Dr. Janis Miyasaki

April 2017

 

Dr. Miyasaki is a member of the Movement Disorders Program at the University of Alberta. We spoke to her last year about advanced care planning, hope, and research. This is our follow up to that conversation.


Parkinson Association Alberta (PA): In our last interview, you spoke a lot about hope and specifically, the evolution of hope. Is it difficult to give people with Parkinson’s hope when they’re having off days or when their symptoms progress?

 

Dr. Janis Miyasaki (DJM): There are many issues surrounding hope in Parkinson's. One is the pre-morbid personality. Some people are just naturally optimistic people. That may change when they develop Parkinson's because there are neurochemical changes that can affect mood and motivation. But in my 25 years of experience there are people who maintain a very optimistic outlook. These are people who are able to take great meaning in day-to-day things that occur.

For example, one of my patients in Toronto, a retired professor, she was in a wheelchair and she had to have an ostomy bag because she got an ischemic bowel as a complication of Parkinson's. She was quite cognitively impaired and she was requiring full-time care. And yet every time I saw her, when I asked how she was, she would say, "I'm just great."

She always had something good to tell me about that had happened in the last three to four months. Her family was also good at incorporating activities to help her feel hopeful. They arranged afternoon tea with some of her former students. They would organize things that were social and engaging for her. They were also fortunate enough to have around-the-clock care.

Even in the face of great disability and suffering, there can be hope. There can be meaning. I really believe that. But if a patient defines a "good day" as going to work, putting in a full day and then doing all the activities around the house, they may not be able to reach that again. And with Parkinson's there will come a time when they can't reach that. Rather than thinking there is a time to reflect and change priorities, they may just say, "I am useless because I can't work."

 

(PA): How would that affect disease progression?

 

(DJM): I think that when you develop that negative view, it becomes hard to understand why you should do anything that improves your condition. As we are now much more aware, exercise and socialization are very important in Parkinson's. If you feel that this is a relentlessly progressive illness that nothing can stop, then why would you put in the effort to go and do those things? There are very few people who say, "Yay! Exercise!"

If we called it something else, maybe people would want to do it more. 

 

(PA): We almost need a euphemism for exercise.

 

(DJM): We came up with a term-- "self managed care". Instead of something that you have to go and do, it's a self-managed activity. Patients can say, "I am going to manage my illness by doing this."

There is research which shows that people who exercised frequently around the time of Parkinson's diagnosis, those people did the best. The next best were the people who started exercising in the first year after diagnosis. They did better than the people who started exercising two years later. Even some exercise is better than none. You have to feel there is a purpose to it. You have to feel that there is hope that you are affecting change. That you feel some self-agency. 

Many people who develop an illness become so medicalized that they lose that self-agency. I mean that "I have control over what happens". Control over how they respond to circumstances. They can choose their own path whether it's negative or positive.

I think that he medical system and many people's approach to disease is in many ways passive. "I have a diagnosis, give me a pill" or "I have a diagnosis, give me surgery. Replace what is not right".

Rather than "What is there that I can do that will improve my quality of life?"

 

(PA): How does that relate to your work with advanced care planning?

 

(DJM): That is an opportunity for people to make choices and have discussions with physicians or health care providers who know their condition very well, rather than lawyers. I'm surprised at the number of people who actually do their advanced care planning document with a lawyer. Although it is a legal document, it isn't really something that a lawyer can really council you about. For example, a lawyer cannot tell you what will happen if you have early-stage Parkinson's and you go to the ICU versus if you have Parkinson's in later stages and you have dementia and you go to the ICU. And yet that information is really important to the decision you make to go to the ICU or not.

 

(PA): So would you recommend having a physician or neurologist in those discussions in addition to a lawyer?

 

(DJM): You don't need the lawyer. What's amazing is Alberta has a very well-developed system. It's called the Goals of Care, also known as the "greensleeve" because it goes into a green plastic sleeve that patients take everywhere with them. It very clearly outlines the levels of care because often documents have things like, "if I'm in the ICU and there is no hope of recovery, then I want to be unplugged". I know it sounds specific, but to a physician it's very non-specific. What does recovery mean? Does it mean recovery to the previous state? Recovery to recognizing family? Recovery to being alive? Or does it mean something else?

