Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Anyone with a serious illness should be able to benefit from palliative care. That may seem like an odd statement, since there is a widespread misconception that palliative care and hospice are the same thing. In reality, palliative care is more general than hospice, and its goal is to relieve the burden of pain or other suffering at any stage of a disease, not only at the end of life, and that burden of suffering may be physical, emotional, or spiritual. Today's guest, clinical social worker Maggie Ivency of the University of North Carolina at Chapel Hill, summed it up this way.
Maggie Parker Ivancic 1:27 Palliative care is a focus of care that concentrates on quality of life, improving people's symptom management, figuring out what's important to them, where they find value, where they find meaning, and who's important to them, so a palliative care team ultimately comes to improve quality of life.
Dan Keller 1:49 How does this relate specifically to Parkinson's disease?
Maggie Parker Ivancic 1:53 That's a great question. As many know, Parkinson's disease is often seen just as a movement disorder, just featuring motor symptoms, but there's also non-motor symptoms that come along with that, and a palliative care team is really good at approaching those non-motor symptoms, including anything from constipation or anxiety, depression, those things that we don't see, and treating those symptoms and improving them.
Dan Keller 2:22 I think a common misunderstanding is that palliative care only comes near the end of life, which really is a function of hospice. So, what's the difference between those, and does one fit into the other?
Maggie Parker Ivancic 2:36 I would say that is the biggest misconception. People often use palliative care and hospice care interchangeably, and palliative care we often see can be used at diagnosis when you find that you're diagnosed with a chronic illness like Parkinson's disease, and the difference between the two is palliative care, like we just talked about, focuses on symptom management, quality of life, but it can be done alongside of the current treatments, the current care plan that you already have. Any rehabilitative therapies like physical therapy, occupational therapy, speech therapy, you can have a palliative care team work with your neurology team, any other specialist that you see at the same time. What makes it different from hospice is hospice, like you mentioned, comes at the end of life when somebody were to have a prognosis of six months or less, when the focus shifts from a person is no longer interested in those rehabilitative therapies like physical therapy, speech therapy, or occupational therapy, when you're focused more on comfort and making each day the best day possible.
Dan Keller 3:48 When is it time to think about palliative care in Parkinson's?
Maggie Parker Ivancic 3:53 I think that is a personal question for each individual person. It's not going to be the same for everybody. I think that when you should start thinking about palliative care as an option is when there may be an unsettled feeling where maybe you are struggling with some of these non-motor symptoms, so if you're struggling with finding meaning living with a chronic illness, or you want an extra layer of support. Palliative care is often seen as an extra layer of support, and if that sounds like something that is intriguing to you, if that sounds like something that you would benefit from, then talk to your movement disorders team about it. It does not just need to be brought up by your team for it to be a benefit to you, you can also advocate for it for yourself.
Dan Keller 4:44 So it really sounds like if you think you need it or want it, you are eligible for it.
Maggie Parker Ivancic 4:50 That's a great question about eligibility for palliative care. If you are diagnosed with a chronic illness like Parkinson's disease, you are eligible.
Dan Keller 5:00 Who offers it, and how do you access it?
Maggie Parker Ivancic 5:03 It's offered in many different settings. There might be a team that is available to you that can come to your home. Those are often called community palliative care centers. Sometimes there's an outpatient where you go to them to receive palliative care in their office. Palliative care can really go wherever you are, depending on the resources in your area.
Dan Keller 5:25 What aspects of the disease does palliative care mainly address?
Maggie Parker Ivancic 5:32 The aspects that they mainly address are those non-motor symptoms that we talked about before. A lot of times people think palliative care just focuses on pain because often palliative care is associated with oncology and the treatment of pain, but they treat a variety of different symptoms, and like I said before, that focus on quality of life, finding meaning, finding what's important to you, and focusing on how to keep engaged in those activities that make life meaningful.
Dan Keller 6:09 Is palliative care covered by private insurance, employer insurance, Medicare?
Maggie Parker Ivancic 6:15 Palliative care is covered by Medicare, and depending on private insurance, it's covered that way as well, but you'd have to look at your specific plan.
Dan Keller 6:27 In terms of either palliative care or hospice later on, when should these options be brought up? And how do you start the conversation about them if you think that someone with Parkinson's could benefit from them?
Maggie Parker Ivancic 6:42 Recently, I had a conversation with a patient, and it was becoming clearer to me that I thought that a palliative care referral might be of benefit to them. So, I asked the question, "Have you ever heard of palliative care?" And the first response I got was, "Are you telling me I'm at the end of my life?" And I said that's exactly why I asked this question. I really wanted to quickly redefine what that meant to them, and so I said no, I don't think that you're at the end of your life. I think that palliative care focuses on the quality of life, and it sounds like there were things coming up for them where they were feeling restless, unsettled, that they just needed more support at home, and when I say that, I don't mean personal care at home. Palliative care doesn't do personal care, but more addressing those symptoms of meaning and some physical symptoms that were going on as well. So, I think that when those questions come up, when you're wondering if it's something that would benefit you, it's really personal to know what's going on in your life, and if you would want that extra layer of support.
