Palliative care

General information about sub-specialty

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.  

About the EAN Scientific Panel Palliative Care

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

 

Management Group

Vanopdenbosch, Ludo

Co-Chair

Vanopdenbosch, Ludo
Brugge, Belgium
Veronese, Simone

Co-Chair

Veronese, Simone
Torino, Italy
Guijarro-Castro, Cristina
Guijarro-Castro, Cristina
Madrid, Spain
Oliver, David
Oliver, David
Rochester, United Kingdom
Rukavina, Katarina
Rukavina, Katarina
LONDON, United Kingdom
Tudor, Katarina Ivana
Tudor, Katarina Ivana
Zagreb, Croatia

Individual panel members

Calvo, Andrea
Calvo, Andrea
Torino, Italy
Cras, Patrick
Cras, Patrick
Edegem, Belgium
De Visser, Marianne
De Visser, Marianne
Amsterdam, The Netherlands
Oliver, David
Oliver, David
Rochester, United Kingdom
Solari, Alessandra
Solari, Alessandra
Milan, Italy
Voltz, Raymond
Voltz, Raymond
Cologne, Germany
Weber, Markus
Weber, Markus
St. Gallen, Switzerland

RRFS Member

Di Lorenzo, Francesco
Di Lorenzo, Francesco
Rome, Italy
Filip, Rafaela Ruxandra
Filip, Rafaela Ruxandra
Brasov, Romania
Pinna, Francesca
Pinna, Francesca
Osilo, Italy
Pîrlog, Bianca-Oana
Pîrlog, Bianca-Oana
Cluj-Napoca, Romania
Tudor, Katarina Ivana
Tudor, Katarina Ivana
Zagreb, Croatia

Student Member

Duarte, Alexia

Student Member

Duarte, Alexia
Curitiba, Brazil
Gutic, Faruk

Student Member

Gutic, Faruk
Sarajevo, Bosnia and Herzegovina
Leite Guedes, Idrys Henrique

Student Member

Leite Guedes, Idrys Henrique
Campina Grande, Brazil
Murasan, Iulia-Maria

Student Member

Murasan, Iulia-Maria
Brasov, Romania

Partner Society Representatives

Oliver, David

EAPC representative

Oliver, David
Rochester, United Kingdom

Patient Representative

Jaarsma, Joke

Patient representative

Jaarsma, Joke
Amsterdam, The Netherlands

Institutional panel members

Anghel, Daniela Nicoleta
Anghel, Daniela Nicoleta
Bucureşti, Romania
Autere, Jaana
Autere, Jaana
70840 Kuopio, Finland
Binck, Sylvia
Binck, Sylvia
Luxembourg, Luxembourg
Bogdanov, Enver
Bogdanov, Enver
Kazan, Russian Federation
Bošković Matić, Tatjana
Bošković Matić, Tatjana
Kragujevac, Serbia
Bombaci, Alessandro
Bombaci, Alessandro
Turin, Italy
Çevik, Mehmet Uğur
Çevik, Mehmet Uğur
Diyarbak?r, Turkey
Danel, Véronique
Danel, Véronique
France
Danel Brunaud, Véronique
Danel Brunaud, Véronique
Lille, France
De Visser, Marianne
De Visser, Marianne
Amsterdam, The Netherlands
Deretzi, Georgia
Deretzi, Georgia
Thessaloniki, Greece
Dušek, Pavel
Dušek, Pavel
Praha 2, Czech Republic
Evdokimidis, Ioannis
Evdokimidis, Ioannis
Athens, Greece
Garcez, Daniela
Garcez, Daniela
Amadora, Portugal
Guijarro-Castro, Cristina
Guijarro-Castro, Cristina
Madrid, Spain
Horn, Morten Andreas
Horn, Morten Andreas
Oslo, Norway
Istratii, Diana
Istratii, Diana
Chisinau, Moldova
Karapanayiotidis, Theodoros
Karapanayiotidis, Theodoros
Thessaloniki, Greece
Kesenheimer, Eva
Kesenheimer, Eva
Basel, Switzerland
Koritnik, Blaž
Koritnik, Blaž
Ljubljana, Slovenia
Lorenzl, Stefan
Lorenzl, Stefan
Salzburg, Austria
Maslarov, Dimitar
Maslarov, Dimitar
Sofia, Bulgaria
Mckenna, Mary Clare
Mckenna, Mary Clare
Dublin, Ireland
Milosevic, Vuk
Milosevic, Vuk
Nis, Serbia
Nazliel, Bijen
Nazliel, Bijen
Ankara, Turkey
Novak, Helmut F.
Novak, Helmut F.
Salzburg, Austria
Plesca, Svetlana
Plesca, Svetlana
Chisinau, Moldova
Pucci, Eugenio
Pucci, Eugenio
fermo, Italy
Roddate, Marija
Roddate, Marija
Riga, Latvia
Roesler, Cornelia
Roesler, Cornelia
Salzburg, Austria
Rushkevich, Yuliya
Rushkevich, Yuliya
Minsk, Belarus
Sipos-Lascu, Diana
Sipos-Lascu, Diana
Cluj-Napoca, Romania
Szok, Délia
Szok, Délia
Szeged, Hungary
Valante, Ramona
Valante, Ramona
Riga, Latvia
Vanopdenbosch, Ludo
Vanopdenbosch, Ludo
Brugge, Belgium
Velon, Ana Graça
Velon, Ana Graça
Vila Real, Portugal
Weber, Markus
Weber, Markus
St. Gallen, Switzerland