The American Academy of Neurology have recenty issued a guideline on neuro-palliative care – the palliative, holistic care provided for people with neurological disorders by neurologists. This is increasingly recognised , particularly in the USA, and worldwide with the establishment of the International Neuro-Palliative Care Society (inpcs.org).
The aim of neuro-palliative care is to improve the quality of life of patients and family, usually within a multidisicplinary approach. This may be considered earlier in the disease and will include end of life care – although in the USA this is often seen as „hospice“ care, which only provides comfort care, in many other countries specialist palliative care / hospice care may collaborate with neurology services in providing care people with more complex issues.
Neurologists will be closely involved in ongoing patient care and need education and training in communication in serious illness, allowing patients and families to discuss the decisions in care, prognosis and their goals of care. This may be more complex when there is, or a strong possibility of the development of, cognitive change.
Neuropalliative care may be appropriate in many different areas in neurology:
- Paediatrics and neonatology – with major neurodevelopmental disorders, syndromes and genetic disorders
- Acute neurological illness – such as locked in syndrome or stroke, where there may be much uncertainty in prognosis
- Neuro-oncology – coping with cognitive change and communication issues with patients and families
- Dementia – the early involvement of decision making and advance care planning
- ALS/FTD – with advance care planning and careful communication and decision making, particularly with the increased awareness of cognitive change
- Parkinson’s disease and related disorders – the benefits of early intervention, according to need, have been shown with improved quality of life and increased advance care planning
- Ethical dilemmas are commonly met – the refusal or withdrawal of treatment, the consideration of sedation for refractory symptoms and in many legislations lawful physician hastened death (euthanasia and physician assisted suicide)
There is a need for increasing education of neurologists in the principles of neuro-palliative care and the development of research into this area. Neurologists need to be able to attend to the palliative care needs of patients and families, in collboration with specialists when the issues are more challenging.
This Clinical Guidance is very helpful in demonstrating the role of neuro-palliative care and the need for further development of this area, greater education and training and the establishment of an evidence base through research.
- Taylor LP, Besbris JM, Rubin MA et al, Clinical Guidance in Neuropalliative Care . An AAN Position Statement. Neurol 2022; 98: 409-416. Doi: 10.1212/WNL.0000000000200063
- Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol 2016;23: 30-38. doi:10.1111/ene.12889