The future of Alzheimer’s and end-of-life care in Canada
Webinars | September 23, 2021
One in five Canadians has experience caring for someone living with dementia or Alzheimer’s. Further, the prevalence of dementia more than doubles every five years for Canadians age 65 and older, from less than one per cent for those age 65 to 69 to about 25 per cent for those 85 and older. In this webinar, learn what is currently being done with respect to advance requests for medical assistance in dying (MAID); hear directly from a MAID provider to better understand eligibility and how it affects those with dementia; and more.
Tip: We’ve uploaded timestamps so you can jump straight to the questions and answers that interest you most. Just select “Watch on YouTube” above, and read the description underneath the video
One in five Canadians have experience caring for someone living with dementia or Alzheimer’s. Further, the prevalence of dementia more than doubles every five years for Canadians age 65 and older, from less than one per cent for those age 65 to 69 to about 25 per cent for those 85 and older. In recognition of World Alzheimer’s month, DWDC hosted this webinar to learn what is currently being done with respect to advance requests for medical assistance in dying (MAID); hear directly from a MAID provider to better understand eligibility and how it affects those with dementia; and more.
If you prefer to view this content in video format, you can access the recording here.
Dr. Ellen Wiebe is a Clinical Professor in the Department of Family Practice at the University of British Columbia. After 30 years of full-service family practice, she now restricts her practice to women’s health and assisted death. She is the Medical Director of Willow Women’s Clinic in Vancouver and provides medical and surgical abortions and contraception. She developed Hemlock Aid to provide consultations for doctors and patients about aid in dying and provides assisted death.
Jule Briese is a poet living in Qualicum Beach, B.C. Her inspiration is drawn from nature and the guidance and wisdom offered through her Guides. Jule’s most recent book, “The Hot Chocolate and Decadent Cake Society – Alzheimer’s and The Choice for MAID” is a memoir in poetry and prose. Her book advocates for legalization of advance requests for medical assistance in dying for those with dementia who have expressed this choice.
Puneet Luthra is the Director of Government and Stakeholder Relations at Dying With Dignity Canada. He is a government relations professional with 15 years of experience in the charitable and non-profit sector. He holds a Master’s degree in Public Administration and a Bachelor’s degree in Political Science. Puneet’s experience includes leading the Government Relations department at Inspire where he was responsible for working with the federal and provincial governments to increase access to post-secondary studies by Indigenous students. At Earth Rangers, Puneet served as the Associate Director of Government & Foundation Relations, where he positioned the charity as the leader in children’s environmental programming; and as the Government Relations Manager for Big Brothers Big Sisters, Puneet’s work was focused on incorporating mentoring into provincial ministries that serve children and youth.
402,000 Canadians live with dementia
76,000 people are diagnosed each year
56% of Canadians are concerned about being affected by Alzheimer’s
1 in 5 Canadians have experienced caring for someone with dementia
About 2/3rds of Canadians living with dementia are women
50 million people live with dementia worldwide. This number is expected to rise to 131 million by 2050
Can a person with a dementia diagnosis access medical assistance in dying?
Yes, some people with a dementia diagnosis can access MAID. All dementias progress differently and each individual will have their own unique case, however while a person still has capacity, they can discuss being assessed for MAID with their health care provider.
Advance directives and MAID
Currently under the law, it is not legal to request MAID in the event of a dementia diagnosis in your advance directive (Advance Care Plan).
Advance requests for MAID are currently under review in the Parliamentary Review of MAID.
What is the Parliamentary Review of MAID?
A review of medical assistance in dying in Canada was mandated in Bill C-7 when it passed in March 2021. A committee of both Houses of Parliament was struck in June 2021 to review advance requests, MAID for mature minors and those whose primary condition is a mental illness, the state of palliative care and the protection of people with disabilities.
In regards to advance requests for MAID we can expect a block of time held by the committee to study advance requests, this could include a call out to hear from experts and those with lived experience. We know that 80% of Canadians support advance requests for MAID.
What is the difference between the waiver of final consent and an advance request?
The waiver of final consent allows someone who has already been assessed and approved for MAID to receive it on their chosen date even if they don’t have the capacity to consent at the time of the MAID procedure. This would be based on a signed and dated agreement with their MAID provider and the patient must be in Track 1 whereby their natural death is reasonably foreseeable. The waiver can only be used by the MAID provider who signed it and it refers to the date selected for the MAID provision, not a state of health.
An example would be when a person loses capacity before their scheduled MAID date because they had a stroke and could no longer communicate.
Advance requests for MAID are different than the waiver of final consent, and are currently not permitted under Canada’s assisted dying law.
An example of what advance requests could potentially look like would be when a person expresses in their advance health directive that in the future, with a given health condition or state such as Alzheimer’s, a MAID provider would carry out an assisted death for this person.
How do we balance clinician willingness and patient interest in advance requests?
