Palliative Care for Parkinson’s Disease

Podcast Transcript

Introduction: Neuro Pathways, a Cleveland Clinic podcast exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab and psychiatry.

Glen Stevens, DO, PhD: Although Parkinson's disease is characterized by movement symptoms, it also causes a wide range of non-motor complications, such as pain, constipation, cognitive changes and psychosocial issues. Traditional care for Parkinson's disease focuses on the movement symptoms, leaving patients and their care partners to navigate the other aspects of the disease alone. In this episode of Neuro Pathways, we're discussing the importance of palliative care in Parkinson's disease treatment and how it can help patients and their care partners address the most distressing symptoms of the disease and maximize their quality of life.

I'm your host Glen Stevens, neurologist/neuro-oncologist in Cleveland Clinic's Neurological Institute and joining me for today's conversation is Dr. Adam Margolius. Dr. Margolius is a movement disorders neurologist in the Center for Neurological Restoration within Cleveland Clinic's Neurological Institute.

Adam, welcome to Neuro Pathways.

Adam Margolius, MD: Thank you for having me.

Glen Stevens, DO, PhD: All right, Adam, so tell us a little bit about your background and how you came to the Cleveland Clinic, and what your role is?

Adam Margolius, MD: So, I am from Cleveland originally. I did my med school here at Case, and then for residency I was in Chicago, but I always knew I wanted to come back. Ended up coming back here for fellowship in 2018, movement disorders fellowship, and I've been here ever since.

Glen Stevens, DO, PhD: So, when I studied about Parkinson's disease, it was one of those things where pretty much everything we give people early on helps and patients do better. And then late in the disease it's hard to get much of anything to work, and I think the movement disorders folks are spending a lot of time managing the complications related to the disease. But the nice thing is that you're looking at now moving that type of care to the early part and introducing it. So, tell us a little bit about what palliative care is and why it's beneficial for patients with Parkinson's disease?

Adam Margolius, MD: Sure. So palliative care is specialized medical care focused on improving quality of life for patients with serious illness. So, I think traditionally people associate palliative care with cancer and being supplemental to cancer treatment, but more recently it's being implemented in other serious illnesses like heart failure and also lots of neurologic disease, including Parkinson's and conditions related to Parkinson's.

Glen Stevens, DO, PhD: I tell patients in my practice that it's really symptom management and most everybody has some symptom, right? I'm a cancer guy, so we give somebody medications that can give them fatigue, can affect their blood counts, can cause fever, lots of signs and symptoms. And so theoretically I'm doing palliative care.

Adam Margolius, MD: You are.

Glen Stevens, DO, PhD: With all of our patients, but I'm sure and you see it as well, people probably confuse it with hospice. Tell us how you look at those two?

Adam Margolius, MD: Yeah, and not just patients, but other doctors and caregivers aren't always great at distinguishing palliative care from hospice. So palliative care has a role to play throughout the duration of illness, from diagnosis through intermediate stages and all the way towards the end of life. Hospice is a specific part of palliative care just for the end of life. Palliative care can be administered alongside other treatments for serious illness, whereas hospice focuses exclusively on relief of suffering and comfort without any kind of treatments that might prolong life or extend life.

Glen Stevens, DO, PhD: So, I was very excited to see that you guys are running a palliative care clinic. So, tell us how it started, who's involved with it, the various roles of individuals?

Adam Margolius, MD: Sure. So, I finished my fellowship in 2020. At that time around the country there were maybe five to 10 similar clinics, and it was starting to be recognized that this was an unmet need in the care of Parkinson's. So, the timing worked out well for me. So as soon as I started as staff later in 2020, I had our clinic up and running. Involved, so it's a movement neurologist. There's a palliative care specialist involved, and then also a social worker as part of our clinic.

Glen Stevens, DO, PhD: So, tell us what the three different people concentrate on?