Dan Keller 8:03 Does talking about advance care directives open the door to a broader discussion, or are people threatened by advance care directives because they might see this as something like the end of life is in sight?
Maggie Parker Ivancic 8:03 Advance care planning does open the door to palliative care discussions. I think what is grounding about advance care directives for people is it gives people a plan for the future. It's a very general plan. We can't predict the future, we don't know what's going to happen, but it gives us options for different scenarios, and I think that having those conversations early, having those conversations often with the people that you trust, is most important, and when you're having those conversations with your family, it can lead to saying, well, do I need additional support from a possible palliative care team? What I haven't mentioned yet is often when these palliative care teams can come meet with you in your home, if that's available in your area, they can meet with you in your home, and they have a team approach, meaning they have a physician, they have a social worker, they have spiritual care counselors, they have a nurse, and they all work together to come up with a care plan that's individualized to you and what's important to you, and they address things as a team.
Dan Keller 9:15 And I take what you put in an advance care directive is not cast in stone, you can modify it, you can reject it, whatever you want to do later.
Maggie Parker Ivancic 9:23 Exactly, an advance care plan can be changed as many times as your mind changes. And what I think is really important when thinking about those advance care plans is not only that you've completed them, but that once you've completed them, you review them and you share them with the people who need to know, specifically if you have children, if you have friends. Often people hide them away and stick them in a safe somewhere, and then don't look at them ever again, and that can cause stress later on down the road for family members who wish they would have known or didn't know until too late.
Dan Keller 10:04 Right, if they're out of sight and they don't know they exist, it doesn't help.
Maggie Parker Ivancic 10:08 Exactly. And with that said, make sure your healthcare team has them as well.
Dan Keller 10:14 Overall, should palliative care be offered throughout the course of any disease, especially Parkinson's?
Maggie Parker Ivancic 10:20 Especially Parkinson's. The care that you receive from your movement disorder specialist would be defined as palliative care. Right now, we do not have any curative treatments for Parkinson's disease, so the medications that are provided, the rehabilitative therapies that are provided, they are all seen as palliative, so they are treating the symptoms that you're experiencing. So this extra support that we talk about comes with a team and comes more of a whole centered approach, which your movement disorders team may or may not be able to provide for you.
Dan Keller 10:58 Is there a message in a nutshell about palliative care to people with Parkinson's, how they should think about it, what they should do about it?
Maggie Parker Ivancic 11:08 One sentence that I like to put out there to kind of sum it up, when people are confused about the interchangeable nature of palliative care and hospice, or are worried about that, is—I'm going to say it slowly—that all hospice is palliative care, but not all palliative care is hospice. They both use similar features, they both focus on quality of life and symptom management, but palliative care is for people who are active and people who are still interested in being involved with clinical trials and have care plans with their teams. Palliative care is for anyone who just wants that extra layer of support.
Dan Keller 11:53 I suppose the question is, so don't you just want better quality of life?
Maggie Parker Ivancic 11:59 Yes, I think we all do.
Dan Keller 12:01 Great. Thank you. To find palliative care facilities in your area, just search on the words palliative care and your zip code. Major medical centers, often community hospitals, and other healthcare facilities offer such care and support. Also, you can call the Parkinson's Foundation helpline at 1-800-473-4636 and ask one of our information specialists to help you find what you need. You can find more information, many articles, and other resources by searching our website at parkinson.org for palliative care. As palliative care is a part of supportive care, it can be incorporated in the daily routine of people with Parkinson's, starting at the time of diagnosis. Dr. Benzi Kluger of the University of Rochester fleshes out this concept in one of our podcasts called Palliative Care as Supportive Care in PD, and in another podcast, social worker Adriana Gonzalez discusses how palliative care can relate specifically to Parkinson's disease. Just look for the title, How Movement Disorders Fit into the Palliative Care Model on our parkinson.org/podcasts page. If you check the box that says news on the page of search results, you'll find two articles announcing the Parkinson's Foundation's collaboration with the University of Rochester Medical Center to make palliative care a standard practice across all of the Parkinson's Foundation's Centers of Excellence. Finally, you may find a blog by Dr. Janice Miyasaki of interest. It's called Advanced PD and Palliative Care in the 21st Century, just search on her name, Miyasaki, that's M I Y A S A K I. Within that blog, you'll find a link to her expert briefing webinar on the topic, which offers a more extensive delve into the topic. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.
