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EAN 2025 | Navigating autonomy and vulnerability: assisted dying in patients with neurological conditions

David Oliver, BSc, FRCP, FRCGP, University of Kent, Kent, United Kingdom, comments on the complexities of assisted dying for patients with neurological diseases, highlighting the potential vulnerabilities of patients. He emphasizes the importance of ensuring patients receive adequate palliative care to address their symptoms and needs, and notes that this is a challenging area that will become increasingly prominent as more countries consider assisted dying. This interview took place at the 11th Congress of the European Academy of Neurology (EAN 2025) in Helsinki, Finland.

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Transcript

We had a controversy session so we talked about the role of assisted dying that was from a colleague in neurology and I was talking about the difficulties that there can be particularly with neurological disease where people may be vulnerable. They may have depression, anxiety, they may have cognitive change so that they’re less able to make decisions for themselves, they may be feeling a particular burden and they may have particular fears about the future...

We had a controversy session so we talked about the role of assisted dying that was from a colleague in neurology and I was talking about the difficulties that there can be particularly with neurological disease where people may be vulnerable. They may have depression, anxiety, they may have cognitive change so that they’re less able to make decisions for themselves, they may be feeling a particular burden and they may have particular fears about the future. In MND/ALS many patients fear the future and fear dying because they’ve heard that people may choke to death or have a very distressing death. Actually the evidence with good palliative care is that that’s very very rare and people die very similarly to other disease groups. But many patients still fear the future and fear that they may have a distressing death and that I think might color what their decisions so we talked about the need that patients may want to express their autonomy and say this is what I want, I want to have an assisted death and in certain legislations that’s possible but at the same time it is important to ensure that people do experience and have palliative care so that their symptoms, their issues can be addressed and that for a large proportion of patients that may be what is needed rather than an assisted death. It is a difficult area and an issue that’s going to become more and more prominent with discussion over the coming years as more countries have the option of assisted dying. In the UK it may become legal in the coming years and we will have to face how we help patients cope with those decisions and how we support them and their families. Within palliative care we always talk about the patient but we’re very much looking at caring for their wider family before the person dies and continuing into bereavement. So it’s important to ensure that families have that opportunity to have their own support needs met.

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