Public Health Patient Decision Making
by
Jeffrey K. Belkora
  • LAST REVIEWED: 15 June 2015
  • LAST MODIFIED: 23 March 2012
  • DOI: 10.1093/obo/9780199756797-0011

Introduction

Patients historically deferred to physicians in a health crisis, even after Western civilization embraced individual autonomy and the right to self-determination in other, nonmedical areas of life. Physicians perpetuated this paternalism while embracing a principle of beneficence, meaning that they pledged to act in the interest of their patients. However, for patients, delegating decisions to physicians has always presented the agency problem: Those acting on your behalf may not act in your interest, even when they intend to. All people feel differently about the timing, likelihood, and value of different events or outcomes, and may act on these feelings and perceptions unconsciously. Some patient advocates have concluded that patients must assert their autonomy and behave as consumers. However, autonomy in a health crisis is a burdensome expectation because patients cannot make and implement most medical decisions alone. Therefore, many patient advocates, especially in the Western world, promote a model that frames patients as requiring assistance to exercise their legal right to autonomy or self-determination. At one extreme, patients may request or require so much assistance that they are essentially delegating the decision to a physician. This can look like old-style paternalism but differs in its starting point, as the patient, not the physician, is the ultimate decision maker. Others may require or request so little assistance that they are essentially deciding unilaterally. Most patients, especially in the West, place themselves in the middle of that spectrum, wishing to collaborate and share the decision making with their physicians. This has led to the emergence of a subfield within medical decision making focused on the provision of decision support to patients. Decision support promotes critical reflection within and between patients, their family or caregivers, and health care professionals. Critical reflection is a process in which people think, talk, and write about how to improve their situation. In a family health crisis, to engage in productive critical reflection, patients may need assistance formulating questions and absorbing, understanding, and acting on health-related information and advice. This annotated bibliography presents some key resources for learning about these dimensions of patient-oriented decision support. It focuses on prescriptive approaches to improving real-world decision making through critical reflection. This is in contrast to normative decision science, which outlines idealized forms of decision making, and descriptive decision science, which describes how human beings deviate from such norms.

General Overviews

We first list sources that document the spectrum ranging from paternalism to consumerism and the cultural shift, in the United States at least, away from paternalism. Barnard 1985 describes how patient expectations of physicians are bound up in complex attitudes stemming in part from the historical experience of people approaching shamans or priests for healing. With the emergence of medicine as an art and then science, patients transferred their faith and hope to doctors and yielded willingly to their paternalistic authority. Parsons 1951 relates how patients, their social circles, and physicians viewed each other’s roles and tasks. Parsons describes the other side of the pastoral coin described by Barnard 1985: the patient as sheep to the doctor’s shepherd. But the self-help and consumer revolutions, particularly in the 1960s, had an impact on patient–physician relations. Emanuel and Emanuel 1992 characterizes four modern models of patient–physician relations: paternalistic, deliberative, interpretive, and consumeristic. We still carry the cultural baggage of the sick role in Western societies, but other bargains are being struck, one of them involving the mutual expectations of information-seeking patients and their physicians. Two US surveys, Levinson, et al. 2005 and Zikmund-Fisher, et al. 2010, show that the proportion of patients wishing to delegate decisions to their physicians fell from 52 percent to 20 percent within just a few years.

  • Barnard, David. 1985. The physician as priest, revisited. Journal of Religion & Health 24.4: 272–286.

    DOI: 10.1007/BF01533009Save Citation »Export Citation »E-mail Citation »

    Even as Western societies move beyond paternalism, patient advocates may find value in embracing two aspects of pastoral care: the ministerial and the prophetic. “The ministerial role is to serve; the prophetic role is to challenge” (p. 282). While physicians should embrace parts of the ministerial role, patients must also look to others, including peers and professionals, for the comfort and challenge that accompanies humane critical reflection.

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    • Emanuel, Ezekiel J., and Linda L. Emanuel. 1992. Four models of the physician–patient relationship. Journal of the American Medical Association 267.16: 2221–2226.

      DOI: 10.1001/jama.1992.03480160079038Save Citation »Export Citation »E-mail Citation »

      In the interpretive model, physicians seek treatment strategies that address stated patient priorities. In the deliberative model, physicians comment on and guide the patients to appropriate values. The authors endorse the deliberative model as the most appropriate for physicians to adopt with most patients. Available online for purchase or by subscription.

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      • Levinson, Wendy, Audiey Kao, Alma Kuby, and Ronald A. Thisted. 2005. Not all patients want to participate in decision making. Journal of General Internal Medicine 20.6: 531–535.

        DOI: 10.1111/j.1525-1497.2005.04101.xSave Citation »Export Citation »E-mail Citation »

        Where do patients locate themselves on the spectrum defined by Emanuel and Emanuel 1992? Virtually all (96 percent) of the respondents to this national survey “answered positively when asked whether they prefer to be offered choices and to be asked their opinions by their doctors.” The results are nuanced, however, in that 52 percent endorsed the statement “I prefer to leave decisions about my medical care up to my doctor” (p. 532).

