Expert Briefing: Advanced Parkinson's and Palliative Care in the 21st Century

James Beck 00:00:00
Hi there, and welcome to our second webinar in the Parkinson's Foundation's tenth Expert Briefing series. The topic for today is Advanced PD and Palliative Care in the 21st Century. I'm Dr. James Beck. I'm your host for today's discussion and Chief Scientific Officer at the Parkinson's Foundation.

What I always like to tell our audience before we start these webinars is that this is our tenth one, and we've been doing this a while. The reason I think they've been so successful is because we've gotten fantastic feedback from the community in helping to create this. Every year, we have a survey, so keep that in mind as we generate one for our eleventh year. We also really depend upon regional Parkinson's organizations, or the Alliance of Independent Regional Parkinson Organizations, AIRPO members, who also help guide the direction of these webinars. Thank you all to the community for that.

If you want a PowerPoint presentation that you can download on your computer to look at later, you can do so. If you're looking at the viewing page right now, right under Dr. Miyasaki's picture, there's a nice blue box that says Download Slides. Just click on that, download the slides, and then you can have a PDF to refer to whenever you want to.

If you're a health professional who's joined us for this webinar series, you can earn one free CEU through the American Society on Aging. If you registered as a health professional and indicated you want a CEU, you'll get an email by the end of the day with steps on how to collect that CEU. Keep in mind you only have 30 days to collect that CEU, so that's until December 27. Then you can get that CEU.

Now it's my real distinct pleasure to introduce and welcome our guest speaker, Dr. Janis Miyasaki. She's the Director of the Parkinson and Movement Disorder Program at the University of Alberta in Canada. Dr. Miyasaki previously graduated from the University of Toronto, where she completed her medical school residency under the auspices of Dr. Anthony Lang.

Dr. Lang is a world-renowned movement disorder neurologist, as is Dr. Miyasaki. She joined the University of Alberta Faculty of Medicine and Dentistry in 2014 after spending 22 years in Toronto. Since 2015, Dr. Miyasaki has become the Director of the Movement Disorders Program and has ten physicians, seven neurologists, a neurosurgeon, neuropsychiatrist and geriatrician, a real dedicated interdisciplinary team that's there to take care of Parkinson's disease. We're going to learn more about that in just a second.

She's held leadership positions at the University of Toronto, at the University of Alberta, and as part of the Movement Disorder Society, Parkinson Study Group and American Academy of Neurology. She's very involved with not only research, but also the academic medicine side of things.

The reason she's speaking here today is that she founded the very first dedicated palliative care program for Parkinson's disease at the University of Toronto in 2007, really ahead of her time. Since then, she's published a tremendous amount of research on this topic and has received funding from our Foundation to help really explore palliative care in the Parkinson's disease space.

In 2015, she established the Complex Neurologic Symptoms Clinic at the Kaye Edmonton Clinic and University of Alberta, along with Dr. Wendy Johnston, who's an expert in ALS. The goal of this program is to provide care to neurologic patients with palliative care needs.

As part of this effort, she's been a wellspring of resources to the community as a whole. As a result of this initial work, several centers with dedicated palliative care programs have sprung up throughout North America and throughout the world. Again, it's my distinct pleasure to welcome Dr. Miyasaki. Janis?

Janis Miyasaki 00:03:56
Thank you, Dr. Beck, and thank you all for registering and showing your interest in palliative care as it relates to Parkinson's disease.

Through this webinar, I would like you to be familiar with some of the symptom burden for people with Parkinson's disease that is less traditional and outside of the scope of purely motor symptoms alone, and also to be able to answer the question, what is palliative care and is it for me? Then, an important aspect of everyone's healthcare portfolio is having advance care directives. What are they, and why should you choose to have them?

One of the challenges for people with a chronic condition is the North American narrative of success. We really prize the individual, someone who is strong and independent, and that when you work harder, good things happen to you. When you don't work hard, clearly bad things happen. This is really challenging for those with a chronic illness because your symptoms are often progressing despite the best medical management, despite your best efforts, and it can make people feel like a failure.

A good lesson for us to remember is when you only have a hammer in your toolbox, everything is a nail. Just working harder, just trying harder, just exercising six hours a day, this is not going to address all the symptoms related to Parkinson's disease. This is part of the reason why I felt the palliative care principles would be useful for people with Parkinson's.

How can we get a better toolbox for our patients? I always recommend that patients who attend our clinic be informed. Go to really reputable websites.

