The Shared Decision-Making Continuum

Abstract

DURING THE 20TH CENTURY, MEDICAL DECISION MAKing shifted from a paternalistic approach to an autonomy-based standard in the United States. Now, in the 21st century, the pendulum is swinging back and the medical community and the public are increasingly embracing shared decision making. In many other parts of the world paternalism remained the primary approach, yet there is now a move toward shared decision making occurring internationally. This “meeting in the middle” has been spurred by the 2004 endorsement of shared decision making over either strict autonomy or physiciandirected decision making by the leading critical care organizations in Europe and the United States. Furthermore, the American Medical Association, the American College of Critical Care, and the American Academy of Pediatrics all advocate shared decision making. Most patients (the term patient in this article denotes either the patient or the patient’s agent or surrogate decision maker in cases of an incompetent patient) and family members prefer shared decision making over either strict autonomy or physician-directed decision making. Recent legislation in US states gives physicians greater control. For instance, the Texas Advance Directives Act of 1999 (Texas Health & Safety Code §166.046) specifies the process by which physicians can withdraw life-sustaining interventions over patient objection, and in 2009 California enacted similar legislation (California Probate Code §4736). Such studies and legislation demonstrate that the move away from a strict autonomy model is now widely accepted in the United States. In Europe and other parts of the world, the move away from paternalism toward shared decision making is also becoming accepted in medical and lay communities, and patients are increasingly being given greater control over their medical care. Although shared decision making is becoming the new standard, it remains unclear exactly what “shared decision making” means. The model for shared decision making described herein is consistent with ethical principles and patient preferences and can be referred to as the “shared decision-making continuum” because shared decision making will necessarily take different forms in different situations. Shared decision making does not mean the same thing in all cases and therefore can best be understood as a continuum (FIGURE). At one end is patientor agent-driven decision making, at the opposite is physician-driven decision making, and in the middle are many possible approaches. Discussion of 5 points along the continuum illustrates some of the possible approaches. In patient/agent-driven decision making (akin to strict autonomy), the physician presents all options and the patient makes his/her own choice. The physician provides expert knowledge only and makes no recommendations. In physician recommendation decision making, the physician explains all options and also makes a recommendation. Because many decisions in health care are value laden, physicians must base their recommendations on the patient’s values rather than on their own. Ascertaining the patient’s values, however, often requires time and advanced communication skills. Furthermore, when a patients asks the physician what he/she would do, the physician must consider the patient’s perspective and ensure that he/she is neither intentionally nor unintentionally coercive. In equal partners decision making, the patient and physician work together to reach a mutual decision. This process often requires a longstanding relationship, and both parties must understand the values and biases of the other. Mutual respect and understanding are essential. Because the patient and physician necessarily have different perspectives, the physician must ensure that it is the patient’s values, not his/her own, that guide decision making. In some cases it may be appropriate for the physician to bear the major burden of decision making. With informed nondissent decision making, the physician, guided by the patient’s values, determines the best course of action and fully informs the patient. The patient may either remain silent, thereby allowing the physician’s decision to stand, or veto the decision. In this approach the patient must understand all pertinent information (as he/she would in any method of decision making). Furthermore, the patient must appreciate that silence will be construed as tacit agreement. Patients must understand that they are welcome to veto the decision and if so, their wishes will be honored and they will receive excellent care.