Save the date ! Summer School Ethics and neuro-progressive diseases 2024 – The dilemmas and choices of sick people and their loved ones | News

The thirteenth edition of the Summer University

For the thirteenth edition of its Summer University “Ethics and neuro-evolutionary diseases”, the IDF Ethics Space is interested in ethical dilemmas faced by sick people and their loved ones. As someone living with Alzheimer’s disease, Parkinson’s disease, multiple sclerosis, Lewy body disease, or another progressive neurological disease, there are many legitimate questions:

• How to make decisions relating to your health, your more global support, your family and professional life?
• Should we, and if so how, express choices in advance?
• What to think of the possible arrival of new drugs?
• With what support can you approach the prospect of the end of your life and the decisions that may then arise?
• As a spouse, child, and more broadly, close to a person suffering from a neuro-progressive illness, how can we best support them, while taking into account their own needs and other family commitments and existential?
• Can it be “ethical”, to protect the sick person, not always to tell them the whole truth?
• When cognitive disorders are present, how can security and freedom be reconciled?
• When and how to request a legal protection measure?
• When and in what way should you broach the subject of possible entry into an establishment?

It is essential that care and support professionals know these questions and understand them, as these can have an impact on care and strongly echo the dilemmas faced by caregivers. More broadly, it seems fundamental to us to recognize that sick people and their loved ones not only have a lived experience of the illness, a subjective experience – but that they also have thoughts and questions about this experience, some of which have a obvious ethical dimension. This leads to the question, on the one hand, of how to support them in their ethical commitment to illness and, on the other hand, of how to support them in their questions and help them confront the sometimes complex dilemmas they face. are faced.

This raises, in short, the question of the commitment, alongside them, of professionals and society.