Are patients with neurological disease losing out on palliative care?

CELEBRATING WORLD HOSPICE AND PALLIATIVE CARE DAY 2021. THIS YEAR’S THEME IS LEAVE NO ONE BEHIND – EQUITY IN ACCESS TO PALLIATIVE CARE

In a special series, EAPC task forces and reference groups that work on behalf of vulnerable communities explain what they are doing to enable equity in access to palliative care. Today’s Guest Writer is Professor David Oliver, Tizard Centre, University of Kent, Canterbury, UK, and Chair of the European Association for Palliative Care (EAPC) Neurology Reference Group.

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

Equity in access to palliative care for all people who may benefit is essential as suggested in the theme for this year’s World Hospice and Palliative Care Day.  One group of people that often do lose out are those with neurological disease.

Neurological disease is a major cause of disease and distress across the world with neurological disease being the major cause of disability and the second leading cause of death. (1) Palliative care has a role in the care of many people with neurological disease, who face many issues: physical, such as symptoms or cognitive change; psychological with the multiple losses which may be faced; social with many issues for families, such as coping with disability and uncertainty; and spiritual/existential fears and concerns.

Palliative care services have often been associated only with the care of people with malignant disease, and in many areas this remains so.  However, neurological disease was seen as an area for palliative care from the early days of the modern hospice movement and St Christopher’s Hospice in London included people with neurological disease from its opening, by Cicely Saunders, in 1967.  However, this has often been only for those with progressive neurological disease, such as motor neurone disease / amyotrophic lateral sclerosis (MND/ALS).

In 2016, the European Association for Palliative Care and the European Academy of Neurology palliative care groups collaborated on a consensus document of progressive neurological disease. (2)  This emphasised the role of palliative care from early in the disease progression.  And equally the needs of patients and their families to be assessed and managed effectively throughout the progression of the disease, rather than just providing care at the end of life.  Patients and their families may have particular issues due to the uncertain trajectory of neurological disease, the lack of knowledgeable support in many communities, the young age of many patients and the ethical challenges of the decisions about starting and withdrawing interventions, such as feeding or ventilatory support.

Over the years there has been an increasing awareness of the role of palliative care and many guidelines have recommended early palliative care and the involvement of palliative care within multidisciplinary teams. (3)

However, many people with neurological disease still do not receive the care they need. There is a need for greater collaboration with neurology services and increased awareness and education of neurologists and the wider multidisciplinary team. This is not only for the progressive neurological diseases, such as MND/ALS, Parkinson’s disease and related disorders, multiple sclerosis, Huntington’s disease and dementia, but also where the prognosis may be more uncertain, such as in stroke.  This may be by the close collaboration with, and support of, specialist teams as well as being open to referrals from neurology. There may also be the need for palliative care teams to be involved in specific issues when there are more complex physical or ethical dilemmas, or complex discussions about goals of care and advance care planning. The ongoing care may then continue with the wider MDT and the palliative care team may collaborate again when further issues develop as the disease progresses. This care may thus be episodic with varying involvement of palliative care – a challenge to palliative care services, where often we continue providing care until death.

A survey of neurologists and palliative care specialists across Europe showed that there was widespread collaboration for MND/ALS and cerebral tumour but lower involvement for other disease groups. (4) The reluctance of neurology services to refer was not uncommon – reported by 43 per cent of those responding to the survey – but the reluctance of patients and relatives and families for palliative care was rarer – less than 15 per cent.

There is a challenge to all to improve the access for palliative care. The education of neurologists in palliative care and palliative care specialists in neurology is important, to increase awareness of the issues and the possibilities of the care that may be provided. Close collaboration is important, so that we can work together and share our experiences with the aim of improving the care of people with neurological disease.

Two dates for your diary!

The EAPC Neurology Reference Group is looking forward to launching a new series dedicated to Palliative Care and Neurology on the EAPC blog on 1 November, and also plans to hold a webinar. With a line-up of international contributors, we can promise you some interesting discussion so please join us. And do consider attending the  1st International Conference Online of the Neuropalliative Care Society  on 4 to 6 November. It’s FREE of charge – register here.

References

1. Feigin VL, Vos T, Nichols E et al. The global burden of neurological disorders: translating evidence into policy. Lancet Neurology 2020; 19:255-65.
2. 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.  https://doi.org/10.1111/ene.12889
3. National Institute for Health and Care Excellence. NICE Guidance on Motor Neurone Disease. 2016. NICE. nice.org.uk/NG42.
4. Oliver D, Borasio GD, Veronese S, Voltz R, Lorenzl S, Hepgul N. Current collaboration between palliative care and neurology: a survey of clinicians in Europe. BMJ Support Palliat Care 2020; doi 10.1136/bmjspcare-2020-002322

Links and resources

• Contact Professor David Oliver by email.
• Find out more about the EAPC Neurology Reference Group.
• Read more posts about Palliative Care and Neurology on the EAPC blog.
• Follow the World Hospice and Palliative Care Day series on the blog.
• #LeaveNoOneBehind21  #WHPCD21

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, United Kingdom. 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. 

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