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

• Autores: Anna Giardini, Marcella Ottonello, Carlo Pasetti, Deborah Jean Pain, Inés Giorgi
• Localización: Medicina y Ética: Revista internacional de bioética, deontología y ética médica, ISSN-e 2594-2166, ISSN 0188-5022, Vol. 30, Nº. 3 (julio-setiembre/July-September), 2019, págs. 859-876
• Idioma: inglés
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• Resumen

  • 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, know- ledge 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% be- lieved 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.