Dr. Weibe was involved in a study asking providers in which situations they would be willing to provide MAID with an advance request. There were many MAID providers who were uncomfortable with the idea of providing MAID to a patient they did not know with an advance request. There is much to learn about how we would handle advance requests should they become law.
How do the election results impact MAID legislation?
The make-up of our new government is very similar to what it was before the election, a Liberal minority. At DWDC we are urging the new government to reconstitute the Parliamentary Review of MAID as soon as possible.
Jule Briese – author and advocate for advance requests for MAID
Great Life Giving Spirit – Native American Tradition
(Jule read the first verse, you can see the whole piece here.)
Great Spirit of love, come to me with the power of the North.
Make me courageous when the cold winds of life fall upon me.
Give me strength and endurance for everything
that is harsh, everything that hurts,
everything that makes me squint.
Make me move through life
ready to take what comes from the North.
Jule’s book “The Hot Chocolate and Decadent Cake Society – Alzheimer’s and the choice for MAID – a memoir in poetry and prose” offers snapshots of the first year after Jule’s husband Wayne’s Alzheimer’s diagnosis. It strongly advocates for his right to choose MAID when quality of life, as he defines it, becomes painfully compromised.
Jule also coordinates a Compassionate Support Program. It includes sharing, personal reflection and relevant activities that nurture compassionate support. It includes four components, each one is a 2-hour session for 8 participants.
We are pleased to have with us Ellen Wiebe, Jule Briese, and Puneet Luthra.
Dr. Ellen Wiebe is a clinical professor in the department of family practice at the University of British Columbia. After 30 years of full service family practice she now restricts her practice to women’s health and assisted death. She is the medical director of Willow Women’s Clinic in Vancouver, and provides medical and surgical abortions and contraception. She developed Hemlock Aid to provide consultations for doctors and patients without aid in dying and she provides assisted death.
Jule Briese is a nurturing partner to her husband who was diagnosed with dementia in 2018. She supports his right to choose MAiD when it his quality of life as he defines it becomes painfully compromised, and his window for capacity of giving informed consent is narrowing. She is a strong advocate for advanced requests for MAiD. She believes in the importance of access to emotional and spiritual nurturing for those who have chosen MAiD as well as for their nurturing, nurturing partners. Jule is also a volunteer facilitator for ElderCollege, Vancouver Island University.
And finally, we have Puneet Luthra with us today. He is the director of government and stakeholder relations at Dying With Dignity Canada. He is a government relations professional with 15 years of experience in the charitable and non-profit sector. He holds a master’s degree in public administration and a bachelor’s degree in political science.
So welcome to all three of our speakers and our fantastic audience. I will now turn it over to my colleague Nicole.
Thanks, Kelsey. And thank you all for being here, our speakers and our audience. So today, we’re obviously meaning to talk about Alzheimer’s and dementia and end of life options. So I just want to start with a few statistics to set the stage here. So worldwide, dementia affects more than 50 million people, a number that is supposed to increase to almost 131 million by 2050. And in Canada, more than 402,000 seniors so folks 65 years and older, are living with dementia. About two thirds of those living with dementia in Canada are women, and 76,000 Canadians are diagnosed every year. However, Alzheimer’s and dementia affects more than just those who experience it, one in five Canadians care or cared for someone living with dementia. And the disease play heavily in the minds of Canadians. Back in 2017, a survey reported that 56% of Canadians are concerned about being affected by Alzheimer’s.
So that’s why we’re here today talking about the future of Alzheimer’s and end of life care in Canada. I will stop sharing myself that everyone can see us. And we’re going to get started today with a q&a with Puneet and Dr. Ellen leaf. So Ellen, can you get us started and tell us right off the bat. If a person with dementia diagnosis can access medical assistance and dying?
Certainly can. And this has been an important thing for me to help with. So let me just give you background on my work. Over the last five and a half years, I have assessed 664 people for assisted dying, and I provided for 370. And as you probably know from all the other information we’ve received, most of these people have cancer.
But I have provided for 15 people who have dementia, and I have one scheduled very soon. And I have assessed 24 for medical assistance today. So you can see that that’s a very small percentage of the total that we care for. And because I do a lot of the complex assessments, I am naturally being referred dementia patients ahead of some of the other physicians and nurse practitioners who do these assessments. And Alzheimer’s is the most common form of dementia and seven of the 15 had Alzheimer’s and the others had the varying other types of dementia that people are diagnosed with.
Thank you for sharing your numbers. I think that’s a clear picture for everyone and give them an understanding of things and you actually answered my second question which was, have you provided MAiD for a person with dementia? And so we know that’s a yes. So then I guess let’s turn it over to talking about MAiD and capacity. How did this capacity requirements change with the passing of Bill C-7? And how do you determine capacity for a person with dementia?
