The paper reports on the EURO-NEURO survey that was undertaken at the end of 2018. The survey was publicised by the EAN and EAPC and 298 people completed the questionnaire – 178 palliative care specialists from 14 countries and 120 neurologists form 20 countries. The participants were members of multidisciplinary teams, although palliative care teams were less likely to involve occupational therapists and speech and language therapists and neurology teams involved fewer occupational therapists, social care and spiritual care.
There was widespread collaboration, especially for ALS and cerebral tumours, with less involvement for other neurological diseases. Regular telephone contact and joint clinics were the commonest ways of collaboration.
Specialist palliative care specialists felt that neurologists were reluctant to refer to palliative care and neurologists were concerned that there were often limited palliative care resources or a reluctance to become involved with neurological patients. However, the reluctance of patients and families to accept palliative care was unusual.
Collaboration was seen as helpful in maintaining quality of life, caregiver support, psychological support, advance care planning and complex decision making. Both specialties realised that they lacked experience and knowledge about the other area and would benefit from further educational and training
This paper is important in helping to understand how palliative care and neurology can collaborate and will hopefully encourage further development and education. In this way the care offered to patients with neurological disease, who face severe disability and reduced life expectancy can be improved.
- This paper presents the results of the EURO-NEURO survey of neurologists and palliative care specialists, undertaken as a collaboration between the EAN and European Association for Palliative care
- There is widespread collaboration – particulate for ALS and cerebral tumours
- There were barriers to collaboration – financial and resource issues and reluctance to refer patients or to become involved in their care
- Patients and family concerns about palliative care were not common barriers to collaboration – reported by only 10-15% of participants
- There is a need for further education and training of both specialities to help develop collaboration
Oliver D, Borasio GD, Veronese S, Voltz R, Lorenzl S, Hepgul N. Current Collaboration between palliative care and neurology: a survey of clinicians in Europe. BMJ Supp Palliat Care 2020