Palliative care in neurology

David Oliver is an honorary professor at the University of Kent in the UK, a board member of the European Association for Palliative Care and a retired consultant in palliative medicine.

Professor David Oliver

Palliative care featured again at the Congress of the European Academy of Neurology (EAN) in Amsterdam at the end of June 2017. There has been a developing collaboration between the EAN and the European Association for Palliative Care (EAPC) and in 2016 Professor Phil Larkin, President of the EAPC, and Professor Gunther Deuschl, President of the EAN, signed a Memorandum of Understanding, formalising this collaboration. (See an earlier blog post).

There was a session on End of Life Care at this year’s EAN Congress. I spoke on the role of palliative care in neurology and the development of the Consensus document on neurological palliative care produced by the EAN and EAPC. 1 I talked about the role of palliative care earlier in the disease progression and how this earlier care could profoundly influence the opportunity to provide end of life care, allowing patients to die peacefully. Dr Simone Veronese from Turin presented the growing evidence base for palliative care for neurological patients, including the studies he has led showing that quality of life and symptoms improves by integrating palliative care as disability progresses and symptoms increase. 2

Professor Christina Faull, from LOROS Hospice and De Montfort University in Leicester, UK, discussed the issues if treatment is withdrawn at the patient’s request. She encouraged the delegates to consider the ethical and practical issues, particularly when withdrawing ventilation for a person with amyotrophic lateral sclerosis/motor neurone disease. She included recent research on the experiences of professionals and families following withdrawal of ventilation and the development of UK Guidelines published by the Association for Palliative Medicine. 2

Conference speakers (left to right):
Prof Christina Faull, Prof David Oliver and Dr Simone Veronese

More than 50 people attended the session – at 8.00am on a Sunday morning! We were very pleased that so many people came and participated in this meeting. There was a real interest in palliative care and we look forward to a joint symposium at the Congress in 2018 in Lisbon.

There was also the opportunity to meet with representatives of the EAN. I had a very fruitful discussion with EAN President elect – Professor Franz Fazekas – and Professor Marianne de Visser, Co-Chair of the Palliative Care Scientific Panel, during which we strengthened the ongoing collaboration. The EAPC now has a Reference Group on Neurological Palliative Care, allowing continuing discussion with the EAN scientific panel on palliative care, both of which I currently chair. There is also increasing collaboration with other panels of the EAN, and involvement in the development of guidelines.

This was a very successful and rewarding congress and there is a real spirit of collaboration with the aim of improving care for patients with progressive neurological disease across Europe. 

Link and References

  1. 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.1288
  2. Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Cavalla P, Zibetti M, Rivoiro C, Oliver DJ. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL, a pilot randomized controlled study. BMJ Supp and Pall Care 2015; 0:1-9. Doi: 10.1136/bmjspcare-2014-000788.
  3. Faull C. Withdrawal of ventilation at the request of a patient with motor neurone disease: guidance for professionals. Association for Palliative Medicine of Great Britain and Ireland, 2015.

 

 

 

 

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