Parkinson disease affects 1% to 2% of people older than 65 years. Most known for its distinctive motor symptoms, other distressing symptoms are pain, fatigue, depression, and cognitive impairment. About 2/3rds of individuals with Parkinson’s will die from disease-related complications, making it the 14th leading cause of death in the United States. While there are great palliative care needs for this population, little has been published on how best to meet these needs.
On today’s podcast we talk with Benzi Kluger from the University of Rochester Medical Center and the lead author of a JAMA Neurology paper that compares outpatient integrated palliative care with standard care alone in 210 patients and 175 caregivers. Every 3 months for a year, participants received palliative care visits either in person or via telemedicine from a neurologist, social worker, chaplain, and nurse with guidance from a palliative medicine specialist. Benzi’s study demonstrated the palliative care group had better quality of life, symptoms burden, and advance directive completion.
In addition to talking about the study, we get tips on how best to care for Parkinson’s patients, both in palliative care and geriatrics. We also discuss some of these other helpful articles:
- Implementation issues relevant to outpatient neurology palliative care. Ann Palliat Med. 2018
- Top Ten Tips Palliative Care Clinicians Should Know About Parkinson’s Disease and Related Disorders. J Palliat Med. 2018
- Palliative care and Parkinson’s disease: outpatient needs and models of care over the disease trajectory. Ann Palliat Med. 2020
- Palliative Care and Parkinson’s Disease: Caregiver Perspectives. J Palliat Med. 2017
- Parkinson disease patients’ perspectives on palliative care needs: What are they telling us?
Eric: Welcome to the GeriPal podcast, this is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have on Skype today?
Alex: And on Skype today, we have Dr. Benzi Kluger, who is director of the Palliative Care Research Center and the Neuro Palliative Care Division at the University of Rochester Medical Center. Welcome to the GeriPal podcast, Benzi.
Benzi: Thanks for having me.
Eric: So we are going to be talking about a JAMA Neurology paper that you were lead author on, on comparison of integrated outpatient palliative care with standard care in patients with Parkinson’s disease and related disorders just came out. And maybe get some tips on how best to care for Parkinson’s patients, both in palliative care and geriatrics. But before we do, we always start off with a song request, we got a song request for Alex.
Benzi: I do. How about Cat Stevens, Father and Son?
Alex: Great. And why this song?
Benzi: It has a special place in my heart. I always get a little bit teary when I hear it, it reminds me of my dad who passed away.
Eric: Wonderful Alex-
Alex: Thanks Benzi.
Eric: … Benzi, I would love just to start off, how did you get interested in this intersection of palliative care and movement disorders, Parkinson’s disease?
Benzi: Yeah, well, it wasn’t through a well developed career plan, I can tell you that. It really started, I had movement disorders and behavioral neurology as a fellow and after a fellowship, began seeing patients where our current model of care really doesn’t have very much to offer. I could give people aricept, I could take away their driver’s license, I could watch their cognitive scores go downhill and at some point they would just stop coming to see me because I really had nothing to offer them. And so I had both a spiritual and a personal crisis around that. On the spiritual side, I got more into Zen, worked on my relationship with suffering, dying and on the professional side. I had the fortune of meeting Jean Kutner, learning more about palliative care. Janis Miyasaki who is one of the coauthors had been doing palliative care for Parkinson’s since 2008. And it was just this, kind of, this is what I was meant to do kind of moment once I started to get into it. And without having planned to do so, I mean, that has really become my career.
Alex: And can you tell us a little bit more about what it’s like clinically from, what were the gaps that you saw specifically in palliative care for people with Parkinson’s disease that really triggered your interest in this area?
Benzi: Yeah. One was when working with difficult emotions. So, as a medical doctor, we’re trained, I could diagnose somebody with depression or anxiety. I could prescribe them Prozac, but I was seeing somebody who I didn’t have the language for it, but they were having anticipatory grief, they were frustrated, they were experiencing a fear of dementia and I felt really kind of helpless and powerless in front of these very strong emotions. And I wanted to do something about it, but I didn’t have any tools to do anything about it.
