reform?
A two-fold motivating factor for patient choice in healthcare reform is to decrease cost and utilization of health services while simultaneously pleasing the public by offering more control over health care. The assumption underlying this approach is what Wennberg has called the “rational agency” view of the patient role. Under this assumption, the fee-for-service system of paying providers for each service performed may perversely drive providers to act in their economic self-interest by performing interventions that are of marginal benefit to patients or even unnecessary. This theory suggests that patients’ self-interest is different from that of providers, and that deliberation will put the patient’s interest first. Undergoing medical tests and procedures is not always in the best interests of patients, so patients should accept only those that are necessary (or desirable) for their health. Tests and procedures have attendant discomfort, risk, and cost. The expected result under these assumptions is that demand for health services will decrease. Increased patient choice, therefore, will rationalize the system. Indeed, patient choice is driven by an emancipatory impulse that presumes that patients can be liberated from the old oppressive, paternalistic system by sharing in health care decision-making. Freire’s work in education and early bioethics scholarship (for example, see Katz), as well as other critical 20 th century social theory, provide intellectual support for the notion of liberation through choice.
Let’s now turn to the results of shared decision-making interventions in the use of medical services. The evidence to date is that patient involvement in decision-making has decreased demand in only a few clinical conditions, such as the use of hysterectomy, screening and treatment for prostate cancer, and the choice between mastectomy and breast conserving treatment (Whelan et al.). These are informative, if unusual, examples. Prostate cancer is a unique example where the perceived harms of treatment occur in the face of no improvement in survival. However, when provided with evidence-based information for many other clinical problems, patients often make the same decisions their doctors would make without patient involvement. Why is this so? Clearly one answer is that patients trust their doctors.
Additional social and commercial forces drive patient choice to increased health care utilization. As a culture, we appear to want “bigger, better, more,” and we want it faster and more efficiently. Contemporary patients are most likely to have higher demands for perceived quality and for new technology. An emerging issue for the new breed of “patients as consumers” is the increase in physicians feeling the need to persuade patients to discontinue care they judge to be futile. Since the 1950s, communication science has devoted itself to advertising that encourages us to buy more products. In health communication, the focus has been on effective health campaigns, meaning getting more people to attend health screenings and to support other public health campaigns. Responding to the twin imperatives of technology and screening campaigns, health media consistently tout “medical breakthroughs.” These forces to “do more” promise to counteract potential decreases in use of medical technologies produced by providing evidence-based decision tools to patients, especially if the choices are presented as a problem of shopping with all options paid for.
Does increased patient choice serve patient autonomy?
I will leave aside questions of whether patients want to be independent in their decision-making, and roles of patients and providers in making health care choices. These questions have been well laid out by Quill and Brody, and by Schneider. When patients wish to share in decision-making with their providers through decision support tools, the question then becomes, “How much choice and what kinds of choices assist in supporting autonomy?” Quill and Brody argue that when physicians withhold their guidance they fail to use their attendant power appropriately. Equally, I believe the same argument holds when preparers of decision supports fail to display the best choices to reach particular goals. This reluctance to provide a weighted evaluation of options reflects a misunderstanding as to the moral requirements of respecting patient autonomy, and fails as well to take account of contemporary research on the psychology of choice.
A helpful approach to the autonomy problem is the “enhanced autonomy” model proposed by Quill and Brody. They reject the independent choice model because it reflects a limited conceptualization of autonomy. Instead, they propose a dialogue in which physician and patient aim to influence each other and which allows the patient to fully appreciate the medical possibilities. When the decision-maker (patient) has limited competence or information and the physician does not offer guidance, the patient cannot then benefit from the available expertise and support. Systematically laying out the pros and cons of each choice, as is done in good decision aids, is an important start. However, people have limited capacity to process information; recent research has amply demonstrated that the more choices we are asked to process, the less well we are able to do so. Furthermore, people become overwhelmed and are unable to choose at all when choices proliferate. Providing patients with the analytically “best” choice and the reasons for it makes the decision-making process simpler for patients while still allowing them to critically reflect on their values, goals, and preferences--that is, allowing them to make an autonomous decision. While it can be argued that this strategy simply substitutes the tyranny of expert science for the tyranny of expert physicians, I would point out that the flip side of this argument is that either form of guidance can be used well. To withhold either advisory method on the assumption that it might be influential is the worst form of paternalism.
The Paradox of Choice and Why More is Less
In his recent book The Paradox of Choice, Barry Schwartz summarizes the literature on the psychology of choice arguing that the “culture of abundance robs us of satisfaction.” While his main intent is to empirically show that increased money and consumer goods in past half century have not brought happiness in the United States, his logic applies also to healthcare decision-making. In presenting treatment or screening options, the present state-of-the-art decision supports only provide a list of pros and cons for each choice. This list is helpful only as long as patients can go on to the next step to see their own appropriate logical best choice. Unfortunately however, the psychological evidence suggests that as the number of choices increases, decision-making requires more effort, mistakes in inference are more likely, and the burden of information overload leaves people prime candidates for regret and low satisfaction with their decision. As Schwartz points out, as the number of types of jams and jellies available in stores, increases, the less likely a consumer is to be able to make a choice.
Decision supports/aids are balanced, careful presentations of each option. However, they may work well only for those whom Herbert Simon and others describe as “maximizers”--people who want to know every detail of every option to make sure they make the objective (read rational) best choice. Providing the best choice from rational decision-analytic, cost effectiveness, and other technology assessment perspectives is one way of grouping options to simplify the data to answer a question. For example, “Which treatment is likely to let you live longest? If all the treatments are the same, what then are the differential side effects of each?” Or if cure is the objective, the decision aid can answer the question, “Which treatment is most likely to result in a cure? How much more likely, and with what side effects?” Withholding these answers is likely to force a patient to put her energy into trying to figure them out independently, rather than into consulting both the physician and the science to make an autonomous choice.
References
Freire, P. 1970. Pedagogy of the oppressed. New York: The Continuum International Publ.
Holmes-Rovner, M, D Rovner, J Wei , A Fagerlin, and S Stableford. 2003. Making the choice: Deciding what to do about early stage prostate cancer. Publication of the Michigan Cancer Consor- tium. September. Also available as an audio tape and CD. www.prostatecancerdecision.org. Last accessed 3/06/2006.
Holmes-Rovner, M, S Stableford, A Fagerlin, JR Wei, RL Dunn, J Ohene-Frempong J, K Kelly-
Blake, and DR Rovner. 2005. Evidence-based patient choice: A prostate cancer decision aid in plain language. BMC Medical Informatics and Decision Making , 5: 16-27.
IPDAS consensus group report. www.ipdas.ohri.ca. Last accessed 3/06/06.
Katz, Jay. 1984. The silent world of doctor and patient. Baltimore: Johns Hopkins University Press.
Quill, TE, and H. Brody. 1996. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Ann Intern Med 125(9): 763-769.Schwartz, B. 2004. The paradox of choice: Why more is less. New York: HarperCollins.
Simon, H. 1957. Models of man, social and rational. New York: Wiley.
Wennberg JE. 1988. Improving the medical decision-making process. Health Affairs Spring; 7(1): 99-106.
Whelan, T, M Levine, A Willan, A Gafni, K Sanders, D Mirsky, S Chambers, MA O'Brien M, S Reid, and S Dubois. 2004. Effect of a decision aid on knowledge and treatment decision making for breast cancer surgery: a randomized trial. JAMA 292(4):435-41.