Adam Margolius, MD: So, there's a lot of overlap, I'll tell you right off the bat. One thing that we do that's a little unique, when we see a new patient or a follow-up patient, all three of us are in the room together with the patient and their caregiver. So, the neurologist, the palliative care specialist and the social worker all have an hour-long visit at the same time with the patient and their caregiver. So there really is a lot of overlap in the things that we help with.

As the neurologist, I'd say most of my focus is on what they call non-motor symptoms of Parkinson's. So when you think of Parkinson's, when med students are taught, you think mostly about the movement-related symptoms like tremors and stiffness and slowness. Those are called the motor symptoms of the disease. For most patients as they get towards intermediate and advanced stages of Parkinson's, it's the non-motor symptoms or symptoms unrelated to movement that tend to have the biggest effect on quality of life. So, things like confusion, cognitive impairment, constipation, fatigue, just like in other illnesses, anxiety, depression, sleep problems, and the list goes on and on.

So as a neurologist, mostly I focus on those non-motor symptoms, trying to find ways to relieve distressing symptoms for the patient. The palliative care specialist, he does some non-motor symptoms as well, especially pain because as a palliative care specialist, that's one of his areas of expertise, is pain control. He is also very adept in conversations involving goals of care and planning for the future, which are integral parts of palliative care. So, both in terms of what interventions a patient may or may not want, as well as thinking about what their goals and values are as years go on in terms of where they want to be living, who they want to be helping with decision-making, that sort of thing.

The social worker might be our most important team member. She helps with a different avenue of improving quality of life, helping people get additional equipment around the home like medical equipment, hospital beds, sometimes something as simple as grab bars or shower chairs. Then also, if possible, it can often be very helpful to get a home health aide or additional assistance around the house. And then she can also be very helpful in those transition periods of maybe transitioning from home to a nursing facility or maybe at some point transitioning to hospice. So, I think between the three of us, we are able to provide pretty comprehensive care for our patients.

Glen Stevens, DO, PhD: And where do you physically run the clinic?

Adam Margolius, MD: Just in our movement disorders clinic.

Glen Stevens, DO, PhD: And how often are you running the clinic?

Adam Margolius, MD: Right now, we do about two to three half days a month. When I started in 2020, it was just one-half day a month. And then as demand grew a little bit, now we're alternating between two or three half days a month.

Glen Stevens, DO, PhD: And how do you do follow-up with it? Because you said you do an hour intake initially, what's your follow-up? Do you do multidisciplinary follow-up or individual?

Adam Margolius, MD: For most patients we do, although we are pretty flexible in that regard actually. But for most patients, we'll see them again in a couple of months in our Parkinson's palliative clinic, which we actually call the Care PD Clinic, but it'll be a half hour visit instead of an hour visit. We can also see follow-ups virtually, but still with our whole team on our end. Other times we sometimes see patients more of as a one-time consultation, depending on what situations might've led to the referral, and they might go back to the regular movement disorder provider for follow-up. And other times if maybe they don't have a longstanding relationship with the referring provider, sometimes I take over as their movement disorders neurologist and see them in my own clinic.

Glen Stevens, DO, PhD: So, if I was a movement disorders specialist within the Cleveland Clinic, would I be part of this Care PD Clinic or no, you run it and then they would come back to me if I wanted to continue to follow?

Adam Margolius, MD: So yeah, I'm the only movement disorders neurologist involved in the clinic, but the follow-up after they're referred to us is pretty flexible. And because we only take referrals from within the Cleveland Clinic, it's very easy to communicate with the referring providers. Sometimes we co-manage and maybe they alternate a regular follow-up and then following up in our specialty clinic. We're pretty flexible in that regard.

Glen Stevens, DO, PhD: So, there's a fair amount of Parkinsonism.

Adam Margolius, MD: Correct.

Glen Stevens, DO, PhD: Not everything is Parkinson's. So, what about the Parkinsonism? Do they come to your clinic as well or it's just defined Parkinson's disease.