I also encourage people to bring a spouse or a relative to visits. There are several reasons for this. One is that you may see things in a different way than your spouse or relative does. Your spouse or relative may have questions that are important to be answered for you to have the best quality of life at home. Secondly, doctors talk pretty fast, and they use really big words. It's useful to have another set of ears to remember what happened in the appointment.

It's helpful to write down questions in between appointments because when the doctor says, "Do you have anything else you want to ask?" inevitably people say, "I did," and it's left their mind. Write down the answers if your doctor does not provide information for you in a written format at the end of the appointment.

Ask for clarification. Don't be afraid. If you don't understand what they're saying or the words that they're using, say, "Could you go over that again? I'm not really getting the point that's important for me to remember." Also, be out there, be engaged, be social, and be frank and honest about what's happening to you.

Sometimes I get the feeling that patients want to be a good patient. They want me to feel that I'm doing a good job, so they tell me everything's A-OK. But I need to hear the truth if I'm going to help them live the best possible life.

I would also consider bringing the Non-Motor Symptoms Questionnaire to your visit. Complete it. This is a simple questionnaire. It's yes or no, and you can see that many of these symptoms you might be experiencing.

Often doctors are not aware that these symptoms are associated with Parkinson's disease. If you bring them to your family doctor, your internist, your geriatrician or your neurologist, this can help start the conversation about other symptoms that require treatment or investigation.

Janis Miyasaki 00:08:27
This is just the second page of that questionnaire. It's important to note that not everyone will experience all these symptoms because some of them sound pretty frightening. It's just a list of symptoms, and it helps your neurologist or your physician know what's going on with you and help you with these symptoms. It can also direct us to change your Parkinson treatment.

Now, one of the myths that I want to dispel is that palliative care and hospice care are equal. People often associate palliative care with end-of-life care, which according to the United States Medicare guidelines, hospice care is given to people in the last six months of life.

Palliative care is something different. This is what we're trying to promote: the palliative care approach and the palliative care philosophy in addressing people with chronic conditions.

What can palliative care provide? It provides relief from pain and other distressing symptoms. You've seen from the Non-Motor Symptoms Questionnaire that people in fact suffer from pain and other symptoms that are not purely motor. It affirms life and regards dying as a normal process. I think often in modern society, we have started to view death as optional, that technology can take over everything for us. But unfortunately, this is not true.

I think what we need to emphasize is the quality of life, and that people enjoy their life, their family and friends, and their social interactions as much as possible, and that we maximize that quality of life for every person for every day. It intends neither to hasten nor postpone death. It integrates psychological and spiritual aspects of patient care. I think this is one part where the high technology really falls down.

Many patients do express that they can't talk about their despair, sometimes hopelessness, sometimes feeling demoralized despite their best efforts, that their illness is progressing. Either these words or these feelings are not heard or acknowledged, or there's discomfort from their neurologists in dealing with this. But palliative care embraces this. This is part of the experience of having illness, and we have to help our patients in coping with this.

It also offers support to help the family cope. Those of you who have tuned in to this particular topic are probably very well aware of the demands of caring for a loved one with Parkinson's disease.

I often say to my palliative care colleagues that people who have cancer often have a very predictable course, and it's often very limited. For people with Parkinson's disease, this is an illness that goes on for decades and so requires decades of caregiving that shifts slightly as time goes by.

We have to address the distress of our spouses and families for people with Parkinson's, because if they are doing well, then the people with Parkinson's do better. I think this has often been neglected because, in my clinic, several times spouses will tell me, this is the first time anyone's asked me how I'm doing.

We have to be better at looking at our unit of care as not being just the person in the seat who has a diagnosis, but in fact their entire family.

Janis Miyasaki 00:13:13
It uses a team approach to address needs. I am a neurologist. I am a movement disorder neurologist. My particular expertise is in dealing with movement disorders. I have a palliative care physician who sees patients with me. Her expertise is different. It is truly about end-of-life care and about dealing with pain and breathlessness and other symptoms that often happen at the end of life. Then we have a spiritual counselor, in the United States often called pastoral care. The spiritual counselor addresses some of the other suffering that occurs when you have a chronic condition, and we'll go over that in later slides.

Palliative care can also enhance quality of life and may positively influence the course of illness. There was a famous study that occurred just about seven to eight years ago. It looked at people with metastatic cancer, and those who were randomized to early palliative care in fact had enhanced quality of life and longer survival than the people who were getting aggressive chemotherapy.

