When Options Evolve: The End of Life Care Conversations We're Not Having

Canada has expanded the legal options available at the end of life — but the conversations with patients and families haven't kept up.

In this episode, Kyla talks with Dr. Janine Brown, nurse researcher and PhD at the University of Saskatchewan, and Nabila Ashraf, public health researcher and Master's student in Aging Studies at the University of Regina. Together, they've been studying the social and political conditions that shape how Canadians navigate end-of-life decisions — from MAID to palliative care to the systemic gaps that make these conversations harder than they need to be.

We discuss  why good end-of-life care keeps hitting the same walls — and what it would take to change that.

If you work in healthcare, policy, or simply believe Canadians deserve better conversations about dying, this one is for you.

Resources

MAID Overview (Health Canada)

MAID Saskatchewan

Care Conversations with  Dr. Janine Brown

End of Life Conversations Research Paper

Advanced Care Planning Kit

Yellow Sleeve Program

End of Life Planning Guide and Checklist

Parliamentary Report on MAID and Mental Illness

Transcript

SPEAKER_01 0:14

Hi everyone, welcome to Shift. So dying isn't something we think about until we have to. Canada has one of the most advanced MAID frameworks in the world. In just a decade, we've gone from classifying assisted death as a crime to being considered part of proper medical care. The options have evolved faster than the conversations have. Conversations between patients and their families, providers and their patients, and between different players in the system, palliative care specialists, MAID assessors, community groups, deaf doolas, and as we'll hear in this episode, even lawyers and funeral home directors. There's a gap. A gap between what's legally possible and what's action talked about, planned for, and supported. And it's where today's guests have focused their research interests. Dr. Janine Brown is my former classmate, a nurse researcher, and associate professor with the University of Regina. Her work looks at how patients, families, healthcare providers, and health systems navigate made and complex end-of-life decisions in a context that keeps shifting. Nabila Ashraf is a public health researcher pursuing her master's in aging studies at the University of Regina with a focus on end-of-life care and aging. She was Dr. Brown's research assistant on the project. Together, they've been asking good questions to help us consider how the healthcare system can do better when it comes to end-of-life planning. Here's my conversation with Janine and Nabila. Hello, Nabila and Janine. Welcome to Shift. It's so good to have you here. Um, Janine, I've known you for 30 years. Probably about that, yes. Yes, when we were in nursing school together. But Nabila, this is my first time meeting you. So it's nice to meet you. Nice to meet you too. Thanks so much. Yeah, great. Okay, so this all started when I was at a conference in March and I ran into Janine and we hugged because we haven't seen each other in so long. And I was like, What are you doing now? And she said, Oh, I'm working uh at the University of Regina. I'm a researcher and I'm doing work in MAID, which is medical assistance and dying. And I was like, wow, that would be a great conversation to have on the podcast. And then um, she asked Nabila to join as a research assistant, and here we are today having this conversation. So, as always, I like to start to get to know my guests a little bit. So I'll hand it over, Nabila. Let's start with you and learn more about who you are and how you came to be here today doing this work.

SPEAKER_00 2:44

Thank you so much, Kyle. I actually heard so many things about you uh from Janine. So I'm really excited to join the podcast. Uh so just to give a brief about myself. I recently completed my graduation in aging studies. Um, and I have a long-standing research interest for chronic diseases, actually. And actually, while one of my courses was end-of-life care, and that actually kind of inspired me. What are the barriers or you know, facilitators of having end-of-life care decision making? I was really interested to know more. And then later I get the opportunity to meet Janine, a wonderful supervisor who has been working extensively in made research. And then I joined her uh in this project. And yes, the journey started. We started uh completing that project and disseminating the findings and also working on another project as well.