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        • Parsons, Talcott. 1951. Social structure and dynamic process: The case of modern medical practice. In The social system. By Talcott Parsons, 428–479. Glencoe, IL: Free Press.

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          In this complex work of sociology, Parsons offers chapter 10 as a case study that illustrates his theory of action. From his era, more paternalistic than today’s, Parsons describes how patients and surrounding social actors implicitly entered into a compact he calls the sick role. In this compact, others suspended expectations of patients to function normally but only as long as patients cooperated with physicians.

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          • Zikmund-Fisher, Brian, Mick Couper, Eleanor Singer, et al. 2010. Deficits and variations in patients’ experience with making 9 common medical decisions: The DECISIONS Survey. Medical Decision Making 30.5: 85S–95S.

            DOI: 10.1177/0272989X10380466Save Citation »Export Citation »E-mail Citation »

            This second national study of medical decision making in the US population is the first to focus on specific decisions made recently by respondents. “Across all decisions, 80% of patients stated that the final decision was either made primarily by themselves or was shared with their provider” (p. 89S). This study therefore provides more evidence for the shift away from paternalism. Available online for purchase or by subscription.

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            Journals

            Patient decision making fits under the academic rubric of shared decision making. Shared decision making refers to the collaborative process between and among the patient, the patient’s support team, and attending health care providers, resulting in a medical decision. Disciplines that have contributed methodologically to shared decision making include decision analysis, economics, engineering, medicine, nursing, and psychology. There is no journal of shared decision making, but two journals have emerged as flagships for the field: Health Expectations and Patient Education and Counseling. Another, Medical Decision Making, has historically focused more on the provider and policy perspectives but has recently included more studies of patient decision making. Two new journals approach the patient from different perspectives: The Patient has a more descriptive orientation, publishing studies that report patient-centered outcomes, whereas the Journal of Participatory Medicine has a more interventionist orientation, publishing studies and reports of efforts to increase active cooperation and collaboration among patients, caregivers, providers, and other key health care change agents.

            Need for Informed Patient Choice

            Consent is a passive kind of participation in decision making. Informed choice presumes a more vigilant kind of participation. The works highlighted here discuss why informed consent is not a sufficient standard to assert patient interests. Wennberg, et al. 1982 reviews evidence that physicians feel differently about the timing, value, and likelihood of outcomes and make different inferences from the same facts. Wennberg, et al. point out that our society tries to control deviant physician behavior through “certification, malpractice actions, and government regulations” (p. 811). All in all, the authors make the case for promoting vigilance (beyond consent) among health-care consumers so that they can take into account “professional uncertainty.” Brownlee 2007 understates the magnitude of the problem in focusing exclusively on overtreatment. The author overlooks the risks of undertreatment (e.g., underutilization of preventive and other effective interventions). One analysis is that the US health care economy is like a car with two drivers. One, representing producers of medicine, has a foot on the accelerator, driving revenue. The other, representing payers, has a foot on the brake, cutting costs. The patient is in the backseat getting whiplash. Until recently, patients have been more suspicious of payers than producers and more concerned about undertreatment than overtreatment. Brownlee’s treatise should change that bias in the direction of being more even-handedly critical. To address the biases toward over- and undertreatment, the President’s Commission 1982 calls for far-reaching changes in the medical school curriculum, including admission criteria, as well as greater investments in patient preparation and education, so that doctors and patients may ultimately engage in shared decision making. King and Moulton 2006 embraces the shared decision-making model as generally appropriate for achieving informed consent. To address concerns that physicians lack the time or training to properly inform and involve patients, King and Moulton suggest that decision aids could relieve physicians of the burden of discerning what evidence to discuss with patients. Decision aids are educational materials that summarize the risks and benefits of different treatment options and help patients clarify their goals and concerns; they thereby address the challenge of affective forecasting or accurately forecasting how patients will feel in a condition they have never experienced. In summary, patient interests are not being served under the current standard. Replacing informed consent with informed choice is feasible but will require additional resources beyond just physician counseling.

            • Brownlee, Shannon. 2007. Overtreated: Why too much medicine is making us sicker and poorer. New York: Bloomsbury.

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              Brownlee, a journalist, chronicles the rise of a medical-industrial complex that pushes tests, devices, procedures, and treatments on a public all too willing to suspend disbelief about the limits of medicine.

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              • King, Jaime Staples, and Benjamin W. Moulton. 2006. Rethinking informed consent: The case for shared medical decision-making. American Journal of Law & Medicine 32.4: 429–501.

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                The authors describe two standards for informed consent (reasonable physician and reasonable patient). They propose shared decision making as a new and better standard for informed consent because it requires doctors or other health educators to inform the patient about the available evidence concerning risks and benefits, while requiring patients to dialogue with physicians about their preferences. Available online for purchase or by subscription.

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                • President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1982. Making health care decisions: A report on the ethical and legal implications of informed consent in the patientpractitioner relationship. Washington, DC: Government Printing Office.

