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Podcast & Publication: Creating a New Model to Address Suffering for Neurological Illnesses

Read the Publication "Palliative Care to Support the Needs of Adults with Neurological Disease" in The Lancet Neurology. Listen to the podcast in which Jonathan Blott of Lancet Neurology discusses Neuropalliative Care with Claire Creutzfeldt, Malenna Sumrall, and myself.

Neurologic illnesses, including Alzheimer’s, brain cancer, amyotrophic lateral sclerosis (ALS), and stroke, are among the most dreaded diseases in medicine and leading causes of disability and death worldwide. Despite the huge burden of suffering these patients and families face, palliative care is not routinely offered and is used far less than in other illnesses. In a review commissioned by the journal Lancet Neurology, I and an international team of experts argue that current models of care do not adequately address the needs of people living with neurologic illness. We propose a new evidence-based framework for early and ongoing palliative care approaches that multiple members of the healthcare team can employ to improve the quality of life for individuals with neurological disorders and their families.

Suffering is a 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.

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. Nearly all neurological diseases cause many symptoms, including pain, fatigue, and memory loss. Depression, anxiety, social isolation, and loss of independence are also common. Family members typically are the primary at-home caregivers and over time can struggle with the emotional impact of seeing a loved one suffer as well as with the social, financial, and physical impact of providing care. Building on international palliative care guidelines and a review of neuropalliative care research to date, we propose a new model of care carried out by an extended healthcare team that anticipates the changing needs that arise over the course of a neurologic illness.

Additional co-authors of the review "Palliative Care to Support the Needs of Adults with Neurological Disease": Charles White with URMC; Peter Hudson with the University of Melbourne; Laura Hanson with the University of North Carolina; Radka Bužgová with the University of Ostrava; Claire Creutzfeldt with the University of Washington; Roop Gursahani with the Hinduja Hospital and Medical Research Center; Malenna Sumrall with the University of Colorado; David Oliver with the University of Kent; Steven Pantilat with the University of California, San Francisco; and Janis Miyasaki with the University of Alberta.

The research was supported by a grant from the National Institute of Aging.


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