Latest / Your Estate Matters / Episode 45 - The Role of Dying With Dignity Canada in End-of-Life Advocacy with Alex Muir

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Episode 45 - The Role of Dying With Dignity Canada in End-of-Life Advocacy with Alex Muir · Your Estate Matters

• 0:02
  [SPEAKER_01]: Hello, and welcome to your estate matters with your hosts, my colleague Greg Bernand, and myself Nicole Garton of Heritage Trust.
• 0:09
  [SPEAKER_02]: Your estate matters is a podcast dedicated to everything a state, including building and preserving your legacy.
• 0:16
  [SPEAKER_01]: If it's a state related, we'll be talking about it.
• 0:19
  [SPEAKER_01]: We're having the conversations today that will help Canadians protect their families, their assets, and their legacies tomorrow.
• 0:34
  [SPEAKER_02]: With us today on your estate matters, is Alex Muir, chair of the Metra Vancouver chapter of Dying with Dignity Canada, a national charity dedicated to advancing end-of-life rights and education across Canada.
• 0:46
  [SPEAKER_02]: This leadership role-allics coordinates community O reaches, organizes educational events and advocates for improved access to medically assisted in dying, made, and advanced care planning throughout the region.
• 0:57
  [SPEAKER_02]: Prior to becoming a local chapter chair, he oversawed the chapter's independent witnessing program, which helped some individuals initiating their made request.
• 1:06
  [SPEAKER_02]: Prior to his involvement with Dying with dignity Canada, Alex retired from a thirty-four-year career, working in the oil and gas industry in various capacities.
• 1:15
  [SPEAKER_02]: Today we'll chat with him about his interest in end-of-life rights.
• 1:24
  [SPEAKER_02]: Alex, thank you for being here with us today to talk about dying with dignity Canada.
• 1:28
  [SPEAKER_02]: Can you tell us a little bit about yourself and how you became involved with dying with dignity Canada?
• 1:33
  [SPEAKER_00]: Sure, thank you for having me by the way.
• 1:35
  [SPEAKER_00]: My sister was on the board of dying with dignity Canada way back in the early nineteen nineties long before me was available to Canadians.
• 1:44
  [SPEAKER_00]: So I was familiar with with the fight for end of life rights and that that point I started donating to dang with dignity got on their mailing list and so I kept current on the issues as the argument was building.
• 1:57
  [SPEAKER_00]: And then what happened in the early two thousands I was close to two pretty gruesome deaths.
• 2:02
  [SPEAKER_00]: I had a cousin who died of ALS and my dad and two thousand eight died but
• 2:07
  [SPEAKER_00]: It took about eighteen months, he had CLPD, and then he had macular degeneration, which was in his diagnosed knee.
• 2:15
  [SPEAKER_00]: He lost his site basically, and then he had hearing issues, and that led to losing mental capacity.
• 2:22
  [SPEAKER_00]: So it was a long, drawn-out horrible demise.
• 2:26
  [SPEAKER_00]: And I thought to myself, you know, there must be a better way.
• 2:29
  [SPEAKER_00]: And that was when I decided when I retired in twenty seventeen, that I would get more actively involved at the time of dignity.
• 2:36
  [SPEAKER_02]: And what is your current role of dying with dignity and what drew you?
• 2:40
  [SPEAKER_02]: I think you've already explained your personal experience with the work.
• 2:43
  [SPEAKER_02]: Was there anything else that drew you towards it?
• 2:45
  [SPEAKER_00]: Well, it just happened that there was a women's fair at the roundhouse and I had a friend who was involved with an organization and I had mentioned that I wanted to get involved with dying with dignity and she said, well, I know the person who's the chair of the local chapter
• 3:00
  [SPEAKER_00]: So I started actually as an independent witness and that's going in and witnessing people who are applying for it.
• 3:06
  [SPEAKER_00]: And that's how I got involved.
• 3:07
  [SPEAKER_00]: And then I very quickly became the witness coordinator for the Metro Vancouver area.
• 3:12
  [SPEAKER_00]: And then a couple of years later, I had became the chair of the Metro Vancouver chapter of Diamond Dingley.
• 3:18
  [SPEAKER_01]: So for listeners that aren't familiar, can you tell us about what dying with dignity Canada is and what services and supports it often?
• 3:26
  [SPEAKER_00]: Sure.
• 3:26
  [SPEAKER_00]: Diamond Infinity Canada is a national human rights charity committed to improving the quality of dying so people don't needlessly suffer.
• 3:36
  [SPEAKER_00]: That includes protecting end-of-life rights through our advocacy work and helping Canadians avoid suffering by referring them to appropriate healthcare resources.
• 3:46
  [SPEAKER_00]: We educate the public about legal end of
• 3:49
  [SPEAKER_00]: life choices, patient rights, and advanced care planning using webinars, public presentations, online resources, and media interviews as well.
• 3:59
  [SPEAKER_00]: We're also actively involved in advocacy work with politicians, focusing on changes to assisted dying legislation.
• 4:07
  [SPEAKER_00]: And we also support healthcare practitioners who assess for and improve and provide aid.