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                  This report coins the phrase “shared decision making” to refer to informing and involving patients beyond the letter of informed consent. The report reviews the principles of beneficence (“serving the patient’s well-being”) and autonomy (“self-determination”), and acknowledges the boundaries imposed by patient incapacity.

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                  • Wennberg, John E., Benjamin A. Barnes, and Michael Zubkoff. 1982. Professional uncertainty and the problem of supplier-induced demand. Social Science & Medicine 16.7: 811–824.

                    DOI: 10.1016/0277-9536(82)90234-9Save Citation »Export Citation »E-mail Citation »

                    The probability of receiving a unit of medical care (such as an operation) is a function of the frequency with which (1) a particular doctor sees someone like you, (2) the doctor diagnoses you with a particular condition, and (3) the doctor recommends intervention for patients like you with conditions like yours. Each of these factors introduces variation, since doctors vary in each of these propensities. Available online for purchase or by subscription.

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                    Decision Quality as Measure of Informed Choice

                    If we are to move toward a standard of informed choice, we should be able to distinguish when it has or has not occurred. Researchers have grappled with defining a way of measuring informed choice. Some have articulated the concept of decision quality. Hammond, in Arkes and Hammond 1986, cleaves all measurement of decision quality into two camps: one that expects good decisions to correspond to good outcomes and the other that requires them to reflect a coherent decision-making process. Janis and Mann 1977 proposes a mixture: the authors’ concept of decisional conflict is a coherence measure since it is internally and instantaneously observable by the decision maker at the time of the decision. Their construct of decisional regret is a correspondence measure of decision quality, since it is only observable as the more distal outcome of a decision. The problem with decisional conflict as a primary measure of decision quality is that it is susceptible to mere persuasion. That is, a physician, friend, or website could reduce a patient’s decisional conflict with misinformation or convincing but ill-founded arguments. The problem with decisional regret is that cognitive dissonance intercedes and people adapt to decisions with bad outcomes. Instead, Sepucha, et al. 2004 proposes, as a starting point, measuring patient knowledge based on essential facts associated with any given condition and also the concordance between patient preferences and treatments taken. Informed and involved patients can be agents of change in propelling the health-care system toward quality. As defined by the Institute of Medicine 2001, quality care is safe, timely, equitable, ethical, economic, and patient-centered. Informed and involved patients may advocate for timely care in ways that passive patients do not. Engaged patients will insist on effective, evidence-based care. Decision support can redress disparities if provided to underserved patients. There is some evidence that informed and involved patients make more appropriate use of resources, reducing the economic waste in the system and increasing the ratio of value created to value destroyed by health care. Finally, decision support is inherently patient-centered. Sox and Greenfield 2010 goes even further in proposing decision quality as a measure of all health-care quality. US Congress 2010 is a health reform bill with provisions for the measurement of decision quality as envisioned by Sepucha et al.

                    • Arkes, Hal R., and Kenneth R. Hammond. 1986. Judgment and decision making: An interdisciplinary reader. New York: Cambridge Univ. Press.

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                      This anthology collects essays that crystallize key concepts, tensions, problems, and paradoxes in decision science. It is an applied work in that the normative and descriptive issues that arise here are dealt with in the context of prescribing better approaches to decision making. Although no anthology can be comprehensive, this one covers a great range of topics that have endured through decades of decision science.

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                      • Institute of Medicine, Committee on Quality of Health Care in America. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington, DC: National Academy Press.

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                        The IOM proposes a conceptual framework for overall health care quality in which care is good to the extent that it is safe, timely, effective, equitable, economic, and patient-centered. Decision support for patients may be relevant to all of these dimensions.

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                        • Janis, Irving L., and Leon Mann. 1977. Decision making: A psychological analysis of conflict, choice, and commitment. New York: Free Press.

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                          Janis and Mann present a view of decision making that bridges reason and emotion using the metaphor of a balance sheet. This book includes the first use of the phrase “decision quality” in the literature. Chapter 14 is titled “Improving the Quality of Decision Making.”

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                          • Ratliff, Amanda, Marcia Angell, Richard Dow, et al. 1999. What is a good decision? Effective Clinical Practice 2:185–197.

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                            This collection of essays features a range of eminent thought and action leaders in health care wrestling with the essentially philosophical question of what constitutes a good decision. Some come down on the side of correspondence, evaluating decisions based on their consequences. Most, however, endorse the coherence view of decision quality as a process measure.

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                            • Sepucha, Karen R., Floyd J. Fowler Jr., and Albert G. Mulley Jr. 2004. Policy support for patient-centered care: The need for measurable improvements in decision quality. Health Affairs (October).

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                              Sepucha and colleagues come down firmly on the side of coherence in their view of decision quality. They propose a definition that has since been taken up by a consensus body, the International Patient Decision Aids Standards (IPDAS) collaboration. The definition states that decisions are good to the extent that they reflect the well-considered preferences of a fully informed patient and are implemented. Available online by subscription.