Benzi: I would say, another singular event that I talk about a lot was I was in clinic with a young girl, woman, 20 years old with Huntington’s disease. She had had it for 10 years and I asked her if she was having problems sleeping and she said she was because she was afraid of dying in her sleep. And that was just this real kind of elucidating moment. I did something, four years of communication training and spiritual training and stuff that was supposed to be part of my medical curriculum couldn’t do, which was really hitting home for me that, why spirituality was important in taking care of people with serious illness.
Benzi: And actually, I remember talking to Jean afterwards, I’m like, “What do you do when this comes up?” And she told me about chaplains and what chaplains did, because I really didn’t know what chaplains did at that point. And actually a month later we had a team, we had a chaplain volunteer, we had a social worker, we had this clinic that we started, a half day a month, really on a volunteer basis. I think I got it done because I didn’t tell anyone about it. We didn’t get approval for it. And then what we learned in that clinic over the course of the next year really became this PCORI grant, which then became this JAMA Neurology paper.
Eric: How long ago was that clinic?
Benzi: I think it was 2013. Yeah. I think it was February 2013, we had our first clinic and actually most of the people on that team are also on the paper.
Eric: And when you think about palliative care and Parkinson’s disease and movement disorders, is that a hot topic in the movement disorders field? Or are you a little niche of the field who is thinking about this?
Benzi: Yeah, I would say, and this is probably true in a lot of areas, I think it’s growing. It’s not as hot as I think it should be. Maybe this paper will help to change that. I think there has been some lip service given to it, I would say over the last three to five years that the field of neuropalliative care has really taken off.
Benzi: In 1996, the American Academy of Neurology had a position piece on palliative care and felt that it was the job of every neurologist to learn the principles of palliative care. And between 1996, I would say in 2016, absolutely nothing happened. It wasn’t part of these, I knew nothing about it, but I think it’s finally gaining some traction. I think part of that, being interested in your experiences with us, but I think younger doctors, people coming out of medical school and residency now have a broader awareness of palliative care or are seeing things differently. When I talk to people who are interviewing for residency now and I tell them what I do, that not everybody, but a lot of people really light up about it. So, I feel it’s a way that the field is moving in growing, but it hasn’t really become, certainly not to the degree that it has in cancer, something that is mainstream and accepted.
Alex: Yeah. For our listeners, as we are starting to think about focusing on Parkinson’s disease, our listeners are doctors, nurses, social workers, chaplains, a few researchers and few other folks, but they are a fairly wide audience and they may have more or less familiarity with Parkinson’s disease. I wonder if you could give sort of just a lay explanation of what Parkinson’s is and what typical courses and symptoms.
Benzi: Sure. So, Parkinson’s disease is the second most common neurodegenerative illness. So it’s second only to Alzheimer’s disease. It’s about one to 2% of people over age 60 will develop Parkinson’s. But the other thing that I will mention upfront is also in the United States, the 14th leading cause of death. And a lot of times I think neurologists may be even more guilty of this than others, that we don’t think about Parkinson’s disease as a terminal illness. Pictures of Parkinson’s disease is tremor, it’s Michael J. Fox or Davis Phinney who is a famous cycler. We talk about living well with Parkinson’s, but Parkinson’s diseases is a terminal illness, that people’s life expectancy is shortened, people of complications of this disorder. And I think one of the challenges with Parkinson’s, in terms of trying to describe it succinctly is that there’s a lot of variability, that we have people who have had Parkinson’s for 30 years and they look pretty good as long as they’re on their medicines.
