Ethical Issues in End-of-Life Care in Neurology

Using Parkinson's disease as an example, Valérie MESNAGE and Elsa MHANNA will address the main challenges of end-of-life care, the importance of advance discussions involving loved ones, the need to recognize the approaching end of life, and requests for assisted dying and their specificities within the context of neurological conditions.

People with neurological conditions follow diverse trajectories in terms of timing and progression, depending on whether they have acute conditions that are more or less reversible (e.g., acute polyradiculoneuritis, which can cause temporary complete paralysis) or progressive neurological diseases with varying progression patterns (e.g., Alzheimer’s disease, Parkinson’s disease or related conditions, amyotrophic lateral sclerosis, glioblastomas…).

All these conditions have in common the fact that they impair patients’ autonomy, whether in terms of functional autonomy (moving, breathing, eating and drinking, speaking) or their decision-making autonomy, as cognitive impairments become increasingly common as the disease progresses. They are all likely to raise ethical issues, such as whether to pursue unreasonable persistence of treatment during an acute episode or what limits to set for longer-term care pathways.

Supporting people with neurological conditions requires taking these specificities into account with a view to providing appropriate care that aims to uphold the wishes of patients throughout their care journey, including at the end of life. 

Speakers :
Valérie MESNAGE
Neurologist specializing in the care of Parkinson’s disease and related conditions
Physician at the APHP Clinical Ethics Center
Member of the ARS Ile-de-France working group “Palliative Care and Neurodegenerative Diseases”
Former project manager at the National Center for Palliative Care and End-of-Life Care

Elsa MHANNA
MD, MSc, MA, MPH
Neurology, Neurosciences, Ethics
Functional Neurological Disorders Unit - Avicenne Hospital APHP
Co-chair of the Ethics Working Group of the French Society of Neurology
Secretary General of Donner des ELLES à la Santé