EAN 2025 | Insights from the EAPC / EAN surveys about collaboration between neurologists and palliative care

Yes, we’ve undertaken two surveys over the years and what has come out is that there is often collaboration particularly for MND or ALS and cerebral tumor, but there may be much less for other progressive neurological diseases. Some involvement with Parkinson’s disease and the Parkinson-like syndromes, but much less with something like Huntington’s disease. So I think it’s encouraging everyone to have a think about the future. How do we have that collaboration? And there was a lot of evidence of very good collaboration between palliative care services and neurology. But the issues that did seem to come out was sometimes that the palliative care providers felt that neurologists were reluctant to refer someone to palliative care and that may be their own concerns about the person, the difficulties of having those discussions. But interestingly at the same time we found that only 10 or 15 percent of the people who responded to our survey felt that family or patient concerns would stop them making that referral. Patients and families are very open if there is a good explanation about what palliative care is. There is still a lot of people who think that palliative care is just end-of-life care and that once you’ve seen someone from palliative care you’re going to die in the next few days or weeks. We’ve been spending many years saying palliative care is according to your need, not your diagnosis or your prognosis. So it’s trying to help people to see that it’s something to improve their quality of life, improve what they want to do, rather than just being prepared for the end of life. So I think that was the main point that we want to see, is to help neurologists work with palliative care, and also palliative care services to work with neurology. And part of that is to ensure there’s education both ways around. So the neurologists learn more about palliative care and palliative care services and physicians learn more about neurology. And then get together and work together and collaborate. And that can be very helpful as part of a wider multidisciplinary team. And I think the way forward is to look at multidisciplinary team care for people with progressive disease. In MND-ALS, there is evidence that having a multidisciplinary team approach helps people live for longer as well as have a better quality of life. So I think if we can take that into other progressive diseases like Parkinson’s, MSA, PSP, Huntington’s disease and dementia, that would be an enormous change for people’s quality of life and their families as well.

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