So for my patients with Alzheimer’s, the new law did not really change anything, except that it does give some people more of a feeling of confidence. So for example, right now I have a patient who is planning her death at the end of October. She has Alzheimer’s, and I have signed a waiver final consent with her. But I explained to her as I have explained to the others, that what happens in the process of Alzheimer’s disease is that people lose their ability to understand their own condition before they lose other forms of function. And so it doesn’t work to say, I’ll sign a waiver, and then wait till I’m unable to recognize my family. But there’s not a chance that you would be able to do that because of the way Alzheimer’s progresses.
So she and I have signed waivers. And it’s basically the same as for other people who are qualified for medical assistance and dying, the waiver is meant for when you lose your capacity, and you want to have provision before a certain date. Now theoretically, you could find a provider who would say yes, on October 1 of 2017, sorry, of 2027 or 37, or 47. I will provide MAiD and before that if you lose capacity, but in fact there’s no providers in Canada who do that, most of us are giving a limit of about three months, and some about six months.
And so it’s basically the Audrey Parker amendment. Audrey Parker was the woman with brain metastases, who wanted to have Christmas with her family, but couldn’t because she was in danger of losing capacity. And so she died in October instead of January. And that’s what we use. So I’m certainly signing these with dementia patients, but I’m signing them, basically, in case they have a stroke, rather than in case they’re Alzheimer’s gets worse.
Right. Yeah. Okay, thank you for sharing that. That clarifies things, we get a lot of questions about the waiver of final consent. So it’s good. And I know we talked about it at our last webinar, but it’s nice to hear the experience directly from you and what you’re doing with patients and obviously specific to this area. And one question that we get a lot of the time and, Ellen, this one is for you as well. And then Puneet, I do have a question for you. But can a person in early stage of a dementia diagnosis request to access MAiD for when they reach later in the stage of the disease? So I get diagnosed, I come to you early on.
Right? So there are dementias, for which this would happen. So for example, Creutzfeldt–Jakob disease is an extremely… mad cow disease is an extremely rapid progression. So that once you’re diagnosed, you probably got six months to live. And the progression is shockingly fast, it can be even faster. So for somebody like that, there’ll be no problem for us signing a three-month waiver and going ahead. And also just the process, of Creutzfeldt–Jakob and what it does to your brain, it means that it takes away speech and other things before it takes away some of your consciousness of who you are.
Unlike Alzheimer’s, which takes away that sense of who you are, before it takes away the other functions. And so yes, the only person with that condition that I assisted with before was before this year, so I didn’t have a chance to sign a waiver with her. But I could, but not Alzheimer’s. Alzheimer’s prognosis is three to 10 years depending on your age and physical condition and so on from the time of diagnosis. So I can’t do it for that.
Thank you. Okay, let’s just hear the second. And Puneet, this is one of our, let’s bring you in. This is one of our most asked questions, and I think we’ve answered it before, but we really want to make it clear. Can someone include in their advanced directive that they would like MAiD? Should they receive a dementia or Alzheimer’s diagnosis.
Thanks, Nicole. That is a question that we receive quite often. And so my answer to that would be that what one includes in their advanced directive, including an advanced care plan, which you can get through Dying With Dignity, Canada, is really up to the individual. In terms of requesting that may be provided in the event that they get a diagnosis of dementia in that plan, they can include it however, it’s not a legal option in Canada at this point. So one cannot legally request access to MAiD within the current law. So I hope that’s clear in advance requests are currently not the law in Canada, they will be studied in another format, the parliamentary review, but they’re currently not legal in Canada.
Thank you Puneet. And actually, you mentioned the parliamentary review. And that kind of leads into my next question. So we know that like you just said advanced directives are being considered in the parliamentary review. Can you speak to for those who don’t know what the parliamentary review is? And what we might expect to come from it specifically regarding advance directives? Or sorry, advance requests?
Sure. And I think everyone knows that when one of the confusing things about the whole topic around advance request is the language that we use. So you will hear me always use the term advance request for MAiD. And I’ll try to stick to that even when I answer these questions. But the parliamentary review was mandated in Bill C-7, as we all know, Bill C-7 was part was passed in March, actually St. Patrick’s Day of this year. And then the joint committee to essentially run the parliamentary review of MAiD legislation in Canada that was struck in June. So a few months after passage of Bill C seven.
The joint committee did begin its work. And the first few meetings, I think they only ended up having three meetings. But the first few meetings were focused on sort of this state of MAiD in Canada in terms of the sort of hard numbers, so number of deaths attributed to MAiD or by MAiD, and just other stats around that. And so the parliamentary review, in addition to that, is to take a look at five main issues. So they include advance requests for MAiD, the issue of access to MAiD by mature minors, and by people whose sole condition is mental illness, the state of palliative care in Canada and the protection of people with disabilities.
