Episode 105: How Movement Disorders Fit into the Palliative Care Model

Dan Keller 0:08

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.

Palliative care is appropriate for any disease that causes distress. In fact, palliation means to ease the burden of the symptoms of a disease for both the person with the disease and for care partners. The burden may be physical, emotional, or spiritual. As more people with Parkinson's understand the benefits and relevance of palliative care, many are adding it to their usual care. I spoke with licensed clinical social worker Adriana Gonzalez of the University of California, San Diego, where she has had an integral role in developing and participating in a palliative care clinic specifically for people with neurological disorders. She said she often brings up the topic of palliative care with her patients,

Adriana Gonzalez 1:34

because so many people don't have an understanding of what palliative care is. And so palliative care did grow out of the hospice movement, but palliative care, what makes it different or distinct from hospice, is that it really is for people who are not at the end of life in their disease trajectory, but really meant for people who are still maybe in the middle of their Parkinson's disease journey and looking ahead to what changes they may face. The goal of palliative care is to support them through that.

And so one of the things that we talk about is it's an additional layer of support. And when we talk about an additional layer of support, what we mean is acknowledging that the Parkinson's disease is chronic and progressive. We really want to get to know people in the middle of their disease course to help and support them as they navigate all of the different changes that come with disease progression.

Dan Keller 2:34

Since it is progressive, which would indicate it starts essentially at diagnosis or even before diagnosis, when should palliative care begin?

Adriana Gonzalez 2:43

My recommendation, when I'm working with families, is to seek out or request a palliative care referral maybe in the middle of their diagnosis, when they're really starting to see changes that are impacting their quality of life. Because palliative care is a framework where the goal is to manage symptoms. Historically, our movement disorder specialists, they really focus on the movement piece. Our palliative care doctors are looking at the whole person and really taking a holistic approach to look at the other non-motor symptoms, like pain, GI symptoms, to really support patients in acknowledging which ones are really impacting their quality of life and how are we going to treat those. So, taking a very patient-centered approach.

Dan Keller 3:30

Is that different from standard medical care? Being patient-centered—shouldn't all medical care focus on the patient?

Adriana Gonzalez 3:37

Yeah, I think what's really different about palliative care is that we're using a team approach, and so we're a multidisciplinary—sometimes we use the word transdisciplinary—really meaning that the part of the team that is working with the family and the patient is really working together to meet all of those different needs. So the difference with palliative care is that we have the medical provider, but we also have a nurse, a chaplain, and a social worker, and so we're all looking at the patient from that lens of what is important to them, what impacts their quality of life. And with all of these different disciplines, we're able to assess different areas of their life in a way that's a little bit different from standard care.

Dan Keller 4:24

Where can palliative care be accessed? Do people have to go somewhere, or is it pretty broad ranging where it's available and how it's available?

Adriana Gonzalez 4:33

It's really going to depend on where someone is getting their medical care. So, at the University of California, San Diego, we have an outpatient neuropalliative clinic, and our hope is that more centers across the country kind of adopt that model. But in other areas where maybe somebody isn't connected to a Center of Excellence, or their Center of Excellence is still ramping up their palliative care support, they could find a palliative care consult on an outpatient basis. They could also find an agency. Some hospice agencies will have a branch of their services that provide palliative care.

So it really starts with having a conversation with their neurologist or their movement disorder center to say, "Hey, in our medical system that we're working through, do you have a palliative care outpatient clinic, or what do you know about palliative care in our particular area?"

Dan Keller 5:29

Is it covered by Medicare or any private insurance?

Adriana Gonzalez 5:33

It is, typically, if someone is seeking palliative care through their medical provider. So if they're part of UC San Diego, and we have this outpatient palliative care clinic, it will be covered. Where it might get a little bit tricky and might depend on insurance is if someone is getting the palliative care service outside of their medical system. So if it is through a hospice agency, it might have different restrictions or regulations.

But I always encourage my families to ask and to see what is covered, what can that look like, and to really ask, you know, "What are the tangible services that can be provided to me?" And making that informed decision is really going to help them kind of decide what a good next step is.

Dan Keller 6:22

Do people get the idea that palliative care is only associated with hospice, and does that become a barrier to people wanting to accept palliative care or enter it?

Adriana Gonzalez 6:35

It's definitely a barrier. I think a lot of people identify or see palliative care as one step down from hospice, and that creates a lot of anxiety or worry that, "You know, I'm not there yet, and that's not really something I want to talk about." And so when I go out into the community, or when I talk to my families, I remind them that palliative care is really that additional layer of support where our goal is to get to know the family and the patient so that as the disease progresses, and as they encounter different symptom changes that impact quality of life and impact emotional wellness, we will have that relationship. And we can talk through those symptoms and what it brings up for the family, with the goal of also talking about the future.

