Professor David Oliver, University of Kent, UK, is Chair of the European Association for Palliative Care (EAPC) Reference Group on Neurology and a member of the management group of the European Academy of Neurology (EAN) Palliative Care Scientific Panel.
Professor David Oliver.
The EAPC Reference Group on Neurology and the European Academy of Neurology Palliative Care Scientific Panel have enjoyed close working links since 2016. We are now delighted to embark on another joint Europe-wide survey that aims to help in the development of care and services for people with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND). We would like to encourage all involved in palliative care to take part in the survey.
Palliative care and ALS / MND
The care of people with ALS/MND has included palliative care for many years. Patients with ALS/MND were admitted to St Christopher’s Hospice from the very early days back in 1967. People with ALS/MND face a progressive deterioration and many symptoms. These include increasing muscle weakness, affecting arms, legs, often speech and swallowing and, later in the disease, respiratory muscle weakness, that leads to death after two to three years for most people. Thus, palliative care has a real role in their care, as people are faced with these physical issues as well as many psychological problems too, including cognitive changes in up to 40 per cent, and fronto-temporal dementia in up to 15 per cent.
The family caregivers face many changes and pressures, coping with the person with a deteriorating condition and their own reactions and emotions in caring – physical challenges as well as emotional / psychological issues. There may be similar issues for professional carers, as they care for someone who deteriorates during their care.
Often, people with ALS/MND are involved in the discussions with assisted dying, as they fear the process of dying. There are concerns that dying with ALS/MND is distressing with pain and dyspnoea, although several studies have shown that symptoms can be managed effectively at the end of life. 1 However, stories about distressing deaths are still discussed and publicised, as though they are the norm, when in reality they are not. There may also be many ethical issues arising in care, in particular the withdrawal of ventilation at the end of life, where palliative care services may be very helpful in these difficult discussions.
Collaboration between palliative care and neurology – can we do better?
The involvement of palliative care services with people with ALS/MND is variable – across and within countries in Europe. A survey of palliative care specialists and neurologists in 2018, organised by the EAPC Reference Group on Neurology and a group from the European Academy of Neurology, did show that ALS/MND was one of the common diagnoses, together with cerebral tumours, where there was good collaboration between the two specialities. 2 However, when this may occur and to what extent is unclear.
Many guidelines, including the UK National Institute for Health and Care Excellence Guideline on MND 3 and the European guideline, 4 suggest palliative care involvement early in the disease progression but there is anecdotal evidence that patients may only be seen at the end of life.
Please complete the survey…
The survey conducted by the EAPC Reference Group on Neurology and EAN Palliative Care Scientific Panel seeks input from palliative care specialists across Europe. We want to know more about the level of collaboration and the timing of involvement, and we encourage all of you involved in palliative care to take part.
The survey is available at https://www.smartsurvey.co.uk/s/NNK7YZ/and takes 15 to 20 minutes to complete. The link is now open and will remain so until the end of November. The aim is to help in the development of care and services for people with ALS/MND. Please do help us improve care for people with ALS/MND and their carers.
References
- Neudert C, Oliver D, Wasner M, Borasio GD. The course of the terminal phase in patients with amyotrophic lateral sclerosis. Journal of Neurology 2001; 248: 612-616.
- 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.
- National Institute for Health and Care Excellence. Motor neurone disease: assessment and management. NICE Guideline NG 42. NICE 2016. www.nice.org.uk/guidance/NG42
- Anderson PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, Hardiman O, and the members of the EFNS Task Force. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis: revised report of an EFNS task force. Eur J Neurol 2012; 19: 360-375.
Links
- Contact Prof David Oliver by email.
- Please complete the survey here.
- European Association for Palliative Care Reference Group on Neurology.
- Read more posts about Palliative Care and Neurology on the EAPC blog.
EAPC Blog 
Professor Oliver is right to point out the important role of palliative care in the management of those suffering from ALS/MND. But it is not possible, nor indeed ethical, to consider the developments of support services in the 21st century without: a. involving those experiencing the disease, and b. offering all the choices that are available – and that must include assisted dying. A MNDA survey in the UK in 2012 found with regard to end of life care that “having a voice and self determination” were priorities for patients. To imply, as Professor Oliver does, that assisted dying is not necessary because “symptoms can be managed effectively at the end of life” when the paper referenced gives the symptoms most frequently reported in the last 24 hours as dyspnoea, cough, anxiety and restlessness is disingenuous. In addition the fear of “choking to death” needs to be further examined. What it means to us as doctors or health care professionals may not be what it means to a lay person. There is no evidence that a person dying with MND, experiencing shortness of breath and/or cough, does not feel/think they are choking to death. As a retired palliative care physician I know how I would want to die should I ever suffer from MND – and that would be by an assisted death.”
As a nurse of over 40 years experience and as someone living with MND I welcome Dr Oliver’s efforts to improve palliative care but there are two aspects in his blog that concern me greatly. Firstly, if we are serious about patient-centred palliative care it is imperative that individuals living with MND are consulted so that changes to care are meaningful and reflective of the realities that people like me face. Secondly, throughout my career I have witnessed many distressing deaths and felt fairly helpless to alleviate the situation. These are not “stories”. Palliative Care certainly does not have all the answers. I know this as a fact which is why I would like to have the option of an assisted death alongside high quality palliative care. To suggest that I care about having such choice and control at the end of my life because of “stories” that I may have read is truly disappointing. I ask therefore, to please involve us and to listen to us so that care for people living with and dying with MND achieves true excellence.