When it comes to the discussion of advanced requests for MAiD, what we will see is probably a certain block of time held by the committee to study each of those issues. But so when it comes to advanced requests, what can we expect? Well, possibly a call out from the committee to hear from experts around advance requests and as a stakeholder in the process, we will be sure to submit names to the committee that have people that they are going to want to hear from, when it comes to advanced requests for MAiD.
There will be an opportunity, I think, for people to prepare and submit their own thoughts, individuals who have thoughts about advanced requests, and I know that there’s a lot of people out there watching right now who have family members going through a diagnosis of dementia. And to be honest, even fearful for themselves, if it runs in the family, they have a very strong opinion about advanced requests, and that’s something that the committee may want to hear from.
And so we can expect a lot of discussion around that and you can expect Dying With Dignity Canada to continue its message that advance requests should be law. Over 80% of Canadians believe that they should be allowed. And even the government’s own consultations showed that 80% of Canadians want advance requests. So I hope I answered that question around the parliamentary review.
Yes, you did. Thank you. And so more to come on that, we’ll see what happens with a parliamentary review and, of course, Dying With Dignity Canada will be following it closely and posting on social media and sending an email. So if you’re not on our email list, you can join and we’ll be providing updates. So thanks, Puneet.
Okay, Ellen, my next question was going to be about advance consent and the waiver and getting into it more, but I think you really highlighted it well for us a few questions back. So I do have an audience question that I want to tie in here. So someone wants to know, what about consent when someone has early dementia? So for example, they’re forgetful, but fully oriented. How does that [crosstalk].
How do we do it? Yes, very important. So the consent is the similar to how we do consent for other medical procedures. You do not need to know what day of the week it is, you don’t need to know who the prime minister is. What you need to know is that you have a medical condition that’s causing you suffering, that you have choices between an assisted death and a natural death, that you’re able to reason about those choices, and that you choose a medically assisted death.
So what… Sometimes you talk about early dementia. Early dementia, people know they’ve got Alzheimer’s, they know they don’t like Alzheimer’s, they know that… they often tell me stories like I had a neighbor who had it, my mother had it. And I saw this, and I don’t want to go there. And so they’re able to explain what, how they made their decision, like how their what their thinking processes are, even if they can’t remember the name, Alzheimer’s, they can remember that they’ve got something that’s interfering with their brain function and will get worse.
And so for example, I had one patient who had frontotemporal dementia. And I asked her what condition she had. And she said, because she couldn’t get the words out, and she couldn’t remember the name. And I said, is it frontotemporal dementia? And she said, yes, yes, yes, that’s the one. So we don’t need a really, really high level of cognition, we need those specific understandings, do they really understand that they have a serious condition that is getting worse that they want to end their life early, rather than wait for the disease to take its full process?.
Thank you. And just to clarify, we have a few more questions coming in Ellen, maybe you can just speak to this a little bit. Alzheimer’s aside, we’re getting some questions about the waiver of final consent. And that can that’s… Maybe you can just clarify for folks again because that’s not specific for those with an Alzheimer’s diagnosis, it can be used, but [crosstalk].
Oh no, and we are using it much more often for people like Audrey Parker. So we’re talking about people who have cancer, who they know they’re at serious risk for a stroke, for sepsis, or overwhelming infection, things that would take their cognition away, their ability to make it have to give us consent for MAiD. And even people who are in severe pain, who really need more medication, but medication makes them sleepy and difficult to communicate. And so these are the people that we’re using the waivers for.
I have signed quite a few MAiD waivers. I don’t know the exact number, but I’ve only used one once. And this was a man who had liver disease. And he said his date, he knew he wasn’t going to go right to the end of this disease. But he was a bit weak and he was a bit nauseated and so on as people are with liver disease. And the day before his date, he was found unconscious on the floor. And so he was brought to hospital, his support team knew all about the waiver, and we went ahead and provided at that point because he could have lived for quite a while and that we knew that’s not what he wanted.
So that’s the times that we’re using waivers of final consent. And the stories I’ve heard from my colleagues, that’s when we’re using waivers. It’s when people lose consciousness or lose their ability to communicate due to the drugs they have to take to manage symptoms. And so it’s wonderful because it means that in the past, we had people who would say, would refuse their pain meds because they were so afraid of losing capacity. And so they would go through too much pain. But now, it’s not an issue, you take whatever you need because we’ve got a waiver signed. And so, but in fact, I haven’t had to use in those particular people in the last six months, but it gave them such peace. So those waivers have been absolutely wonderful, but less useful for dementia than for cancer and other conditions.
Right. And we are getting a couple questions that are, there’s a little confusion around the waiver and an advance request. So I don’t know if you want to speak to that a little Puneet, feel free to jump in on that one as well. They are different things. So maybe Ellen, you can start and Puneet, if you have anything to add.
