Palliative care is one of the most misunderstood terms in healthcare. The vast majority of people think it refers to end-of-life care (or hospice care) and associate it with dying. Because of this confusion, palliative care carries a stigma that prevents many people from accessing its benefits.1
PD Community views
The patients, healthcare providers, and caregivers in our health union PD community have the same misunderstandings about palliative care that we see elsewhere in the healthcare community. Our 2018 Parkinson’s Disease In America survey shows limited knowledge of palliative care, and even when people have heard of it, they often confuse it with end-of-life (or hospice) care.
Results of our survey show that while roughly half of our respondents have heard of palliative care (51%), only 2% of patients have accessed it, and only 1% have asked a healthcare provider about it. A mere 7% of our respondents have ever been offered information on palliative care by healthcare providers. And a full 92% have never discussed it at all.
Typical responses to our question “What does palliative care mean to you?” show confusion with end-of-life care, just like we see in the rest of the healthcare community.
What is palliative care?
In fact, palliative care can begin from the moment of diagnosis. It simply refers to care that helps patients and their caregivers manage better and feel more comfortable during a serious illness.3 This can include helping patients handle the challenges of daily life, relieving troublesome symptoms like depression and sleep disturbances, and planning for disease progression.
Studies show that palliative care can help increase survival time and enhance quality of life for people living with serious illness.3 It is a shame that so many people fail to access its benefits because of a mistaken association with death and dying.
Some medical professionals want to re-name palliative care as “supportive care” to help settle some of the confusion.1
Palliative care uses a team approach, thinking about the patient in the center of efforts to help with medical, social, psychological, and spiritual challenges. People who practice palliative care include:2
Palliative care can begin as early as diagnosis. It can then continue throughout the course of treatment and illness, alongside more traditional medical treatments intended to cure disease or relieve symptoms. As your illness progresses, the nature of your palliative care changes.
How can palliative care help with PD?
Given that 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-stage disease. It can often help just to talk over decisions with experts who understand what is happening and how to plan for the future.
On a practical level, physical, occupational, and speech therapists can help you manage the challenges of daily life that may become more difficult as your PD progresses. Other therapeutic specialists can help you manage symptoms like:
A palliative care team can also help you plan for and handle complicated medical decisions that happen farther into your disease progression. These include handling dementia, managing feeding tubes, setting up care in assisted living facilities, and making other complex legal and medical decisions that impact your quality of life and that of your caregivers and family.4
How can you access palliative care?
The simplest way to find palliative care resources is by getting a referral from your doctor. Palliative care is covered by most insurance plans, including Medicare and Medicaid.2 There is also a directory of palliative care providers on the website of the Center to Advance Palliative Care. You can receive palliative care in hospitals, at outpatient clinics, and sometimes at home.4
What’s a good way to ask your healthcare provider?
Now that you know about palliative care, ask your healthcare provider about accessing its resources. If you are not sure where to begin, try some of these questions, which could trigger a conversation with your doctor, nurse, or other healthcare provider:
I am having trouble sleeping. How can I get help?
It is hard to handle day-to-day tasks with my physical limitations. Is there therapy that can help?
I feel overwhelmed and alone. Are there resources to help my family and me cope?
What can I expect as my disease progresses?
What should I be thinking about so my family can manage better?
How can I relieve some of the stress on my family and me as we navigate the challenges of this illness?
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.
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.
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.