Benzi: And we have other people who within five or 10 years are wheelchair bound, they are demented and they die of aspiration pneumonia or fall or something like that. So, I think it’s part of this variability and heterogeneity that makes it challenging to tackle with the succinct palliative care model. The traditional motor symptoms, tremor, slowness, problems with walking are there. Other things people don’t think about as much is that 80% of people with Parkinson’s will develop dementia if they live 15 to 20 years with the disorder. About two thirds to three fourths will have significant pain related to their Parkinson’s. There’s a myth out there that Parkinson’s is not painful, that’s not true. Fighting depression are about twice as common as say rheumatoid arthritis has a similar level of disability. So it affects people’s mood. Demoralization is more common with Parkinson’s and other neurologic disorders, caregiver burden is high. And so as I talk about it, I mean, hopefully people listening in are like, “Why haven’t people been doing palliative care for Parkinson’s all along?”
Benzi: I think when you really get beneath the surface of it, it’s a perfect disorder for a palliative model of care.
Eric: When do you think that palliative model of care for Parkinson’s… When do you think it should happen?
Benzi: Well, I think it should happen… And we can talk about what we mean by palliative care-
Benzi: … But I think the palliative model needs to happen at the time of diagnosis. And we have actually a qualitative article, there was an article actually done 10 years before we did, I call it dropping the bomb. The experience of getting the diagnosis of Parkinson’s. And this also, I think goes into a blind spot that a lot of neurologists have is that most neurologists and I would say myself included for quite a while, felt that giving someone a diagnosis of Parkinson’s was good news, because it’s better than Alzheimer’s, it’s better than ALS, it’s better than a brain tumor. We have treatments for it, we have carbidopa and levodopa and deep brain stimulation, but for the person getting that news, of course it’s not good news.
Benzi: And when we did these qualitative interviews, I would hear this story again and again, that people saw a neurologist based on the way they walked or their tremor, or they were diagnosed within five minutes, they were given Sinemet, they were told to come back in six months and they were in tears by the time they got to their car. And it took them several years for them to catch up emotionally to that diagnosis. So, I think that there is a big need and this is something I’m working on, training neurologists in primary palliative care and developing these skills because there are aspects of palliative care for Parkinson’s that really are never going to be solved with the consultative model.
Eric: Yeah. So, there’s this need for primary palliative care-
Eric: … So making sure that all movement disorders they are delivering really high quality, primary palliative care. And there is this thing that you write about in this JAMA Neuro paper, which is more of a specialty care model-
Eric: Actually, I’m going to hold off and ask you, when does the specialty care model fit in, until we actually talk about, does the specialty care model work?
Benzi: Yeah, so we can jump into the paper. I think the paper shows from my perspective, fairly convincingly that it does work, that we proved patients’ quality of life, caregiver burden was improved, particularly at 12 months in, which is I think telling and we see this clinically actually is that I think as Parkinson’s, as Alzheimer’s, as these other diseases progressed, that there is almost these intersecting trajectories where our care is more about helping the care partner at some point then about the patient. At least the benefit becomes greater for the patient and family.
Eric: So, really interesting thing is this is not just that one site, you did this study at three different sites between 2015 and 2017, who were the actual Parkinson’s patients that you enrolled? Kind of getting into both, when should it happen and the specialty, who were included. So let’s start of with, who were the patients?
Benzi: So, the patients and this I think it wasn’t a patchier from the typical palliative care study. A lot of palliative care studies are defined based on your diagnosis, you have stage four lung cancer or a certain stage of illness, or prognosis. But we purposely designed the study around needs. We used something called the needs assessment tool Parkinson’s disease, which was based on the net PC, which had been out there for a while. And so people in our study could have advanced disease and some of them did, but some of them were enrolled because of high caregiver distress, high mode and existential distress, difficulties coping with symptoms such as pain or fatigue, complex psychosocial situation.
Benzi: So we really, for better or for worse and we did talk about it quite a bit, decided that we were going to give a fairly broad intervention with fairly broad inclusion criteria, in part because that was really a reflection of what we were doing in our practice. And what we wanted people to do was we wanted people to refer on the basis of need rather on the basis of prognosis or something else that’s a little bit more difficult to define with Parkinson’s.
Eric: I’m going to jump in. What did you do as far as the intervention?