So the waiver is an agreement between the provider and the patient. It says that I will provide MAiD on a particular date for you. And that if you lose capacity before that date, then I can provide before and that’s it. So you have to be assessed and approved for MAiD before we do it, and by two clinicians. So we can’t do it, like an advance request when you’re still healthy.[crosstalk 00:22:06]
Sorry, Puneet. Go ahead.
And I would just add that the criteria, as I understand them, is that the waiver is for those whose death has been assessed as being reasonably foreseeable. So that would be something that would divide people into whether or not they can use that, take advantage of the waiver or not. The criteria does say that the waiver is for people whose death is reasonably foreseeable.
Thank you both. Okay, so I was mixing in a few audience questions there. But let’s finish off Puneet. One last question for you and then I’m going to see if we have a couple more minutes for some audience questions. But can you speak to the election results? And what this means for MAiD in Canada moving forward?
So the election is now over, we have essentially the same government as we had prior to parliament being dissolved to elect a new government. And so what does that mean for MAiD legislation in Canada? Well, as a non-partisan organization, we’re looking forward to working with all the parties. But the one thing that I think we can agree on that would make us optimistic is that Bill C-7 was passed by essentially the same liberal minority government. And for that reason, I think there’s reason to be optimistic that they see the value in re-initiating the parliamentary review as soon as possible and getting that joint committee named as soon as possible. And that’s our message to the government. But I think it’s essentially the same group of people that are returning to Ottawa, so I don’t see too much opposition to getting that review, get back on track. In terms of timing, it may not be as quick as we wanted, but our message is it has to be as quick as possible.
Thanks, Puneet. Okay, we have a couple minutes now before we get into toolpath of the webinar here. So I do have a couple questions in the chat that I want to ask. We have a question. Ellen, I’m going to direct this one at you, and Puneet this is one where you can feel free to chime in as well because I think it kind of hits both of you here. So how do we balance clinicians work load, mental health burnout, with the public’s desire for advance requests, as they are likely… Few clinics who will be willing to provide for confused and perhaps resistant dementia patients for very long, if ever? So, Ellen I’ll let you start.
Yes. And I’m one of them. I have, as I said at the beginning provided for lots of people, and believe this is one of the most rewarding best part of my work in the last 45 years. But the idea of providing it for somebody who can’t tell me, or didn’t tell me in every release recently, that this is what they wanted. It doesn’t sit well with me. I cannot imagine performing what seems like euthanasia for an animal. It just doesn’t make sense. But I’m moving, I’m changing. I had no difficulty with the one patient that I had, who was in hepatic encephalopathy at the end. But this was only one day early. So it was easy.
And we know this, we’ve done a study that is to be published shortly, asking providers in what situations would they be willing to provide. And the there were providers who said, more than me, who said that they would provide in a situation where all they had was the advance request. And if it was legal, of course. And so there will be some, but there will be a lot less. And I can tell you that we’re already in a similar situation right now with the track 2 patients, so people whose natural death are not reasonably foreseeable. I’m meeting this week with providers. One of them who runs one of the MAiD centers, said that he had 30 hospital providers and 60 community providers in his area, and five of them, five, were willing to provide for people whose natural death was not reasonably foreseeable. So we’re already in to this problem, and it will exacerbate when if we get advance requests.
Wow, Puneet, anything to add on that? Not to put you on the spot.
No, I don’t have anything to add. Ellen as a physician for so long understands the clinical context and the relationship aspect with their patients. So I would defer to a physician who has more experience with that stuff.
Okay, thank you. I’m going to ask one last question. Here, everyone, thank you for submitting all your questions. I’m seeing them. We’re a little short for time. But if you want to email firstname.lastname@example.org, we can follow up with you individually, even if it’s a general question, I’m happy to forward them on to whoever they need to be sent to, to get you some answers. So again, it’s email@example.com. Maybe Samantha can throw that in the chat for us for anyone who needs to follow up with us directly.
So last question, and then we’re going to move on. Where is it? Let me find it. It’s for Ellen, and I think we’ve slightly touched on this, but let’s clarify because this is a common one we get. Can someone qualify for MAiD at an initial diagnosis of dementia, even if it’s only mild and there are no other comorbidities?
Yes. All of the dementias that I mentioned, vascular, or maybe I didn’t. Alzheimer’s, vascular dementia, frontotemporal dementia, Huntington’s, Lewy body dementia, Creutzfeldt–Jakob, they’re all fatal conditions. So they can all be considered that your natural death is reasonably foreseeable and predictable based on the diagnosis.
And when we call somebody mild in terms of Alzheimer’s, they’ve already lost a lot of function. So when we are doing our assessment, in addition to natural death being reasonably foreseeable in that sense, we have to have them qualify under advanced state of decline in capability. And so quite often the Alzheimer specialists would call somebody mild.