Probably it's because the palliative care team was addressing all their symptoms, not just looking at a single marker or a single blood test, but looking at the whole person and addressing all the symptoms and suffering.

This is an important concept that has been added in the past five years for the World Health Organization definition of palliative care. It is applicable early in the course of illness. Why do we say that?

I had a graduate student who did some research on people who had just been given the diagnosis of Parkinson's. Often they're given the diagnosis in a pamphlet and sent on their way. At that time, your whole life has shifted. You went in being a person who was in a perfect state of health, and you left being told you had a chronic progressive neurodegenerative disorder. In the words of a patient, there are no good words in that phrase.

Yet we expect patients to go with their prescription and their booklet and make their way until their next appointment, which is often three months to six months down the line. Having access to palliative care, and in particular the spiritual counselor, can help people process that information, help them address their distress and feel positive about going forward, because that's what we want our patients to be able to do.

We see here that the original palliative care and hospice movement, and the hospice movement, was developed in the UK by Dame Cicely Saunders, who wanted to address the suffering of people with incurable cancer. Then it became adopted in Canada, in Quebec, by a urology surgeon who wanted again to address the suffering of men with incurable prostate cancer.

But we have now evolved the concept of palliative care, where it's just end-of-life and cancer-focused, to in the 21st century, where it is applicable throughout the disease trajectory. Now it's being increasingly adopted for those with chronic illness, not just Parkinson's disease and multiple system atrophy or progressive supranuclear palsy or dementia, but also kidney failure, heart failure and lung diseases. In fact, neurologic diagnoses are now overtaking many of the cancer diagnoses as the commonest cause to access hospice care in the United States.

Janis Miyasaki 00:17:50
Our program, as Dr. Beck mentioned, began in 2007 at the University of Toronto, and I restarted a new program at the University of Alberta in 2015. It follows the principles of palliative medicine in collaboration with palliative care, spiritual care and neurology. I think that multiple-discipline approach is really important for us as a group. We see patients as a group, and I think that has elevated all our practice skills.

One of the tools that we use, that you could also print up and use, is the Edmonton Symptom Assessment Scale. This is used for people with cancer, but some of the symptoms you can see are relevant for people with advanced Parkinson's disease: pain, fatigue, drowsiness, nausea, losing your appetite, shortness of breath, depression, anxiety and a sense of well-being. Then we adapted it to include other symptoms like stiffness, constipation, swallowing problems and cognitive clarity.

Sometimes patients and their families just get really weary with all the paper that we throw at them in the clinic. Why do we like these scales? Well, if you don't ask, we won't know what's happening to you. It's really hard for people with Parkinson's and their families to know what is related to Parkinson's and what isn't. It would be a tragedy for people to persist with their symptoms in the community and not really have the treatment that they need to have and that could benefit them.

That's why it's important to ask these questions, even though they're boring, even though they're repetitive, because one day you may answer yes, and your neurologist may have a solution for that.

Now, I wanted to address some symptoms that can be problematic and are non-traditional for Parkinson's disease, one being pain. It is important that your Parkinson medications are optimized for people with Parkinson's, but also for people who have Parkinson-like syndromes, because many of these patients can respond to levodopa.

It's also important to use exercise. Range of motion exercises are very useful to help reduce the pain because the sources of pain are not just related to wearing off. If you think about it, if you imagine your loved one with Parkinson's who is less mobile: when you sit in a cramped airplane seat and you don't move for hours, when you get up, you're sore and stiff. It is harder for you to move. That is how they're spending all their day. If we can do range of motion exercises, that can help them.

If the person with Parkinson's can't do their own range of motion exercises, then doing passive range of motion, that means where the spouse or family member does the range of motion for the person, can help. Botulinum toxin has also been used to treat pain in Parkinson's disease. Finally, if all these measures are either not working or not appropriate, then considering pain medication as a last resort should be considered.

Janis Miyasaki 00:22:05
These are just some of the passive or active range of motion exercises that can be done. I will admit that some of them are quite ambitious, particularly the one in the lower right-hand corner. But if you can at least get the person moving like that, you can see how it can relieve some of the lower back pain.

If you are prescribed pain medication, we're all aware of the opioid epidemic in the United States and in Canada. We are always trying to use the mildest medication or the mildest treatment for pain, but use it effectively. The important concept of pain management is that you take your pain medication if your pain is present for 70% of the day or longer, that you take it around the clock.