Benzi: So the intervention, this was again, a learning experience for us. So, as you mentioned, we had three different sites and we were all doing things differently. And even at the end of the study, we were doing things differently, but we wanted to figure out some way to make it that they were standardized enough that we could write a paper and standardized enough that other people in other places would be able to replicate it. So, I think the real heart of this intervention was trying to figure out what are the issues that we need to address. And so we developed a checklist for the physician that would include things like talking about prognosis, talking about pain, swallowing, weight loss. We had a checklist for our chaplain going over things like guilt and grief and loneliness and our social worker for care partner support. Our nurse was looking at things like home health care and nutrition.
Benzi: And so, I can’t speak for anyone else, but I think when we first started the study, I thought everyone else needed the checklist, but I didn’t. And I soon really appreciated the checklist. I mean, I think the checklist was maybe the single most important thing of why we had a benefit. We had a huge benefit in the ESAS, seven points at six months. And I think that was just because we had a checklist and people on usual care did not have a checklist. And so we always asked about things like depression and pain and constipation that tended to fall between the cracks-
Alex: And just to interrupt for one second … ESAS, just to remind our listeners is the Edmonton Symptom Assessment Scale. It’s a sort of broad measure of a variety of symptoms scored, I think zero to 10…
Alex: … Or one to 10, something like that.
Benzi: Yep, zero to 10. Yeah, so in our group they included a nurse, there was a chaplain, there was a social worker, there was a neurologist with an interest, but no board certification in palliative care. And each clinic worked a little bit differently. I would say that our clinic in Colorado, is maybe this, what I would call a more pure hybrid model of neuro palliative care, where we very rarely involved Jean Kutner. She was important for the study absolutely and she helped provide us guidance and coaching and looked over charts, but rarely saw our patients.
Benzi: At Alberta almost everyone saw the palliative medicine specialist and everyone was in the room at the same time. Ours was a serial model where people were seen in serial. And at San Francisco was kind of in between, that the palliative medicine provider was much more involved in Colorado, less than at Alberta. People were generally seen sequentially, but sometimes then in pairs and at the end of the day, it didn’t matter which of those specific models you used, as long as you were using the checklist, as long as you were addressing these issues systematically that there wasn’t a significant difference in terms of outcomes.
Alex: And when you say sequentially versus together, do you mean neurologist and palliative care team together or do you mean different components of the palliative care team?
Benzi: Well, so different people. And this kind of gets into which we had to invent as to other people. I have had to do outpatient palliative care because it’s very different than inpatient palliative care. So at Colorado, and now we are getting this off the ground at Rochester, but at Colorado, we had a very busy neuropalliative care clinic that we would see 25 to 30 people on a day-
Benzi: … And the only way we could do that was that every… We had a bunch of rooms, it was on Fridays and people don’t want to be in clinic on Friday in Colorado, they want to be up in the mountains. So we had clinic to ourselves, we had six rooms running and we would rotate the neurologists and the chaplains in order to provide this sequential team based care and then at lunch and at the end of the day, we would kind of have an interdisciplinary powwow to make sure that things didn’t fall between the cracks, but it was a really busy clinic. At Alberta, they would see maybe three or four patients in an afternoon, and everybody on the team goes in at the same time. And there are advantages and disadvantages of each model. I mean, I think one of the things that we often struggled with is having patients, they don’t want to tell the same story again and again, we don’t want things to fall between the cracks. We always learnt from each other when we do talk about cases.
Benzi: So there’s advantages and doing things as a whole team. And at the same time, there’s advantages certainly in terms of efficiency, but I think there’s other advantages in terms of doing things sequentially that people actually got to spend more one on one time with the chaplain. I think they may have gotten more with spiritual wellbeing and in certain other aspects of it. So, I guess at the end of the day it comes down to, what you do is more important than how you do it.
Eric: And if I want to replicate some of what you were doing, the checklists, are they on the supplements for the JAMA paper?
Benzi: They are. And if you’re interested, there is actually a paper that I have probably referred more people to than anything else I have written, which is an anal palliative medicine and it’s called implementation of outpatient or palliative care or something along those lines. But it has all of our checklists, it talks about how we use our whiteboard, it talks about how we schedule…
Eric: Great. If you can send that to me, we’ll put a link to that in our show notes on our GeriPal website.