• 4:13
  [SPEAKER_01]: So what specific supports does it offer individuals and families that are navigating life to
• 4:19
  [SPEAKER_00]: We do presentations on advanced care planning, which includes guidance on choosing a substitute decision maker, which in British Columbia is called representative.
• 4:31
  [SPEAKER_00]: So when you become incapacitated, this person would make health care decisions on your behalf.
• 4:36
  [SPEAKER_00]: And we take people through that whole process.
• 4:38
  [SPEAKER_00]: And on our website, there is a kit that takes you through understanding your values and beliefs and then deciding who should be the person to make decisions on your behalf.
• 4:49
  [SPEAKER_00]: There's also a patient rights guide as well on our website that explains to people what rights they have in terms of choosing end-of-life options.
• 4:58
  [SPEAKER_00]: If it gets to that point, also when people are at the point where they're making end-of-life choices, our support team will direct them to appropriate resources in their province.
• 5:08
  [SPEAKER_00]: And we also help them navigate the made process in their province if that's the route that they're going to take.
• 5:14
  [SPEAKER_02]: The Alex, what is a medically assistance in dying in Canada?
• 5:19
  [SPEAKER_02]: So, made for short?
• 5:20
  [SPEAKER_00]: Yes.
• 5:20
  [SPEAKER_00]: Well, made is a planned death with the assistance of a trained healthcare professional, so either a doctor or a nurse practitioner.
• 5:29
  [SPEAKER_00]: In Canada, made can be either clinician assisted by injection or self-administered by oral medication.
• 5:36
  [SPEAKER_00]: Although the doctor or nurse practitioner must be in the room under either scenario, the use of oral medication
• 5:44
  [SPEAKER_00]: is very rare in Canada.
• 5:45
  [SPEAKER_00]: There are fewer than fifteen cases every year out of fifteen thousand.
• 5:49
  [SPEAKER_00]: So it's less than point one percent of all made cases are by oral medication.
• 5:54
  [SPEAKER_00]: So almost everyone chooses injection.
• 5:57
  [SPEAKER_02]: Well, how has the legal framework for made evolved over time?
• 6:01
  [SPEAKER_02]: And where does it stand in today's scenario?
• 6:03
  [SPEAKER_00]: OK, I don't know how much detail you want, but I'll just go back and quickly highlight the evolution of made in Canada.
• 6:10
  [SPEAKER_00]: Discussion about assisted dying goes back a long way, but really it became a public issue in nineteen ninety three with Sue Rodriguez who probably most people have heard of.
• 6:19
  [SPEAKER_00]: She was a forty two-year-old woman in Victoria who had ALS.
• 6:23
  [SPEAKER_00]: And with the help of the BC Civil Liberties Association, she applied to the courts for a doctor to help enter life.
• 6:30
  [SPEAKER_00]: And she asked the courts, if I cannot get consent to my own death, whose body is this?
• 6:36
  [SPEAKER_00]: Who owns my life?
• 6:38
  [SPEAKER_00]: And this case was escalated to the Supreme Court of Canada, where unfortunately she lost in a five to four decision.
• 6:45
  [SPEAKER_00]: By the way, she entered her life the following year.
• 6:48
  [SPEAKER_00]: She found there's a sympathetic doctor who did help enter life the following year.
• 6:52
  [SPEAKER_00]: But the case was really significant because what it did, it brought the issue of assisted dying out of the closet, out into the open, and people started talking about this.
• 7:01
  [SPEAKER_00]: Survey started asking people, what do you think about this?
• 7:04
  [SPEAKER_00]: And support for assisted dying back then was probably in the sixty to sixty five percent range.
• 7:09
  [SPEAKER_00]: It's now in the eighty to eighty five percent range, but it really was the start of serious discussion about about changing the legislation in Canada.
• 7:17
  [SPEAKER_00]: So what happened over the next fifteen to twenty years is that the interpretation of the Canadian charter of rights and freedoms started to change and judges started looking at elements of it to address what they call liberty and security of the person and they said that also applies to end of life rights and so we need to allow people autonomy at end of life.
• 7:39
  [SPEAKER_00]: So that was the backdrop in twenty eleven
• 7:42
  [SPEAKER_00]: When the BC civil liberties association went back to the courts with two BC women again, it was a Gloria Taylor who had ALS and K-Card who had spinal stenosis and they again went back to the courts with the same arguments basically.
• 7:58
  [SPEAKER_00]: that, you know, saying that that basically we're not allowing people the autonomy to make choices at end of life.
• 8:04
  [SPEAKER_00]: And I think the change in public opinion plus the interpretation of the charter rights and freedoms were significant.
• 8:12
  [SPEAKER_00]: And it went to the Supreme Court and the challenge passed in a nine to zero decision.
• 8:17
  [SPEAKER_00]: So basically, the courts said to the government, you have to amend the criminal code to allow doctors to help people in their life.
• 8:25
  [SPEAKER_00]: So what happened in that court decision is they established what are now known as the Carter criteria.
• 8:29
  [SPEAKER_00]: And I'll talk about those a bit later.
• 8:31
  [SPEAKER_00]: That became the foundation of Bill C. Fourteen, which was passed in June of twenty sixteen.
• 8:37
  [SPEAKER_00]: So that was at the beginning of May in Canada.