If you wait until the pain is unbearable, you will have to take a larger dose to get control of the pain, and then you will have more side effects related to that. It's better to take it around the clock. This is often challenging for people with Parkinson's because you're already taking so many pills, and it just seems like such a burden to take another set of pills. But if you take pain medication effectively, it can help people be more alert, more interactive, more willing to go out and socialize, but also more willing to exercise.

It is very rare that people would need medications on the far right-hand screen, but when they do, I find that my Parkinson's patients can take the lowest dose and cut that tablet in four, and they just take one quarter twice a day and they are doing marvelously well and never escalate their use. If you are prescribed your pain medication, please take it as prescribed.

This slide just highlights some of the information that I've gone over. One limitation for pain medication is that drowsiness and cognitive clarity can be impaired by the use of opioid medication, and that always has to be balanced. Doctors should always be listening to patients and their families about the desired amount of pain control versus the desired amount of cognitive clarity.

Now, here's a topic that I never thought I would speak so much about, being a brain doctor, but I do every day. This is the Bristol Stool Chart. You can all internally think what your bowel movement today looks like. What we're aiming for is Type 3 or Type 4, and you should be able to have a bowel movement every day, or at most every other day. If your stool looks like Type 1, this is not good. If it's Type 2, that's also less than optimal.

Often when people are having very severe constipation, they will also have back pain, and they will also occasionally get diarrhea because they're getting overflow. There are many reasons why I obsess about people's stool, and it's because it causes my patients suffering. They have bloating, stomach pain, back pain. They can have hemorrhoids, but most importantly, your medications will not work properly because you do not get your medications absorbed. Often appetite is lost, and people will lose weight when they become very severely constipated.

Janis Miyasaki 00:26:31
The good things about a daily poo is that your pills work better, going to the bathroom isn't a chore, your diet is probably better, and your appetite improves. There is evidence that if you have a good diet and you're having a daily bowel movement, you reduce your cancer risk for bowel cancer.

Remembering those principles of starting with the most conservative treatment, that is non-pill treatment first: drink enough water, eat watery fruit, eat raw vegetables, less meat, more beans, no white rice, bread or pasta, and use whole grains only. Dried fruit seems to be a very high source of fiber that is natural.

Exercise will help with constipation. Once again, if the person with Parkinson's is not able to do exercise, having some passive range of motion will help because, think about people without Parkinson's, you're always moving, you're bending over, you're picking up things, and that helps to massage your bowels. Or you can do abdominal massage, which was found to be very effective in constipation for people who were taking opioids for their cancer treatment.

Unfortunately, you have to have your tummy pressed on 10 to 20 minutes per day for this to be effective.

Then if that doesn't work, as is often the case in later stages of Parkinson's, using PEG, the commercial names are Lax-A-Day or MiraLAX, can help. It is not absorbed, it is not addictive, and you can take up to four doses a day for this to be effective. It is tasteless and odorless, and you can put it in any drink or on top of food.

In addition to this, because the PEG is just to increase the absorption of water into the gut to make the stool softer, you can take Senokot to stimulate the bowels to improve the contraction if you are finding that, yes, everything is soft, but you just cannot contract to have a good bowel movement.

Now, I spoke earlier about existential distress. You may wonder, what is this term? Well, this occurs when people are starting to ask themselves the questions, why has this happened to me? How can I go on? And how can I find meaning in life? For many of you tuned into this webinar, you can probably think back to several times throughout your course of Parkinson's disease where you had these questions, where you had that despair, and how helpful it would be to be able to talk to someone about that.

Existential distress is different from depression, where people really lose joy in things that they're doing and they have a change in their sleep pattern and their appetite. It often stems from an event or events that shakes one's faith in the logic of the world. Again, hearkening back to that North American narrative where good things happen to good people; therefore, bad things happen to people who aren't so good, and how damaging that is because you think, I'm a good person. Why do I have this illness?

Janis Miyasaki 00:30:34
I've led a healthy life. Why is this happening to me? What's the point? I did everything the doctor said. I went to the support groups. I did the exercise classes. I take my pills faithfully, and yet my illness progresses.

Dealing with existential distress is important because, if it's not addressed, it is hard to have the motivation to do the things you have to do when you have a chronic illness. Really, having Parkinson's disease is like having a full-time job.

I think that dealing with existential distress requires more time, more patience and more skills than most physicians have. I would speak to a spiritual care practitioner or, if you are connected to your religious group, to speak to your pastor, priest, rabbi or imam. Speaking to a psychologist with experience in chronic illness can be helpful. Also, your local palliative care team, if they are open to neurologic patients, seeking a referral to them can be very helpful.

