Decision making in head and neck cancer care.

Objectives/hypothesis: To describe patterns of patient involvement in head and neck cancer decision making.

Study Design: Prospective longitudinal ethnography of otolaryngology patients making treatment decisions.

Methods: Grounded theory analysis of verbatim transcripts and original voice recordings from: 1) participant-driven diaries, 2) participants' office visits with their physicians, and 3) semistructured interviews completed after a treatment decision had been made.

Results: Patients with serious illness and experiencing considerable pain, discomfort, or alteration in the ability to perform activities of daily living, and who fear for their life, do not make decisions in a way that adheres to the conventional model of decision making, which presumes a sequential, office-based interaction with clear patient autonomy. These patients have the ability to interpret information they receive during office visits, but they describe making a treatment decision as "deciding to do something" not choosing a specific treatment. This group also describes "trust" or "confidence" in the physician as the most important factor in making a decision, not the type or amount of information received. They move through providers toward treatment in a linear fashion, from one physician specialty to the next, usually without doubling back to revisit previous decisions or discussions.

Conclusions: Decision making in serious illness unfolds differently than in less serious problems. The conventional model does not fit this patient population, and reliance on trust of the physician figures prominently. Decision support should be aimed at physician decision making, promoting explicit incorporation of patient-specific data into the process.