Expert Briefing Webinar: Advanced PD & Palliative Care in the 21st Century

Expert Briefing Webinar: Advanced PD & Palliative Care in the 21st Century



hi there welcome to our second webinar in the Parkinson's foundations tenth expert briefing curious a topic up 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 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 while and and we I think they've been so successful is because we've gotten fantastic feedback from the community and helping to create this we have a every year we always have a survey and so keep that in mind as we generate one for 11th year we also really depended upon regional Parkinson's organizations our alliance of independent regional Parkinson's organizations or airpo members who helped also guide the direction of these webinars so thank you all to the community for that if you want a PowerPoint presentation that you can download your computer to look at later you can do so if you're looking at the viewing page right now right under dr. Miyazaki's picture there's that nice blue box that says download slides and 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 agent if you registered as a health professional of course and you've indicated you want to see you you have to do so you'll and when you do you'll get an email by the end of the day which steps on how to collect that to you you keep in mind you only have 30 days with which to collect that to you so that's till December 27 and then you can get that seen and so now it's my real distinct pleasure to introduce and welcome our guest speaker dr. Janice Miyazaki she's the director of the Parkinson and movements order program at the University of Alberta in Canada you know dr. Miyazaki that was a previously graduate of University of Toronto where she completed her medical school residency under the auspices of dr. Anthony lang dr. lang is a world-renowned movement audiologist as is back to Miyazaki and she joined a University of Alberta Faculty of Medicine and Dentistry in 2014 after spending 22 years in Toronto since 2015 dr. Miyazaki's become the director of move towards program and that has 10th edition seven neurologists neurosurgeons or psychiatrists geriatrician a real dedicated interdisciplinary team that's there to take care of of Parkinson's needs we're gonna learn more about that in just a second she's held leadership positions at University Anto at our University of Alberta and part of the movements or society and Parkinson's study group and American Academy neurology she's very involved with not only a research but also academic medicine side of things what she's what reason she's speaking here today is that she founded the very first dedicated palliative care program for Parkinson's disease at University of Toronto in 2007 really ahead of her time and since then she published tremendous amount of research on this topic has received funding from our foundation to help really explore palliative care in Parkinson's need space and in 2015 she established the complex neurologic symptoms clinic at the Kay Edmonton clinic in University of Alberta along with dr. Wendy Johnson it was an expert in ALS the goal of this program is to ride character there are other patients with palliative care needs and as part of this effort what she has done she's been a wellspring of resources to the community as a whole and as a result of this initial work several sensors are with dedicated palliative care programs have sprung up throughout North America and throughout the world so again it's my distinct pleasure to welcome dr. Miyazaki Janice 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 poly of care and is it for me and then an important aspect of everyone's health care portfolio is having advanced care directive what are they and why you should choose to have them so 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 and so when you don't work hard clearly bad things happen and 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 and a good lesson for us to remember is when you only have a hammer in your toolbox everything is a nail so 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 and this is part of the reason why I felt the palliative care principles would be useful for people with Parkinson's so 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 visit there are several reasons for this one is that you may see see things in a different way than your spouse or relative does your spouse or relative may have questions that's important to be answered for you to have the best quality of life at home and secondly doctors talk pretty fast and they use really big words so it's useful to have another set of ears to remember what happens 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 my mind and 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 you know could you go over that again I'm not really getting the point that's important for me to remember and also to be out there to 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-okay but I need to hear the truth if I'm going to help them with the best possible life I would also consider bringing the non-motor questionnaire to your visit completed so this is a simple questionnaire 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 so 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 and 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 so 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 and so 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 and palliative care is something different and this is what we're trying to promote the palliative care approach and the palliative care philosophy in addressing people with chronic conditions and so 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 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 and 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 or postpone death it integrates psychological and spiritual aspects of patient care and I think this is one part where the high technology really all that 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 and that either these words or these feelings are not heard or acknowledged or that there's discomfort from their neurologist in dealing with it but palliative care embraces this this is part of the experience of having illness and that we have to help our patients in coping with us it also offers support to help the family cope and 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 and so 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 and I think this has been often neglected because in my clinic several times spouses will tell me this is the first time anyone's asked me how I'm doing so we have to be better at