The Goals of Care document is very complicated and a physician is needed to complete it but it does go through the levels of intensive care treatment, medical treatment, as well as comfort care. 

To have those conversations in an emergency department is not good because that's a time when everyone is emotionally charged, the situation is very stressful. The patient may have been waiting for many hours and there's been an acute change in health.

As opposed to having that discussion in a doctor's office in a fairly stable state of health and discussing with family prior to making a decision.

Having a Goals of Care form completed with family should be done for anyone after the age of consent. Things can happen that we can't predict, even for a 19 year old. But what are the appropriate goals of care for a 19 year old who is in perfect health compared to a 70 year old who has a chronic neurologic problem? They're two different things and the outcomes are different.

 

(PA): A 19 year old would never think about that but obviously it's important to consider.

 

(DJM): I think that having the Goals of Care completed is part of things we should be doing. Stuff we should be talking to our families about. To have it in an informed way is also very important. I've also read some documents that people download from the internet and they are often not specific and therefore can't help direct care. That's unfortunate because the family feels bound by those written words, even if they're not in the best interest of the person.

The hardest thing for families in hospital is to be sure they're doing what the patient wants or would have wanted. Many people know what might be in the person's best interest, but to be sure you're doing what the person wanted is really hard. It's hard to put aside one's own feelings of wanting the person there no matter what versus what that person wanted. To be selfless like that is hard and it's a terrible position for a family to be in if they haven't had the discussion before.

 

(PA): You've mentioned that society has made death a "disease". Obviously it's something that's difficult to talk about. With so many "baby boomers" reaching advanced age do you find that's changing at all?

 

(DJM): I think a lot of people, as they get older, want to talk about it. There are always going to be some people who never want to talk about it but there are quite a few people who want to. 

There was a research study that looked at family doctor appointments with elderly people. In the study, the topic of death was hinted at several times by the patient and ignored by the physician. That may stem from the fact that doctors are human too. They get attached to their patients and some of them don't want to think about or talk about these things. Or they're concerned that people will get angry. Also, for many of them their only discussion or encounter with advanced care planning or goals of care is in a hospital setting when people are very emotional as opposed to in an ambulatory setting. They can address the likelihood of patients returning to their previous level of health.

The chances of returning to a previous level of health from the ICU are poor, even for people in their thirties who were in good health prior to going in. Most of them report fatigue, not being able to go back to work, they have cognitive problems, and mood problems. Going to the ICU is not a benign thing and most people don't realize that. On television it looks so clean, tidy, and peaceful. But if you talk to anyone who's family member has been in the ICU, they'll tell you that the care is excellent but it's very traumatic time. Most often patients are sedated, they can develop complications. It can be noisy, bright, and disconnected. It's not an easy thing to go through for any person.

When ICU stays are brief (a few days) people generally do well. When they're long and when one complication leads to another, the outcome is generally not as good.

 

 

(PA): Focusing on you, what are some achievements you’re proud of?

 

(DJM): Our centre has completely moved to the electronic health care record. Our patients' records are available on the University of Alberta system. This means that any family practice clinic or physician that is connected can access them through AHS. The reason why this is important is, people can look at the notes. They can look and say, "Oh, you were seen by Dr. Miyasaki last month. Let's see what she said," and they can actually look it up. They can see everything that we do.

Our clinic has also standardized a lot of assessments for our patients so they're more consistently getting an assessment of both cognitive status and non-motor symptoms every year. Yet we're still maintaining our patient volumes of over 5,000 patient visits a year. 

In addition, we're starting a new surgical screening clinic in June and that will be staffed by Dr. Fang Ba, who is the neurology lead for the surgical program and movement disorders, and myself and we'll be seeing approximately 12 patients a month to screen them for eligibility for surgical interventions in movement disorders.

 

(PA): So would that include procedures like deep brain stimulation (DBS)?

 

(DJM): It could be anything from the Gamma knife, lesions, or deep brain stimulation and includes all the differenty varieties of patients we see. Although the movement disorder clinic is dominated by Parkinson disease. In fact, we care for a whole group of patients on a long-term basis. 

