Making Palliative Care Standard Practice For People with Parkinson’s Disease
A new program launched by the Parkinson’s Foundation will help to make palliative care a standard practice across all Centers of Excellence in the United States. These are medical centers that have a specialized Parkinson’s disease (PD) care team that practices the latest treatments and research while providing the best care to people with PD and their caregivers.1
The Parkinson’s Foundation has partnered with the University of Rochester Medical Center to launch the program and provide customized palliative care training over a 3-year span. The funds for the program were awarded by the Patient-Centered Outcomes Research Institute (PCORI). PCORI is an independent, nonprofit organization that funds research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make informed healthcare decisions.1
What are Centers of Excellence?
There are 47 medical centers worldwide that are designated as Parkinson’s Foundation Centers of Excellence, and 33 of these centers are located in the United States. To be named a Center of Excellence, a medical center must meet high research, clinical, and patient care criteria. A Center of Excellence designation is highly respected in the movement disorders field.2
These centers have teams of neurologists, movement disorder specialists, physical and occupational therapists, and mental health professionals who are knowledgeable about the latest PD drugs, therapies, and research. They also:2
- Provide expert care to more than 193,000 people with PD
- Set the highest standards of care around the world for people with PD
- Advance research to improve the lives of people with PD who are treated at centers and beyond, and for future generations
- Provide patient education and community outreach programs, as well as specialized PD training for healthcare professionals
Why is palliative care so important?
Palliative care focuses not just on physical support but also on emotional, social, and spiritual support for people who have PD and their families. It also can help people with PD understand their options for medical treatment, no matter what stage of PD they are in. Palliative care specialist doctors and nurses often work alongside a team of social workers, nutritionists, and chaplains.3
Palliative care doesn’t mean giving up on treatments, but over time, a palliative care team may determine that treatments are no longer helping. If this happens, doctors will be able to offer comfort care by relieving any pain and discomfort while respecting the person’s wishes about future treatment. Many people with PD experience cognitive dysfunction, which means they can lose their ability to make decisions about their care or be cared for at home. Palliative care helps address their care wishes, along with the wishes of their family members.3
A study funded by PCORI examined palliative care in 210 people with PD and related disorders, as well as 175 caregivers. The study found that when paired with usual care, palliative care for people with PD and their caregivers improved:4,5
- Quality of life
- Detection and management of non-motor symptoms, like pain and dementia
- Caregiver support and anxiety
- Completion of advanced directives
The study also found that palliative care can be delivered by teams without specialized training if they receive the right guidance.1,4,5
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?