Palliative care is an approach to the care of persons living with serious illness and their families that focuses on improving quality of life and reducing suffering. It is person-centered care that addresses physical symptoms, difficult emotions, spiritual wellbeing, and planning for the future.
While traditionally associated with cancer and end-of-life, there is a growing body of evidence supporting the integration of palliative care for any serious illness and at any time along the illness journey, including the time of diagnosis. Since 2013, I have been engaged in the growing field of neuropalliative care, a field that recognizes that persons living with neurologic illness have significant and unique palliative care needs. This is my primary research interest.
My contributions to this field include:
Developing the first team-based outpatient neuropalliative care clinic in the United States. This clinic has served as a model for several other clinics across the country.
Leading efforts to integrate palliative care principles into standard neurologic care.
Conducting research to demonstrate the benefits of the neuropalliative care approach and encourage its use and dissemination.
Leading efforts to create a new International Society for Neuropalliative Care (website coming soon).
Creating educational materials for neurologists and other clinicians to learn the fundamentals of neuropalliative care.
This includes contributions to papers, book chapters, and co-editing a new textbook.
I secured grant funding and co-directed an effort to create a neurology adaptation for the Education in Palliative and End-of-life Care (EPEC) educational program (website coming soon).
Lewy Body Disease Association Community Webinar Series
‘Prescription for Hope: Using Palliative Care Concepts to Support Self-Management in Lewy Body Dementia.’
Palliative care skillsets provide a great foundation for individuals and families to improve the care they receive, especially with complex conditions like Lewy body dementia. Presented in collaboration with the International Neuropalliative Care Society, ‘Prescription for Hope: Using Palliative Care Concepts to Support Self-Management in Lewy body dementia’ will provide an overview of what palliative care is and how it can support your quality of life. In addition to learning from four experts, you will hear first-hand from a care partner and her experience with palliative care.
Neuropalliative Care: Key Publications
Here is some of my past research if you’d like to learn more about neuropalliative care.
This paper describes the results of a large, multisite randomized controlled trial of team-based outpatient neuropalliative care for Parkinson’s disease. We found that palliative care results in improved patient quality of life, symptom control, motor function, and advance care planning as well as caregiver burden and anxiety. It is a crucial step towards more widespread adoption of this approach in Parkinson’s disease and neurology.
This paper calls attention to the wide array of challenges facing people living with neurological illnesses and their family. As these many of these needs are not well met under current models of care it calls for a paradigm shift for our field to embrace and integrate palliative care approaches.
These two papers utilize qualitative interviews to better understand the palliative care needs and preferences of people living with palliative care and their family care partners.
Practical suggestions for clinics and healthcare providers interested in getting a neuropalliative care clinic off the ground including checklists for all team members.
Summary of the meeting of an international working group on palliative care and Parkinson’s disease including recommendations for where the field should go.