Participation in Medical Decision Making: The Patients’ Perspective Liana Fraenkel, MD, MPH, Sarah McGraw, PhD P atient participation in decision making fulfills the ethical principle of patient autonomy and the legal requirement of informed consent. Studies published to date, however, have reported signifi- cant variability in how much patients want to parti- cipate in this process. 1–7 For example, in a recent large population-based survey, Levinson and others 2 found that 52% of respondents preferred to leave the final decision up to their doctor. Moreover, Kiesler and Auerbach 6 found that the common belief that matching patients’ preferred level of involvement will lead to positive outcomes was not consistently supported by research with the currently available measurements. Deber and others 4 hypothesized, and subsequently demonstrated, that variability in patients’ desire to participate in decision making is in part due to the failure of survey questions to adequately differ- entiate between problem-solving tasks (i.e., determin- ing the correct diagnosis and delineating appropriate treatment choices) and decision-making tasks (i.e., choosing a treatment or intervention from a rational set of options). In point of fact, in Levinson and the study by Levinson and others, the vast majority of patients wanted to be offered choices, even though many preferred to leave the final decision up to their doctor. 2 This discrepancy suggests that the variabil- ity in patients’ preferences to participate in decision making noted in recent studies 7 may be in part due to limitations in the survey instruments used to quantify patient preferences. Patient and physician beliefs differ in many res- pects, including how they conceptualize illness, how they prioritize long-term outcomes, and how they rank available treatment options. 8–12 Likewise, it is also possible that physicians and patients differ in how they conceptualize participation in decsion mak- ing. If this hypothesis is correct, current instruments Purpose. Variability in reports of patients’ preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care. Methods. The authors con- ducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner. Results. Twenty-six persons were interviewed. The main themes discussed by the par- ticipants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the deci- sions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians’ recommenda- tions, and 5) patients make choices in the context of their specific illness perceptions. Conclusions. Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design. Key words: medical decision making; qualitative study; patient parti- cipation. (Med Decis Making 2007;XX:xx–xx) Received 12 June 2006 from the VA Connecticut Healthcare System and Yale University School of Medicine, New Haven, Connecticut (LF), and the New England Research Institutes, Watertown, Massachusetts (SM). This study was partially funded by the Arthritis Foundation Clini- cal Science Grant. Dr Fraenkel is supported by the K23 Award AR048826-01 A1. Revision accepted for publication 9 March 2007. Address correspondence to Liana Fraenkel, MD, MPH, Yale University School of Medicine, Section of Rheumatology, 300 Cedar Street, TAC Building, Room 525, P.O. Box 208031, New Haven, CT 06520-8031; telephone: 203-932-5711 extension 5914; fax: 293-937-4932; e-mail: liana.fraenkel@yale.edu. DOI: 10.1177/0272989X07306784 MEDICAL DECISION MAKING/MON–MON 2007 533 Med Decis Making OnlineFirst, published on September 14, 2007 as doi:10.1177/0272989X07306784 Copyright 2007 by Society for Medical Decision Making. by guest on July 3, 2015 mdm.sagepub.com Downloaded from