But the patient would tell me, I can’t manage work anymore because I can’t multitask, and I can’t keep track of things. And I have lists and lists and, I still can’t manage. I can’t do my banking anymore, I’ve given it to my daughter because I’m making mistakes. And she’ll go through this and she’ll say, I have to have a couple of conversations, I can’t keep a conversation going properly. People talk around me and I used to be involved, but I’m not anymore because I can’t manage.
So this person would tell me that she was advanced. And I would agree because from where she was to start with to now it’s advanced. An Alzheimer’s specialists would say, Oh, that’s mild because she can still walk and talk and eat and she can use the toilet and all of those things, making her mild. Well, that’s not what she said. And I agree with her.
That really clarifies things. And that’s a question that we get a lot. So it’s great to hear directly from you because you are doing the hands on work. So at this point, I just want to really thank both of you Puneet and Ellen for answering all of our questions and to the audience for submitting all of your questions. And again, we will follow up with you individually. But now we are going to shift gears a little bit. And we are going to talk to Jule. So Jule, thank you for coming and being here today. I’ll give you the floor for a quick second, while I get your slides ready here.
Thank you, Nicole. I just want to say how grateful I am to have the opportunity to be a presenter. And also, I want to say a big thank you to Dying With Dignity Canada for all the webinars that they’ve put out in the last in the last several months. I’m thinking particularly of the one of the grief series, I found it really, really valuable.
And before I answer any of your questions, there’s something that I would like to share with everyone. It’s, I would like to read a verse from an anthology from the World’s Sacred Poetry and Prose. And this is a Native American tradition. It’s called Great Life Giving Spirit. And this is just the first verse and for me, it’s been really helpful. Great spirit of love, come to me with the power of the North. Make me courageous, when the cold winds of life fall upon me, give me strength and endurance for everything that is harsh, everything that hurts, everything that makes me squint, make me move through life, ready to take what comes from the North.
That’s so beautiful. Thank you for sharing that. I really appreciate it. And again, thank you for being here. So we have some questions for you. So let’s get started. Can you tell us about what your husband Wayne and when he received his diagnosis? How the conversation around MAiD began.
Yes. Wayne received his official diagnosis of Alzheimer’s back in January 19th, actually 2018. And it wasn’t surprising to hear him say, “I’d like to look at the possibility of MAiD,” because over the course of our relationship, which now is 52 years, when there was a friend who or a relative who had a terminal diagnosis, we would have conversations about quality of life, and as opposed to quantity of life. And we always seemed to come on the side of it’s the quality of life that really counts. So I hope that answers the question that you’re asking.
It’s even great just to highlight that you had those conversations together. And that’s so important. And that’s why we do a lot of work around advance care planning because those conversations are really important. So thank you for sharing that. Can you tell us now what MAiD means to you and what it means to Wayne?
Well, for me, MAiD means the opportunity of having a choice, a choice for end of life care, so to speak. And I think everybody should have that choice, and I’m looking more at the idea of dying a death with dignity. And this is what, for me is really, really important and a sense of control. I would say that my husband would quite possibly agree with me. And I don’t want to put words in his mouth. But he would take it one step further and say, the thought that he knew that he had the option for MAiD and made a big difference in the fact that he felt he had a sense of control. And that was so important and that eliminated so much stress that he was under.
Absolutely. So let’s shift gears for a sec here. So your book that you wrote the Hot Chocolate And Decadent Cake Society: Alzheimer’s And A Choice For MAiD is a memoir in poetry and prose that offers snapshots of your first year following your husband’s Alzheimer’s diagnosis. It strongly advocates his right to choose MAiD when quality of life as he defines it becomes painfully compromised. So how would you feel about sharing excerpts from your book with us now, and I will pull up a photo of it.
Okay, thank you. No, I appreciate the opportunity. I’d like to preface this by saying that there is a healing power in being able to tell our stories. And for me, this memoir has opened up a pathway towards my own personal healing. And that’s going to be continuing this journey of healing.
The format of the book itself is a piece of prose on the top part of the page, and it’s complemented with a three line poem. And this three line poem tries to capture the essence of what was expressed in the prose. And I would read a little bit from that now.
January 2018, and appointments at the Brain Health Center in Vancouver confirms our suspicions. The hope that brain research pursued with this center might create a way to move forward rapidly dissolves. Although anticipated, Alzheimer’s diagnosis, still so surreal. Come back in a year, a referral will be sent to a geriatric psychiatrist to discuss the possibility of medication. We strongly advise that you ensure your affairs are in order while you are still able to do so. Well thank you for your advice. Medication, however, is not an option we choose to consider. Cast off and adrift, Alzheimer’s solution, a lifeline of hope and Alzheimer’s solution refers to the book Alzheimer’s Solution by Dean and Ayesha Sherzai, we found it very helpful.
