Palliative care, also known as supportive care, is an approach to care that focuses on treating the whole person instead of the disease. Palliative care addresses physical, social, emotional, and spiritual needs to improve the quality of life for a person with Parkinson’s disease (PD) and their family. Ideally, palliative care would be provided to people with Parkinson’s from diagnosis through every stage of the disease.
Also known as supportive care, is a care approach that helps people with Parkinson’s and care partners plan for the future, manage non-movement symptoms and provide an extra level of support for emotional, social, spiritual and other challenges.
The Parkinson’s Foundation believes palliative care should be offered to everyone with Parkinson’s. At the core of this care approach is the belief that all people with PD and their families should be listened to and that their needs and goals are being addressed in order to live their best lives.
Through the first-ever nation-wide palliative care model, our palliative care initiative has trained more than 800 health care professionals across our Centers of Excellence (designated medical centers that provide specialized PD care) on how to provide PD-tailored supportive care.
What is palliative care?
Palliative care, or supportive care, is an approach that helps people with PD and their families plan for the future and receive an extra level of support. It is not hospice or end-of life care, rather hospice should be thought of as a subgroup of palliative care.
The focus of palliative care is on maintaining quality of life. Key elements of palliative care include:
- Addressing non-movement symptoms
- Managing pain
- Navigating emotional and spiritual support
- Addressing care partner needs
- Having annual advance care planning conversations
- Navigating and partnering with specialist palliative care and hospice, when appropriate
Benefits of Palliative Care
Studies have shown that people who receive palliative care experience numerous benefits, including:
- Less pain and other symptoms like constipation.
- Improved quality of communication between doctor, person with Parkinson’s and family members.
- Care that is more aligned with the wishes of the person with PD and meets their emotional and spiritual needs.
Is palliative care only for people with advanced Parkinson’s?
No. At the core of palliative care is the belief that all people with PD and their families should be listened to and that their individual needs and goals are addressed to live better with Parkinson’s. People with Parkinson’s can benefit from palliative care at any stage of the disease.
“The realization that palliative care is there to be supportive is a big relief. As we get farther along in the disease and there are more issues that arise, there is more of an optimistic feeling that there will be support. It brings hope to have that sense of confidence that you're not going to be doing it all alone.”
- Linda Hall, care partner
What is the difference between palliative care and hospice care?
The term palliative care is easily mistaken with for hospice care, but they are not the same. Palliative care is not hospice or end-of-life care but can include both.
- Palliative care: ongoing care that helps people with Parkinson’s and care partners plan for the future, address non-movement symptoms and receive an extra level of support. Palliative care works in conjunction with ongoing treatment and focuses on quality of life.
- Hospice care: a program of care designed to focus on end-of-life comfort, primarily through pain relief management. Often provided for a timeframe of weeks or months. Learn more about hospice care and Parkinson’s.
“My dad had Parkinson’s and arthritis, which meant a lot of stiffness. It was extremely difficult to get anyone to treat his pain. At that point, I didn't know palliative care even existed, so I did not know to ask about it — and no one suggested it. In hindsight, if we had access to palliative care, we could have managed his pain better, and his overall quality of life.”
- Kelly Weinschreider, person with Parkinson’s and care partner
How can I start receiving palliative care?
A team of professionals — that may include doctors, nurses, social workers, pharmacists, nutritionists, counselors and others — can provide palliative care. This team can help manage pain, anticipate future needs and provide practical guidance, as well as help people with PD and care partners cope with the emotional impact of this disease.
Palliative care can also be offered onsite at a specialized clinic, such as a Parkinson’s Foundation Center of Excellence.
Most insurance plans cover all or part of the treatment costs. A social worker can help you navigate palliative care options if your care team does not provide it in-office.
Our Palliative Care Initiative
A central priority of the Parkinson’s Foundation is to ensure that all people with Parkinson's can obtain the care they need to improve their health and quality of life. Our goal is to make palliative care accessible from the time of diagnosis, providing support for people with Parkinson’s and their family members, throughout every stage of the disease.
Our palliative care initiative, Implementing Team-based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence, provides personalized training to PD specialists and teams in the art of palliative care. Parkinson’s Foundation Centers of Excellence receive individualized training and plans that best meet the needs and resources of their center. The program was launched through a PCORI award in collaboration with the University of Rochester Medical Center.
Through this initiative, the Foundation has trained more than 800 healthcare team members at Centers of Excellence, which provide care to more than 70,000 people with PD.
As part of the palliative care model, we established five key pillars of palliative care:
A Palliative Care Educational Program Designed for You
Learn more about palliative care and how it can help you or your loved one manage non-movement symptoms, improve your mental, spiritual and emotional health, and provide care partner support. Explore our online PD Health @ Home Palliative Care Series.
Page reviewed by Dr. Benzi M. Kluger, Movement Disorders Neurologist at University of Rochester Medical Center, a Parkinson's Foundation Center of Excellence.