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                              • Sox, Harold C., and Sheldon Greenfield. 2010. Quality of care—How good is good enough? Journal of the American Medical Association 303.23: 2403–2404.

                                DOI: 10.1001/jama.2010.810Save Citation »Export Citation »E-mail Citation »

                                This editorial goes beyond the Institute of Medicine in proposing that the measuring the quality of care is mostly a matter of measuring the quality of decisions. This potentially elevates the profile of the debate over decision quality, which had to this point taken place mostly among a relatively small number of health services researchers already focused on shared decision making. Available online for purchase or by subscription.

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                                • US Congress. 2010. H.R. 3590: Patient Protection and Affordable Care Act. Section 3506. Program to Facilitate Shared Decision Making.

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                                  The US health reform bill of 2010 includes provisions that authorize expenditures on shared decision making. The bill envisions investments in the development of: measures of decision quality, decision aids for patients, and training for health-care providers. The first expenditures will come through a Center for Innovation within the Center for Medicare and Medicaid Services. Subsequent provisions await the appropriation of funds by Congress.

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                                  Critical Reflection as Means to Decision Quality

                                  How do we make decisions that are coherent—in other words, that cohere to certain process standards at the time that we make them? Pirsig 1974 warns that quality is holistic and ineffable. The implications for decision support are that overthinking is as dangerous as underthinking, and analysis must be followed by synthesis lest we lose sight of the forest because of all the trees. Belkora 2009 proposes that critical reflection can be iterative in just this way, deconstructing and reconstructing whole views in a virtuous interpretive spiral. Thus, providing decision support to people making medical decisions means helping them engage more productively in critical reflection. Keeney 1992 emphasizes the importance of focusing critical reflection on value clarification. Charles, et al. 1997 agrees that patients and physicians must share information about values as well as facts in order to share in a decision. The authors argue against prescribing a single approach to promoting shared decision making, suggesting instead that participants must be flexible within the context of their unique situations. Overall, however, they see this flexibility as making use of critical reflection and communication. Argyris, et al. 1985 articulates models of behavior that inhibit (Model 1) and promote (Model 2) productive critical reflection. Model 1 arises from people’s insecurity and defensiveness and explains why many of us act to control and defend our turf, try to look good and save face, avoid conflict, and cover up mistakes. Model 2 arises in contrast from an orientation of mutual learning and collaboration. Two of the core values of Model 2 are valid information and free and informed choice. Key behaviors in Model 2, not seen in Model 1, include voicing views in a way that explains reasoning and invites inquiry and probing other’s views in a way that surfaces concrete examples and reasoning.

                                  • Argyris, Chris, Robert Putnam, and Diana McLain Smith. 1985. Action science: Concepts, methods, and skills for research and intervention. San Francisco: Jossey-Bass.

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                                    Argyris and colleagues developed, through decades of qualitative research, two models of critical reflection, Model 1 and Model 2. Model 1 features defensive behavior and is based on core values that include maintaining unilateral control, winning/not losing, avoiding negative emotions, and appearing rational. Model 2 features an orientation toward mutual learning and is based on core values that include valid information, free and informed choice, and internal commitment.

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                                    • Belkora, Jeff. 2009. Promoting critical reflection in breast cancer decision making. In Shared decision making in health care: Achieving evidence-based patient choice. 2d ed. Edited by Adrian Edwards and Glyn Elwyn, 297–304. New York: Oxford Univ. Press.

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                                      This essay articulates a model of critical reflection based on fifteen years in the field of decision support. Decision making is a process of critical reflection. People think, talk, and write to integrate and assimilate their thoughts and feelings as they explore a problem or opportunity.

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                                      • Charles, Cathy, Amiram Gafni, and Tim Whelan. 1997. Shared decision-making in the medical encounter: What does it mean? (Or it takes at least two to tango). Social Science & Medicine 44.5: 681–692.

                                        DOI: 10.1016/S0277-9536(96)00221-3Save Citation »Export Citation »E-mail Citation »

                                        Charles and colleagues propose four necessary (but not necessarily sufficient) conditions for shared decision making: at least one patient and physician, active participation by all parties, sharing of information about values as well as facts, and agreement on a course of action to be implemented. Available online for purchase or by subscription.

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                                        • Keeney, Ralph L. 1992. Value-focused thinking: A path to creative decisionmaking. Cambridge, MA: Harvard Univ. Press.

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                                          Keeney, whose earlier contributions focused on quantitative decision analysis, suggests that we focus more of our critical reflection on our preferences and priorities. He suggests structured ways of doing this both qualitatively (e.g., sketching value hierarchies) and quantitatively (e.g., through multiattribute utility theory).

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                                          • Pirsig, Robert M. 1974. Zen and the art of motorcycle maintenance: An inquiry into values. New York: Morrow.

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                                            A summary of this classic work is: Quality is qualitative. That’s why it’s called quality. Pirsig’s opus also argues that quality is holistic and ineffable, not subject to analysis. Analysis and measurement interfere with quality.