• 8:41
  [SPEAKER_00]: But that wasn't the end of it.
• 8:43
  [SPEAKER_00]: What happened with that legislation is that when Bill C. Fourteen passed, the Harlem actually added something to the legislation, which wasn't in the Carter Criteria.
• 8:52
  [SPEAKER_00]: They added a criterion called reasonably foreseeable deaths.
• 8:57
  [SPEAKER_00]: So what they're saying is this legislation will only apply if someone's natural death is reasonably foreseeable.
• 9:05
  [SPEAKER_00]: And there were a bunch of people who took exception to that, especially people with disabilities who said, you know, why can't I have this same right?
• 9:13
  [SPEAKER_00]: And so they were court challenges that popped up across the country.
• 9:17
  [SPEAKER_00]: The most significant one was the one in Quebec with Jean True Shaw who had cerebral palsy and Nicole Gladue who had post-polio syndrome.
• 9:25
  [SPEAKER_00]: And they argued that that limitation infringed their charter rights to liberty and security of the person and it was unconstitutional.
• 9:33
  [SPEAKER_00]: since it violated the constitution.
• 9:36
  [SPEAKER_00]: So I went to the court and called back.
• 9:38
  [SPEAKER_00]: And so in September of twenty nineteen, a Quebec judge agreed with them.
• 9:44
  [SPEAKER_00]: And they said, no, this law is discriminatory.
• 9:47
  [SPEAKER_00]: And they said to the government that you need to change this law to allow people whose death is not reasonably foreseeable.
• 9:53
  [SPEAKER_00]: The federal liberal government at the time didn't disagree with that.
• 9:57
  [SPEAKER_00]: And so they said, OK, we'll change the legislation.
• 10:00
  [SPEAKER_00]: And that's what they did.
• 10:01
  [SPEAKER_00]: So what happened over the next year or so they developed new legislation.
• 10:05
  [SPEAKER_00]: And in March of twenty twenty one bill, C seven was introduced.
• 10:10
  [SPEAKER_00]: So what we have now is legislation whether there are two different tracks.
• 10:14
  [SPEAKER_00]: So someone whose death is reasonably foreseeable follows track one.
• 10:18
  [SPEAKER_00]: So that's basically been in place since when he's sixteen, but now since when he's twenty twenty one, track two.
• 10:24
  [SPEAKER_00]: So if your death is not
• 10:28
  [SPEAKER_00]: The other change that happened with Bill C. Seven was that there was an exclusion that was put in a temporary exclusion to made access for those individuals with a mental disorder as a soul underlying medical condition.
• 10:45
  [SPEAKER_00]: temporarily that they set it to your sunset laws and they said, we will not allow access to people because we need to figure out how this is going to work for people with mental disorders.
• 10:52
  [SPEAKER_00]: And so that was in place as a march of twenty twenty one.
• 10:56
  [SPEAKER_00]: But that's sort of where I can talk about the stations to that, but that's kind of where we are right now.
• 11:00
  [SPEAKER_02]: So that's sort of the governing framework.
• 11:02
  [SPEAKER_02]: Who is eligible to access made?
• 11:05
  [SPEAKER_02]: And what are the main steps?
• 11:07
  [SPEAKER_02]: So if they're practically thinking about it, how does that occur?
• 11:10
  [SPEAKER_00]: The, as I mentioned, the Carter criteria in twenty fifteen kind of established main criteria and they were adopted by the government.
• 11:17
  [SPEAKER_00]: So basically what those criteria include is you have to be eligible for public health services in Canada.
• 11:23
  [SPEAKER_00]: You have to be at least eighteen years of age and capable of making healthcare decisions for yourself.
• 11:29
  [SPEAKER_00]: And on the medical side, these are the important criteria.
• 11:32
  [SPEAKER_00]: You have to have what's called a grievous and irremediable medical condition.
• 11:36
  [SPEAKER_00]: So what that means is grievous is you have to be experiencing unbearable physical or mental suffering.
• 11:43
  [SPEAKER_00]: that cannot be relieved under conditions that you consider acceptable.
• 11:49
  [SPEAKER_00]: So this is something that's kind of determined by the patient.
• 11:52
  [SPEAKER_00]: And then irremediable means you must have a serious illness disease or disability and be in an advanced state of decline that cannot be reversed.
• 12:00
  [SPEAKER_00]: And this is determined by two independent medical assessments.
• 12:04
  [SPEAKER_00]: Also, the request must be voluntary with no external pressure.
• 12:08
  [SPEAKER_00]: And that's something that is tested throughout the process to make sure the individual is not being coerced into into this.
• 12:14
  [SPEAKER_00]: And informed consent and counseling has to be provided.
• 12:17
  [SPEAKER_00]: So during this, the whole assessment period, the individual must be informed of the means that are available to relieve suffering, including palliative care.
• 12:27
  [SPEAKER_00]: So those are the basic criteria for applying for a medically assisted death.
• 12:31
  [SPEAKER_00]: As I mentioned, the major legislation is federal.
• 12:34
  [SPEAKER_00]: It's an exemption to the criminal code.
