What do I want to be done at end-of-life? Disease awareness, knowledge of clinical procedures and of advanced directives in patients with chronic progressive diseases

Abstract

Many steps forward within the legal field to facilitate end-of-life communication have been taken, but Mediterranean countries can be considered as a step back. Aim of our observational cross-sectional study is to observe disease awareness, knowledge of clinical procedures and of advanced directives in patients with chronic progressive diseases in Italy. Methods. 115 subjects (23 with Amyotrophic Lateral Sclerosis – ALS, 30 with Chronic Heart Failure – CHF, 32 with Chronic Kidney Failure – CKF, and 30 with Advanced Cancer – AC) were assessed on health literacy, their right to be informed and meaning of Advance Directives (AD) and of Advance Declaration of Treatment (ADT). Results. 86% of patients claimed the right to know diagnosis and prognosis and to be informed of disease progression. Patients did not know the meaning of invasive therapy (52%) and of aggressive treatment (81%). 72% did not know the meaning of AD and of ADT; 94% believed that AD or ADT could partially or totally guarantee patient’s will to make decisions on end-of-life, with frequency difference on AD or ADT efficiency between CHF and ALS patients (p=.01). Once informed on the definitions of AD (legally binding) and ADT (not legally binding), ALS patients preferred legally binding directives, compared to patients with AC and with CHF (ALS vs CHF p=.005; ALS vs AC p=.001). Patients with CKF would prefer legally binding proposal compared to CHF patients (p=.02). To inform and to guide patients from diagnosis to end-of-life should be an integral part of medical practice.