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                                            Current State of Decision Quality

                                            A few researchers document the state of decision quality. As may be expected, the passive doctrine of informed consent, based on disclosure rather than participation, does not appear to produce patients who implement fully informed decisions based on well-considered values. Fagerlin, et al. 2010 finds widespread misinformation in a population-based sample. The authors are more diplomatic and circumspect, but this study may be seen as evidence that the requirements for informed consent are routinely violated in practice. Patients have substantial need for information that they can better absorb, understand, and act on. Earlier, O’Connor, et al. 2003 proposed a similar conclusion not through a population-based survey, but by analyzing data from the usual care arms of decision support experiments. Adler and Page 2008 places poor performance in decision quality in the context of overall psychosocial needs for people diagnosed with cancer. The domain of cancer is one in which the need for decision support is well documented. Patients and families experience emotional and cognitive overload when diagnosed, and their state of shock interferes with information gathering, communication, and decision making.

                                            • Adler, Nancy E., and Ann Page. 2008. Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press.

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                                              The Institute of Medicine reviews the psychosocial landscape in cancer care and concludes: “Despite strong evidence for the importance of effective patient–provider communication and patients’ participation in decision making in achieving better health-care outcomes, such communication is not yet the norm . . . physician–patient communication is generally inadequate, and patients are poorly prepared for communicating effectively (whether this involves simple information-seeking skills or more active involvement in treatment decisions)” (p. 163).

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                                              • Fagerlin, Angela, Karen Sepucha, Mick Couper, Carrie Levin, Eleanor Singer, and Brian Zikmund-Fisher. 2010. Patients’ knowledge about 9 common health conditions: Data from a national representative sample. Medical Decision Making 30.5 (Suppl.): 35S–52S.

                                                DOI: 10.1177/0272989X10378700Save Citation »Export Citation »E-mail Citation »

                                                The DECISIONS study is the first to query a representative sample of US residents on their experiences making a range of specific decisions. This report focuses on patient knowledge and finds that 25 percent to 88 percent of respondents were ignorant of key facts about the risks or benefits of treatments they were taking or had taken. Available online by subscription.

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                                                • O’Connor, Annette M., Albert G. Mulley Jr., and John E. Wennberg. 2003. Standard consultations are not enough to ensure decision quality regarding preference-sensitive options. Journal of the National Cancer Institute 95.8: 570–571.

                                                  DOI: 10.1093/jnci/95.8.570Save Citation »Export Citation »E-mail Citation »

                                                  This article documents the state of decision quality in routine care by analyzing the decision quality of patients in the usual care arms of various experiments with decision support intervention arms. The shortcomings are measured in terms of patient ignorance of basic facts and discordance between patient values and treatments taken.

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                                                  Decision Aids

                                                  One important breakthrough in improving the quality of critical reflection in medicine has been the recognition that it occurs before, during, and after any visit with a physician or other health-care professional. Decision aids are educational materials that target a specific health crossroads. Their content includes descriptions of the target condition, treatment choices, processes, outcomes, and patient preferences and experiences. O’Connor, et al. 2009 recently updated their ongoing meta-analysis of randomized controlled trials of decision aids, finding persistent effects. Since decision aids are noninvasive interventions with demonstrated educational benefits, researchers must now ponder whether it is ethical to continue withholding them in controlled experiments or whether they should now focus resources on disseminating them. Elwyn, et al. 2006 facilitates the task of dissemination by summarizing academic-, industry-, and community-based standards for the development of decision aids. Many of these decision aids are available on the Patient Decision Aids website of the Ottawa Health Research Institute, including many contributed by Healthwise and the Foundation for Informed Medical Decision Making through their work with Health Dialog. These decision aids incorporate risk communication techniques, including those described in Gigerenzer 2002.

                                                  • Elwyn, Glyn, Annette O‘Connor, Dawn Stacey, et al. 2006. Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process. BMJ 333 (7565): 417.

                                                    DOI: 10.1136/bmj.38926.629329.AESave Citation »Export Citation »E-mail Citation »

                                                    The International Patient Decision Aid Standards Collaboration establishes consensus-based criteria for the desired features of decision aids. The criteria cover the development process (which should be systematic and transparent), the content, the format, and the delivery. The participants in this collaboration strongly endorse the importance of balanced, evidence-based content, with proper disclosures of conflicts.

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                                                    • Foundation for Informed Medical Decision Making.

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                                                      Wennberg and Mulley started this foundation in 1989 to promote patient engagement as an antidote to unwarranted variation in medical decisions. Medical editors produce summaries of the quantitative evidence and qualitative insights surrounding a specific medical decision. A commercial entity, Health Dialog, licenses the foundation’s intellectual property to produce decision aids, distributed through commercial arrangements with health plans.

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                                                      • Gigerenzer, Gerd. 2002. Calculated risks: How to know when numbers deceive you. New York: Simon & Schuster.

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                                                        An important function of decision aids is to communicate the likelihood of treatment risks and benefits. Gigerenzer describes how physicians, patients, and others lack the numeracy skills to understand complex probabilistic representations. However, Gigerenzer describes a schema for representing probabilities through natural frequencies and reviews a body of evidence demonstrating that such representations are more comprehensible and accessible to patients.