• 12:36
  [SPEAKER_00]: But because it falls under health care, the administration of it is provincial, and so that's why each province has its own forms and processes are fairly similar, but there are separate forms for each province.
• 12:49
  [SPEAKER_00]: And in British Columbia, each of the five regional health authorities and the First Nations health authority have a team that specifically handles made cases.
• 12:57
  [SPEAKER_00]: They are really good at helping people navigate the whole process.
• 13:02
  [SPEAKER_00]: Now, to answer your question about track one and track two, the application process is similar for track one and track two.
• 13:10
  [SPEAKER_00]: But what is distinctly different about it is that for track one, once someone is assessed and approved, then they can choose a date whenever they want.
• 13:20
  [SPEAKER_00]: They could even choose, you know, with the next day if they wanted to.
• 13:23
  [SPEAKER_00]: There's no waiting period.
• 13:25
  [SPEAKER_00]: Track two, though, because it is, as your death is not reasonably foreseeable,
• 13:30
  [SPEAKER_00]: There is a ninety-day assessment period.
• 13:33
  [SPEAKER_00]: And so one of the two assessors has to have expertise in the condition that the person's applying for it.
• 13:39
  [SPEAKER_00]: If they don't, they have to go and find it and make sure that they're talking to someone who really understands the condition that the person's applying for is under which they're applying.
• 13:49
  [SPEAKER_00]: And so that's why there's a non-ideawading period.
• 13:51
  [SPEAKER_00]: And also during that period, the individual has to be advised of all the means that could be available to relieve their suffering.
• 14:00
  [SPEAKER_00]: So they have to be provided with consultations, including counseling, mental health supports, disability supports, and community services and palliative care.
• 14:10
  [SPEAKER_00]: So all of these things have to be investigated.
• 14:13
  [SPEAKER_00]: And that's why there's that minimum ninety-day period.
• 14:16
  [SPEAKER_00]: So those are the kind of the significant differences between track one and track two.
• 14:20
  [SPEAKER_01]: And what's the status of people that have a mental illness?
• 14:24
  [SPEAKER_01]: Are they allowed?
• 14:26
  [SPEAKER_01]: Currently or no?
• 14:28
  [SPEAKER_00]: No, not right now.
• 14:29
  [SPEAKER_00]: So I mentioned before that there was initially a two-year sunset clause.
• 14:34
  [SPEAKER_00]: But what happened is got pushed back even more.
• 14:38
  [SPEAKER_00]: What came out of Dulce's seven was this parliamentary review process and so there were tons of consultation.
• 14:43
  [SPEAKER_00]: They had meetings.
• 14:44
  [SPEAKER_00]: I think they were, they received three hundred and fifty briefs and they met with about a hundred and eighty people who were both foreign against, you know, extending this to people with mental illness.
• 14:54
  [SPEAKER_00]: And as the two-year deadline approach, the government said, oh, we're not ready.
• 14:58
  [SPEAKER_00]: So they pushed it off for another year.
• 15:00
  [SPEAKER_00]: So it was supposed to be available in March of the twenty-three.
• 15:03
  [SPEAKER_00]: And so in February they said, no, we're not ready.
• 15:05
  [SPEAKER_00]: They pushed it off another year.
• 15:07
  [SPEAKER_00]: March, twenty twenty four, then there was more discussion more debate.
• 15:11
  [SPEAKER_00]: And so in February of twenty twenty four, it was pushed off again another three years.
• 15:16
  [SPEAKER_00]: So where it stands right now is that someone with a mental illness cannot access me if that's if that's their sole underlying medical condition.
• 15:25
  [SPEAKER_00]: They cannot access me until at least March of twenty twenty seven.
• 15:28
  [SPEAKER_01]: So we're in BC, so maybe we'll ask about our province.
• 15:32
  [SPEAKER_01]: So say there's an individual who has maybe ALS, a classic condition, I guess, if people think of who might choose this, what would they do to action this process?
• 15:45
  [SPEAKER_00]: Okay, so I think it's important that we draw the distinction between that sort of neurocognitive issues and mental illness.
• 15:52
  [SPEAKER_00]: So this exclusion that we talked about is really for psychiatric disorders.
• 15:58
  [SPEAKER_00]: So, you know, a man of depressive schizophrenia.
• 16:02
  [SPEAKER_00]: So the basic psychiatric conditions there, the ones that are
• 16:05
  [SPEAKER_00]: currently excluded from accessing need.
• 16:08
  [SPEAKER_00]: So neuro cognitive neurodegenerative diseases like ALS, though, do qualify.
• 16:12
  [SPEAKER_00]: So people with those illnesses are able to access need.
• 16:17
  [SPEAKER_00]: And so they can apply under track one and access me.
• 16:21
  [SPEAKER_01]: So what would they, if this was an individual, what would they do if they wanted to start that process?
• 16:27
  [SPEAKER_00]: The very first step is to fill out the application form.
• 16:31
  [SPEAKER_00]: There's a form on the website and it's fairly easy.
• 16:35
  [SPEAKER_00]: What I tell people is that if you just Google medical assistance in dying in BC,
• 16:41
  [SPEAKER_00]: The first link that comes up is the government website that has all the information on the process and all the forms.