SPEAKER_02 3:36

And Janine, your career is a little bit longer than that. Yeah, my career is a little bit longer. So I, yeah, we went to school together and I started off up north in public health, and that led into where the majority of my career would be, I would say. I was up north in various different contexts and places, whether it be public health or home care or infectious diseases, um, have a long trajectory of fly-in, fly outs and day trips and week trips to different corners of the north and working with First Nations communities, which uh was such a wonderful way to really start off my career. Uh, really, really, really um had set me off on a foot of understanding uh vulnerabilities and social vulnerabilities and how we need to provide equity trauma-informed care. You know, I think that really gave me that lens in which to explore things. And then I also have worked in corrections for the correctional service of Canada with them at the First Nations uh Indigenous Women's Healing Lodge down by Maple Creek in the Cyper Cells, and worked in long-term care. And for three years, I worked as a death investigator or a coroner with the coroner services of Saskatchewan. So when I was interested in, am I gonna do a PhD? Am I not gonna do a PhD at that juncture? I was already working at the University of Regina and then was also uh working at long-term care. And we had an individual in long-term care that wanted information about MAID. And I'm like, oh, I don't, I don't know myself anything. And what year was this, Janine? What year would have been about 2018? Okay, so it's new a year and a half after legalization. And she wanted an assessment, and really none of the staff had a solid idea of well, who does the referral, where does it go, who do you phone, what do you do? So I, you know, we talked to the manager, and the manager made some phone calls, and someone kind of came in, um, never talked to any of the nursing staff, never made any notes in the chart and left. And and then we were the family came in. It's like, well, what happened with the assessment? We're like, we have no idea. You know, so really there was this disconnect between care and what the nurses and the care team was able to provide or answer or um give enlightenment to. So it really to me highlighted this, oh, okay, this is legal. A, I didn't really know the what that fully meant. And B, there's seemingly a disconnect here in care. So I thought, well, if ever I was going to do a PhD, now I'm kind of interested in this, right? Because I had this kind of bedside experience, plus the experience of being a coroner and a death investigator and working with uh families who had lost a loved one to suicide, right? And that's wicked individual that was living with a life-limiting illness. To, you know, I think I've shared with you before, my mom and my grandma were both nurses. I've come from a long line of caregivers. So I remember in grade six, my aunt having a home death where my my grandma and my mom attended to her and were giving the meds. So I kind of have this history of end-of-life care in different contexts, and really realized that there with the advent or the introduction of made as a new option, that was shifting what this whole landscape of end-of-life care might look like. And if ever there was something to research that I would be interested in and really do some, you know, because there was no evidence. There was no Canadian evidence. Like it went from a homicide to a legally available care option. So it was wide open in terms of let's develop some what does person family centered care look like in this context? What are the ethical concerns? What are the rubs? What are the engine points to care? How do we support all in the care team? So I just saw it as this really broad opportunity to influence patient family-centered care.

SPEAKER_01 7:33

Yes.

SPEAKER_02 7:33

Yeah.

SPEAKER_01 7:34

Okay. So I want to back up a little bit and just give a little bit of background to people who might be unfamiliar with MAID as a construct in our healthcare system now, in our in our country now. Um and I don't know either of you can answer whatever question, but just like a really brief, like we know it started, it was legalized in 2016, and then sort of what has happened over the course of the years to what it is now.