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                                                        • Healthwise.

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                                                          Healthwise is the longest-standing producer of decision support materials, founded in 1975 with the mission to “help people make better health decisions.” As a nonprofit organization, Healthwise positions itself as a provider of objective, balanced health information for health and benefit plans, health-care providers, and consumers. Clients include Kaiser, Group Health, Harvard Pilgrim, and Vitality.

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                                                          • International Patient Decision Aid Standards Collaboration.

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                                                            The IPDAS collaboration establishes consensus-based criteria for the desired features of decision aids. The criteria cover the development process (which should be systematic and transparent), the content, the format, and the delivery. The participants in this collaboration strongly endorse the importance of balanced, evidence-based content, with proper disclosures of conflicts.

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                                                            • O’Connor, Annette M., Carol L. Bennett, Dawn Stacey, et al. 2009. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, issue 3, article no. CD001431.

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                                                              This systematic review covers fifty-five randomized controlled trials of decision aids, twenty-seven of which measure knowledge, which is one of the key dimensions of decision quality. Decision aids were associated with increased patient knowledge; more detailed aids were associated with larger effects than simpler aids. Decision aids also were associated with reduced decisional conflict, among other outcomes. Available online by subscription.

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                                                              • Patient Decision Aids. Ottawa Health Research Institute.

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                                                                This website is a treasure trove of resources related to decision aids and shared decision making. It includes an A to Z inventory of decision aids, many of which are available online, and resources (such as evaluation measures) for researchers and others interested in developing, evaluating, and implementing decision aids.

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                                                                Communication Aids

                                                                Three important communication aids have emerged to enhance critical reflection between doctors and patients: writing question lists, making written notes or summaries of consultations, and making audio recordings of consultations. Question listing is important because patients say they “freeze up” in visits and forget to ask important questions—even questions that have been keeping them awake during nights leading up to the medical appointment. Written summaries and audio recordings are important because they shift the time and place of critical reflection. Instead of having to absorb and understand everything that a physician is saying in real time, or having to recall it for future reflection, a patient can review the gist (in summaries) or detail (in recordings). Roter 1977 pioneered the study of question listing, while Greenfield, et al. 1988 was the first to document effects of question listing on clinical outcomes. Butow, et al. 1994 presents a self-administered form of question listing through the use of question prompt sheets. Kinnersley, et al. 2007 conducts a meta-analysis of trials involving question prompting and related interventions and finds modest benefits. Although the reviewers express concern about the modest effects, the fact that even modest, unobtrusive interventions such as prompt sheets can have an impact on the extent and quality of critical reflection is worth celebrating. Ong, et al. 2000 conducted an exemplary study of audio recording, and this too has been the subject of a systematic review that finds benefits. Because audio recordings can also be implemented inexpensively and unobtrusively, some believe that it is time to focus on implementation research issues, rather than continued efficacy studies.

                                                                • Butow, P. N., S. M. Dunn, M. H. Tattersall, and Q. J. Jones. 1994. Patient participation in the cancer consultation: Evaluation of a question prompt sheet. Annals of Oncology 5.3: 199–204.

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                                                                  Butow and colleagues asked themselves if the Roter and Greenfield question-coaching interventions could be streamlined to reduce the intensity of labor. After reviewing frequently asked questions from cancer care consultations, they developed a prompt sheet of eleven questions, plus space for patients to add five more. This intervention increased the number of questions patients asked about prognosis, although not the total number asked overall. Available online by subscription.

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                                                                  • Greenfield, Sheldon, Sherrie Kaplan, John E. Ware, Elizabeth Marin Yano, and Harrison Frank. 1988. Patients’ participation in medical care: Effects on blood sugar control and quality of life in diabetes. Journal of General Internal Medicine 3.5: 448–457.

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                                                                    Greenfield and colleagues were among those who picked up Roter’s question-coaching intervention and investigated the effects beyond question asking. Their intervention involved a clinic assistant prompting patients with diabetes to formulate questions for upcoming visits to their physicians, based on reviewing their medical chart. They found significant benefits in terms of increasing patient involvement in the appointment, controlling blood sugar, and reducing functional limitations. Available online for purchase or by subscription.

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                                                                    • Kinnersley, P., A. Edwards, K. Hood, et al. 2007. Interventions before consultations for helping patients address their information needs. Cochrane Database of Systematic Reviews, issue 9, article no. CD004565.

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                                                                      In recognition of the emerging line of research on question prompting and visit preparation, the Cochrane Collaboration eventually reviewed thirty-three randomized controlled trials involving 8,244 patients to evaluate the effects that could be discerned by pooling data in a meta-analysis. They found that visit-preparation interventions, including question prompting, were associated with increases in question asking and satisfaction. Available online by subscription.

