Rethinking the concept of “end-of-life decisions”: the bioethical contribution of the empirical studies ELDY and ELDY- CARE

Abstract

This paper aims to critically investigate the notion of “End-of-Life Decisions” (ELDs) in order to extend its current semantic range. In fact, this expression usually refers to those practices that imply the death of the patient or those acts that can potentially shorten the patient’s existence. Instead, we suggest including into the “end-of-life decisions” all the decisions made in the final phase of existence: killing (e.g., euthanasia and physician-assisted suicide), letting die (e.g., withholding or withdrawing treatments), keeping alive by any means, or keeping alive despite unfavorable prognosis (e.g., antibiotic therapy in an end-of-life subject with significant infection symptoms). Such an approach makes it possible to investigate ethical issues related to both practices that cause death or might affect the shortening of life and those aimed at procrastinating the fatal event. Following the conceptual analysis of the concept of ELDs, we discuss several empirical studies and the structure of questionnaires used in recent years to investigate end-of-life opinions and decisions among healthcare professionals, caregivers, and patients. In particular, we analyze the ELDY and ELDY-CARE studies, which are based on an extended concept of ELDs and thus focus not only on the anticipation of the death of the patient, but also on life-prolonging decisions.