When my husband shares his dementia diagnosis, we hear, “How can I help?” Or, “Call me when you need something.” Responses are usually prefaced by, “Oh, so very sorry to hear about that.” These are heartfelt and appreciated. They’re also those who for reasons of their own distance themselves. Compassion in friends, touches the soul.
March 2018, the Alzheimer’s Society series, shaping the journey of dementia does not meet our needs. My husband introduces himself saying, “I have been recently diagnosed with Alzheimer’s. When my quality of life deteriorates, and before I am no longer be capable of giving informed consent, I want the choice of MAiD.” An uncomfortable silence, hanging response, not a choice for dementia, courageously lobbied pioneers in a league of their own right of choice, Bill C-14.
The message from our family physician, lawyer and Alzheimer Society suggests that dementia does not fit the criteria for MAiD. The tourniquet of unbearable stress resulting from hearing this message tightens. Despair and depression, soulmates can see when hope seems lost. April 2018 a community forum on MAiD held in Parksville, the evening of April the 19th provided information on the legal, medical and spiritual aspects of MAiD. Dr. David Robinson, MAiD lead for Vancouver Island Health, spoke on the medical perspective. His presentation would unknowingly offer a pathway to hope, relevant information of a beacon of light, providing direction.
A call to Dr. Robinson’s office put us in contact with Roseanne Beuthin, MAiD intake nurse guide coordinator for Vancouver Island health. Roseanne compassionately report informs us that those with dementia may meet the criteria for MAiD as long as they are deemed competent of giving informed consent. She then asks, “Do you need a contact number for a doctor on our main team?” Thank you so very much. We already have the name of a doctor who we would like to contact. Stress talons released, hope regained, a sense of hope reignited a sense of control regained.
May 2018 to October 2018. We have a compassionate phone conversation with a doctor whose office we contacted. A consultation appointment is booked to discuss my husband’s decision to explore MAiD and the angel of compassion, how welcoming, comforting and reassuring.
The consultation of is the first of many appointments scheduled at four-month intervals with both our doctor and a geriatric psychiatrist. He continues to assess my husband’s mental capacity to give informed consent in order to advise when a window of doing so appears to be narrowing. A member of his outreach team also comes to make home visits to help. Disease progression narrowing the window of consent creates [inaudible].
Our support team is a blessing and a gift. How comforting to feel cared for and know we are not alone on our journey. Concerns and questions are always addressed. Feeling compassionately listened to is so affirming. Time patiently allotted for reassurance, the gift of compassion. The choice of MAiD is an option given my husband a renewed sense of control over his life. The overwhelming burden of stress slowly lifts, embracing life, revisiting memories, and the freedom to plan his vital day, enhance my husband’s right to do it his way.
Dissipated stress channels energy into present moment living. Emotional and spiritual support is needed by those who’ve chosen MAiD. And by those who through this choice will lose, or have lost a loved one. Such support might be addressed through the Hot Chocolate and Decadent Cake Society. Imagine a nurturing environment where tears, laughter, hugs, hot chocolate, and even decadent cake are all part of the healing. Imagine too this idea of spreading with the Hot Chocolate and Decadent Cake Society springing up all over Vancouver Island, and perhaps beyond. “Alone, we could do so little, together we can do so much,” Helen Keller.
The slide that you see there was an opportunity given to me to highlight, or just to showcase this little book, for that I am so very grateful. And it also offered the opportunity to have conversations with like-minded people.
Thanks, Jule. Thanks for sharing that excerpt from your book. It’s so nice to get just a taste of what your experience has been like with Wayne, and we really appreciate you sharing that with us today. So you mentioned your compassionate support program. So we know that you have that. And you facilitate that. So can you share an overview of this program and tell us what inspired you to create it?
Yes, I’d love to do that. The Compassionate support program that I worked at has four components and each one is two-hour sessions. And it’s offered basically for eight participants. Nice to keep it small. So there’s that feeling of comfort, of trust, and the ability to reach out and share. And so it consists of sharing and small group sharing, personal reflection, and also relevant activities that nurture compassionate support.
Societies like the Alzheimer Society of B.C. offer a lot of excellent resources and educational programs. But sadly, the urgent need for a compassionate support program offered through the Alzheimer Society of B.C. for those who have chosen MAiD, or are considering this choice, and for their nurturing companions, unfortunately still needs to be addressed.
My program is an attempt to bridge this gap. And those of you in the audience who are interested in building upon it, I’d love you to keep getting in touch with me. It’s not mine, it’s there to share, we need to make it better and make it available, It’s so important. And I would also like to bring your attention to Bridge4you founded by Signy Novak. And I just became aware of it through a friend. Bridge4you is a peer driven non-profit society that offers support to people going through a medically assisted death with a loved one. It’s a sister organization to Bridge C-14. And I think it parallels in some way, in trying to address the gap that I’ve been talking about.
