Palliative care is defined as “An approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO 2002). Many neurological diseases, in particular progressive neuromuscular diseases, are life threatening and palliative care is appropriate and helpful, with the timing and extent depending on the disease progression and the individual patient.
There is increasing interest in the provision of palliative care for people with neurological disease – often known as neuropalliative care. The palliative care approach should be provided by all neurology services as part of ongoing multidisciplinary care and support - good communication with patient and family, shared decision making and goal setting and symptom management. This is increasingly being recommended within guidelines. Close collaboration between services is important to support the care of patients, their families and the professional teams involved for more complex situations.
End of life care, the ethical issues which may be seen when caring for patients with neurological conditions – such as the withholding or withdrawal of treatment at the end of life - and care in bereavement are all important within palliative care. Neurology services will be able to provide this support, and specialist palliative care services may be able to provide extra support and advice with complex issues.
The Palliative Care Panel aims to encourage the development of palliative care for people with chronic progressive neurological disease. The following priorities derived from the EAN Strategic plan are of importance:
- Increase the availability and standards of neurological service by establishing evidence-based guidelines
- Increase the interest in palliative care by featuring at the scientific programme and at the educational courses at the annual EAN congress
This has been in collaboration with the European Association for Palliative Care and a Memorandum of Understanding was signed by the Presidents of the EAPC and EAN at the Congress in Copenhagen. The EAN and EAPC will continue to collaborate to help foster the development of care for patients, and their families, and to empower health care workers, in particular neurologists and palliative care physicians to offer the highest possible care.
Over recent years the Panel has collaborated on:
- A consensus review on the development of palliative care for patients with chronic and progressive neurological disease
- Developing a Core Curriculum for palliative care and neurology – with core educational aims for both neurologists and palliative medicine specialists.
- Developing sessions on palliative care for the EAN Congresses both at the Scientific and Educational Programme.
- Two on-line surveys across Europe on the collaboration between neurology ad palliative care
On the care of all neurological patients
On the care of people with ALS
- Building collaboration with the World Federation of Neurology and the International Neuro-Palliative Care Society
Meetings are held at the EAN Congress and on-line throughout the year.
A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.
Oliver DJ, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. Eur J Neurol 2016
EAN guideline on palliative care of people with severe, progressive multiple sclerosis.
Solari A, Giordanoa A, Sastre-Garriga J et al. European Journal of Neurology 2020