Adam Margolius, MD: So, we see neurodegenerative Parkinsonism's as well, or atypical Parkinsonism or Parkinson's plus syndromes, all refer to the same things. So that's those other conditions like PSP, MSA, corticobasal degeneration. Those patients have a lot of overlapping symptoms with Parkinson's disease, but sometimes they can progress a little bit quicker and often their palliative care needs are very high. So, we didn't want to exclude them from this type of care.

Glen Stevens, DO, PhD: It would seem that they would even need the process more, certainly early on in their disease.

Adam Margolius, MD: Yeah, the portion of patients we see with atypical Parkinsonism is higher than your average movement disorder clinic for that reason.

Glen Stevens, DO, PhD: I guess you're in year number three. How do you feel it's going?

Adam Margolius, MD: I think it's going really well. It's really rewarding. I think both patients, caregivers and other providers see and appreciate the service that we offer. I think we're able to really help people.

Glen Stevens, DO, PhD: Do you need to bring in a fourth person or the three that you have are fine, or is there some other discipline you need to bring in or that can just get consulted out for the people that have, let's say a difficulty with nutrition? Do they need to have a nutritionist there or can they just see nutrition.

Adam Margolius, MD: That's a great question.

Glen Stevens, DO, PhD: Thinking about bringing someone else in?

Adam Margolius, MD: So yeah, I think one of the strengths of our clinic is that we're able to have all of us in the room together with the patient and the caregiver and limit it to a one-hour visit, but still feel like we're covering everything we need to cover. We do sometimes refer to those types of services that you mentioned whether it's nutrition, physical therapy, occupational therapy, speech therapy, chaplain services sometimes. But I think for most patients, we're able to be fairly comprehensive. So, I think for now and for the foreseeable future, we're going to keep our team the same size.

Glen Stevens, DO, PhD: So, I think my answer to the next question I'm going to ask you is a very obvious one, and that is, what are the signs that a person with Parkinson's disease or Parkinson's plus Parkinsonism might benefit from a referral to a palliative care clinic? My answer to that is I think everybody would benefit from it, but short of everybody benefiting from it, who should really come to it?

Adam Margolius, MD: Who would benefit and who should actually be referred? Because it is a little bit of a limited resource. Generally, we encourage the other providers. I don't want to constrict them at all. If they think this would be helpful for the patient caregiver, we encourage them to refer. More specifically, there's three ideas that I ask people to keep in mind for patients who might benefit most, and I've alluded to a couple of these things earlier. One is when patients are overly troubled by those non-motor symptoms of Parkinson's, when traditional therapies aren't working as well as we'd like, especially if pain is a consideration that that's something that our Parkinson's Palliative Clinic does in a little deeper extent than your average movement disorder visit.

Second thing is if there's a significant caregiver burden or strain, often the caregiver role can grow and grow and that can lead to decreased quality of life for the caregiver, which can directly affect the patient too. So, if there's a lot of caregiver strain present, that's something that we can help with. The third thing is if there's questions about the future, planning for the future or about death or dying, those are issues that we can help out with as well.

Glen Stevens, DO, PhD: I think as a neurologist, probably one of the areas that I feel that I'm not as good in is pain and maybe other neurologists feel, you know. Certainly, headache people are good at managing pain and there are some pain people, but I think that we have to rely on the expertise of individuals that come from other areas that have a deeper understanding of certain things. So, you mentioned this a little bit, but let's expand on it and that is the care partner.

I often tell patients that the toughest chair is the one beside the patient because they don't have the disease and they sometimes feel they're helpless. This is what they'll say to me, and I say, "Not at all. You're very, very important," but how do we help them?

Adam Margolius, MD: The first thing is recognizing that they are under that degree of strain or burden. A more neutral term might be caregiver experience. There are ups and downs there, but certainly the first way to help them is recognizing that they could use some help. I think in most neurology visits outside of oncology certainly, people aren't necessarily asking the caregiver questions about themselves and how they're doing.

