Early palliative care in progressive neurological diseases

Neuroscience is advancing rapidly, but there is still no prevention or cure for most common neurological diseases, suggested David Vodusek (University Medical Centre, Ljubljana, Slovenia), at the start of this EAN2020 session, and patient numbers are increasing with an aging population.

Aim of improving lives of patients living with brain conditions

The session was sponsored by the European Brain Council (EBC)¹, which brings together patients, clinicians, scientists and industry, to promote brain research, with the aim of improving lives of patients living with brain conditions.

Early introduction of palliative care

Dr Vodusek stressed the importance of introducing palliative care early in the disease course. This holistic approach focuses on relieving physical, psychosocial and spiritual suffering. But misconceptions, such as limited to end of life care, are still common. Neuropalliative care² is a growing field, with evidence of increased patient quality of life³ and lengthened lifespan⁴ from this multidisciplinary approach.

All neurologists should have basic palliative care skills

All neurologists should have basic palliative care skills, such as communicating bad news, suggested Dr Vodusek, reserving referral to palliative care speciality teams for more complex patients. Even early in the disease the palliative care approach can provide relief from pain and other distressing symptoms and ensure patients and carers have a support system in place. Advance care planning is an important component, and patients with neurological diseases may lose their ability to communicate early in the disease process.

Hospital deaths are high amongst patients with chronic neurological disorders⁵, whereas the majority of patients want to die at home⁶. Even without cure, there can still be the prospect of keeping the best possible quality of life and to die a peaceful death.

Defining severe disease

Palliative psychiatry is not provided explicitly said psychiatrist Philip Gorwood (Sainte-Anne Hospital, Paris, France), but it is a concept that should be embraced. Psychiatrists have similar aims to neurologists when it comes to addressing disease severity, including early detection, reduction in associated comorbidites, and support for carers.

Shift from ‘severe patients’ to ‘difficult to treat diseases’

A challenge in psychiatry is how to define severity, which can differ widely depending on the disease, from number of clinical symptoms to efficiency of treatment strategies. There are also significant discrepancies for the rating of severity between clinicians, patients and relatives, especially regarding ranking of symptom importance⁷. Dr Gorwood suggested we should shift the nomenclature from ‘severe patients’ to ‘difficult to treat diseases’.

When neurology and psychiatry overlap

Bruno Dubois (Salpetriere Hospital and Sorbonne Universite, France) discussed the challenges of managing behavioural and psychological symptoms of dementia (BPSD). The ALCOVE (ALzheimer COoperative Valuation in Europe) project⁸ has proposed holistic support systems for BPSD covering structures and care organisations, individualised patients and family carer interventions, and workforce and skills. Neurologists can contribute to all three dimensions, involving prevention and management of BPSD in ambulatory and hospital/nursing home settings.

Similar support systems could be developed for other neurological diseases such as Parkinson’s disease or multiple sclerosis.