Redesigning Approach to Alleviate Suffering: Developing a Novel Strategy for Neurological Disease Symptom Management

Redesigning Approach to Alleviate Suffering: Developing a Novel Strategy for Neurological Disease Symptom Management

The Parkinson Foundation has announced a groundbreaking initiative to make integrated palliative care a standard practice across its global Center of Excellence network. This ambitious project aims to revolutionise care for patients with neurological illnesses, focusing on addressing invisible symptoms like depression, future planning, and end-of-life care to ensure patients can live with dignity, control, and comfort for as long as possible.

The proposed model of care is backed by numerous research studies demonstrating the potential of palliative care approaches to improve quality of life, symptom management, and future care planning for various neurological illnesses. These include Alzheimer's, brain cancer, ALS, and stroke, which are leading causes of disability and death worldwide.

Family members often serve as primary at-home caregivers for patients with neurological illnesses, and over time can experience the emotional impact of witnessing a loved one suffer. The new model of care seeks to alleviate this burden by integrating a palliative care approach from day one, with neurologists and other clinicians involved.

The extended healthcare team for this model includes social workers, mental health specialists, spiritual care, rehabilitation, and pain medicine. The care anticipates the changing needs that arise over the course of a neurological illness, addressing a wide range of symptoms such as pain, fatigue, memory loss, depression, anxiety, social isolation, and loss of independence.

The proposed model emphasises the need to focus on preventing and alleviating suffering for patients with neurological illnesses. Key principles include early integration of palliative care, comprehensive assessment, collaborative decision-making, and spiritual support.

An international team of experts, including Dr. Kluger, Charles White, Peter Hudson, Laura Hanson, Radka Bužgová, Claire Creutzfeldt, Roop Gursahani, Malenna Sumrall, David Oliver, Steven Pantilat, and Janis Miyasaki, have collaborated on this project. They have proposed a new evidence-based framework for early and ongoing palliative care approaches for neurological disorders.

While there is currently no specific mention of a new framework from the International Neuropalliative Care Society, discussions around palliative care often emphasise comprehensive and people-centered approaches, similar to those recommended by the World Health Organization (WHO) for integrated health services.

Dr. Kluger suggests empowering neurology teams to provide better whole person, patient-centered care. He also proposes working with insurance companies and hospitals to incentivise care that improves patient and family outcomes while reducing costs and unwanted hospital stays. The research was supported by a grant from the National Institute of Aging.

In conclusion, the Parkinson Foundation's new model for palliative care in neurological illnesses represents a significant step forward in improving care for patients and their families. By focusing on early integration, comprehensive assessment, collaborative decision-making, and spiritual support, the model aims to provide tailored, holistic care that addresses the unique needs of patients with neurological illnesses.

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