Now, I'd like to talk about some tools that you can use on your own at home with your computer. This is a neat little card game, but it's also present on the internet through the Coda Alliance, and here is the link. This is what you're going to see. It allows you to put values on what is important to you in your healthcare, what is somewhat important and what is less important.

It's useful to go through this because then you can decide what things are important to you when you receive healthcare and what things you're going to put a priority on. There are some questions that are about end of life, but they're really about who do you want to have around? Who do you want to share information with? Who do you want to be involved in decision making? This can help you in formulating advance care directives.

I've heard from physicians that advance care planning should only be done at the end of life. But when you ask the public what they think about advance care planning, 90% think it's important to talk about their loved ones and their own wishes for the end of life, but less than 30% have done so for themselves and their family.

Sixty percent don't want their family burdened by tough decisions for them in the hospital, yet 56% have not communicated their end-of-life wishes to their family to help them with those decisions. Seventy percent prefer to die at home, but 70% of North Americans die in the hospital, a nursing home or a long-term care facility.

Eighty percent of people want to talk to their doctor about end-of-life care, but less than 10% of people have discussed end of life with their doctor. Eighty-two percent think it's important to have their wishes in writing, but 23% have actually done it. Despite the doctor's reluctance to talk about this, the public wants to talk about it.

Janis Miyasaki 00:34:41
I think there's a good reason to do it sooner rather than later, because this was a study of approved forms in Canada and how hard they are to understand. We took all the approved forms for advance care planning in Canada, and the recommended reading level for health information is grade eight. You can see that there are only two provinces that meet that recommendation. The rest all exceed and greatly exceed. The figures are very similar for the United States as well.

Why is that important? Because even people who have normal memory and thinking and just feel that they're not as sharp as they were a few years ago had impaired decision making. Because these forms are complicated, because the concepts are abstract and challenging, it's important to make these decisions early and have the conversation early. You can always change your mind in the future.

I always tell people who should have advance care directives. Am I talking about this to you just because you have Parkinson's disease? In fact, no.

Janis Miyasaki 00:36:09
I would say everyone over the age of 18, or at an age for consent in your state or country, should really be thinking about advance care directives. Having provided a lot of hospital care for people with acute illness, to see the family struggle with these decisions is so sad.

Frequently, when they haven't had the conversation, they say, “I'm not sure I'm doing the right thing.” And they doubt themselves.

There are forms that are readily available on the internet. For example, Five Wishes is a legally recognized document for advance care planning in the state of Maryland, and in fact, in 43 states in the United States it's recognized. You can go to fivewishes.org.

The five wishes concern the person I want to make care decisions for me when I can't, the kind of medical treatment I want or don't want, how comfortable I want to be. For instance, some people say, “I absolutely do not want any pain,” and other people would say, “I've had bad experiences with pain medication. I would rather put up with the pain in order to be cognitively clear.”

How I want people to treat me, and what I want my loved ones to know.

In conclusion, palliative care is really appropriate for any stage of Parkinson's disease. When we're addressing symptoms for people with Parkinson's, we should always think of non-medication approaches first.

People with Parkinson's should try to use their medications as prescribed. We should remember that movement helps a lot of symptoms, that thinking about values can help cope with existential distress, and that advance care plans should be completed by everyone.

Thank you.

James Beck 00:38:41
Dr. Miyasaki, that was a fantastic presentation. I really appreciate it. I found it incredibly informative and really detailed. I think you covered a lot of potential questions that came in, and I think it's really important to emphasize, and it can't be done enough, that when we talk about palliative care, I love your slide about palliative care is not hospice care. It's not the same. Because it really sounds from your discussion that this is something that should perhaps be intertwined into standard of care.

Would you advocate that? I mean, it sounds like from the understanding of palliative care, when you deal with a chronic disease, you're always working to manage symptoms. For a disease like Parkinson's, where we don't have yet a way to stop the disease or a way to modify the progression of the disease, is it not always palliative care from the minute you get diagnosed?

Janis Miyasaki 00:39:46
Jim, some people have facetiously said that, that well, then all of Parkinson's care is palliative. I do view that the palliative care philosophy is really the best practice of medicine. If we go back to that slide about what palliative care does and its principles, it is about not just looking at a single symptom, which when I went through my movement disorder training, it was all about movement, but looking at the person as a whole and looking at the family and how the patient and the family are functioning.

