ENCOUNTERS WITH “GODS ON THEIR HIGH THRONES IN HEAVEN”: PATIENT PERCEPTIONS OF WHAT IT TAKES TO PARTICIPATE IN SHARED DECISION MAKING

Purpose: This study explored a critical gap in shared decision making research – patient perceptions of what it takes to engage in the communication behaviors necessary for shared decision making.

Method: We conducted a focus group study. Discussion centered on participants’ perceptions of communicating with physicians (e.g., asking questions, discussing preferences, disagreeing with a recommendation) in the context of preferences sensitive decisions. Participants (N=48) were primary care patients who were at least 40 years old (Mean = 64.7, SD = 12.1). We conducted a total of 6 focus groups, which were transcribed and analyzed thematically.

Result: Participants’ experiences and perceptions were grouped around four major themes. (1) Not challenging the physician helps protect the patient:

• Participants described not wanting to challenge the physician by asking too many questions, for fear that they may receive lower quality care later.
• Fearing retribution for being a difficult patient, participants described a high dependency on the good will of the clinician and concern that they will be dismissed as non-compliant and receive worse care if perceived as too assertive.

(2) Being deferential to protect self-interest:

• Participants talked of wanting to conform to normative definitions of the patient role, wanting to be deferential, not "displeasing" or "disappointing" the doctor, by asking too many questions, or disagreeing with a recommendation.
• Participants described remaining passive in order to ensure high quality care.

(3) Patients work to fill information gaps:

• Not being able to rely on physicians for decision support, participants described doing their own research, often unannounced to the physician.

(4) Bringing support to the consultation:

• Described a common strategy to cope with the difficulty of assimilating information at a high pace in time pressured consultations.

Conclusion: Participants voiced a strong desire to share important clinical decisions, but are reluctant for fear of being categorized as difficult patients, less worthy of attention and therefore less likely to receive high quality care. This perception of being in jeopardy has not been previously described and physicians may not be aware of the need to create a zone of safety for shared decision making to become routine.