Public Policy in ALS Care: The Italian Situation

Abstract

ALS care in Italy is mainly managed by specialist neurological centers, often hospital based, working as hubs linked to other specialist services involved in the care process. Because the Italian National Health Service is regionalized, locally different models of care can occur. A National Research Programme promotes the integration of public and private sectors on research priorities and opportunities. Patients’ associations play a substantial role advocating for legal rights, adequate service provision and support for carers. National and regional laws guarantee benefits for ALS patients and their carers by means of economic support and device provision. Palliative care in ALS is developing fast in Italy. There are research groups involving neurologists, rehabilitation specialists and palliative specialists, and recommendations were recently released on this topic. End-of-life care is regulated by specific national laws; patients have the right to decide on withholding or withdrawing treatments. Euthanasia and assisted suicide remain illegal, even though there is a social movement toward more permissive legislation.