I and other people who have embraced palliative care — and neuropalliative care is becoming a huge movement now — I think we're reaching a tipping point. People are starting to realize that much of any specialty is really about those holistic principles and that we need to be doing a better job at that. Maybe that's why there's a lot of discontent in traditional medicine, that many, many people aren't embracing that, or they don't have the skills or they feel they don't have the skills to provide that.

I would agree that palliative care should really, in my opinion, be part of any movement disorder program. Having people who are really committed to it, not just saying, “Here's where we put all the people with advanced Parkinson's disease,” but that we have a team of people who are trained and skilled in advanced Parkinson's and related disorders to provide care. My commitment to my patients is that I will provide care for them until the end of their life or until I stop practicing, whichever comes first. I think to commit to that is important for our patients.

James Beck 00:42:14
I agree. I think that would be a tremendous revolution in care if we could be able to engage everyone with that kind of holistic approach that you're talking about. It does seem the way medicine should be practiced, really taking care of the complete individual.

When we talk about palliative care, though, I imagine you still encounter some pushback perhaps from patients. I don't know about other physicians. How does one broach this subject when you have a loved one who's been diagnosed with PD, maybe not at the early stage, but maybe mid-stage, and these questions begin to arise? Some of these issues you bring up arise. How does that conversation go from your perspective, and how would you suggest a loved one talk to the person that they love who has Parkinson's?

Janis Miyasaki 00:43:10
I'll give the example from our program because we have an intake every morning, and we're going over all the patients and their symptoms for all the physicians with the multiple disciplines. It's often the nurses, or the PT, physiotherapists or the occupational therapists, who say, “I think this person would benefit from palliative care.”

Because we have this team intake and we're often seeing patients on the same day, the patients or the family often get the message several times in that day. We all have a different way of approaching it, but it is about talking about symptoms and who is the best team to address those symptoms, and whether there are other things that can be done to help their symptom burden.

I often tell people that palliative care is not about death and dying. Palliative care is about living well now.

I think that's the message that needs to get out. That's the message that when palliative care is really practiced at its best, they embrace and take to every encounter, they take to every specialty that they work in. It's about living well now. How can we relieve your symptoms now so that you can do things, so that you can meet your goals, whatever they are, if we can achieve that for you?

James Beck 00:45:09
When you talk to people, and I appreciate coming from the clinician standpoint that that conversation would be easy, but in the U.S. we just had Thanksgiving last week, and a lot of families come together. You see relatives you haven't seen in a while and maybe see how they're doing, or how well or not well. I can envision trying to bring up this issue, telling your beloved uncle or grandfather, what have you, that maybe they should see palliative care experts, and it still has that connotation, as we've worked to dispel, about hospice, about being end of life. People say, “I'm not dead yet.”

Is there a resource online? Are these tools you provided a way to begin to initiate that conversation, going through the card deck with Go Wish or thinking about even the Five Wishes, so that people begin to start thinking about that approach? Or is it simply, again, thinking about the symptoms that a lot of people are experiencing, perhaps it's the pain or the existential issues? Is it establishing a more robust care team that can help them with it and not even using the word palliative?

Janis Miyasaki 00:46:43
Yeah. This is part of the debate about what we call ourselves. One palliative care physician said to me, “You can call me a purple bear. I don't care as long as they come to see me.” That's why we have our clinic called Complex Neurologic Symptoms Clinic. Even that makes people say, “Oh, I'm complicated.” They don't like that.

We've tried to soften that so that they understand that their symptoms are complex and they're often interrelated, and if you relieve one, you might make another one worse, like the example of pain. One size does not fit all in anything in medicine generally. For some people, the right approach is to go over the Non-Motor Symptoms Questionnaire or the Edmonton Symptom Scale and see what their symptom burden is.

If their symptom burden is high, then that is someone who would benefit from palliative care. Just focusing on the symptoms and saying, “Look, you've answered this, and a lot of your answers are seven to 10 on that scale. That seems like you're really suffering. Maybe there are better ways of addressing that suffering.” For other people, it's going to be about facilitating that advance care planning or advance directive planning conversation.

Some people want to know. An example from my clinic is, as part of our clinic flow in the second appointment, we talk about it and we just say, “Do you have a plan?” This one woman said, “I want to talk about it.” Her son crossed his arms and stood in the corner and said, “She doesn't want to talk about that.” And I said, “But she just said she does.” And he said, “No, she doesn't. She doesn't know what she's saying. She doesn't want to talk about that.”

You can meet resistance not from the person with Parkinson's, but often from the family members to have this conversation. I think we have to focus on what the person with Parkinson's themselves is ready for and what they need at that time.