Benzi: Yeah, I’m happy to do so.
Eric: Can we talk about the results? What did you actually find?
Benzi: Yep. Yeah. So, the results were two primary outcomes. So, one was quality of life and we use something called the Quality of Life AD for Alzheimer’s disease. And we chose that measure because it measures general quality of life as opposed to health-related because we didn’t believe we were going to change, whether or not people would be able to go to the grocery store or walk five blocks. We thought we would have more of an impact on their primary relationships and how they thought about themselves. And we found that actually as early as three months, but also at six months, which was our primary outcome that people had in the palliative care arm had improved quality of life versus in the control arm. And I think looking at it in a different way when we segmented it by a clinically significant change of at least three points on this, that almost doubled the number of people in the palliative care arm had an improvement versus in usual care.
Benzi: Similarly, kind of in contrast is that half as many people had a clinically significant worsening in the palliative care group versus in the usual care. And I think both are significant because this is a progressive neurodegenerative illness. And sometimes the improvements might be masked by other things worsening at the same time. So, that I’m proud of. For caregiver burden, there was a significant improvement in 12 months. And depending on how you looked at the data in our primary intent to treat analysis, there was a trend, but there wasn’t a significant benefit to caregiver burden. But if you looked at what treatment people actually got, because we had 12 people who crossed over to actually get palliative care because they weren’t doing well, when we looked at treatment as received, caregiver burden was better at six months and no matter how you looked at it, it was better at 12 months.
Benzi: And I think that’s because again, the disease is more progressed and in those patients are going to get more benefit. The other thing actually to jump back that I would say about it is that we purposefully excluded people who had urgent palliative care needs because we felt it would be unethical. I think a lot of people in palliative care are pretty softhearted. And so we didn’t feel it would be… We all believe that palliative care helped and so if people had urgent needs, if their caregiver was about to burn out, whatever, we just got them right into clinic. I think that makes our results that much more significant because in secondary analysis, the people at the highest needs not surprisingly, got the most benefit.
Benzi: Some secondary outcomes that we looked at was symptom burden, which was probably our single biggest effect. That people had much better symptom burden in palliative care, spiritual wellbeing for both patients, actually even more notable for caregivers, caregiver anxiety. Advanced care planning, both in terms of quantity and quality was better in palliative care. So not only did we do it more, but the forms where the state specific form, we use the most in the POLST form, people’s doctors had it, it was on the chart as opposed to just checking off the box that was done. So, I think across the board, we showed that this model of care works.
Alex: And for people, we always ask this question when we are learning about multi component interventions and this is the Diane Meyer question, what is in the palliative care syringe? And you alluded to this a little bit before with the checklist and attention to symptoms specifically, do you have a sense of what specific components of the intervention were really key in making these differences?
Benzi: Yeah. I have given it a lot of thought and maybe you will invite me back in three years when this next study is done, but we just got another PCORI grant. And the goal of this Procore grant is to take this outpatient model of care and to make this the standard for all of the Parkinson’s Foundation Centers of Excellence across the country. And so in those centers of excellence, they don’t all have chaplains, they don’t all have social workers and so we really had to take a step back and ask ourselves that question. And I think the things that we came up with one, is making things systematic, using checklists, using template and notes. I think advanced care planning and goals of care discussions was really key. And this also came out of some of our qualitative interviews that we are going to be publishing later, that people felt they had a roadmap for this illness, as opposed to feeling their way forward in the dark.
Benzi: I think a second thing was systematically addressing non motor symptoms. And we know from a lot of studies that over half the time, they are not successfully treated because they are not recognized as true for depression, as true for pain, that is true for constipation and they just tend to fall between the cracks. I think providing caregiver support systematically, which is really not part of Parkinson’s care is important. So whether that is done by a social worker or a counselor or a support group or group visit, I think is less important than the fact that they are acknowledged and that we have support for them. And then recognizing these other psychosocial aspects of the illness and addressing them in some way. So things like grief, guilt, loneliness that again are not typically addressed in our current models of care. And again, whether those… So we kind of came up with these four pillars of what we felt were the key aspects of this intervention. And that’s going to be, I think the fun and the challenge of this next grant is for different sites to figure out their own means of meeting these pillars.