Our movement disorder clinic is quite varied in terms of the patients, procedures, and modalities that we can use to assist them. We're taking full advantage of that. We've also had an occupational therapist join our team  and we're looking forward to her contributions to our patients' well-being. 

We're really starting to do a lot more investigator-driven studies. There are industry-sponsored studies, which are generally surrounding medication. Then there are investigator-driven studies and these are studies that ask questions that of interest to the investigator or in our case our neurologists or our neurosurgeon, Dr. Tejas Sankar. So we have questions that may never be of interest to a drug company but are very interesting to us because they impact our patients and because the clinical care of our patients is informing our research, which is that crucial link. For example, the Hope Study involves doing a positive psychology study to see if giving patients positive psychology-based group therapy in the early stages can help them be more positive and therefore be more engaged in their healthcare.

 

(PA): Is that an ongoing study?  

 

(DJM): It's halfway done. In the fall we'll have another cohort of patients and I have to give many kudos to Susan Skaret at Parkinson Association Alberta in Edmonton because she's been a great supporter of sending patients to us who might be eligible. 

I'm the principal investigator for the first large-scale randomized controlled study of palliative care in an ambulatory setting given by movement neurologists and that is halfway through also. This is really for anyone who has unmet symptomatic needs, who has existential distress, or caregiver burnout and has Parkinson's or Parkinson Plus and they can be recruited into the study, which lasts a year.

Finally, we were just added to the National Parkinson Foundation "Parkinson Outcomes Project", which is a cohort currently of over 10,000 people with Parkinson's around the world who are being followed on an annual basis to look at standardized measures and give quality information back to the site but also to inform the neurology field in general about what things are important for people with Parkinson's.

 

(PA): What do people not know about your clinic?

 

(DJM): Often people are surprised that our centre is so big and that it's so busy. So my job is to make that much more known. Our clinical nurse at the Kaye Edmonton clinic was selected for the National Parkinson Foundation mentor program so she'll learn some of the things going on at other centres. That will help other people see that our centre is busy, vibrant, and that we have many disciplines that many other sites in Canada do not have. We are really fortunate because that's all been possible through support of Parkinson Association of Alberta and AHS. They've been really supportive of our clinic.  

 

 

(PA): How important is it for people to participate in research?

 
(DJM): Participation in research is an important aspect of hope. I've been doing research in Parkinson's since 1992. When people participate in research and they say, "I'm doing this because it may not help me, but it will help the people who come behind me," that's an altruistic thing and it's important for us all to have some feelings of selflessness. Also, to believe that what you're participating in will help people who come behind you, that's hopeful. It's empowering for people to participate in research. 
Studies have shown that people who participate in research are better informed about their illness, they feel that they're more able to ask questions and advocate for their healthcare, that they feel that they have up to date information. Often people realize we're constantly doing research and it helps them feel like they're part of the progress and that their physicians are part of the progress too.

I think that once patients participate in one study, they generally have a good experience and they want to participate in more. Some of them, as soon as they finish one study, say, "Is there another one I can do?" or some say, "Is there anything else? Do you have another study I can do?" during the study. They find it quite enjoyable. We're really grateful that our patients have been very positive about it.

 

(PA):  What's next for you?

 

(DJM): Another study that's just started up is called COMPASS. It's a study that Dr Camicioli is the principal investigator for. It's across Canada and we're recruiting for Parkinson's of any stage, with any cognitive status. They get cognitive testing, very high level MRI scanning, and then biomarkers are drawn. Then we look and see if we can predict who will develop cognitive problems and those who will not. Also, to give us a better profile of people with Parkinson disease. This is very exciting because biomarkers are viewed as an important area of emerging research in Parkinson disease because right now we only have the physical exam to infer whether people are doing well or not. Biomarkers may give an objective sign of progression.

 

(PA):  How would someone get involved in any of these studies?

 

Hope Study: Positive psychology group therapy for "newly" diagnosed people with Parkinson's (<5 years) can call Kenneth Murdoch at 780-990-9285

 

Ambulatory palliative care for Parkinson's: those with unresolved symptoms, existential distress and caregiver burnout Francis Cheung:  780-248-1797.

 

 

 

 

 

 

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