Palliative care, or “supportive care,” can begin as early as diagnosis of a serious or life-threatening illness. It can help improve the comfort and well-being of people living with challenging health conditions, from cancer to heart disease to Parkinson’s. In fact, studies show that palliative care can improve quality of life and increase survival time.1
This fact is not well-known, however, so patients and caregivers often miss out on important opportunities for enhancing the well-being of everyone involved in managing a serious illness.
Some of the benefits of palliative care include:2
Improved quality of life for both patients and caregivers
Help managing medical treatments and side effects
Fewer hospitalizations and readmissions
Potentially faster recovery times and longer survival rates
Confusion about palliative care
People often confound palliative care with hospice care and associate it with end-of-life treatment. Several studies have shown that because of this confusion, there is a stigma attached to the idea of palliative care, even among patients who have benefited from it. Some doctors even suggest changing the name, to reduce the stigma and confusion and encourage more patients to access its benefits.3
Some of the confusion around palliative care might have arisen from its origin as part of hospice or end-of-life care. Since then, healthcare providers have recognized that palliative care can help patients as early as diagnosis. In 2006, palliative care moved out of the hospice and become a specialty in its own right.2
Limited use of palliative care
Our 2018 Parkinson’s Disease In America survey similarly showed that our community of people living with Parkinson’s disease and their caregivers have limited knowledge of palliative care and often confuse it with end-of-life care. Even doctors do not often offer information about accessing the benefits of palliative care for their patients, despite its therapeutic benefits.
Results of the survey show that while half of the respondents have heard of palliative care (51%), only 2% of patients have ever used it and only 1% have asked a healthcare provider about it. 7% of our respondents have been offered information on palliative care by healthcare providers, but a full 92% have never discussed it at all.
What is palliative care?
Rooted in the idea of providing comfort for the patient, palliative care uses a team approach to caring for patients and meeting their needs and wishes.2 It centers on helping patients cope with and get relief from the symptoms of illness and the side effects of treatment. Palliative care also treats social, emotional, practical, and spiritual issues that illness can bring up for patients and their caregivers. This leads to improved quality of life for all involved.4
Palliative care is intended to be given at the same time as or as a complement to treatments meant to cure or treat disease. It helps patients from the moment an illness is diagnosed, through treatment, and even toward the end of life.4
People who provide palliative care include:2
mental health professionals
physical and occupational therapists
Palliative care for Parkinson’s disease
Because Parkinson’s is a long-term degenerative disease, people with this illness can benefit from the additional support that palliative care provides, beginning with diagnosis through late-stages of the disease.
For example, physical and occupational therapists can help you manage the practical issues of daily life that may become more challenging as your disease progresses. Other specialists can help manage symptoms like weakness, sleep disturbances, fatigue, low blood pressure, gastrointestinal problems, confusion, difficult mood issues like depression and anxiety, and trouble thinking or concentrating.
Farther down the line, a palliative care team can also help you plan for and handle complicated medical decisions including managing feeding tubes, handling dementia, setting up assisted living care, and other personal decisions that impact your quality of life and that of your family and caregivers. It can sometimes help simply to talk over decisions with experts who understand what is happening and how to plan for the future.5
How do you access palliative care?
Talk to your physician or healthcare provider about the possibility of getting palliative care alongside your regular treatments. Health insurance, including Medicare and Medicaid almost always covers these services.4 Care can be provided at home, in a hospital, in assisted living facilities, or in special residences.
What is hospice care?
Hospice care always includes palliative care, or keeping the patient as comfortable as possible. The difference is that hospice care happens during the final months of a patient’s life, sometimes only after treatment ends.
Maurie Markman, Changing the Conversation: Palliative Care Does Not Necessarily Mean End-of-Life Care. Medscape. Published May 20, 2016. https://www.medscape.com/viewarticle/863333. Accessed July 8, 2018.
Understanding Palliative/Supportive Care: What Every Caregiver Should Know. Family Caregiver Alliance. National Center on Caregiving. Published 2016. https://www.caregiver.org/understanding-palliativesupportive-care-what-every-caregiver-should-know Accessed July 8, 2018.
Canadian Medical Association Journal. Palliative care viewed as a stigma, despite improving quality of life: Study indicates education, rebranding could help spread benefits. ScienceDaily. ScienceDaily, 18 April 2016. https://www.sciencedaily.com/releases/2016/04/160418130640.htm Accessed July 8, 2018.
What is palliative care? Medline Plus. US National Library of Medicine, Bethesda, MD. Updated June 4, 2018. https://medlineplus.gov/ency/patientinstructions/000536.htm Accessed July 8, 2018.
Parkinson’s Disease and Palliative Care. Center to Advance Palliative Care. 2018. https://getpalliativecare.org/whatis/disease-types/parkinsons-disease-palliative-care/ Accessed July 8, 2018.
Palliative Care. The Relief You Need When You Have a Serious Illness. National Institute of Nursing Research. April 2018. https://www.ninr.nih.gov/sites/files/docs/palliative-care-brochure.pdf Accessed July 8, 2018.