looking at our unit of care as not being just a person in the seat who has the diagnosis but in fact their entire family it uses a team approach to address needs so 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 the end-of-life care and about dealing with pain and breathlessness and other symptoms that often happen at the end of life and then we have a spiritual counselor in the United States is often called pastoral care and 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 is a famous study that occurred just about seven to eight years ago and it looked at people with metastatic cancer and those who were randomized to early palliative care in fact had enhanced quality of life and they had longer survival than the people who were getting aggressive chemotherapy and probably is 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 and 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 and 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 and often they're given the diagnosis and 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 and in the words of a patient there are no good words in that phrase and 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 and so 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 and so 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 and then it became adopted in Canada and 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 focus – in the 21st century where it is applicable throughout a disease trajectory and now is 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 and in fact neurologic diagnosis are now overtaking many of the cancer diagnosis as communists cause to access hospice care in the United States so our program as dr. back mentioned began in 2007 at the University of Toronto and I restarted a new program at the University of Alberta in 2015 and follows the principles of palliative medicine in collaboration with palliative care Spiritual Care and neurology and I think that multiple discipline approach is really important for us as a group and we see patients as a group and I think that is elevated all our practice skills and one of the tools that we use that you could also print up and use is the Edmonton symptom assessment scale and this is used for people with cancer but some of the symptoms you can see are relevant for people with advanced Parkinson's disease so pain fatigue drowsiness nausea losing your appetite shortness of breath depression anxiety and a sense of well-being and then we adopted it to include other symptoms like stiffness constipation swallowing problems and cognitive clarity and sometimes patients and their families just get really weary with all the paper that we throw at them in the clinic and why do we like these scales well if you don't ask we won't know what's happening to you and it's really hard for people with Parkinson's and their families to know what is related to Parkinson's and what is it and 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 and so 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 so it is important that your Parkinson medications are optimized and 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 and range of motion exercises are very useful to help reduce the pain because the sources of pain are not just related to wearing off but 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 and that is how they're spending all their day so if we can do range of motion exercises that can help them if they 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 and Parkinson's disease and finally if all these measures are either not working or not appropriate then considering pain medic and the last resort should be considered and so 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 and if you are prescribed pain medication we're all aware of the opioid epidemic in the United States and in Canada and so we are always trying to use the mildest medication or the mildest treatment for pain but use it effectively so 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 because 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 so 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 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 youth so 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 and the one limitation for pain medication is that the drowsiness and cognitive clarity can be impaired by the use of opioid medication and so that always has to be balanced and doctors should always be listening to patients and their family about the desired amount of pain control versus 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 and so 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 you're still looks like type 1 this is not good and 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 and there are many reasons why I obsess about people stool and it's because it causes my patients suffering they have bloating stomach pains back pain they can have hemorrhoids but most importantly your medications will not work properly because you do not get your medications absorbed and often appetite is lost and people will lose weight when they become very severely constipated and the good thing with a better daily poo is that your pills work better going to the bathroom is in a chore your diet is probably better and your appetite improves and there is evidence that if you have a good diet and you're having a daily bowel movement that you reduce your cancer risk for bowel cancer and so 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 using whole grains only and dry fruits seems to be a very high source of fiber that is natural and exercise exercise will help with constipation so 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 and then if that doesn't work as is often the case in later stages of Parkinson's using peg the commercial names are lakhs a day or miralax and 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 and in addition to this because the peg is to just increase the absorption of water into the gut to make the stool softer you can take Senna khat 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 and you may wonder what is this term well this is occurs when people are straying out of the questions why has this happened to me how can I go on and how can I find meaning in life and 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 that would be to be able to talk to someone about that existential distress is different from depression where people really lose joy and things that they're doing and they have a change in their sleep pattern and their appetite and it often stems from an event or events that shakes one's faith in the logic of the world so again harkening 