A typology of preferences for participation in healthcare decision making

Abstract

Classifying patients as "active" or "passive" with regard to healthcare decision making is misleading, since patients have different desires for different components of the decision making process. Distinguishing patients' desired roles is an essential step towards promoting care that respects and responds to individual patients' preferences. We included items on the 2004 Wisconsin Longitudinal Study mail survey measuring preferences for four components of the decision making process: physician knowledge of patient medical history, physician disclosure of treatment choices, discussion of treatment choices, and selection of treatment choice. We characterized preference types for 5,199 older adults using cluster analysis. Ninety-six percent of respondents are represented by four preference types, all of which prefer maximal information exchange with physicians. Fifty-seven percent of respondents wanted to retain personal control over important medical decisions ("autonomists"). Among the autonomists, 81% preferred to discuss treatment choices with their physician. Thirty-nine percent of respondents wanted their physician to make important medical decisions ("delegators"). Among the delegators, 41% preferred to discuss treatment choices. Female gender, higher educational attainment, better self-rated health, fewer prescription medications, and having a shorter duration at a usual place of care predicted a significantly higher probability of the most active involvement in discussing and selecting treatment choices. The overwhelming majority of older adults want to be given treatment options and have their physician know everything about their medical history; however, there are substantial differences in how they want to be involved in discussing and selecting treatments.

DNA data sharing: research participants' perspectives

“…Although preferences for involvement in medical decision-making vary, studies suggest that most patients would at least like to make the final decision about treatment, even if they do not want control over decisions about more technical aspects of medical management. 21,22 Most participants in this study were dedicated to the advancement of research and were willing to allow widespread data sharing within the medical community. However, they shared the general public's concerns about genetic privacy 23,24 and feared access from nonresearchers.…”

Delivering patient choice in clinical practice: a conversation analytic study of communication practices used in neurology clinics to involve patients in decision-making

“…26 However, it has also been observed that too many options can leave consumers feeling anxious and overwhelmed, 27 with patients at particular risk owing to the nature of clinical decision-making: as a health-care consumer, the patient is, by definition, sick, dependent on the professional for treatment and often lacking the knowledge to make an independent decision and the time to deliberate. 28 Moreover, it is well documented that not all patients want to choose their treatment; 29,30 and, as Pilnick and Dingwall 31 highlight, reviews of the literature on patient centeredness show mixed results with respect to positive health outcomes (although they suggest increased rates of patient satisfaction). We did not start, then, from the assumption that choice ought to be more widely offered to patients.…”

“…On the one hand, she does not do what is asked of her: announce a preference with respect to what they do about her turns. On the other, she does clarify further what matters to her in this decision-making process: avoiding a fall (lines [27][28][29][30][31][32]. This sets in motion two additional history-taking questions (lines 33, 34 and 40-44), the responses to which lead to advice-giving by the neurologist at lines 54-60.…”

Translating Medical Evidence to Promote Informed Health Care Decisions

“…Patient preferences for involvement in decision making vary along a spectrum from, at one end, a clinician-controlled (paternalistic) model in which the patient relies on the clinician to make decisions to, at the other, a preference for autonomous decision making (Robinson and Thompson 2001;Flynn, Smith, and Vanness 2006;Ryan and Sysko 2007;Thompson 2007). Role preferences in decision making differ by the type and severity of the illness, patient characteristics, and patients' relationships with health professionals.…”

“…Role preferences in decision making differ by the type and severity of the illness, patient characteristics, and patients' relationships with health professionals. A preference for greater autonomy in decision making is generally associated with younger age, higher educational attainment, and better health status (Benbassat, Pilpel, and Tidhar 1998;Robinson and Thompson 2001;Flynn, Smith, and Vanness 2006;Ryan and Sysko 2007).…”