Patient Decision Making

by

Jeffrey K. Belkora

• LAST REVIEWED: 23 March 2012
• 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/BF01533009

  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.

• 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.1992.03480160079038

  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.

• 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.x

  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).

• 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.

  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.

• 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: 10.1177/0272989X10380466

  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.