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                                                                      • Ong, L. M., M. R. Visser, F. B. Lammes, J. van der Velden, B. C. Kuenen, and J. C. de Haes. 2000. Effect of providing cancer patients with the audio-taped initial consultation on satisfaction, recall, and quality of life: A randomized, double-blind study. Journal of Clinical Oncology 18.16: 3052–3060.

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                                                                        Patients randomized to receiving the audio recording made of their consultation were more satisfied and better able to recall information than controls. The authors found that 75 percent of the intervention group reviewed their recording, with 73 percent involving others in that review. This suggests that a large majority of patients actually used this simple, unobtrusive, inexpensive intervention to reflect critically on their consultations.

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                                                                        • Pitkethly, Marie, Stephen MacGillivray, and Rebecca Ryan. 2008. Recordings or summaries of consultations for people with cancer. Cochrane Database of Systematic Reviews, issue 9, article no. CD001539.

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                                                                          In addition to reviewing the evidence about decision aids and question prompting, the Cochrane Collaboration reviewed fifteen randomized studies involving 2,318 participants. Nine measured recall of information. Five found statistically significant increases in information recall. The trials were too heterogeneous to allow meta-analyses. Available online by subscription.

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                                                                          • Roter, Debra L. 1977. Patient participation in the patient–provider interaction: The effects of patient question asking on the quality of interaction, satisfaction and compliance. Health Education Monographs 5.4: 281–315.

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                                                                            Roter’s study focused on patients with chronic conditions, including hypertension or diabetes, randomizing them to question coaching or a control condition structured to mimic the structure of the intervention, but with content unrelated to the upcoming consultation. The question-coaching intervention was associated with an increase in question asking, and Roter’s report spawned a line of research related to visit preparation and question prompting. Available online for purchase or by subscription.

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                                                                            Implementation

                                                                            There has been relatively little attention paid to translating evidence-based decision support interventions, such as decision and communication aids, into practice. O’Connor, et al. 1998 contributed the Ottawa Decision Support Framework, which is especially useful as a model of how to plan, implement, and evaluate decision and communication aids in practice. The RE-AIM website offers more specific guidance on evaluation. Belkora, et al. 2009 describes a sustained implementation of decision and communication aids in a case study and reports on the authors’ efforts to expand reach in a quality improvement study (Belkora, et al. 2011). Their Decision Services unit deploys recent premedical interns as front-line staff who connect patients with decision and communication aids. This implementation has been recognized as a leading innovation in part because it makes use of trainees to deliver labor-intensive services. This use of trainees receiving credit and/or a stipend could be emulated in academic and even community settings as an economic way of expanding the reach of decision and communication aids. The Center for Shared Decision Making at Dartmouth is the first and longest-running resource center that integrates decision aids and decision coaching into routine clinical practice across many conditions in an academic medical center. If, as expected, decision support becomes a political as well as ethical and educational imperative, call centers will likely play a prominent role in facilitating this form of critical reflection. As call centers merge with website chat support centers, callers or viewers will be able to view visual aids while speaking to call center representatives, which will add a new dimension to telephone and Internet-based decision support. Stacey, et al. 2006 reports on early work training nurses in contact centers. The nurses felt that decision support was appropriate for their role and audience, but more work is needed to adapt the call center environment to facilitate delivery of decision support. Study participants suggested streamlining and automating aspects of decision support, such as the scripts, into existing computer systems; changing guidelines so that decision support calls could exceed the length targets for other, simpler calls; and marketing decision support to potential callers. Contact centers will likely serve as a channel for patient advocates to further disseminate decision and communication aids.

                                                                            • Belkora, Jeffrey K., Meredith K. Loth, Shelley Volz, and Hope S. Rugo. 2009. Implementing decision and communication aids to facilitate patient-centered care in breast cancer: A case study. Patient Education and Counseling 77.3: 360–368.

                                                                              DOI: 10.1016/j.pec.2009.09.012Save Citation »Export Citation »E-mail Citation »

                                                                              This case study illustrates the Decision Services implemented into the UCSF Breast Care Center as a routine part of care since 2004, with funding from UCSF and the Foundation for Informed Medical Decision Making. The case study examines the program theory (or design) of the implementation as it plays out in practice. Available online for purchase or by subscription.

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                                                                              • Belkora, Jeffrey K., Alexandra Teng, Shelley Volz, Meredith Loth, and Laura Esserman. 2011. Expanding the reach of decision and communication aids in a breast care center: A quality improvement study. Patient Education and Counseling 83.2: 234–239.

                                                                                DOI: 10.1016/j.pec.2010.07.003Save Citation »Export Citation »E-mail Citation »

                                                                                This study uses the SQUIRE guidelines for structuring and reporting on quality improvement to summarize efforts to expand the reach of decision and communication aids. Before these changes, the program delivered 208 decision and 142 communication aids. After the changes, which occurred over a two-year period, the program delivered 936 decision and 285 communication aids. Available online for purchase or by subscription.

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                                                                                • Center for Shared Decision Making. Dartmouth-Hitchcock Medical Center.