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 I've led a healthy life why is this happening to me and what's the point I did everything the doctor said I went to the support groups I redid 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 and so I think that dealing with excessive stanshall distress is requires more time more patience and more Skills than most physicians have and so I would speak to a spiritual care practitioner or if you are connected to your religious group to speak to your pastor priest your rabbi your Imam speaking to a psychologist with experience and chronic illness can be helpful and also your local palliative care team if they are open to neurologic patients seeking a referral to them can be very helpful and 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 Kota Alliance org and here is the link and this is what you're going to see and what it allows you to do is put values on what is important to you in your health care what is somewhat important and what is less important and so 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 a and who do you want to share information with who do you want to be involved in decision-making and this can help you in formulating advanced care directives and so I've heard from physicians advanced care planning should only be done at the end of life but when you ask the public what they think about advanced 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 60% 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 70% prefer to die at home but 70% of North Americans die in the hospital a nursing home or a long-term care facility 80% of people want to talk to their doctor about end-of-life care but less than 7 is less than 10% of people have discussed end-of-life with their doctor and 82% think it's important to have their wishes in writing but 23% have actually done it and so despite the doctors reluctance to talk about this the public wants to talk about it and 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 so we took all the approved forms for advanced care planning in Canada and the recommended reading level for health information is grade 8 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 and so why is that 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 and so it's important to make these decisions early and have the conversation early and you can always change your mind in the future and so I always tell people who should have advance care directive am I talking about this to you just because you have Parkinson's disease in fact no 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 advanced care directive because having also providing a lot of hospital care for people in the hospital with acute illness to see the family struggle with these decisions is so sad and 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 in on the internet for example five wishes is a legally recognised document for advanced care planning in the state of Maryland and in fact in 43 states in the United States is recognized so you can go to this website five wishes dot-org and the five wishes concerned 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 a pain in order to be cognitively clear how I want people to treat me and what I want my loved ones to know so in conclusion palliative care is really appropriate for any stage of Parkinson's disease and 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 and that thinking about values can help cope with existential distress and that advanced care plans should be completed by everyone thank you dr. Miyazaki that was a fantastic presentation I really appreciated that was a found it's incredibly informative and really detailed I think you've covered a lot of potential questions that came in and yeah I think it's really important to emphasize and it can't be done enough that we talked about palliative care and I love your slide about palliative care is not hospice care it's not the same because it really sounds from your discussion that you know this is something that should be perhaps intertwined into a standard of care would you advocate that I mean because it sounds like from the understanding of palliative care is the we deal with a chronic disease you're always working to manage symptoms and for a disease like Parkinson's where we don't have yet a way to stop the disease and what a way to modify the progression of the disease is it not always palliative care from the minute you get diagnosed so Jim some people have facetiously said that that Wheldon all of Parkinson care is palliative i I do view that the palliative care philosophy is really the best practice of medicine you know 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 a family are functioning and so I and other people who have embraced palliative care and neuro palliative care is becoming a huge movement now I think we're reaching a tipping point that 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 and maybe that's why there's a lot of discontent in traditional medicine is 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 and so I would agree that palliative care should really be and in my opinion should be part of any movement disorder program that 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 and and my commitment to my patients is that I will provide care for until the end of their life or until I stopped practicing whichever comes first but I I think to commit to that is is important for our patients I agree and 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 I mean it 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 do how does one broach the subject when you have a loved one who who's been diagnosed with PD maybe not at the early stage but there may be mid stage and and these questions you know begin to arise some of these issues we bring up arise but what how does that conversation go from your perspective and how would you suggest a loved one talk to their to the person that they love has Parkinson's so when 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 and it's often the nurses or the PT a physiotherapist or the occupational therapist who says I think this person would benefit from palliative care and because we have this team intake and we're often seeing patients on the same day the patient's of the family often get the message several times in that day and 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 they're symptom burden and I often tell people that palliative care is is not about death and dying palliative care is about living well now and I think that's the message that needs to get out and that's the message that when when palliative care is really practiced at its best that they embrace and that