New Model for Palliative Care To Address Neurological Illnesses

Alzheimer’s disease, brain cancer, amyotrophic lateral sclerosis (ALS), and stroke are among the most feared ailments in medicine and the main causes of disability and death globally. Despite the enormous burden of suffering that these patients and families bear, palliative care is not routinely available and is employed significantly less frequently than in other illnesses.
An international team of specialists says in a review commissioned by The Lancet Neurology journal that current models of care do not effectively serve the needs of persons living with neurologic illness. They suggest a new evidence-based paradigm for early and ongoing palliative care treatments that different members of the healthcare team can use to improve the quality of life of people with neurological illnesses and their families.

“Suffering is the fundamental concern of palliative care. To improve care we must address the total pain of neurologic illness—not just physical pain, but also psychological, social, and spiritual distress,” said University of Rochester Medical Center neurologist Benzi Kluger, MD, lead author of the article produced by members of the International Neuropalliative Care Society. “This model of care seeks to screen for and prevent suffering by integrating an early approach to palliative care, with neurologists, and other clinicians who care for people with neurological illnesses incorporating a palliative care approach from day one.”

Almost all neurological illnesses induce a variety of symptoms, such as pain, exhaustion, and memory loss. Depression, anxiety, social isolation, and loss of independence are some prevalent symptoms. Family members are often the primary at-home carers and can struggle with the emotional burden of seeing a loved one suffer as well as the social, financial, and physical impact of giving care over time.

The authors propose a novel model of care carried out by an extended health care team that anticipates the changing demands that occur during the course of a neurologic illness, based on international palliative care standards and a review of neuro palliative care studies to date.

The strategy starts with the recognition that obtaining a neurologic diagnosis is a life-changing event that requires emotional support as well as expert assistance.

From there, efforts are made to check for unseen symptoms such as depression, to assist patients and families in making future plans, and to fully utilize an expanded healthcare team that includes social workers, mental health specialists, spiritual care, rehabilitation, and pain medicine. End-of-life care must also be improved to allow patients to live with dignity, control, and comfort for as long as possible.

“There are long-term goals associated with policy changes that we highlight in this paper, but there are things that we can do right now that can go a long way to improving care,” said Kluger. “Some of this can be achieved by empowering neurology teams to provide better whole-person, patient-centered care. We can also work with insurance companies and hospitals to incentivize care that improves patient and family outcomes while reducing costs and unwanted hospital stays.

Numerous research studies on Parkinson’s disease, multiple sclerosis, dementia, and other neurologic disorders are cited by the authors to demonstrate the promise of palliative care approaches in improving several critical outcomes such as quality of life, symptom control, and future care planning. Notably, the Parkinson Foundation has launched an ambitious project funded by the patient-centered Outcomes Research Institute to make integrated palliative care a new standard across its global Center of Excellence network.

“The focus needs to be on the immediate and practical work of helping to prevent and alleviate suffering,” said Kluger. “If we use that as our north star, everything else will follow suit. Almost everyone will be affected by neurologic illness at some point in their life—as either a patient or a family caregiver. I believe this is the ultimate test of our healthcare system. Are we going to finally provide the care and support people need? I’m hopeful that we can.”

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