Modern dying: from securing rights to meeting needs

Modern medicine has transformed the dying experience. In the developed world, most of us no longer die from infectious diseases and sudden accidents, but from chronic illnesses that progressively worsen. Yet the U.S. healthcare system is not designed to meet the needs of people with chronic illness or of frail elders. In addition, our system incentivizes the use of technologies that are often helpful when an underlying condition is reversible but, when used very near the end of life, may only postpone the dying process and increase burdens on the patient. This state of affairs renders many people near the end of life without adequate symptom control, little or no social and psychological support, and inadequate involvement in decisions about when and how best to use modern technologies. This paper traces efforts over the last three decades to address problems related to modern dying. The author sees three phases: early work focused on securing patients' rights to refuse unwanted treatments, the next phase focused on building the specialty of palliative medicine, and the third and future phase must redesign our healthcare system to better align with how we die in the 21st century.