Eric: So, I’m going to go back to my question I asked earlier which was where does this model of care fit into the Parkinson’s disease spectrum?
Benzi: So, to answer that, I was in Colorado for the last 10 years and just moved to Rochester and kind of using this as an opportunity of doing some things that I wanted to do before to kind of creating our neuropalliative care model 2.0. And so in neuropalliative care 2.0, I think we are focusing a lot more across the department on primary palliative care. I think we are going to be doing a better job with needs assessment. And I don’t think everybody needs to come and actually it’s not even going to be possible that every Parkinson’s patient or every neurology patient goes to an interdisciplinary multidisciplinary clinic.
Benzi: And so I think one of our challenges as a department is figuring out, can we develop palliative care champions within each division? Can we do things… At Colorado, one of the things that we did was we had an annual Parkinson’s clinic where people saw physical and speech and other therapists and had their walking and voice measured and stuff like that. But part of that clinic was doing advanced care planning, screening for depression and looking at quality of life.
Benzi: So, I think part of the trick is going to be making some of these things routine and proactive. And then it is going to be based on need, but again, I don’t know that the need for everybody is going to be being seen at this clinic. For some people the need may be getting a social worker for them, seeing a counselor. So, I guess I would say that systematic screening, maybe more valuable than the interdisciplinary clinic themselves in catching these things earlier-
Benzi: … As our clinic evolved at Colorado, when we first started it was all train wrecks, it was all people who probably should have gotten to hospice three months earlier, as people on the verge of suicide and caregivers who are burnt out and things like that. And I think, we discovered over time that if we could see those same people one or two years earlier and have a more proactive model, primary palliative care that not only was our work more satisfying, but I think we did a better job for that patient, although we certainly have helped them when they came in crisis. So, I think, it’s kind of rethinking our model again about not just primary palliative care, but I think going beyond primary palliative care and kind of reaching this middle ground, this hybrid ground, which I think is going to be important for cardiology and nephrology and all kinds of areas where you have to really integrate in a meaningful way. A deep knowledge of these illnesses with palliative care principles.
Eric: I got a question. My last question for you is you have worked with palliative care providers-
Eric: … And a lot of our listeners, both geriatricians and palliative care providers from a lot of different disciplines, were there things that they were surprised of when caring for Parkinson’s disease? Like, “Oh, I wish I knew that before.”
Benzi: Yeah, there absolutely were. I mean, the most obvious one that that comes up, is… I mean, rolling medications and hospice is a huge one. Just actually, over the last month in another study I’m doing, how it all is still part of the hospice care that’s given out routinely to people with Parkinson’s. For people who don’t know that held all blocks, dopamine, all of our medications for Parkinson’s are trying to promote dopamine. And so that can be disastrous actually for someone with Parkinson’s disease. Similarly, some of the medications we use, like Sinemet, amantadine, dopamine agonist, if they are abruptly stopped or tapered, people can actually have something like neuroleptic malignant syndrome, what to do with deep brain stimulation. So, those are some very obvious practical challenges, but I think they are providers that we worked with, like neurologist, I don’t think they were thinking about Parkinson’s disease necessarily as a terminal illness.
Benzi: I don’t think they were thinking nor we, and I think this is kind of where this crosstalk dialogue comes in of really trying to recognize when people with Parkinson’s are entering a terminal phase and should start hospice. And there are some clues, weight loss being one of them, loss of appetite. I think we are used to thinking about declining disorders as a straight line, but in Parkinson’s and Alzheimer’s, it is never a straight line. It’s marked by dwindling and plateaus, but when it accelerates, when that threshold is reached, that is always the time where I will think about hospice.