they 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 so so you know when you talk to people and I appreciate you know coming from the clinician standpoint that that conversation would be easy but if you see you know in the u.s. we just had Thanksgiving last week and and you know why families come together and you can you see relatives you haven't seen in a while and maybe seeing how they're how they're doing or how well we're not wrong and and I can envision trying to bring up this issue you know telling you beloved uncle or grandfather what have you that maybe they should see a palliative care experts and you know it still has that connotation in the as we've worked to to dispel about hospice not being end-of-life when people say you know I'm not dead yet so do you is there you know the resources online is it these tools you provided are they away with which to begin to initiate that conversation you know going through the the card deck would go wish or you know thinking about even the five wishes so the people began to start thinking about that approach or is it or is it simply you know again you know thinking that we talk about the symptoms that a lot of people are experiencing the past it's the pain or the you know existential issues is establishing that a more robust care team that can help them with it and not even using the word palliative yeah so this is part of the debate but what we call ourselves and 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 and so 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 but we've tried to soften that so that they understand that there's like their symptoms are complex and they're often interrelated and if you relieve one you might make another one words like the example of pain so one size does not fit all in anything in medicine generally and so for some people the right approach is to go over the non-motor symptoms questionnaire or the in Edmonton symptom scale and see what their symptom burden is and if their symptom burden is high then that is someone who would benefit from palliative care and just focusing on the symptoms and saying look you've answered this and a lot of your answers are seven to ten on that scale and that seems like you're really suffering and maybe there are better ways of addressing that suffering for other people is going to be about facilitating that advance care planning or advanced directive planning conversation and some people want to know so an example for my clinic is I as part of our clinic flow and the second appointment we talked about and we just say do you have a plan and this one woman said I want to talk about it and 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 so you can meet resistance not from the person with Parkinson's but often from the family members to have this conversation and I think we have to focus on what the person with Parkinson's themselves is ready for and what they need at that time so there are many ways to approach highlighting what palliative care team can be but again I would say that for it to be truly effective it can't be someone just wrapping up a shingle thing I'm a palliative care provider but it has to be someone who really has this team-based approach to providing the palliative care and 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 in practice they will at least be able to start some of these conversations and facilitate people accessing the appropriate teams when it's passed their skills yeah I think that's a really good point is being able to identify when to refer to the professionals who really have that knowledge to help individuals when we talk about you know the care team we you know also clearly talking about family members and I just want to highlight to our audience that on the on the screen right now is a is a our caregiver summit which is coming up on December 1st it's going to have a live event that will happen and Arizona and this is something that you know we're very grateful to our presenting sponsor Arcadia pharmaceuticals for happening because we're going to be able to do is provide opportunity for people to watch it live at different satellite locations people can go to our website at Parkinson org forward slash summits in order to find more information about how they can register or satellite event or maybe even essentially setting up their own through a support group and you know really recognize that these these family members are important and efficient how that they can play a role and 14 people these tools and whatnot and one of the questions that come through is actually not from a family member but from an allied health professional in Wisconsin and they're asking about the five wishes for helping with advanced care directives and they're asking you know should something you bring up is it appropriate for someone without the eighth grade educational level someone has less than an eighth grade education level so that meets your criteria as you brought up all the different provincial the the readability score for the provincial advanced planning directive ones but does the five wishes one is a very straightforward form and so the readability is acceptable and as probably why it's been embraced so widely by by this many of the states in the United States and there was a neat story that they have on their website that one woman has 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 and so at Thanksgiving she put her completed form she photocopied it and she put it on everyone's dinner plate and she said until you read this nobody's having Turkey and so I think it does you know bring to the fore that sometimes it's the person with Parkinsons who wants to have this conversation but the family isn't ready to have it and it you know I've seen all sorts of variations and permutations and that's why if multiple different approaches continuing to invite people to explore these topics not forcing people to do it and trying to bring them to help when they need it at the right time and I think that the Parkinson 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 and 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 that would be fantastic and yeah I think it's something that as we work to make lives better our motto that hopefully we can we can achieve um you know some practical questions if I can because we've been you know dealing with getting big-picture issues holistically you know some questions that are coming in from our listeners are you know they're excited about what you're talking about with the palliative care approach how do they find places that offer real palliative care is it something they talk to their moon sorter neurologist about or their neurologist