What is the role of Early Palliative Care (EPC) in neurology for patients with serious and chronic neurological conditions?

Early Palliative Care in Neurology: Role and Implementation

Early palliative care should be integrated from the time of diagnosis for patients with serious and chronic neurological conditions to reduce symptom burden and improve quality of life for patients and their caregivers. 1, 2

Rationale for Early Palliative Care in Neurology

• Patients with serious neurological conditions present with complex palliative care needs throughout their disease trajectory, necessitating an appropriate and early palliative care approach 1
• The life-limiting nature of many neurological diseases and specific symptoms related to neurological deterioration make early integration of palliative care particularly valuable 1
• Early introduction of palliative care can improve both quality of life and potentially survival in patients with advanced diseases 1
• Palliative care should be considered an integral part of comprehensive neurological care, not just end-of-life care 1

Key Neurological Conditions Benefiting from Early Palliative Care

• Gliomas and Neuro-oncological conditions: Patients with glioma have complex palliative care needs due to the life-limiting nature of the disease and neurological deterioration 1
• Amyotrophic Lateral Sclerosis (ALS): With mean survival of 3-5 years and only 5-10% living longer than 10 years, early palliative care is essential 2, 3
• Devastating Brain Injury: Early palliative care considerations are important in cases where patient-centered outcomes are recognized to be unacceptable 1
• Stroke: Patients with major infarctions affecting cerebral hemisphere or cerebellum may require palliative approaches 1
• Other progressive neurological diseases: Including multiple sclerosis, Parkinson's disease, and dementia 4

Implementation of Early Palliative Care

Timing of Initiation

• Palliative care should be integrated from the time of diagnosis, not just at end-of-life 2, 5
• Early referral to palliative services is recommended to establish relationships with staff before communication becomes limited 2
• For conditions like ALS, early integration is crucial due to potential communication difficulties as the disease progresses 5

Multidisciplinary Approach

• A genuinely multidisciplinary team approach is required for effective neurological palliative care 6
• The primary neurological team (physicians, nurses, social workers, mental health professionals, chaplains) can initially provide most palliative care needs 1
• Collaboration with specialized palliative/hospice teams is advised as disease progresses and prognosis becomes a matter of months 1

Key Components of Early Palliative Care in Neurology

• Symptom management: Focus on addressing physical symptoms specific to neurological conditions 1, 4
• Psychosocial support: Addressing psychological, social, and existential suffering from the time of diagnosis 4
• Communication: Clear, consistent, and empathetic communication about disease trajectory and prognosis 1
• Advance care planning: Early discussions about goals of care while patients retain decision-making capacity 5
• Caregiver support: Recognition of caregiver burden and provision of appropriate support 2

Evidence for Effectiveness

• Studies show that early palliative care leads to better patient and caregiver outcomes when combined with standard care 1
• In neurological conditions, there is increasing evidence that palliative care and a multidisciplinary approach lead to improved symptoms and quality of life for patients and families 7
• For ALS specifically, early palliative care helps establish relationships with staff before communication becomes limited 2

Barriers and Challenges

• Limited evidence base for some aspects of neurological palliative care, including fatigue, disorders of behavior and mood, and timing of advance care planning 1
• Palliative care is not an integral part of neurological training in most countries 6
• Challenges in prognostication for many neurological conditions make timing of interventions difficult 5
• Communication barriers in patients with neurological conditions may complicate shared decision-making 5

Practical Recommendations

• Implement routine screening to identify individual palliative care needs in neurological patients 4
• Integrate palliative care approaches into routine neurological care through collaboration between neurologists and palliative care specialists 4
• Provide educational programs to all healthcare professionals to develop effective palliative care knowledge and skills 1
• Focus on patient autonomy, dignity, and quality of life throughout the disease course 2
• Consider the impact of any given therapy on patients' quality of life and preferences when making treatment decisions 1