It's not something we're going to jump right in from the first visit, where we talk about end-of-life goals, but over time, as we get to know the patient and the family, that is something that we can support them with. You know, I'll give you a great example of how palliative care really kind of dives into getting to know families. When we first meet families, it's the whole team—it's the chaplain, it's the social worker, and it's the medical provider—and we not only ask questions about their symptoms and their Parkinson's disease, but also about, "What did you work in? What brings you joy? What family members live close by? Tell me about how you met your partner or your spouse," because we really want to get to know that person.

For example, I had a patient who liked to build things. He built a tree house for his children and always fixed things around the house, and that information was really key because when that started becoming more difficult because of the symptoms and tremor, we knew because we had asked those questions that that was a huge loss for him. And we knew that that was something that we needed to spend time with—to allow him to mourn that loss of no longer being able to use his hands to build things, and to think of ways that he could transmit that love of building to his adult children, to his grandchildren, and that he could find joy in maybe teaching them to now be able to build things. So that relationship that we build at the beginning, that information that we gather in the beginning about who this person is—which is really the core of patient-centered care—really helps us in identifying when a symptom comes that's devastating to them, how do we best support them through that?

Dan Keller 9:14

In that regard, it sounds like palliative care takes the long view. So, when is it appropriate for patients with Parkinson's disease to complete an advance care directive?

Adriana Gonzalez 9:26

When I talk about advance care directives, I really kind of give a global answer to everyone: at any point in their life, everyone should have an advance care directive, because none of us are guaranteed tomorrow, and I think the pandemic has really highlighted that for so many of us. Let's think about what's important to us, what we value. If we are in an accident, do we want to be intubated? For how long? Who's going to make decisions for us, and who's going to be a proxy to that?

However, with that, a lot of us still... there's a lot of trepidation to having to make those decisions, because it brings up fear, it brings up anxiety. And so when I meet families, it is one of the first questions that I ask. It's not something that I push, but I do encourage people to sit and think about: who in my life is the person who, if I cannot speak for myself, can help me make medical decisions? Do I want things like a feeding tube? Do I want to be intubated? Are those things that I value, or is that going to add quality of life to my life?

And I encourage everybody to think about it from the beginning when they first meet me, and if that is an uncomfortable topic, then we just kind of work through that. And so I encourage everybody to think about it, to look at what an advance care plan asks and what it is, and to explore a little bit. And if it's difficult to do, it's something that we can explore together and find out why is this difficult, why is it hard. So I always encourage people to start being curious about the advance care directive, hopefully fill it out, but to really think about, "Why is this hard for me and what can I do to help me kind of work through what's so hard about it?"

Dan Keller 11:15

How does palliative care specifically serve people with movement disorders besides the things you were just talking about? When people have traditionally thought about palliative care, it's for pain control, but it seems like a lot of people are functional and have a long course ahead of them. So, what can palliative care do about movement disorders?

Adriana Gonzalez 11:38

Yes, so that's a great question, and it is one that I get often because palliative care and hospice were really championed by oncologists to work with people who were living with cancer and having to go through a lot of invasive treatments. A lot of people kind of put palliative and hospice in that boat, and so what we're trying to do is we're trying to expand that vision of what palliative care is, to remind people that really it's a framework that's looking at symptoms.

So if a person with a movement disorder isn't experiencing a lot of pain, they may still have other non-motor symptoms that are really barriers to their quality of life—things like constipation or inability to sleep, insomnia, anxiety, depression, so non-motor symptoms. I think a lot of research has shown that most people say, "The motor symptoms, I can manage that; the medications are working for it. You know, I adapt to the changes to my movement. But it's the non-motor symptoms that are really impacting my quality of life." Cognition changes, and so the role of palliative care—the goal of palliative care—is to really draw out those other symptoms and to try to find treatment, which could be medication, but it could also be therapy for some of the mental health challenges or emotional challenges. It could be working with the chaplain to explore that restlessness and to help find peace, either through religion or a spiritual practice. That's when we go back to kind of this holistic view of the patient, where maybe medication is the route to go, and the provider will explore that, but we have these other disciplines who can talk about other ways to cope or to manage those symptoms.

Dan Keller 13:26

Do you encounter commonly fears or concerns that prevent people from wanting to begin palliative care?

Adriana Gonzalez 13:35

Definitely. I think having to meet with a new doctor, having to repeat some of your history, not really maybe having a clear understanding of what tangible services are going to be provided to you are a lot of the barriers to palliative care. And so our goal is to educate about how it could be helpful, and to really, again, going back to being patient-centered, we let our families know: we can meet monthly, we can meet every six months, we can meet once a year. We want you to find value in this appointment and in this clinic.

And so, if right now you're feeling like, "I'm pretty stable, I did my advance care directive, I have my POLST, I'm feeling pretty good, symptoms are pretty well managed," let's touch base again in six months. So it really is allowing them to guide what makes the most sense, and that's how we try to support families in understanding what palliative care is, and that we are there to be that support in whatever way that works best for them.