There are many ways to approach highlighting what a palliative care team can be. But again, I would say that for it to be truly effective, it can't be someone just slapping up a shingle saying, “I'm a palliative care provider,” but it has to be someone who really has this team-based approach to providing the palliative care. In all of the medical subspecialties, there is a movement now to be better at teaching these principles and philosophies to our trainees so that when they go out and practice, they will at least be able to start some of these conversations and facilitate people accessing the appropriate teams when it's past their skills.

James Beck 00:50:18
I think that's a really good point, being able to identify when to refer to the professionals who really have that knowledge to help individuals. When we talk about the care team, we're also clearly talking about family members. I just want to highlight to our audience that on the screen right now is our Caregiver Summit, which is coming up on December 1. It's going to have a live event, which we'll have in Phoenix, Arizona.

This is something that we're very grateful to our presenting sponsor, Acadia Pharmaceuticals, for helping make happen, because what we're going to be able to do is provide an opportunity for people to watch it live at different satellite locations. People can go to our website at parkinson.org/summit in order to find more information about how they can register for a satellite event or maybe even potentially set up their own through a support group.

We really recognize that these family members are important, and in addition, how they can play a role in forwarding people to these tools and whatnot. One of the questions that comes through is actually not from a family member, but from an allied health professional in Wisconsin. They're asking about the Five Wishes for helping with advance care directives. They're asking, is it appropriate for someone without the eighth-grade educational level? Someone who has less than an eighth-grade educational level. Does that meet your criteria, as you brought up all the different provincial readability scores for the provincial advance planning directive ones? Does the Five Wishes one?

Janis Miyasaki 00:52:06
The Five Wishes is a very straightforward form, and so the readability is acceptable. It's probably why it's been embraced so widely by many of the states in the United States. There was a neat story that they have on their website that one woman had filled out her Five Wishes form, and she wanted to talk to her family about it and her children just did not want to hear it.

At Thanksgiving, she put her completed form, she photocopied it, and she put it on everyone's dinner plate. She said, “Until you read this, nobody's having turkey.”

I think it does bring to the fore that sometimes it's the person with Parkinson's who wants to have this conversation, but the family isn't ready to have it. I've seen all sorts of variations and permutations, and that's why it's multiple different approaches, continuing to invite people to explore these topics, not forcing people to do it and trying to bring them the help when they need it at the right time.

I think the Parkinson's Foundation has done such a great job advocating for this kind of team-based approach, certainly for launching the palliative care program at the University of Toronto that has now become a movement. I hope that every Center of Excellence will one day have a palliative care team, a real palliative care team, and that we will be leading the way for all movement disorder centers in the world.

James Beck 00:54:15
That would be fantastic. I think it's something that as we work to make lives better, as our motto says, hopefully we can achieve. Some practical questions, if I can, because we've been dealing with some big-picture issues holistically. Some questions that are coming in from our listeners are that they're excited about what you're talking about with a palliative care approach. How do they find places that offer real palliative care?

Is it something they talk to their movement disorder neurologist about, or their neurologist, and have them try to buddy up with someone who has a palliative care background? Or is there a centralized place to find this information out?

Janis Miyasaki 00:55:04
Palliative care can be available at places that have a neuropalliative care specialist. These are neurologists who have taken one year of extra training in palliative care in the United States. In other countries, there are different criteria to be a palliative care specialist. These are neurologists who can provide palliative care and are often practicing in a palliative care group primarily. They would be able to provide palliative care for people with Parkinson's.

The other option is to ask your movement disorder specialist, if you are seeing a movement disorder neurologist, if their center has a palliative care program. Some centers are starting palliative care programs, or they have an advanced Parkinson's disease group that will assume care for patients, and many of them have undergone the Allied Team Training Program.

Realistically, the number of people who are providing a palliative care program in the United States is fairly limited, and it tends to fluctuate with the neurologist who is willing to dedicate their time because palliative care is the prototypic slow medicine. Cardiologists always think neurologists are slow, but a neuropalliative care appointment is even slower still. That's because these conversations are weighty. You cannot rush them. There cannot be the stopwatch to move on to the next patient.

It is challenging to find a neurologist who is skilled at these conversations and at gathering a team to provide the care, as well as someone who is dedicated enough to provide the ongoing care. But I think if patients and family members start providing that demand for a palliative care approach, that people will start to bring this forward to their movement disorder neurologists and start to ask, “Why doesn't our state have that? Why doesn't our program have that?”