• 16:47
  [SPEAKER_00]: And it actually, it's actually quite good, I think.
• 16:50
  [SPEAKER_00]: What the government website does, and if describes the whole process, it also has links to the regional health authorities, how to access to the mid-themed teams that are in each health authority.
• 17:03
  [SPEAKER_00]: And it's actually, it actually works fairly well.
• 17:05
  [SPEAKER_00]: So that's the first step is getting that form in.
• 17:08
  [SPEAKER_00]: And once the form is signed, which has to be witnessed, which is the service actually that time we didly provides if someone doesn't want to use, it has to be someone who won't benefit from the person's death.
• 17:17
  [SPEAKER_00]: So it generally excludes family members.
• 17:20
  [SPEAKER_00]: And some people don't want to use friends or someone else.
• 17:24
  [SPEAKER_00]: And so they can actually say to the health authority, when you do witness, then they come to us and we will provide a witness to witness the form.
• 17:31
  [SPEAKER_00]: So this form goes to the health authority.
• 17:33
  [SPEAKER_00]: And then the next step is setting up to independent medical assessments and they can help with that step.
• 17:39
  [SPEAKER_02]: I was curious if the form, so the form process starting is out with determines if you're in process one, or process two, like your pathway?
• 17:48
  [SPEAKER_00]: Yes, that would be part of it.
• 17:49
  [SPEAKER_00]: So basically, you have to put down, you have to write down what you're diagnosed like, why you think you qualify basically is as on the form.
• 17:57
  [SPEAKER_00]: And then it goes to the assessment.
• 17:59
  [SPEAKER_00]: I'm going to get to the assessment stage.
• 18:00
  [SPEAKER_00]: That's when the doctors will look at the situation.
• 18:03
  [SPEAKER_00]: And they will determine whether or not they think you would qualify under track one or track two.
• 18:08
  [SPEAKER_01]: So I understand that Canada is really an outlier in the world in that approximately fifteen thousand people a year that elect this that we have more people in any country in the world in a higher percentage of people.
• 18:25
  [SPEAKER_01]: So I think
• 18:26
  [SPEAKER_01]: That might raise eyebrows, why are we anomalous in that way?
• 18:32
  [SPEAKER_01]: And I guess related to that, how are we protecting against vulnerable people and people that might have moral or religious grounds against this?
• 18:43
  [SPEAKER_01]: They might say, what are the checks and balances or safeguards?
• 18:46
  [SPEAKER_01]: Can you talk to him about that?
• 18:47
  [SPEAKER_00]: Sure.
• 18:48
  [SPEAKER_00]: In terms of the numbers, we're fairly close to where the Netherlands is, that the argument is that we got in there a lot faster, because that will just have it for years and years, and our numbers are about the same.
• 18:58
  [SPEAKER_00]: Part of it quite honestly is education.
• 19:01
  [SPEAKER_00]: It started out fairly slowly in twenty sixteen and we saw about a thirty percent increase each year until twenty twenty two and twenty twenty two to twenty three was about a sixteen percent increase.
• 19:12
  [SPEAKER_00]: So we think that starting a lot of love.
• 19:15
  [SPEAKER_00]: But what happened, I think, as more people found out about made availability and also, you know, as more people get it, then you have more people talking about it.
• 19:25
  [SPEAKER_00]: And so I think that's why we've seen, you know,
• 19:30
  [SPEAKER_00]: I know that those who are opposed with, I think this is horrible, at least that these numbers are climbing, but the way we view it is, you know, we are allowing people to make a decision to end their suffering.
• 19:41
  [SPEAKER_00]: And so people are saying, and this is something, it's quite clear that the individual has to make these choices, right?
• 19:47
  [SPEAKER_00]: And so this gets to the safeguards.
• 19:51
  [SPEAKER_00]: In terms of safeguards, well, as I mentioned, the request has to come from the individual.
• 19:55
  [SPEAKER_00]: So no one can apply for me on your behalf.
• 19:58
  [SPEAKER_00]: So the individual has to make the decisions.
• 20:01
  [SPEAKER_00]: So that's kind of the first safeguard.
• 20:03
  [SPEAKER_00]: And I have to be signed by an independent witness.
• 20:06
  [SPEAKER_00]: And what is checked through the process is to make sure that there is no undue influence from anywhere else.
• 20:12
  [SPEAKER_00]: And there are two independent medical assessments.
• 20:15
  [SPEAKER_00]: And I talked about already about the additional safeguards for track two.
• 20:19
  [SPEAKER_00]: The fact that it's ninety days and you have to discuss all the different other treatment options that they may not have considered.
• 20:25
  [SPEAKER_00]: So there are quite a few safeguards in place.
• 20:29
  [SPEAKER_01]: So what about there's Ben's stories in the media that have caused controversy where
• 20:35
  [SPEAKER_01]: Some people, maybe they, you know, we've had difficulty having timely access to medical care, like for example, cancer care and maybe people have chosen made because they haven't had access to treatment or wasn't there a case where a veteran was suggested he might choose, maybe I don't know if that was accurate, but there was a, there was kind of a notorious case, can you talk about that?
• 21:00
  [SPEAKER_01]: I guess the concern is
• 21:02
  [SPEAKER_01]: What about if it's people that are choosing this because they have financial or medical needs that aren't being met?
