New guideline on palliative care for people with severe multiple sclerosis

Professor David Oliver, Honorary Professor at the University of Kent, UK, and Chair of the European Association for Palliative Care (EAPC) Reference Group on Neurology and Palliative Care, introduces the new guideline on palliative care for people with severe multiple sclerosis – and it’s OPEN ACCESS…

Professor David Oliver, Chair of the EAPC Reference Group on Neurology and Palliative Care.

A new guideline has just been published on palliative care for people with severe multiple sclerosis (MS).  There has been increasing interest in palliative care for people with neurological disease and in 2016 the European Academy of Neurology and the EAPC collaborated on the Consensus document on palliative care for people with progressive neurological disease. (1)

Led by Dr Alessandra Solari from Milan, the guideline includes representatives from the EAPC, European Academy of Neurology (EAN), European Network for Best Practice and Research in MS Rehabilitation (RIMS), the MS International Federation (MSIF), and the European Committee for Treatment and Research in MS (ECTRIMS). The group comprised 21 members from nine countries and three main disciplines, and included patient representatives. The group of patients studied were those with severe MS – requiring constant bilateral support to walk 20 metres without resting (Expanded Disability Status Scale score > 6.0), or higher disability.

The guideline looked at 10 main areas:

  • The role of palliative care
  • The role of specialist palliative care
  • Advance care planning
  • Discussion with health professional about hastening death
  • Symptom management
  • Multidisciplinary rehabilitation
  • Caregiver education / training
  • Caregiver practical / emotional support
  • MS health professional education/ training in palliative care
  • Specialist palliative care professional education/ training in MS.

Members of the task force that developed the guideline on palliative care for people with severe multiple sclerosis.

The questions were developed within the group and rated for importance by the group and a client consultation panel, with people with MS from across Europe in MS Societies (2).Once the questions had been agreed, a Patients-Intervention-Comparator-Outcome (PICO) was developed for each one. A literature search was undertaken for each question and the group then graded the research using the GRADE (Grading of Recommendations, Assessment, Development and Evaluations) process before coming to a consensus decision on recommendations.

Thirty-four recommendations and seven good practice statements were made from the assessment of the 10 questions. In many cases, there was very little evidence and this was of variable quality. The main recommendations are:

  • Home care palliative care is recommended for people with severe MS – weak strength recommendation
  • Further research is needed on the integration of MS and palliative care – especially:
    • Advance care planning
    • Symptom management – fatigue and mood
    • Interventions to help caregivers.

The Guideline is now available: on the EAN website and co-published in both the European Journal of Neurologythe official publication of the EAN, (2) and Journal of Palliative Medicine (an official journal of the EAPC). (3)


1Oliver 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. 

2. Solari , A. Giordano, J. Sastre-Garriga, S. Kopke, A. C. Rahn, I. Kleiter, K. Aleksovska, M. A. Battaglia, J. Bay, M. Copetti, J. Drulovick , L. Kooij, J. Mens, E. R. Meza Murillo, I. Milanov, R. Milo, T. Pekmezovic, J. Vosburgh, E. Silber , S. Veronese, F. Patti, R. Voltz, D. Oliver on behalf of the guideline task force. EAN guideline on palliative care of people with severe, progressive multiple sclerosis. European Journal of Neurology 2020, 0: 1–20.

3. Alessandra Solari, Andrea Giordano, Jaume Sastre-Garriga, Sascha Köpke, Anne C. Rahn, Ingo Kleiter, Katina Aleksovska, Mario A. Battaglia, Jette Bay, Massimiliano Copetti, Jelena Drulovic, Liesbeth Kooij, John Mens, Edwin R. Meza Murillo, Ivan Milanov, Ron Milo, Tatiana Pekmezovic, Janine Vosburgh, Eli Silber, Simone Veronese, Francesco Patti, Raymond Voltz, David J. Oliver, on behalf of the Guideline Task Force. EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis Journal of Palliative Medicine. Ahead of print.


This entry was posted in EAPC-LINKED JOURNALS, Journal of Palliative Medicine, Neurology and tagged , . Bookmark the permalink.

1 Response to New guideline on palliative care for people with severe multiple sclerosis

  1. Michael says:

    Proper care is probably the most important thing when it comes to managing MS symptoms. Strong will from the patient also plays a major role from what I’ve experienced… A friend of mine just gave up when he noticed the first symptoms and was diagnosed with MS… The disease progressed so quick that you could see worsening of the symptoms on a weekly basis until it was too late…

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