End-of-Life Decisions and Advance Directives in Palliative Care: A Cross-Cultural Survey of Patients and Health-Care Professionals

Abstract In order to explore possible differences in the scope of end-of-life decisions and attitudes toward advance directives (AD) in palliative care, we conducted a survey of 159 patients in palliative care institutions and 93 health-care professionals experienced in palliative care in the United States, Germany, and Japan. Giving an AD in this clinical setting was considered important by patients and professionals. The prevalence of a formal written AD was 79% in the United States, 18% in Germany, and 9% in Japan. In Japan, there was a high prevalence of entrusting all decisions to the family (known as omakase). More than 80% of the patients had negative feelings toward their future decisions in the United States and Germany, in contrast to only 45% in Japan. Although favored by the professionals, there were no specific instruments for obtaining ADs. In Germany and Japan, some patients had given an informal AD. As a pilot content validity step, survey results were used to derive a checklist for content and procedural aspects in end-of-life decision-making. This checklist may provide the basis for developing an instrument to guide physicians, especially non-palliative care specialists, in communication with their patients and their families in this difficult clinical situation.