And it really is patient-centered, but it's actually very family-centered, where we're looking at the patient but also the primary caregiver, which oftentimes is a loved one—either a spouse, or an adult child, or even a parent in some situations. And so we want to get to know everybody in that dynamic so that we can provide support to everybody, because if we're supporting the caregivers and the family members, then that patient is going to do better.

Dan Keller 15:15

Once people have started to take advantage of palliative care, do they wish they took advantage sooner?

Adriana Gonzalez 15:21

I think a lot of people talk about, "I wish I would have known about this sooner." Because what happens is, when somebody maybe is in the last six months or year of their life, there have been a lot of changes. Maybe the caregiver is already feeling very overwhelmed or nervous about the different symptoms. Maybe that patient has already been in and out of the hospital and has not been recovering from those hospitalizations. And so I think what people see when they enter into palliative care is that we are there as an entire team supporting this family through that journey of Parkinson's disease progression, and then really supporting them and identifying, "I think this is a time for us to refer to hospice."

Because Parkinson's disease impacts everybody so differently, it's not clear when somebody is ready for hospice or is a candidate for hospice. So, the other thing we talk about is by being part of our team and getting to know us in the middle of your disease trajectory, we are really going to be monitoring and looking at progression and the changes in symptoms, so that when we see that things are starting to take a turn, we can really have that conversation. And we've already built a relationship, we've already built some trust, we have already gotten to know the family, so we can really have that conversation in a way that's compassionate, that's empathetic, and that will guide the family to next steps. And I think a lot of families express gratitude for that. And when we kind of meet them closer to the hospice referral place, I think they would have liked to have known us a little bit sooner, just so that conversation—it's never easy, but at least it's from a place where we really have gotten to know each other.

Dan Keller 17:18

Have we missed anything important or interesting to add?

Adriana Gonzalez 17:22

I always encourage my families, because Parkinson's disease really impacts everybody so differently... and so my specialists always say, "You know, I can line up 10 people with Parkinson's disease in front of me, and I'm looking at 10 people with Parkinson's disease." And so knowing that, I try to explore with my families: here are the services that can be offered through palliative care; here's the lens with which they are looking at every patient. Does that resonate with you? Does that fit into what you want out of your medical care?

And I try to remind them, if you have the opportunity to consult with palliative care, that doesn't mean you're letting go of your movement disorder specialist. In so many cases, it just is that additional layer of support, and you can go to that first appointment, and you can decide it's not for you, or you can decide that you really maybe... you'll check back in in another year. And so I like to empower my families to learn and explore the different types of services that exist within their centers so that they can find the type of care and the type of service that is really going to be a good fit for them. And I always encourage them to be open to that conversation and also to be honest when something is a good fit or isn't a good fit.

Dan Keller 18:47

Very good. I think you've shone a light on a subject people may not have been fully familiar with, and the breadth of the subject. So, thank you very much.

For more resources on palliative care, you can go to parkinson.org/library and search for palliative care. You'll find an expert briefing in which Dr. Janice Miyasaki talks about advanced Parkinson's and palliative care. There is also a fact sheet on palliative and hospice care, and within it is a link to our Caring and Coping book, A Care Partner's Guide to Parkinson's Disease. That same search will bring you to a link to an earlier podcast in which Dr. Benzi Kluger discusses palliative care as supportive care in PD, which he believes should start at the time of diagnosis.

The Parkinson's Foundation is partnering with the University of Rochester Medical Center, a Parkinson's Foundation Center of Excellence, on an initiative entitled Implementing Team-Based Outpatient Palliative Care in Parkinson's Foundation Centers of Excellence to make palliative care a standard practice across all of its Centers of Excellence in the US. To learn more about the initiative, you can visit the PCORI page listed under related resources for this episode's page at parkinson.org/podcasts.

If you have questions about this topic or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. 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. Until then, 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.

Adriana Gonzalez is a graduate of San Diego State University obtaining her master’s degree in social work and is licensed in the state of California. Adriana has spent the last nine years dedicated to providing clinical social work services in a medical setting, eight of those years have been at the University of California in San Diego. As the social worker at the Parkinson and Other movement disorders center, a Parkinson’s Foundation Center of Excellence, Adriana has been committed to working closely with the Parkinson’s Disease community to not only meet the needs of the patients treated at the center but also the Parkinson’s Disease community at large. During her time at the center, she has developed a Latino outreach program & collaborated with local support groups and community organizations to educate the community about Parkinson’s Disease. Adriana has completed an intensive advanced palliative care certificate program for social workers and alongside the palliative care team at UCSD has played an integral role in developing & participating in a Palliative Care clinic specifically for people living with a neurological disorder. Adriana is a strong advocate for supporting patients in maintaining their quality of life throughout their Parkinson’s disease journey from diagnosis to advancing disease.