Every year, the Parkinson's Foundation hosts the Centers of Excellence Leadership Conference, where leaders from our 42 Centers of Excellence — medical centers located around the world with leading Parkinson's specialists — attend and present their cutting-edge research and expert care findings. Dr. Janis Miyasaki spoke at this year's conference on palliative care and how a neurologist-led team can change the course of the disease for people with Parkinson's disease (PD).
Palliative care often gets confused with hospice care. It is incorrectly associated with imminent death. Palliative care programs consist of a team of experts who provide symptom and pain management, spiritual care and medical support to people with serious illnesses, like Parkinson's. People with PD can seek palliative care at any stage and often find relief in symptom management when they do.
The term palliative care is evolving. Due to a more positive connotation, the terms comfort care, symptom management or supportive care are becoming widely used instead. While people who enroll in palliative care programs can have a debilitating disease like cancer, dementia, congestive heart failure and kidney disease, these programs can also be well suited to help people with PD.
According to Dr. Miyasaki, palliative care professionals need to better address the high symptom burden of Parkinson's. Palliative care programs across the world are realizing that they are better defined as a philosophy of care. Believing in the future of palliative care, Dr. Miyasaki created the first neurologist-led palliative care program, which she implemented at the University of Toronto and subsequently at the University of Alberta. Her palliative programs were unparalleled in Parkinson's and movement disorder care.
Dr. Miyasaki's custom palliative care team included a:
- Palliative care doctor
- Nurse specialist
- Social Worker
- Spiritual Care Advisor or Psychologist
Every specialist on the team plays an essential role and works for the patient. Once a patient is enrolled, the team reviews medical records, patient needs and together creates a single plan. The patient benefits from having one plan, as opposed to having multiple doctors or healthcare providers addressing different issues resulting in often an overwhelming number of instructions for patients and care partners. A palliative care plan can call for adjustments in medications, physical therapy or occupational therapy to better help manage symptoms. After the program is completed, the patient goes home, ideally better suited to manage PD symptoms.
Palliative care physicians usually manage the programs, but Dr. Miyasaki, a neurologist, leads hers. She feels that a neurologist-led program can be successful in PD care. Neurologists have a longstanding relationship with their Parkinson's patients. They are familiar with PD medications, how to alter anti-parkinsonian medications, identify and treat PD-related psychosis and dementia. Traditional palliative care physicians often receive training focusing on cancer patients — a completely different patient population. Additionally, most palliative care programs fall under the oncology department, which leads to a cancer focus on trajectory of illness and symptom management. When neurologists participate in palliative care programs it allows them to stay connected to patients whom they have often known for decades, allows them to scale up their own skills and to help palliative care physicians become comfortable with PD patients and their families, in terms of treatment and style of communication.
"Supportive and palliative care for Parkinson's disease, and other neurologic disorders, is here to stay," Dr. Miyasaki said. She believes that the future of the palliative care field will be shaped by the increase of health practitioners who are earning dual certification in palliative care and neurology. Due to the rate of people aging, the potential population for supportive and palliative care neurology services will increase.
While palliative care programs in the United States are not neurology-driven, they exist to help people improve physically, emotionally and spiritually. They can also be beneficial for the caregiver. Most insurance plans cover all or part of palliative care programs in the United States.
For more information about palliative care and to learn about the primary differences between palliative care and hospice care call the free Parkinson's Foundation Helpline at 1-800-4PD-INFO (473-4636) or view our fact sheet about Palliative and Hospice Care, or see our webinar, Advanced PD and Palliative Care in the 21st Century.
About Janis Miyasaki, MD
Director of Movement Disorders Program
University of Alberta
Dr. Miyasaki completed medical school, neurology residency and a Movement Disorders fellowship under Dr. Anthony Lang at the University of Toronto. She was a faculty member at the University of Toronto from 1997 to 2013 and the Associate Clinical Director of the Movement Disorders Centre, a Parkinson's Foundation Center of Excellence. Since 2014, she has been at the University of Alberta and in 2015 became the Director of the Movement Disorders Program.
She launched the first dedicated program for Palliative Care for Parkinson's disease in the world through the support of the Parkinson's Foundation. Dr. Miyasaki is a Board of Director for the American Academy of Neurology and authored several PD evidence-based guidelines.