SPEAKER_02 8:01

Yeah, sure. So yes, the first made law underwent royal assent in 2015 with an implementation date of 2016. So that is the piece. And I think it's important for me to step back just a little bit further in time to fully understand how MAID came to be. Yes, it was a law, but what caught what what are the components of that made law? Because one thing I have learned in international contexts, how assisted dying has come to be in other countries is very different than how it came to be within Canada. So, for example, Scotland just recently tried to move forward an assisted dying bill, but it was it originated in the with with one of their politicians, right? One of their federal politicians wanted to move forward this bill for assisted dying. And it made it all the way up to the third reading and it was defeated. So now it's back to the bottom. In Canada, we actually have to go back to 1892 when the Criminal Code of Canada was introduced. Because when the Criminal Code of Canada was first introduced in 1892, both suicide and attempting to end one's life were both uh considered punishable offenses, indictable offenses. So that was illegal. It was not just not allowed, it was illegal to either attempt on one's life or to commit suicide. That was on the books until 1972, when it finally repealed the provision prohibiting suicide. Okay. So you it was no longer illegal for one to end their own life, but it still was illegal to get help in ending someone's life. And that stayed on the books until about 1992, 93. And the first kind of champion of, you know, this I want help in ending my life, was Sue Rodriguez. Now she had uh ALS or Lou Garrick's disease, and she wanted help in ending her life. And she challenged that the Criminal Code of Canada provision, which is called 241B, which is the provision against aiding someone in ending their life, she challenged that that was not constitutionally valid. So she actually had to challenge the criminal code of Canada. And it weaved through the different courts, it ended up at the Supreme Court of Canada, and in 1993, it was defeated. Okay, so she did not win her legal challenge. Okay. So she eventually went on to um end her life uh with an anonymous physician, and then that was kind of the the end of the conversation for a while, and that was in place until uh 2010. And in 2010, a lady by the name of Kay Carter from Vancouver, now she had spinal stenosis, chronic pain, and disability. She wanted the help of a physician or nurse practitioner to end her life, and again, knew that that was illegal in Canada. So she chose to go with her two daughters to Switzerland to end her life at uh the Dignitas Clinic, which is an assisted suicide clinic. And then after her death, her family came home and with the support of the BC Civil Liberties Association and some other interveners, they challenged again that 241B was in unconstitutional and that she should have had the right to have someone help her end her life here in Canada. And in that time, you know, it went through all the lower court system and it went through all the ending, the Supreme Court at that point decided you're right. And 241B was struck out of the criminal code. So when people talk about the made law, the made law is actually an amendment to our criminal code in Canada. And it wasn't done by politicians. So if people are upset about the made law or want to know how to reverse it, it would be a you need to get it put back into the criminal code of Canada. It's not just a healthcare practice that has been adopted, it has been a federal law change. And I think that's an interesting piece when we start talking about implementation and implementation science about what programs look like, because that was a federal law that changed. And of course, provinces and territories have responsible for healthcare delivery. So we don't have a uniform practice across Canada.

SPEAKER_01 12:13

That's really fascinating because a lot of big change like that usually comes from a social movement. And there was some of that in there, but it was really based on individuals challenging uh criminal systems.

SPEAKER_02 12:28

Criminal crown and constitutionality and constitutionality. So it wasn't the politicians that are deciding that made needed to be on the books. It's not the conservative government that decided this, or the NDP government that decided this, or the liberal government decided this. This was an individual and their family and/or their families that took legal action, right, and moved it through the system all the way to the Supreme Court of Canada to open that door to having the legal right to having someone end their life. Okay.

SPEAKER_01 13:02

So do you uh know what the response of the healthcare system was when this happened? Like were people sort of back on their heels and unprepared?

SPEAKER_02 13:14

I think so. I mean, I was working in long-term care at the time, right? So, I mean, you can imagine, right? You and I went to school and as did a lot of uh practitioners that are practicing today, where you know, do no harm, whether that's a a theoretical tenant or a construct or a paradigm, you know, that's been around in healthcare for a long time. So we went from like if you ended someone's life, you could be charged with homicide to you could end someone's life, and that is now a sanctioned end-of-life care practice. That is a mind flip. That that is a mind flip, to be fair. So in February of 2015, when they struck down 241B, they basically uh put in a um uh suspension of the ruling for 12 months and then extended it for another four months, hence why it didn't go into effect till 2016, because I think the judiciary system realized the healthcare system, the people are gonna need some time to wrap their head around this. Yeah. Like what are policies gonna look like? Practices, who's gonna do it? What's the training? Like you can just imagine the wellspring of questions that that would have brought up, right? You know, there was nothing. So this was something that really started from nothing and and had to be actualized fairly quickly because it was an option that a number of people wished to have relatively quickly after legalization, right? The other piece I just want to say about the law before we move into you know other stuff, the made law itself has the eligibility criteria and the safeguards embedded in it. So these are not health authority, these are not provincially decided eligibility and safeguards for something not to be homicide. You have to follow the eligibility criteria and the safeguards as outlined in the criminal code amendment. Okay. You step outside of those criteria and amendments, you fall back into the homicide category. Okay. So that's unique as well. So when someone says, Well, I don't understand why I need an independent witness on my forum, that that's just a barrier. That's what's in the federal law. Okay. So if we want to change that, we need to change the federal law again, right? So there's certain things that are, I don't want to say untouchable, like anything is can be revisited in the state of the law, but there are certain anchor points to made, and eligibility and safeguards are two of them that are embedded in the law itself. Okay.