• 21:09
  [SPEAKER_00]: You know, it is concerning as we know there are some issues with our healthcare system and people are not getting the supports that they should be getting.
• 21:20
  [SPEAKER_00]: And so this is something that we support along with everyone else that we need an improvement in supports for people who are suffering.
• 21:28
  [SPEAKER_00]: But I think we need to keep that separate from who should be able to access need.
• 21:33
  [SPEAKER_00]: No one is able to access need if they don't meet the medical criteria.
• 21:36
  [SPEAKER_00]: So we do have situations where they meet the criteria and they could be facing homelessness, right?
• 21:43
  [SPEAKER_00]: And that will add to their suffering.
• 21:45
  [SPEAKER_00]: And so you're right, it could actually affect their decision.
• 21:47
  [SPEAKER_00]: They will be able to choose need.
• 21:50
  [SPEAKER_00]: because they can't get access to the services that they need.
• 21:53
  [SPEAKER_00]: And that's really unfortunate.
• 21:54
  [SPEAKER_00]: But take that one step further and say, you know, therefore we're not going to allow people in those situations to access need.
• 22:01
  [SPEAKER_00]: How have we improved their situation?
• 22:03
  [SPEAKER_00]: They're just going to continue to suffer.
• 22:05
  [SPEAKER_00]: So the answer is to fix those supports and make sure people get all the supports that they need.
• 22:11
  [SPEAKER_00]: The answer isn't just to deny a whole group of people from being able to access made.
• 22:17
  [SPEAKER_00]: And you know, it's funny.
• 22:18
  [SPEAKER_00]: There's a court case going on right now, a bunch of disability groups in Ontario have challenged track to basically arguing that what we're doing is we're re-algrowing people and track to.
• 22:28
  [SPEAKER_00]: And we've done surveys and when you survey people with disabilities,
• 22:34
  [SPEAKER_00]: seventy eight percent want access to me they want the ability they want the same rates and if you remember it's going to be interesting to see where this case goes because as I mentioned you know the the true shot glad you case in Quebec those were people with disabilities would challenge the legislation which led to trap to so you know that's how the legislation evolved and now you've got
• 22:59
  [SPEAKER_00]: disability groups challenging it saying that we shouldn't have access to it.
• 23:04
  [SPEAKER_00]: So it'll be interesting to see where where that goes.
• 23:07
  [SPEAKER_01]: Well, there's certainly moral and ethical complexity in that, you know, in one hand, we want autonomy and right to self-determination.
• 23:16
  [SPEAKER_01]: And certainly we don't allow animals to suffer needlessly.
• 23:21
  [SPEAKER_01]: So why would we maybe not offer that suffering relief to human beings?
• 23:27
  [SPEAKER_01]: But on the other hand, you know, there is with disability groups and vulnerability, and I guess particularly mental health.
• 23:35
  [SPEAKER_01]: issues in socioeconomic concerns.
• 23:37
  [SPEAKER_01]: I think there's a concern like we judge a society by how we treat our most vulnerable and you know maybe it would be really terrible if our most vulnerable or poorest were disproportionately choosing me because their quality of life was so affected.
• 23:52
  [SPEAKER_01]: I don't know what do you think?
• 23:54
  [SPEAKER_02]: Yeah, well, it's definitely, it's early days.
• 23:58
  [SPEAKER_02]: And I think a lot has to be worked through.
• 24:00
  [SPEAKER_02]: And they have to establish that the people in the system are good players, basically, that there is nobody that's, you know, outside the family, undo influencing, but nobody in the system is undo influencing as well.
• 24:13
  [SPEAKER_02]: And I think, you know, it's hit and miss, I think, somewhat at this point, but that develops over time, likely, a better system.
• 24:21
  [SPEAKER_00]: I can tell you that, you know, the numbers show that people at lower social economic sphere are not disproportionately choosing me.
• 24:30
  [SPEAKER_00]: And in fact, what we find is your typical may, definitely, ninety-six percent of majorcipients are Caucasian to tend to be more educated.
• 24:40
  [SPEAKER_00]: And I think what it is is these are people who have watched onto this autonomy.
• 24:44
  [SPEAKER_00]: You know, these are people who have had a lot of control during their lives and they want to maintain this control at the end of life.
• 24:50
  [SPEAKER_00]: And so, so that's one of the reasons.
• 24:52
  [SPEAKER_00]: And I think the other reason, I think the number I saw for seniors in general, I think that Caucasians represent what's seventy two percent or something of seniors.
• 25:01
  [SPEAKER_00]: And what we have found as well is that there are some other cultures that are not as accepting of need.
• 25:08
  [SPEAKER_00]: And we have found that we don't, we go out and do education sessions and we've actually find it hard.
• 25:13
  [SPEAKER_00]: We've gone into, you know, we go into other communities trying to do presentations.
• 25:18
  [SPEAKER_00]: We find it hard sometimes to get audiences.
• 25:22
  [SPEAKER_00]: It's something that's just not accepted, right?
• 25:25
  [SPEAKER_00]: So I think that's why you see why the numbers are kind of skewed the other way.
