Palliative Care and Neurology – launch of special series on EAPC blog

In partnership with the European Association for Palliative Care (EAPC) Neurology Reference Group, we are launching a new series where practitioners and researchers will share their experiences in supporting people affected by neurological disease.

Today’s guest writer is Professor David Oliver, Tizard Centre, University of Kent, Canterbury, United Kingdom, and Chair of the EAPC Neurology Reference Group.

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Palliative care has often been associated with cancer care, although patients with motor neurone disease/amyotrophic lateral sclerosis (MND/ALS) and multiple sclerosis were admitted to St Christopher’s Hospice in London from the time of its opening in 1967. Many specialist palliative care services do see neurological patients, although this is often MND/ALS patients and more rarely other progressive diseases.

However, many studies have shown the profound and ongoing needs of people with neurological disease. These encompass all the areas of palliative care:

• Physical – with many severe symptoms, which may require a multidisciplinary approach to manage.
• Psychological – the fears of the disease, and often of the deterioration in the later stages.
• Social aspects – with changes in roles within families, long-term care needs, difficulties in coping with cognitive change and loss.
• Spiritual – existential issues as someone faces continual loss – of physical abilities, cognition and social interaction if cognition and speech are lost.

There may also be profound ethical issues to face, such as discussions about the use or withdrawal of ventilation for someone with respiratory failure due to MND/ALS, or the consideration of gastrostomy feeding when swallowing is altered.

All these issues require a multidisciplinary approach. This may be provided by the primary neurological team, the neurology team with collaboration with specialist palliative care or, as in the USA where the concept of neuropalliative care is developing, with neurologists receiving palliative care training and supporting patients and families. Specialist palliative care may be needed to help with complex issues or ethical considerations.

The EAPC Neurology Reference Group has recently collaborated with the European Academy of Neurology (EAN) Palliative Care Specialty Panel in undertaking a European-wide survey of collaboration. This showed that there were often close relationships in the care of people with MND/ALS and cerebral tumour but less contact for other diseases. However, there appeared to be an interest in developing care for other neurological diseases.

The EAPC Reference Group works closely with the EAN Panel, and we want to encourage greater collaboration and knowledge of palliative care in all areas of neurology. In particular:

• Working together to encourage more education – of palliative care professionals in neurology and neurologists in palliative care
  • • Encouraging sessions at both the EAPC and EAN conferences.
    • Collaborating with the UEMS – European Union of Medical Specialists – to develop palliative care within the neurology curriculum.
    • Looking at the development of educational materials available through the EAPC. (We are already planning to produce an EAPC webinar to complement the current series on the blog).
• Looking at research about neurological palliative care
• Collaborating with other organisations worldwide
  • • The World Federation of Neurology
    • The International Neuropalliative Care Society (which has recently formed and is holding a FREE online conference from 4 to 6 November 2021. Register here).

Follow the Neurology and Palliative Care series on the blog

Over the coming weeks, we shall be publishing posts on various aspects of neurological palliative care. So far, we have lined up contributors from Germany, Italy, Switzerland and Wales, UK. Their contributions will include the role of palliative care in ALS/MND, evaluating and implementing comprehensive care for patients with ALS as part of a specialist home palliative care service, the EAN Guideline on Palliative Care in people with severe, progressive multiple sclerosis, ethical aspects of care for people with neurological disease and the challenges of research in this area. To help you dive further into the evolving specialty that is neuropalliative care, Barry Ashpole has compiled a comprehensive digest of recent journal abstracts, mostly with access to the full-text article.

Next week’s guest writer is Dr Siwan Seaman, Consultant in Palliative Medicine at Marie Curie Hospice Cardiff and the Vale, Penarth, Wales, United Kingdom, who runs a multidisciplinary clinic for patients with motor neurone disease (amyotrophic lateral sclerosis).

If you are interested in learning more about the work of the EAPC Neurology Reference Group, please email Professor David Oliver, or visit our webpage.

Links and resources

• Follow the Palliative Care and Neurology series on the EAPC blog (with many other previously published posts on this topic).
• Neurological Palliative Care:  FREE webinar presented by the EAPC Neurology Reference Group, Thursday 27 January 15.00 CET. Register at https://bit.ly/3AaIDTU
• EAPC Neurology Reference Group (includes links to several useful publications and projects).

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More about the author

David Oliver is chair of the EAPC Neurology Reference Group, a former board member of the European Association for Palliative Care and an honorary professor at the University of Kent, Canterbury, UK. During his long career in palliative care as a clinician and academic, he has lectured extensively throughout the world and has contributed to many books and journal articles relating to neurology in palliative care. Read more about David here.