What is palliative care, and should we consider it for Parkinson’s?

When I am not writing my column for Parkinson’s News Today, I work for a small healthcare company. One of my favorite parts of the job is coordinating care for clients. I assist with in-home caregiver management, care reporting, and medication and medical supply management, and I serve as a liaison between hospice and families.

On a personal level, my job has given me plenty of experience in planning for the future needs of my husband, Arman, who was diagnosed with early-onset Parkinson’s disease in 2009. My work in the care-coordination space has taught me many valuable lessons I will need as Arman moves through the different stages of Parkinson’s.

At a recent caregiver support group meeting, the topic of palliative care was briefly discussed. Although I have abundant work-related experience with hospice care, I am not very familiar with palliative care. I decided to learn more about it and how it could benefit my husband and readers of this column.

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According to the Parkinson’s Foundation, “Palliative care, 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.”

Palliative care providers for patients with Parkinson’s disease might include a neurologist, nurse, spiritual guide, social worker, and a palliative physician. This dedicated care team may assist with physical symptoms, psychological issues, planning for the future, and spiritual support, as well as serve as an educational resource.

A common mistake

One misconception about palliative care is that it is only available to people in the later stages of Parkinson’s disease. Palliative care is available at any stage of the disease and can be an asset as early as the time of diagnosis.

There is often confusion about the difference between hospice and palliative care. Hospice care is dedicated to comfort care during the last six months (or more in some cases) of life. Hospice physicians and nurses replace traditional physicians and specialists, providing medication and supportive care for families. Palliative care focuses on supporting patients with serious illnesses and does not replace your current care team.

Many health insurance companies cover palliative care services. It is vital to check on your plan’s coverage before considering palliative care. A discussion with your movement disorder specialist is an essential first step to learning more and obtaining a referral.

Now that I am more knowledgeable about palliative care, I am excited to speak to our neurologist to see if it may be an option for Arman. Knowing that we could benefit from the extra support is encouraging. I also hope readers find this information valuable and helpful.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.