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                                                                                  The Center for Shared Decision Making (CSDM) at Dartmouth was founded in 1999 and has a library of decision aids covering sixteen conditions, from back pain to weight management. In the orthopedic and breast clinics, patients view a decision aid and complete online questionnaires producing a shared decision-making report that is “fed forward” to the attending physician.

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                                                                                  • O’Connor, Annette, Peter Tugwell, George Wells, et al. 1998. A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Education and Counseling 33.3: 267–279.

                                                                                    DOI: 10.1016/S0738-3991(98)00026-3Save Citation »Export Citation »E-mail Citation »

                                                                                    The Ottawa Decision Support Framework offers a conceptual model for implementing decision support: assess needs, provide decision support, and evaluate decision support. This article describes the dimensions of patient need (e.g., knowledge), the specific activities involved in providing decision support (e.g., value clarification), and the appropriate outcome measures for decision support. Available online for purchase or by subscription.

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                                                                                    • RE-AIM.

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                                                                                      The RE-AIM model provides a framework for evaluating the implementation of any program or intervention in terms of its reach, effectiveness, adoption, implementation, and maintenance. It applies to decision support interventions taken individually or as a multicomponent suite.

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                                                                                      • Stacey, Dawn, Marie-Pascale Pomey, Annette M. O’Connor, and Ian D. Graham. 2006. Adoption and sustainability of decision support for patients facing health decisions: An implementation case study in nursing. Implementation Science 1.17: 1–10.

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                                                                                        Stacey and colleagues report on the aftermath of a decision support training session conducted with a nurse call center in a Canadian province. Of thirty-one nurses trained, twenty-five responded to a follow-on survey and eight in focus groups. One month in, eleven of the nurses had invoked the decision support protocol. Fourteen reported no callers with decisional conflict.

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                                                                                        Descriptive Works on Challenges with Critical Reflection

                                                                                        This section focuses primarily on critical reflection for prescriptive purposes—in other words, helping people to make decisions. Social scientists have described key issues or barriers to critical reflection. Wilson 2002 describes the problem of anticipating how we will feel about a future we’ve never experienced. Although individuals tend to be inaccurate forecasters of their future reactions, they can improve their forecasts by better anticipating their own capacity to adapt. Wilson also discusses the surprising finding that others may be able to discern how we will feel about a future state with which we have little experience even better than we can. This last finding provides additional support for the favored mode of shared decision making in Emanuel and Emanuel 1992 (cited in General Overviews), the deliberative role in which physicians comment on and seek to influence patient values. Schwartz 2004 describes the paralysis and dissatisfaction that may ensue for some decision makers who seek to overthink their decisions. The author suggests that critical reflection should focus more on satisficing (achieving a satisfactory outcome) than on maximizing or optimizing outcomes. Klein 1998 expresses concern that conscious decision making is too time-consuming for some of the high-stakes situations the author describes, such as firefighting. Lehrer 2009 suggests that we find ways to cultivate our unconscious pattern recognition faculties, such as simulation, while using our conscious or rational faculties to query, probe, and check our instincts and gut reactions. These may have overemphasized individual decision making; the real power of critical reflection is that it harnesses our communicative competences to achieve higher levels of cooperation, coordination, and collaboration. There will always be a need for rapid individual responses to true emergencies, and indeed, we cannot always rely on critical reflection at such times, but in our modern world, there are few instantaneous threats to survival. Our survival depends increasingly on longer-cycle dynamics that affect many stakeholders and are influenced by many participants. Most medical decision making exemplifies this long-cycle interdependence, and we must use all our faculties—conscious, unconscious, and communicative—to respond.

                                                                                        • Lehrer, Jonah. 2009. How we decide. Boston: Houghton Mifflin Harcourt.

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                                                                                          One of Lehrer’s chapters describes how simulation, which primes people to internalize subtle patterns, has reduced the incidence of pilot error after decades in which it had remained constant.

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                                                                                          • Klein, Gary A. 1998. Sources of power: How people make decisions. Cambridge, MA: MIT Press.

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                                                                                            Klein elaborates on a model he calls “recognition-primed decision making.” Humans learn to recognize patterns unconsciously and should follow the somatic cues they receive in the heat of the moment.

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                                                                                            • Schwartz, Barry. 2004. The paradox of choice: Why more is less. New York: Ecco.

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                                                                                              Schwartz documents how with more choice (mostly in the consumer arena), “we produce better results with our decisions than we would in a more limited world, but we feel worse about them” (p. 201). Too much choice can clutter our lives and rob us of focused pleasure. Most of the book describes this dynamic, and then Schwartz concludes with a terrific chapter outlining eleven strategies for coping with excessive choice.

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                                                                                              • Wilson, Timothy D. 2002. Strangers to ourselves: Discovering the adaptive unconscious. Cambridge, MA: Belknap Press of Harvard Univ. Press.

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                                                                                                Timothy Wilson describes the problem of affective forecasting: knowing how we will feel about future outcomes. The bad news is that we are all fairly terrible at knowing how we will feel about things we have never experienced. The good news is that we adapt to anything, including bad outcomes, better than we usually predict.

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