SPEAKER_01 15:45

So then was there a national collaboration to set these standards, or did each of the provinces kind of go off and do their own thing?

SPEAKER_02 15:55

So initially, all the provinces and territories went off and did their own thing. Okay. So there were some, like the CNA, the Canadian Nurses Association, they put out a national framework for MAID. But of course, it was fairly broad. Then Saskatchewan Nurses Association, SRNA at the time, they put out a MAID framework, but so did the Alberta Nurses Association, because regulatory agencies are province and territory specific as well. So they each province and territory ended up flowing out their own physician statements, pharmacy statements, nursing statements. There was broad, you know, mother statements that it's a legally available care, it needs to be provided within the context of code of ethics, it needs to be provided within the context of the law. How that actually looks like please see your provincial and territorial association, you know, because there was a difference in each jurisdiction. I believe um it wasn't until two years ago that in Quebec, nurse practitioners were not allowed to be assessors and providers, even though the federal law said they were. The their provincial body put in a more restrictive piece than what the federal law was. So there is variability a lot in there. Well, then one more piece, just if I can, about the law. There's a criteria in the law that says death must be reasonably foreseeable. Okay. So that you had to be have temporal proximity or time closeness to your death to be eligible for me in 2021. The new made bill is bill C7, and that bill has the reasonably foreseeable piece removed. So but that opened the door to the language that we sometimes hear in statistics or media or social media about track one made and track two made. So track one made has eligibility and safeguards for people who do have time closeness to death. And track two made is for individual, it has the eligibility and safeguards for those who are not time close to death. So the safeguards look very different in those two tracks. And then once again, that's embedded in the law.

SPEAKER_01 18:03

Right. And now there's another court challenge that I saw recently about um Catholic hospitals not providing the service of MAID. And that's being challenged in the courts for accessibility to care. And that's coming out of BC, correct? That is coming out of BC.

SPEAKER_02 18:22

So that the nexus of that court case was from um a young uh lady who, I believe it was gynecological cancer of some sort, stage four gynecological cancer. And she was receiving care in a faith-based facility, and made provisions were not allowed in the facility where she was. So for her to have her maid uh carried out, she had to be moved from the facility where she was to a different facility. And in the course of that, um, she needed additional uh medications that rendered her unconscious and she never woke up after the transfer to the second facility. Right. So that that is going to be an interesting challenge because there is under the Canada Health Act accessibility, you know, concerns and access to care. So I think there's going to be some really um interesting pieces that will come out, whether or not uh in they call it institutional non-participation or institutional objection will be seen as an infringement to charter of rights, or or if it'll be upheld, you know. Like in the law itself, in both iterations of the law, it is very clear the the charter um respect for freedom of conscience and freedom of religion, nothing in the law precludes that. So there is that, but the argument is can an institution have a conscience, or was that conscientious objection clause for individuals? Oh my gosh, so interesting. Okay, and it's also one more interesting piece for your listeners and yourself, I think, is in that uh case in Lee C, so it was the family of the lady who ended up dying, but also one of the assessors and providers because she had privileges in that place, right, where maid was not allowed to be. So she said, Well, this is actually against my conscience that I can't practice a legally available care option in my place of employment, right? So, you know, we can't assume that um everyone that works in one building is going to think alike or believe the same thing, right? So because she didn't, even though she worked in a faith-based facility, her values didn't align with the faith-based facility. Her values aligned as herself, as her individual, as her practicing doctor. So she said, really, this is an infringement on my conscience rights. So it there's lots of layers to it, and I suspect there will be a appeal either way from either the plaintiff or the defense, depending on which way it goes, to really see where that ultimately will end up for Canadians. Wow.