• 25:30
  [SPEAKER_01]: So speaking of that, I referenced when we talked about booking this that the famous Nobel Prize winning writer Daniel and academic Daniel Conman was ninety and made an appointment in Switzerland.
• 25:47
  [SPEAKER_01]: and didn't have, I don't, I mean, I don't think we know all the details, but I'm not aware that he had a diagnosis, sorry.
• 25:55
  [SPEAKER_01]: What are your thoughts about that?
• 25:56
  [SPEAKER_01]: People just think, you know, I've had a good life, I've achieved a lot, I just want to, even, maybe I won't put you on the spot personally, but do you see Canada moving that way or no?
• 26:06
  [SPEAKER_00]: I, you know, I'm not sure.
• 26:09
  [SPEAKER_00]: But I think that would be a bit of a leap.
• 26:10
  [SPEAKER_00]: I mean, you can see the resistance already to where we are already, to go that far.
• 26:16
  [SPEAKER_00]: But by honestly, don't see it happening.
• 26:19
  [SPEAKER_00]: So where our focus is as an organization is to make sure Canadians are aware of what their rights are now.
• 26:28
  [SPEAKER_00]: And then we're pushing for, we do want to make sure that a broad base of people have the ability and are able to access me if they so choose.
• 26:36
  [SPEAKER_00]: I can't see us going further than that.
• 26:38
  [SPEAKER_00]: We're kind of looking at the legislation and what can we do through the legislative route.
• 26:43
  [SPEAKER_01]: So I'll say as an estate planner, so I don't see clients anymore, but I did for many, many years and have done many, many representation agreements.
• 26:55
  [SPEAKER_01]: When I was doing so in British Columbia, as you know, that is a document where you can appoint a substitute or actually a decision maker to make decisions on your behalf for your health care or personal care, and you can put in
• 27:08
  [SPEAKER_01]: health care wishes you could say I don't want to be kept alive but artificial means but you're not permitted to do mate because as you know you can't do mate by proxy you have to have the requisite capacity and jump through the hips but I would be asked once a week by somebody
• 27:24
  [SPEAKER_01]: to have a preemptive made clause.
• 27:27
  [SPEAKER_01]: And it was really interesting.
• 27:30
  [SPEAKER_01]: And the other thing I noticed was during COVID, my husband was my witness because clients couldn't come in and we put on masks and met people outside and signed up a lot of documents.
• 27:41
  [SPEAKER_01]: And, you know, our families in the Orthodox Christianity faith.
• 27:46
  [SPEAKER_01]: And he was
• 27:50
  [SPEAKER_01]: It's interesting.
• 27:50
  [SPEAKER_01]: I think people don't necessarily know how ubiquitous it might be because we signed up a number of people who had up coming made appointments and from his perspective from a religious viewpoint that that is God's decision and that it's in his perspective that's not a human.
• 28:11
  [SPEAKER_01]: That's not our right to make that choice in her.
• 28:14
  [SPEAKER_01]: It is interesting.
• 28:15
  [SPEAKER_01]: I don't know that people realize how prevalent this is.
• 28:19
  [SPEAKER_01]: I'd very agree you aware of how common it's increasingly become.
• 28:23
  [SPEAKER_02]: If you're starting to see it more, I know in my former position at another employer, I received a call on a Thursday afternoon from somebody told us they had to point it as
• 28:36
  [SPEAKER_02]: And they were committing as executor.
• 28:38
  [SPEAKER_02]: And we didn't have any copy of the documents.
• 28:40
  [SPEAKER_02]: And they said, well, they're doing it tomorrow at ten.
• 28:43
  [SPEAKER_02]: And it really, you know, was a bit odd to me that there was this sort of a runway or informing somebody of, you know, just before a weekend.
• 28:54
  [SPEAKER_02]: And I thought, oh, there must there should be a little more formality, you know, for the system to be able to adjust, but we're certainly seeing it more frequently, and we certainly have administered some of the states where it came quicker than we thought.
• 29:08
  [SPEAKER_00]: There was a change in the legislation under the initial legislation that was a ten-day waiting period.
• 29:13
  [SPEAKER_00]: So if someone was assessed and approved for me, they would have to wait ten days.
• 29:17
  [SPEAKER_00]: And the reason they changed it in the subsequent legislation, in twenty-one, was what they found was happening.
• 29:24
  [SPEAKER_00]: is that because people were waiting towards the end of their life to apply for a mentally assisted death, they were suffering quite a bit at that point.
• 29:32
  [SPEAKER_00]: And so then they get approved.
• 29:34
  [SPEAKER_00]: And then they go, okay, you're approved, but guess what?
• 29:36
  [SPEAKER_00]: You've got a suffered for ten more days now.
• 29:39
  [SPEAKER_00]: They thought this ten day waiting period wasn't really achieving anything other than forcing the person to suffer for ten more days.
• 29:45
  [SPEAKER_00]: And that's why they removed the ten day waiting period.
• 29:47
  [SPEAKER_02]: Okay, so Alex, one of the most common myths and misunderstandings you encounter about made and end of life rights.
• 29:56
  [SPEAKER_00]: One of the things that we encounter quite a bit in terms of when we read about our organization, we're not out there promoting me.