and have them try to buddy up with someone who's you know palliative care background or is it there a centralized place to find this information out and so palliative care can be available at places that have a neuro palliative care specialist so these are neurologists who taken X 1 year of extra training in palliative care in the United States in other countries there are different criteria to be a palliative care specialist and these are neurologists who can provide palliative care and are often practicing in a palliative care group primarily so 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 and 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 this 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 so cardiologists always think neurologists are slow but a neuro palliative care appointment is even slower still and that's because these conversations are weighty and you cannot rush them and there cannot be the stopwatch to move on to the next patient so 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 start providing that and 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 neurologist start to ask why doesn't our state have that why doesn't our program have that and I think that will provide the biggest motivation for people to move forward and really have excellent palliative care available for our patients I think you're right it's the only way we're gonna be able to change the system is from the people who actually use it and what they demand in order to do I think that's really probably the best way to do that you you brought up some issues that the symptoms that people are experiencing that that are in common ones that address in palliative care and one of them was pain and I know that in your country in Canada that there's been a experiments underway now with the legalization of marijuana is that something that you see and some what exists accessible here in the United States and depending on the location as a potential treatments for for pain what we'll do you see that in the kind of the many of these issues that you bring up that people with end-stage or advanced age Parkinson's and experiencing dr. Breck you bring up a question that is asked virtually every clinic and sometimes every single appointment is about the use of cannabis and Parkinson's disease although Parkinson's disease is considered a diagnosis that allows the medical use of cannabis in some states there was in fact no evidence that it provides benefit for pain and 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 anti-seizure medications which are another approach to pain management and further although many people say that they are getting pure CBD oil most of the CBD preparations do have some t HC which is the centrally active and cognitively changing component of cannabis and these agents can cause people to be delirious and that means confused not as cognitively clear and that this can fluctuate there is a report in the Canadian Medical Association Journal of a patient who actually developed hallucinations after the youth of a synthetic cannabis that was regulated and had an actual dose so people knew what what this woman was taking and it was prescribed under her family doctor's direction and she developed hallucinations that did not go away despite stopping the cannabis so we can tip people over potentially from being cognitively clear and functioning to not functioning well and given that cognitive impairment and Parkinson's disease approaches seventy to eighty percent depending on which literature you read this is a risk that many people are not willing to undertake and so I think it's important for people to be aware of the information as as well as the potential benefits but the potential risk it is risk sound very real and severe so I think that's that cautious approach is really warranted I think too often people are associating access with efficacy when it comes to the middlemost medical marijuana and something I think that the foundation plans to address moving forward so we're coming to the top of the hour I wanted but our listeners know that there's a survey online right now that's on their screen if they want to to fill it out and provide feedback for doctor sake and for this particular actually breaking that's something we utilize and provide to our presenters and use it to improve our program so I encourage everyone to do so I also want to let people know that if there are topics you know that brought up you want to listen to again that will have an archive of today's expert briefing made available beginning next week so that's Tuesday December 4th and you can go to Parkinson org in order to to download and listen to dr. mazaki again next webinar is going to be January in the new year and we're going to have dr. Ronald Pfeifer from Oregon Health Sciences University and one of our Centers of Excellence talking about non-motor symptoms and what's new we're buying Parkinson's disease so dr. mazaki if I may have a final question from you do you have the time you know one issue that's come up is we talked about this as how to care we can't separate it from hospice when does one make that transition between thinking about palliative care hospice care as we talk about these end-of-life changes that people experience so within the United States for people who receive Medicare the hospice availability is in the last six months of life and the services available at that time high are highly variable depending on where you live and the hospice that you become enrolled in and so at the minimum it provides equipment in the home it can provide day programs it can provide a visiting nurse of varying frequency I've heard everything from once a week to once a month and the nurse will also have access to the hospice director who is responsible for all the patients who are enrolled in that Hospice so 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 is highly variable with everything from in New Zealand and Australia where 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 is really according to need to Canada where many provinces have less than three months life expectancy in order to access inpatient hospice services so 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 thank you very much and you bring up a really good point when we talk about the reach of your talk we have 1600 over 1600 listeners 28 countries and world Canada and the United States hear their doctor Miyazaki thank you very much for your time today is a wonderful to hear from you thank you Jim and everyone out there thank you for listening and I look forward to speaking to you again in the new year bye-bye

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