Dr. Janis Miyasaki

February 2016


In this installment, we speak with Janis Miyasaki, MD, MEd, FRCPC, about Advanced Care Planning - what it is, who is it for and why it is important.  Dr. Miyasaki completed her medical school, residency and fellowship in Movement Disorders at the University of Toronto.  During her time there Dr. Miyasaki developed an interdisciplinary Palliative Care Program for Parkinson disease and related disorders, the first of its kind in the world.  Dr. Miyasaki is currently the Director of the Movement Disorders Program at the University of Alberta, Kaye Edmonton Clinic and University Hospital.


When people talk about living well it is often a "present" conversation; however living well encompasses a lifetime and as such planning for the future is key; especially when it comes to future healthcare decisions.  This is where Advance Care Planning comes in.  So what, exactly, is Advance Care Planning?  Simply put, Advance Care Planning involves learning about the types of healthcare decisions that might need to be made, thinking about those decisions ahead of time, and letting others (family members, healthcare team, other care providers) know about your preferences by way of both discussion and documentation.

Parkinson Association of Alberta (PA):  What led you to the research that you're doing?  What led you to advance care planning?


Dr. Janis Miyasaki (DJM):  I started doing clinical trials initially and over time I realized that as patients deteriorated they stopped coming to clinic.  I wondered why.  They stopped coming to clinic because they stopped receiving messages of hope.  In palliative care I think we have to give them hope in a different way.  So I talk about the evolution of hope in Parkinson's.


At the beginning (of a Parkinson disease diagnosis) you hope for a cure.  Actually that's not true; at the very beginning you hope that everyone is wrong and you don't have Parkinson's.  That's the real hope.  Then once you accept you have Parkinson's you hope for a cure.  Then as symptoms progress you hope you will be able to find a medication that works well for you and that you'll be able to keep functioning.  Over time your hope becomes different .  When you're in advanced illness we can still give people hope, but they have to hope for different things.  We can always do something for the patients.  We can always at least try; many patients don't expect perfection, they just want to know that you're thinking about them and you're making an effort to try and help them live better.


PA:  When should people start planning and/or discussing Advance Care Planning?


DJM:  Everyone has different feelings on this topic.  Research shows there are people who want to start the planning/discussion right away, while others only want the discussion when they are ready to initiate it.  And then there are people who indicate that they never want to have the discussion.  That is unfortunate as some of the hardest decisions for families happen when their loved one is unable to be an active participant in their healthcare decisions whether it is due to emergency situations or illness.  They are often racked with guilt wondering what to do or if they are making the right decision.  I think that if people looked at it from their loved one's perspective they would want to relieve their families of that difficult decision making.


PA:  How does one begin?


DJM:  You start by thinking about your values, what is important to you.  How much information do you want to receive?  How much information do you need in terms of making the best decisions for receiving medical care and procedures?  How involved do you want your family to be?  Then with that framework you can initiate a discussion or plan with your loved ones.  Your physician/neurologist of choice should also be involved as they are a valuable asset in discussing medical care and procedures and help you figure out how intensive you want your care to be.


PA:  Do you think that the reluctance to have a conversation can go both ways?  That maybe the person with Parkinson's is willing, but the care partner or other family members are not...or vice versa?


DJM:  As physicians it is the patient who we are serving.  I have had times where the patient says, yes I want to discuss this; and often the spouses are aware that they need to have a discussion.  It's usually the adult children who struggle with it.  People have a tendency to think it's a negative topic to talk about but I think it can be empowering for people.


PA:  Could the perceived negativity be associated with the stigma of Parkinson disease and the end of life in general?  End of life is something that for the most part people are scared of.  It is not something we embrace, it's not something we want to talk about.  If we talk about it more and sooner, maybe it becomes a little less scary...it makes some of those decisions less scary and less stressful.


DJM:  Definitely, society has made death a disease.  A disease to be ignored, not ignored...avoided at all cost.  By having the discussions and giving people the tools and support, people have the ability to say, "I made this choice."  You have a choice.  I try to emphasize that.  People should feel empowered.


PA:  When you look at a plan like this, how often do you go back and look at it?  When something changes or every so many years?


DJM:  I've heard Dr. Wendy Johnson, a neurologist for those with ALS, talk about Goals of Care being like your evening clothes.  Every once in a while you need to take them out to see if they still fit.  That is an appropriate intensity of care for a healthy 20 year old is different for a healthy 50 year old and changes over the course of a liffetime, or the course of your illness.


Another way to think about it is, how likely is it that, if I have all the intensive treatments, that I would be able to live at home.  Or that I'm going to return to a level of function that is acceptable to me.  What is an appropriate decision now may not be the best decision in terms of your goals later on in life.  We have to get used to having this conversation as life goes on.


PA:  Do you think that having something tangible written down could be part of the fear?  "What if I change my mind?"  But the truth is, you can change that plan.


DJM:  It (AHS's Green Sleeve) is a living document.  It's dated, it notes who is present when the discussions take place, it outlines the goals of care discussions, decisions and outcomes.  It is designed to be carried with an individual.  If things change or decisions change, those too are identified and documented.  The documentation helps both medical providers and loved ones fulfill the patient's wishes better.


PA:  So essentially it's designed to help people live well and define what it means to live well.


DJM:  It's about how you frame your life.  If you say that you're only successful because you have a job, you can drive a car, and you can do all these things; you're defining yourself by all these external things.  But life has meaning beyond that and the key is to help patients find that meaning and find hope in daily things.  To make the best decisions they can for themselves and their loved ones.


PA:  Can you offer one piece of advice you would like to share with our readers?


DJM:  I would say it's important to have hope, and to be optimistic and to participate in life.  When people start to withdraw it harms them doubly because it's that social interaction and all those things that are so important for quality of life and for our continued good function.  To have hope is crucial.

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