The missing link between neurology and palliative care
Neuropalliative care is a young and developing subspecialty of both palliative care and neurology, in which the principles of palliative care are applied to neurologic care. Its focus is to improve the quality of life (QoL) of patients with serious neurologic diseases and their families.1 This is an important field as standard palliative care is not equipped to deal with the complex needs of patients with long-term neurological conditions.1,2 Potential uses for neuropalliative care go beyond neuro-oncology and neurologic intensive care, as it can be used in the outpatient or home setting with patients who have chronic and progressive neurologic diseases.3 But one of the most important aspects of neuropalliative care is that neurologists themselves can be the healthcare professionals who provide primary neuropalliative care to their patients.3
Myths and truths about palliative care
Common myths among healthcare professionals about palliative care are that it is interchangeable with hospice care, it means abandoning or giving up on your patients, or that it means providing no care at all.2 Contrary to these beliefs, palliative care as defined by the World Health Organization (WHO) is “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual”.4
What are the guiding principles and essentials skills needed?
For neuropalliative care to be effective, a certain skillset is required, as well as having established guiding principles. The fundamental guiding principles of neuropalliative care are to establish trusting relationships, practice shared decision-making, reduce suffering, to have mindful cultural awareness, and to examine opportunities for growth with the patient.1,5 The essential skills needed are the abilities to communicate bad news, facilitate difficult conversations, manage and evaluate nonmotor symptoms, advance care planning, assess caregivers, and to know when specialized palliative care referral is necessary.1,2
When can neuropalliative care be useful?
Neuropalliative care can be considered for all patients with long-term neurologic conditions. However, this is especially true for patients who are having swallowing problems, recurrent infections, or have had their first aspiration pneumonia.6,7 Additionally, patients who are experiencing significant declines in functional status, cognitive deterioration, weight loss, or who have major complex symptoms are also likely to benefit from neuropalliative care.6,7 Furthermore, a recent study on patients with progressive neurological diseases (Parkinson disease, multiple sclerosis, and motor neuron disease) revealed that neuropalliative care significantly decreased symptom burden while it also improved emotional and social functioning and improved global QoL.8
An important tool for improving QoL
Providing that extra layer of support for complex patients and their families, neuropalliative care could lead to improved QoL, whilst reducing the burden of care on family members or caregivers, and most importantly tackling complex medical, psychosocial and even spiritual issues.
More information on the emerging field of neuropalliative care is available at:
- The international Neuropalliative Care Society (INPCS) https://www.inpcs.org
- Education in Palliative and End-of-life care (EPEC) Neurology Curriculum – Teaches primary palliative care skills to healthcare professionals who provide neurological care, and covers the uniqueness of neuropalliative care https://www.inpcs.org/i4a/pages/index.cfm?pageid=3351
- Brizzi K, Creutzfeldt CJ. Neuropalliative Care: A Practical Guide for the Neurologist. Semin Neurol. 2018;38(5):569
- Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83(6):561.
- Solari A, Giordano A, Sastre-Garriga J, et al. EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis. J Palliat Med. 2020;23(11):1426.
- World Health Organization. Palliative World Health Organization 2022.
- Kluger BM, Vaughan CL, Robinson MT, Creutzfeldt C, Subramanian I, Holloway RG. Neuropalliative care essentials for the COVID-19 crisis. Neurology. 2020;95(9):394
- Chang RS, Poon WS. “Triggers” for referral to neurology palliative care service. Ann Palliat Med. 2018;7(3):289
- Hussain J, Adams D, Allgar V, et al. Triggers in advanced neurological conditions: prediction and management of the terminal phase. BMJ Support Palliat Care 2014;4:30–3
- Bužgová R, Kozáková R, Bar M. The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study. BMC Palliat Care. 2020;19(1):143. Published 2020 Sep 16.