Okay, we can go through the program. So again, this is an overview, celebrating the positives in each day. Every day may not be good, but there is something good in every day. And I’ve chosen to read them for those of you that maybe can’t see the slides as clearly. Personal perspectives overview, It’s the healing power of telling one’s story, and a story is a promise of a conversation. Alzheimer’s impacts us emotionally, physically, mentally, spiritually, intellectually, and it impacts our life’s interests. We also have categories of grief, and giving ourselves permission to mourn. Again, perspective personal perspectives.
We have nurturing, how do we nurture our physical, emotional, social, mental, intellectual, spiritual, and life interests. And we look at enhancing our brain health, we know how important that is, and how much has been available for us to do research or not research but to read. And then we can take a look at defining quality of life, because quality of life is individual for everyone. And what might compromise the quality of life? And how dementia might influence choice for me.
And I’d like to say that again, this is a choice, it’s a personal choice. And maybe something that just is a friend of mine, I think many of you know and heard of Ron Posno would say, “it’s for the doers and the users.” Okay, and sometimes everything else gets clouded. And then we can look at the societal perspectives. And one of those again, what are the support systems, and I just use the Hot Chocolate And Decadent Cake Society. You might be curious as to how I got that number, excuse me, that, that title? Well, if any of you have heard, or watched the Guernsey Literary Society and Potato Peel Pie, all of a sudden, I’m thinking of trying to get a title for this book. And that came to mind. My husband loves hot chocolate, and he loves decadent cake, actually lemon cake. And it just seemed wow, that’s light hearted. Let’s use that. And many people think it’s a cookbook, okay?
So again, with societal perspectives, lots on current brain research. Alzheimer Society of Canada has gotten an awful lot that with that, the brain exchange so much there. And then Bill C-7 Dementia & Access to MAiD, programs like you’re doing webinars to create greater awareness. And then advocacy means of advocating for advanced requests. And the idea of highlighting informational websites, okay, are all part of this, this program.
And this is just the two-day workshop seminar that my husband and I wanted to do. It ran over, it was four sessions, and it was four workshops done over two days. And it was I guess we could say that COVID got in the way, all right, and so it’s still on the back burner. And something that I did learn is that you need to have means of advertising. And if you had Alzheimer Society B.C. on board, that they could at least in their first link say that there’s a program available, they don’t have to support it, but to say there is something available if you wanted to look at it, and investigate because, again, by yourself, as Helen Keller said, “You need everybody working at this.”
And then, as Helen Keller would say, “The only way to the other side is through.” And what I’m hoping for is that, again, there’ll be some of you that might be interested in and help to work and make this better. What have I missed?
Thanks Jule, that was great. It’s great to get an overview. I know you’re just scratching the surface today and letting folks know what your program is all about. So folks can reach out to you if they have more questions, they can contact us at firstname.lastname@example.org and we are happy to pass any questions about the program or the book along to Jule. Jule, can you just highlight where folks can find your book, if they want to read it?
Well, the only way you can get it is through me because I just take orders, and then I go to Printorium in Victoria, and then I get copies printed. And one of the things that I did at the beginning is that the book itself was $15 and $5 of that was going to support Dying With Dignity Canada, and that can still happen. So it’s… And it’s such a small little book, it’s a great conversation piece. You can carry it in your… Well, maybe not your back bag or something and who knows when you want to start a conversation over coffee or hot chocolate with someone?
Oh, that’s wonderful. Thank you. Okay, so we talked about your program and your book, and writing your memoir, and creating this compassionate support program you’ve just shared has helped you to begin the process that is opening the door to healing. And the song that you recently wrote and recorded called, Finally I Named You, is also a part of your healing journey. So would you like to introduce that to us now? I will get that set up while you give a little background on that.
Yes, on the song, I Finally I Named You, is another as Nicole said, is another way of healing for me. I often write songs for my workshops because they’re more personal. And the nice thing is you can’t be compared with anybody else. Right? You write your tune, you say it, and there it is. But this song refers to dementia as being the mammoth in my mind, alright. And coming to terms with this mammoth because we always talk about the elephant in the room. Well, that elephant’s bigger than… I think, the mammoth is perhaps… I like the symbol of the mammoth. Okay.
Folks will see that so. Thank you, Jule. Thanks for being here. And I just want to thank everyone who came out today to watch and ask questions, and to Dr. Ellen Wiebe, and Puneet, thank you for coming and answering our questions. And we will now close out with Jule’s song called, Finally I Named You.
Finally I Named You, is a song about Alzheimer’s and how it once was the mammoth in my mind.
Beautiful. Thank you everyone. Thank you Jule. Have a great afternoon. Bye-bye.
- Advance requests for MAiD in dementia: Policy recommendations emerging from a mixed-methods study of the views of the Canadian public and MAiD practitioners
- Bridge 4 U
- Bridge C14
Contact Jule about the Compassionate Support Program or order her book at: email@example.com.