The role of palliative care in ALS/MND: Where are we and how can we do better? 

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

Today’s guest writer is Dr Simone Veronese, a palliative care physician with a deep interest in neurology. Simone is Head of Research in Palliative Care at Fondazione FARO, Turin, Italy, and a member of the European Association for Palliative Care (EAPC) Neurology Reference Group 


Although palliative care has an established role in almost all of the existing guidelines and protocols regarding the pathways of care of people affected by ALS/MND (amyotrophic lateral sclerosis/motor neurone disease), a great deal remains to do.

The United Kingdom’s NICE (National Institute for Health and Care Excellence) guidelines on Motor neurone disease: assessment and management recommend that the core multidisciplinary team should consist of healthcare professionals and other professionals with expertise in MND and should include a healthcare professional with expertise in palliative care; (MND palliative care expertise may be provided by the neurologist or nurse in the multidisciplinary team, or by a specialist palliative care professional). This may remain an ideal but is often not available to patients.

The EAPC Neurology Reference Group, in collaboration with the European Academy of Neurology Specialty Panel for Palliative Care, launched a survey for palliative care specialists to explore their involvement in ALS/MND care in 2021. Although a high number of responders declared to be involved in ALS / MND care, this may only be in the later stages of the disease progression, and the collaboration with neurology is limited and is rarely as part of the wider multidisciplinary team. A major barrier seems to be the reluctance of neurology to refer to palliative care, whereas patient and family reluctance is not a common reason for late referral to palliative care.

Research shows that a collaborative approach involving many services (primary care, neurology, gastroenterology, respiratory medicine, neuropsychology and palliative care) is the best way to provide care to ALS/MND patients and their loved ones. Services should be coordinated, with a key person or a team with whom the patient and family can have regular contact available for support and advice. The different roles, aims and timing of involvement of each service must be clear, and goals of care should be assessed and shared among professionals and users.3

There is now evidence that early palliative care is effective and sustainable in many conditions and that referrals should occur based on unmet needs rather than prognosis. In ALS/MND this is crucial, due to the various time points in the disease trajectory where good palliative care can make a real difference. Communication of the diagnosis, needs assessment, symptom control, psychosocial and spiritual issues, discussion of treatment options (PEG/NIV/IV), advance care planning (ACP) and end-of-life decisions, and bereavement care can all be triggers for appropriate referral.

So where are we now? We have reached a point of confidence on our role and ability to help but we still need:

  • To strengthen collaboration with neurologists and patients’ groups.
  • To be proactive offering our services to the multidisciplinary team for ALS/MND care.
  • To be aware of the potentiality of palliative care in helping patients and carers in all domains of their needs (anticipating crises, ensuring about the respect of choices and goals of care, spiritual care, practical help, bereavement).
  • To spread the good news within the palliative care community that ASL/MND sufferers are not difficult patients, rather they are people who might greatly benefit from our services and help.

References 

  1. National Institute for Health and Care Excellence.NICE Guidance on Motor Neurone Disease. 2016. NICE. www.nice.org.uk/NG42 [Accessed 23 November 2021].
  2. Oliver D. Borasio G.D., Cras P, Hepgul N, Lorenzl S, de Visser M, Vanopdenbosch L, Veronese S, Voltz R. A European Survey of the Palliative Care of People with Amyotrophic Lateral Sclerosis.  Abstracts from the 17th World Congress of the EAPC. Palliat Med 35 (1S): 154.
  3. Oliver DJ. Palliative care in motor neurone disease: where are we now? Palliat Care. 2019;12:1178224218813914. Published 2019 Jan 21. doi:10.1177/1178224218813914.

Links and resources 

  • Follow the Palliative Care and Neurology series on the EAPC blog. Next week, our guest writers will be Rachel Rutz Voumard, Ralf J Jox,
    Patrik MichelClaire J Creutzfeldt and Gian Domenico Borasio.
  • EAPC Neurology Reference Group (includes links to several useful publications and projects).
  • EAPC Neurology Reference Group Webinar – date to be announced soon. Follow us @EAPCvzw and the blog for latest information.

More about the author… 
Simone Veronese is a palliative care physician and head of research at Fondazione FARO, Turin, Italy.  View his academic profile and publications here. Contact him by email here.


PLEASE JOIN US AT EAPC 12TH WORLD RESEARCH CONGRESS ONLINE #EAPC2022 – registration opening soon at https://eapccongress.eu/2022

This entry was posted in EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, Neurology, SYMPTOM CONTROL and tagged , , , . Bookmark the permalink.

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