Alleviating Suffering for Neurological Ailments: Innovating a Novel Approach for Palliative Care

Alleviating Suffering for Neurological Ailments: Innovating a Novel Approach for Palliative Care

In a groundbreaking development, the International Neuropalliative Care Society (INCS) has proposed an evidence-based framework for early and ongoing palliative care in neurological illnesses. This framework, published in The Lancet Neurology, emphasizes the integration of palliative approaches throughout the disease trajectory rather than solely at end-of-life stages.

The proposed framework, led by Dr. Benzi Kluger, aims to improve the quality of life for individuals with neurological disorders and their families. It focuses on preventing and alleviating suffering for these individuals.

Key components of this comprehensive framework include:

1. Early initiation of palliative care concurrent with disease-modifying treatments, addressing symptom management, psychological support, advance care planning, and caregiver needs from diagnosis onward.
2. Multidisciplinary, patient-centered care models involving neurologists, palliative care specialists, nurses, therapists, social workers, and others working collaboratively to address complex physical, emotional, cognitive, and social symptoms over time.
3. Respect for patient autonomy and goals of care using shared decision-making processes that align treatment plans with individual values and disease stage.
4. Standardized assessment and communication tools such as triadic meetings and care planning to optimize coordination and continuity, including telehealth to improve accessibility.

The framework recognizes palliative care as additive and complementary to disease-modifying and symptomatic therapies, aiming to improve quality of life, manage refractory symptoms (pain, dyspnea, psychological distress), and support families throughout illness progression—not only in terminal stages.

This shift from palliative care as end-of-life only to its role as ongoing support integrated at all stages of neurologic illnesses is a significant step forward. The framework highlights the utility of specialized multidisciplinary clinics and personalized care coordination to optimize outcomes in complex neurodegenerative conditions including ALS, Parkinson’s disease, and dementia.

Dr. Kluger expresses hope that the healthcare system will provide the care and support needed for individuals with neurological disorders and their families. He emphasizes the importance of empowering neurology teams to provide better patient-centered care. The authors recommend working with insurance companies and hospitals to incentivize care that improves patient and family outcomes while reducing costs and unwanted hospital stays.

Numerous research studies demonstrate the promise of palliative care approaches in improving quality of life, symptom management, and future care planning for various neurological illnesses. The Parkinson Foundation has launched an ambitious project to make integrated palliative care a new standard throughout its global Center of Excellence network.

Integration of palliative care for neurological illness is increasingly recommended in guidelines from national and international foundations. This new framework, supported by a grant from the National Institute of Aging, marks a milestone in the care of individuals with neurological diseases and their families.

References:

[1] Kluger, B., White, C., Hudson, P., Hanson, L., Bužgová, R., Creutzfeldt, C., Gursahani, R., Sumrall, M., Oliver, D., Pantilat, S., Miyasaki, J., et al. (2021). Neuropalliative care: An evidence-based framework for early and ongoing palliative care in neurologic illnesses. The Lancet Neurology. doi: 10.1016/S1474-4422(21)00305-6.

1. The proposed framework stresses the importance of science in improving quality of life for individuals with neurological disorders.
2. Effective sleep patterns are essential for managing symptoms and maintaining overall health in those with neurological conditions.
3. Workplace wellness programs should consider the unique needs of employees with neurological medical conditions.
4. Cancer and neurological disorders often share similar symptom management strategies and therapies.
5. Respiratory conditions, such as COPD and asthma, can exacerbate neurological symptoms, requiring close collaboration between specialists.
6. Maintaining digestive health is crucial for managing symptoms and overall well-being in individuals with neurological diseases.
7. Regular eye health check-ups are essential to monitor eye symptoms in neurological patients and ensure timely interventions.
8. Hearing loss can be a comorbidity in certain neurological disorders, necessitating close monitoring and appropriate therapies.
9. Health and wellness providers should prioritize mental health care for individuals with neurological disorders, as mental health issues are common among them.
10. Fitness and exercise play an integral role in managing symptoms and improving quality of life for individuals with neurological conditions.
11. Sexual health should be addressed in comprehensive care plans for individuals with neurological diseases, as sexual dysfunction can be a common side effect of treatment.
12. Autoimmune disorders can lead to neurological complications, making it essential for specialists to collaborate in diagnosis and treatment.
13. Climate change can impact neurological health through air pollution, extreme temperatures, and disruptions in access to healthcare services.
14. In the manufacturing industry, implementing ergonomic workspaces and wellness programs can help mitigate the development and progression of neurological disorders.
15. Mental health support is crucial in addressing neuropsychological symptoms and improving overall quality of life in individuals with neurological disorders.
16. Men's health, including neuropsychiatric concerns, should be prioritized in healthcare settings to ensure timely diagnosis and treatment.
17. Skincare is an essential aspect of self-care for individuals with neurological disorders, who may be at higher risk for skin conditions due to physiological changes.
18. The framework emphasizes the importance of various therapies and treatments for managing symptoms and improving quality of life in neurological patients.
19. Aging is associated with an increased risk of neurological disorders, making ongoing care and prevention efforts crucial.
20. Women's health encompasses unique neurological concerns, such as multiple sclerosis and migraines, requiring specialized care and attention.
21. Parenting resources should address the specific challenges faced by parents raising children with neurological disorders.
22. Cardiovascular health is closely linked to the development and progression of neurological conditions, necessitating close collaboration between cardiologists and neurologists.
23. The healthcare industry should prioritize integration of early and ongoing palliative care for individuals with neurological disorders as standard practice.
24. Medicare and other insurance providers should cover the costs of integrated palliative care for neurological patients, as it can lead to improved quality of life and reduced costs in the long run.
25. Neurological disorders can lead to neurological disorders such as epilepsy or stroke, emphasizing the need for comprehensive care plans and ongoing monitoring.
26. Environmental science plays a role in identifying and mitigating environmental factors contributing to the development and progression of neurological disorders.
27. Financial planning, including budgeting, saving, and debt management, is essential for individuals with neurological disorders to navigate healthcare expenses and maintain financial stability.

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