So, the first step is to ask them how they're doing, ask them how they're dealing with this responsibility. Make sure they're taking some time for themselves and doing some things they enjoy. In terms of how we help them, that's where our social worker plays the biggest role. One, it can help just to normalize their experience knowing that they're not alone and there are support groups out there for caregivers. I actually think the Cleveland Clinic has one for any neurologic illness, a caregiver of neurologic patients that we refer to sometimes.

And then also finding ways to allow the caregiver to take some of that responsibility off their hands, even if just for a little bit. If we can help get a home health aide there for a few hours a week or help them find ways to reach out to family or friends so that caregivers can take even just an hour or two a week to do some things for themselves.

Glen Stevens, DO, PhD: I think that the caregivers don't understand what they don't understand, and they feel very guilty about not being there 100 percent of the time. And ultimately, we all understand that's not good and there needs to be some caregiver respite, and sometimes that's even a little bit longer when someone may need to go somewhere for a week to give both parties a break.

Adam Margolius, MD: Yeah, we've certainly helped set up some of our patients and caregivers with those services.

Glen Stevens, DO, PhD: So, on that same line, is there a separate support group in movement disorders for Parkinson's patients, or no?

Adam Margolius, MD: For Parkinson's patients, yes.

Glen Stevens, DO, PhD: Okay.

Adam Margolius, MD: Through the Parkinson's Foundation actually, which is the national Parkinson's organization. There's a bunch of local support groups around the area that are flexible for people's schedules and that sort of thing because there are so many groups. Specifically for Parkinson's caregivers, that does exist in some places, and I think there are virtual options for our patients.

Glen Stevens, DO, PhD: And advice that you would give somebody that is listening to this and goes, "Boy, this sounds like a really good idea? How do I start that myself?"

Adam Margolius, MD: As a movement disorder specialist or neurologist, I would say one thing you could do to get started is reach out to your palliative colleagues, whoever they may be or wherever they may be, and at least get a sense from them on their experience with neurologic patients. Are they seeing Parkinson's patients at all? How can we collaborate and make this better for the patients? There are other ways to do it besides our model, but I think getting the palliative care champion, so to speak, on board and getting their opinion and helping to work forward so that you don't have to do it alone and so that you're doing it in the best possible way. That's how I would start.

Glen Stevens, DO, PhD: And certainly, they can always be referred to and see them at a separate visit, just like the social worker. The social worker may or may not be available to come and see the patient.

Adam Margolius, MD: What we have is a luxury, and it's still very beneficial to do it on separate visits. And these days virtual visits are more and more accessible. So, there are ways to make it easier for the patient, but still give them those same kind of services.

Glen Stevens, DO, PhD: So, in terms of running your multidisciplinary clinic, are there any specific operational differences between your other clinics? Do you have a combined template that the three of you all will document in and then bill from? Is it three individual templates?

Adam Margolius, MD: Yeah. So, it is a little tricky, and at the beginning it took a little bit of effort with the Epic people to set this up the way we liked it. So, as it is now, the patient appears on each of our schedules at the same time and we each write our own note, but it is bundled into the same encounter. If you're seeing the patient simultaneously, we can each still bill for time, actually, with the exception of the physical exam. That's the only thing you can't overlap with, but that's how we set it up.

Glen Stevens, DO, PhD: Okay. Well, Adam, this program sounds like a vital part of care for patients with Parkinson's disease. I appreciate your sharing your insights with our audience today and wish you the best of luck as you move forward. Thank you.

Adam Margolius, MD: Thank you for having me.

Conclusion: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, clevelandclinic.org/neuropodcast, or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget, you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our Consult QD website. That's consultqd.clevelandclinic.org/neuro, or follow us on Twitter @CleClinicMD, all one word. And thank you for listening.