Open Letter to the Advisory Council on Parkinson's Research, Care, and Services

To Whom It May Concern:

I am writing to provide a comment/suggestion for the Advisory Council on Parkinson's Research, Care, and Services (ACPRCS). I applaud this effort and think it is about time we addressed Parkinson’s and related disorders at a national level given its high prevalence and significant impact on the lives of patients and their families.

 A concern that I have in the mission “for an integrated national plan to prevent, diagnose, treat, and cure Parkinson’s, ameliorate symptoms, and slow or stop progression” is that care per se is not mentioned and that the language used is entirely biomedical. While biomedical treatments (and hopefully one day a cure) are important, this does not address the total pain of Parkinson’s and related disorders for patients and families which also includes psychosocial, spiritual, existential, and practical concerns. Even within the realm of the biomedical, there are many issues which are currently not well-addressed that affect a majority of people living with Parkinson’s including dementia, pain, mood disorders, and fatigue.

Palliative care is an approach to improving the quality of life for people living with serious illness and their families that focuses on addressing medical symptoms, psychosocial issues, spiritual concerns, and planning for the future. While traditionally associated with cancer and end-of-life care, it is now recognized that palliative care can be helpful for a wide-range of illnesses and across the disease journey starting at diagnosis. Notably, there is specifically a growing body of literature demonstrating the high rates of palliative care needs in Parkinson’s and related disorders, as well as randomized controlled trials demonstrating the effectiveness of palliative care approaches in improving patient and family-centered outcomes. While it may take years (or decades) to advance biomedical treatments to slow or stop progression, there is much we can do today to improve care.

A related concern is that the field of movement disorders has traditionally avoided discussions of end-of-life care. It is still common to hear neurologists state that people “die with Parkinson’s and not of Parkinson’s” despite the fact that the CDC ranks PD as the 10th leading cause of death in individuals over age 65. I think the ACPRCS should address this issue. There are many gaps in end-of-life care for people with Parkinson’s and significant evidence that people with Parkinson’s face excessive suffering, hospitalizations, and institutionalization near end-of-life because of failures of our healthcare system to acknowledge and address mortality and related issues.

In my roles as the founding president of the International Neuropalliative Care Society (and current past president), a neuropalliative care researcher, physician, and friend to many people with Parkinson’s and related disorders I hope that you will give due consideration to these concerns. If there is anyway I can help serve ACPRCS in any of my roles, please feel free to reach out to me. I would also be happy to make a few remarks or answer questions at the inaugural session.

Sincerely,

Benzi Kluger, MD, MS, FAAN

Past President, International Neuropalliative Care Society

Julius, Helen and Robert Fine Distinguished Professor of Neurology

Director, Palliative Care Research Center

Director, Neuropalliative Care Division

University of Rochester Medical Center