Benzi: I think they didn’t recognize, as a lot of people don’t, in general how bad neurologists are when it comes to things like pain and advanced care planning and goals of care. I think they were surprised that these things are just not on our radar. And I think for both us as neurologists, both us as palliative medicine providers, I think we learned so much by the end of the study that we probably would have designed it differently had we started the study at the end of the study-
Benzi: … When we really were doing, but that is the research for you.
Alex: That is research for you. That was terrific work. My last question, just running with the same theme is, are there specific medications that you would either favor using or avoiding for common conditions in Parkinson’s such as pain and depression?
Benzi: Sure. Yeah. So, for pain, I guess a few things to say about that. I mean, one is to start with things like physical therapy, that some pain in Parkinson’s is related to muscular rigidity. So, sometimes manipulation of the dopamine medications can work. Botox is something that we sometimes do. Opioids can be used. And I have some patients, because there was actually a study of opioids for Parkinson’s that was positive. So, you don’t have to completely shy away from them, but you would want to really try to address the specific causes of pain before going to opioids. And oftentimes, manipulating other medications can help with that.
Benzi: With depression, I don’t think I have any specific tricks out of what most of you would probably do. I look to see what other side effects we might take advantage of, if people are having problems sleeping we use remeron, if people are having problems with apathy or motivation we might use Wellbutrin. Certainly if people are having hallucinations, quetiapine or Seroquel is the go to for neurologists. That even other atypicals like olanzapine and Zyprexa and things like that block dopamine to a very significant level compared to quetiapine. So, that was that one I would say is definitely a kind of a pearl or something that we would favor above all else.
Eric: Can I ask you, so if I’m caring for somebody in hospice and they are starting to have swallowing problems and difficulty taking their Sinemet, what the heck do I do?
Benzi: Yeah. So, there is a few options now. I mean, the oldest and cheapest one is… So, Sinemet can be crashed, so you can mix it in apple sauce and we actually use it in orange juice as a booster dose, and people can kind of take it as needed that way. There have been a few papers, I haven’t really done this very often, but in theory, you can give it per rectum. There is work being done right now to develop a sub-Q delivery, which I think will be great for a lot of people. There is a nasal spray that is out now that is a pretty expensive.
Benzi: And I think this is also another example of where we are being proactive as helpful. So if you wean back Sinemet gradually, oftentimes people don’t need, or actually even do better off of medications towards end of life and actually there was a paper showing that that is one of the most important prognostic predictors in Parkinson’s disease, it has lots of benefit. So, it is something that you can do. And I would say practically, what we often see is that when people reach a point where they can no longer swallow, they can no longer get food, that they are kind of in the days to hours range, and as long as you support them, you could also use benzodiazepines and things like that to help with muscle spasms and to help with pain. In general, we were able to help people through it, but we could wean people off safely, even advanced at that point, because more often than not it is not doing too much for them and the weeks prior to that.
Eric: Well, I want to thank you for joining us today. We will also have a link on our GeriPal website. I like a paper that was from JPSM on the 10 tips for palliative care providers in caring for individuals with Parkinson’s disease. We will have a link to that. And Benzi, if you have any other great resources for us, just send them my way, we will add them to the show notes.
Eric: And again, I want to thank you for joining us, but before we end, Alex, do you want to give us a little bit more of that song?
Alex: A little bit more of the song. I’m going to try the high tone part two, I haven’t warmed up my voice, so we will see what happens. (singing)
Eric: You hit it, Alex.
Eric: You have to do the outro now in that high tone, okay. So take it away, Alex, do the outro.
Alex: Thank you to all our listeners (talking in high pitch) [laughter]
Benzi: Thank you Benzi for joining us. Thank you to all of our listeners for supporting the GeriPal podcast. If you have a moment, please do rate us on your favorite podcasting app and thank you, Archstone Foundation for your continued support. Bye everybody.
Alex: Benzi, thank you so much.
Benzi: Thank you for having me. It was fun.
Alex: Bye everyone.