• 30:04
  [SPEAKER_00]: We are all about choice.
• 30:05
  [SPEAKER_00]: We know and respect the fact that it's not for everybody.
• 30:08
  [SPEAKER_00]: As you were talking about, some people have religious beliefs or they're ethically opposed to me, and that's fine.
• 30:15
  [SPEAKER_00]: If that's the route that they want to take,
• 30:18
  [SPEAKER_00]: However, it is legal option in Canada for those who meet the criteria.
• 30:22
  [SPEAKER_00]: And so it's important that no one, whether they're four or against me, should be forcing their views on other people.
• 30:30
  [SPEAKER_00]: So it's an option that people should know about that they have access to this if they qualify, but that you shouldn't be telling other people if they should or shouldn't take that route.
• 30:40
  [SPEAKER_00]: That's one thing.
• 30:41
  [SPEAKER_00]: The other thing about made to have to be clarify, there have been some pretty awful videos circulating about the May death itself.
• 30:50
  [SPEAKER_00]: It is a very peaceful death.
• 30:51
  [SPEAKER_00]: And then, despite some videos circulating, which were based on
• 30:57
  [SPEAKER_00]: these executions in the U.S.
• 30:58
  [SPEAKER_00]: which I'm nothing to do with what we do in Canada.
• 31:01
  [SPEAKER_00]: It actually is and there are several doctors who have written articles and I was supporting this thing.
• 31:07
  [SPEAKER_00]: It is a very peaceful death and I have been that one and I can tell you it is a very peaceful death.
• 31:13
  [SPEAKER_01]: So is there anything you wish Canadians understood about the work that dying with dignity Canada does that they don't generally know?
• 31:21
  [SPEAKER_00]: I think most people associate us with made and advocating for me.
• 31:26
  [SPEAKER_00]: And it's true that we've been actively involved in the advocacy work and we think it should be expanded so that it includes a lot of people.
• 31:35
  [SPEAKER_00]: But we do a lot more than that.
• 31:37
  [SPEAKER_00]: We do advanced care planning and we help support people and direct them to resources that they could use.
• 31:44
  [SPEAKER_00]: And I would just urge anyone who wants to learn more, but what would you just go to our website?
• 31:48
  [SPEAKER_00]: And then we have tons of online resources there as well, which I think people will find useful.
• 31:53
  [SPEAKER_00]: So that's it's down with dignity.ca.
• 31:55
  [SPEAKER_01]: So is there anything you'd like to share with our listeners today that we haven't touched on?
• 32:01
  [SPEAKER_00]: This is coming really back to the advanced care planning side.
• 32:04
  [SPEAKER_00]: I think it's important that people educate themselves, that's the what their rights are, so that they understand.
• 32:10
  [SPEAKER_00]: And also that they
• 32:13
  [SPEAKER_00]: don't leave their families in the lurch.
• 32:15
  [SPEAKER_00]: And by that, I mean, start the conversation with your families.
• 32:19
  [SPEAKER_00]: And if you're the one who's going to be an executor or whatever, or be a representative, start the conversation with your parents to understand what their wishes are because the reality is that the worst time to make these end-of-life decisions is at the moment.
• 32:33
  [SPEAKER_00]: You're in hospital, something drastic has happened.
• 32:36
  [SPEAKER_00]: And the doctors are saying, OK, what do we do now?
• 32:37
  [SPEAKER_00]: Do you want to do this for this?
• 32:39
  [SPEAKER_00]: and everyone's emotional and everyone's upset.
• 32:41
  [SPEAKER_00]: And if there's been no discussion about these scenarios, what could happen?
• 32:46
  [SPEAKER_00]: That it makes it very stressful for everyone.
• 32:49
  [SPEAKER_00]: So it's important to have these discussions upfront with your family and say, OK, this is what I would like under this situation.
• 32:56
  [SPEAKER_00]: This is what I would like.
• 32:56
  [SPEAKER_00]: And this is what advanced care planning is all about to get these conversations going, making sure you have a representative who understands what your values and beliefs are.
• 33:05
  [SPEAKER_00]: So they make the right decision for you.
• 33:07
  [SPEAKER_01]: It's great.
• 33:08
  [SPEAKER_01]: Well, thank you so much, Alex, who really appreciate the time you spent with us.
• 33:11
  [SPEAKER_00]: Thank you.
• 33:11
  [SPEAKER_00]: My pleasure.
• 33:12
  [SPEAKER_00]: Thank you.
• 33:13
  [SPEAKER_01]: This podcast is for informational purposes only and should not be considered individual legal, financial, or tax advice.
• 33:20
  [SPEAKER_01]: Make sure to consult the advisor of your choice to advise you on your own circumstances.
• 33:27
  [SPEAKER_01]: Thank you for joining us for this episode of Your State Matters.
• 33:31
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• 33:35
  [SPEAKER_02]: Whether you are planning your own estate or you're acting as executive for somebody else's heritage trust can help.
• 33:41
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• 33:46
  [SPEAKER_01]: If you'd like more information about heritage trust, please visit our website at heritagetrustcompany.ca.
• 33:59
  [SPEAKER_02]: This podcast is produced by Pond Father Creative.