Communication between patients and physicians about terminal care: A survey in Japan

We assessed patient-physician communication about terminal care in Japan by examining the accuracy of physicians' estimation of their patients' preferences as regards (1) information about diagnosis and prognosis, (2) the place of death and (3) the therapeutic strategy at terminal stage (life prolongation vs pain control). We conducted a questionnaire survey on inpatients (n = 201) in three hospitals; two in rural areas (Nagano and Okinawa) and one in an urban area (Tokyo). Simultaneously we asked physicians (n = 40) in charge of the patients to estimate their attitudes. The accuracy of physicians' estimation was assessed by correct estimation rate (CER) and kappa coefficient. (1) Approximately 80% of the patients preferred to have candid information about diagnosis and prognosis, regardless of the nature of their disease. The physicians were correct in estimation only in about half of the cases. About one sixth of the physicians' guesses were in opposite direction, while about one third failed to make any estimation at all. Thus, the overall CER was 42%, 57% and 62% in Nagano, Okinawa and Tokyo respectively. (2) While 70% of the patients wished to meet their death at home, the physicians estimated this fact correctly in less than half of the cases. The physicians frequently could not make any estimation (CER: 21%, 36% and 40% respectively). (3) Two thirds of the patients preferred pain control over life prolongation. Again, CER remained in the neighborhood of 50% (CER: 49%, 49% and 64% respectively). The analysis by kappa coefficients showed that the concordance between patients' preferences and physicians' estimation was not far from a figure expected by chance alone. Above findings indicate that physicians had practically no knowledge of their patients' preferences and strongly suggest absence of effective communications between patients and physicians concerning terminal care. This situation inevitably enhances physicians' effort toward prolongation of patients' life at the expense of quality of life, and in part accounts for expansion of medical expenditure during the least effective stage of therapy.