Palliative care has been in practice since the mid-twentieth century, and while it has been shown to improve quality of life, there are a variety of misconceptions about palliative medicine that can lead to detrimental outcomes. Palliative care is often better described as supportive care – it is meant for people who have serious illnesses, and it focuses on setting up goals and treatment plans for the future. It is intended to control pain, reduce suffering, increase your quality of life and address the psychological, social and spiritual aspects of your life.
Another important feature of supportive care is that it is team-based. It is essential to build a complete care team to help treat your Parkinson’s effectively, and palliative medicine is part of that. A palliative care team can involve doctors, nurses, counselors, social workers, chaplains, pharmacists and nutritionists, just to name a few. This allows your team to focus on holistic care. Since Parkinson’s affects your whole self, it stands to reason that your care team should be just as multifaceted.
Supportive care can also serve as an important communication measure. The members of your palliative team can help enhance family communication, facilitate difficult discussions and help you get the most of your time with your doctors. They can also help you decide what is important to you in order to set up goals and a treatment plan that reflect your values and priorities.
However, there are several common myths about palliative care that are essential to dispel. In order to understand the importance of supportive care and why you want it, we’re going to delve into these misconceptions.
Myth #1 – Palliative Care and Hospice Are the Same Things
In the United States, hospice is a part of palliative medicine, but it is only one aspect. Palliative care can be part of your treatment plan beginning as early as diagnosis, whereas hospice is only meant for people in their last six months of life. It is important to note, however, that many people receiving hospice care do live much longer than the predicted six months, and this is largely attributed to the fact that the care they receive improves their quality of life.
Myth #2 – Palliative Care is for People Who Are Near Death
As mentioned above, palliative care is a lifelong process that can (and should) begin at diagnosis. Your supportive care team is with you throughout your journey with Parkinson’s, and they are there to offer you holistic and complete care.
Myth #3 – Accepting Palliative Care Means You’re Giving Up
While there is not yet a cure for Parkinson’s, it is essential to understand that accepting supportive care does not mean that you or your physicians are giving up on treatment. Rather, it simply means that you are choosing to incorporate other areas of care like social, psychological and spiritual care. You are a whole person, and Parkinson’s goes far beyond motor symptoms; so, it makes sense to focus on those areas of treatment as well.
One of the best things about palliative care teams is that they practice in hospitals, outpatient clinics, assisted living facilities and private homes across the country. It is accessible to you no matter where you live. It is also covered by most insurance plans.
In order to best treat your Parkinson’s and receive all the possible benefits of supportive care, talk to your physician about adding palliative practitioners to your healthcare team. Check-in with your insurance about coverage but remember that supportive care takes many forms. You do not have to move to a nursing home, for example, to receive the quality of life care you need. Rather, explore a variety of options, including counselors, chaplains and social workers, to find the best balance for you.
You, your care partner and your family deserve a support system that will be in place for the duration of your journey with Parkinson’s; therefore, do not hesitate to reach out and start adopting that holistic approach.
For more information, check out episode 110 of the Parkinson’s Podcast, Palliative Care, Not Just for End of Life: A Holistic Approach to Treating Parkinson’s with Dr. Maya Katz.
Want to learn more about palliative care in Parkinson's? Join us in Tucson for The Victory Summit event on Saturday, December 14th. Dr. Benzi Kluger will be giving a talk on Supportive Care and Living Well with Parkinson's. Register for free here.