Janis Miyasaki

Patient Advocacy Group Panel
Non-profit organizations that represent people living with neurologic illnesses provide amazing services to our communities and are essential advocates for improving standards of care. In this panel discussion we will learn from several of the world’s leading neurology nonprofit organizations about what initiatives they are leading to promote neuropalliative care, what challenges they are facing, and what key lessons they are learning along the way. Our discussion will include ways nonprofits can work together to achieve larger goals and how they balance addressing the realities of serious illness with messages of hope.

"Infusing Creativity into Neuropalliative Care"
Human beings are innately creative and seekers of meaning. Drawing on these innate capacities, Dr. Anne Basting explores the power of infusing creativity and opportunities for meaning making into care - from the smallest of passing moments to entire networks and systems of palliative care. She provides examples for transformation at the personal level and for systems change based on 25 years of work infusing the arts into health and social care systems.

Outstanding Scientific Contribution Award
Presentation to Randy Curtis (posthumous)
"Death With Dignity"

"The Role of Palliative Care Nursing: Applications for Neuropalliative Care"
National guidelines and professional standards have been developed to guide the delivery of high-quality palliative care and to demonstrate the need for all nurses to be competent in providing primary palliative care. Nurses are well poised to integrate palliative care standards in a variety of settings and in myriad ways including clinical care, program development, leadership, education, and advocacy. This session will describe the specialized role of the palliative care nurse and advanced practice nurse and will explore ways in which this care can be provided in individuals living with neurologic disease.

Claudia Chou
Bradley Boynton
Catherine Shonley
Randi Beyerl
Abraham Labrada-Santiago

Discussion Panel: Advance Care Directives
The use of advance care directives is discussed across the World, but there has been variable uptake in different countries, often dependent on the local legislation.  In the care of people with neurological disease advance care planning is very important, as many will lose communication abilities or the capacity to make decisions as the disease progresses.
This discussion will look at how we can encourage planning ahead and enable patients to be able have their wishes known and acted upon as they deteriorate and they are not able to do so themselves.