I think that will provide the biggest motivation for people to move forward and really have excellent palliative care available for our patients.

James Beck 00:57:53
I think you're right. It's the only way we're going to be able to change the system is from the people who actually use it and what they demand. I think that's probably the best way to do that.

We brought up some issues, the symptoms that people are experiencing that are the common ones that are addressed in palliative care, and one of them was pain. I know that in your country, in Canada, there's been an experiment underway now with the legalization of marijuana. Is that something that you see, and it's somewhat accessible here in the United States depending on the location, as a potential treatment for pain? What role do you see that in the many of these issues that you bring up that people with end-stage or advanced-stage Parkinson's are experiencing?

Janis Miyasaki 00:58:49
Dr. Beck, you bring up a question that is asked virtually every clinic, and sometimes every single appointment, about the use of cannabis in Parkinson's disease. Although Parkinson's disease is considered a diagnosis that allows the medical use of cannabis in some states, there is in fact no evidence that it provides benefit for pain.

When you look at other traditional treatments for pain, in fact, the number of people who will respond to cannabis for pain is significantly lower than things like antidepressants or antiseizure medications, which are another approach to pain management. Further, although many people say that they are getting pure CBD oil, most of the CBD preparations do have some THC, which is the centrally active and cognitively changing component of cannabis. These agents can cause people to be delirious. That means confused, not as cognitively clear, and this can fluctuate.

There is a report in the Canadian Medical Association Journal of a patient who actually developed hallucinations after the use of a synthetic cannabis that was regulated and had an actual dose. People knew what this woman was taking, and it was prescribed under her family doctor's direction. She developed hallucinations that did not go away despite stopping the cannabis.

It can tip people over potentially from being cognitively clear and functioning to not functioning well. Given that cognitive impairment in Parkinson's disease approaches 70% to 80%, depending on which literature you read, this is a risk that many people are not willing to undertake. I think it's important for people to be aware of the information, as well as the potential benefits and the potential risks.

James Beck 01:01:19
Those risks sound very real and severe. I think that cautious approach is really warranted. Too often people are associating access with efficacy when it comes to medical marijuana, and it's something I think the Foundation plans to address moving forward.

We're coming to the top of the hour. I want to let our listeners know that there's a survey online right now that's on their screen if they want to fill it out and provide feedback for Dr. Miyasaki and for this particular Expert Briefing. It's something we utilize and provide to our presenters and use to improve our programs. I encourage everyone to do so.

I also want to let people know that if there are topics that were brought up and you want to listen to again, we'll have an archive of today's Expert Briefing made available beginning next week. That's Tuesday, December 4. You can go to Parkinson.org in order to download and listen to Dr. Miyasaki again.

Our next webinar is going to be in January, in the new year, and we're going to have Dr. Ronald Pfeiffer from Oregon Health & Science University, one of our Centers of Excellence, talking about non-motor symptoms and what's new regarding Parkinson's disease.

Dr. Miyasaki, if I may have a final question from you, if you have the time. One issue that's come up as we talk about palliative care is we can't separate it from hospice. When does one make that transition between thinking about palliative care to hospice care, as we talk about these end-of-life changes that people experience?

Janis Miyasaki 01:03:09
Within the United States, for people who receive Medicare, the hospice availability is in the last six months of life. The services available at that time are highly variable depending on where you live and the hospice that you become enrolled in. At the minimum, it provides equipment in the home, it can provide day programs, and it can provide a visiting nurse of varying frequency. I've heard everything from once a week to once a month.

The nurse will also have access to the hospice director, who is responsible for all the patients who are enrolled in that hospice.

When someone is in the last six months of life, then they would be eligible for hospice care in the United States. In other countries, it's highly variable. In New Zealand and Australia, there's much greater accessibility to palliative care, and they have hospice as well, but there is no limit to the access to palliative care. It's really according to need.

In Canada, many provinces have less than three months' life expectancy in order to access inpatient hospice services. It is highly variable, and people need to ask their physicians when they would be eligible based on that country's criteria for accessing hospice or palliative care.

James Beck 01:05:06
Thank you very much. You bring up a really good point. When we talk about the reach of your talk, we have over 1,600 listeners, 28 countries, as well as Canada and the United States who are there.

Dr. Miyasaki, thank you very much for your time today. It was wonderful to hear from you.

Janis Miyasaki 01:05:28
Thank you, Jim.

James Beck 01:05:30
And to everyone out there, thank you for listening, and I look forward to speaking to you again in the new year. Bye.