SPEAKER_01 21:10

So there's this whole layer of politics and legal considerations that are happening that are really sort of playing with what happens in the delivery on the ground. Absolutely. What does that delivery? And you can just talk about Saskatchewan if it's easier to just pick one province, but what does the process look like if I was diagnosed with a terminal illness?

SPEAKER_02 21:38

So I will primarily speak about what I know about the Saskatchewan context because, like I said, it is very complex. So in Saskatchewan, we have a centralized made program. Okay. We have a program that's well constructed. So I'll park that here for now. Compare that to Ontario, where there is really no centralized program. There's little spokes and hubs here and there, but there is really no Care coordinators. It's kind of like you see your doctor, and maybe your doctor makes a referral to someone that he knows does it. And maybe this, it's it's very fragmented and very much a patient navigating their own way through it. So what I know is first of all, I am not employed by the Saskatchewan Health Authority and I am not part of their MAID program. I only speak as a researcher and what I know through listening to participants and through working with colleagues that do work with the MAID program, but I certainly don't speak for it. So I know in Saskatchewan, there is a centralized MAID program. So that program can be accessed. If someone Googles Saskatchewan MAID program, there will be a number that'll come up. Okay. Anyone can contact that phone number for information for hey, how about this? What about this? How do I do this? Anyone can do that. You do not need a physician or nurse practitioner referral to the MAID program to get into the MAID program. And from what I understand, that was by design, because again, doctors and nurses have the ability to step back based on freedom of religion and conscience, right? And for some, even providing a referral can be difficult. So that gatekeeper function of meeting a referral in has been removed. So patients can contact the program directly. Family members can contact the program for information, but not to request for someone else. Once you have an interest in MAID beyond just information, if you actually want a formal assessment, then you would proceed to getting a MAID assessment. And that would include visits from nurse practitioners or physicians. You need at least two to have an agreement that all the eligibility criteria in the law are met. And the assessment happens. And then if you are found eligible by two independent practitioners, then it is a matter of, well, what now what do you like? What do you envision, right? Is this something that you just want in as one of your end-of-life care options, right? Like you're still maybe undergoing cancer care, you're still maybe undergoing palliative care, and you just want this as one of your available options, which is totally allowed, right? Or are you actually, you know, where are you at in terms of do you want to schedule a date for a provision? Where are you at? And then we would work with that. I think one of the pieces that people need to know, and I do some work in training hospice volunteers. And one piece that really strikes people is even if you are an assessed and approved for MAID, you don't ever have to go forward with it. It is not uh, okay, you've done the process, you're in. No, no. And actually, some of the um Health Canada statistics, because they publish a MAID report every year, which is online publicly available for anyone who wants to look at it. A good number of people who are assessed and approved for MAID never ever go forward with it. Okay. For different reasons, right? Sometimes it's too cumbersome, sometimes it's, you know, I've realized people in my inner circle that I really value didn't agree with it. I found other means to relieve my suffering. I died before I needed it. You know, there's different reasons why, but there's a number of people that never ever proceed to MAID.

SPEAKER_01 25:20

Okay. Oh, that's interesting. I had I had no idea about this whole setup. So I'm sure lots of people will be interested to know these things and you know, might just take comfort in the fact that you have the option, but you don't have to never have to enact it. Yeah. Ever, ever, ever. Right?

SPEAKER_02 25:37

Yeah. And same thing. If you get assessed for mate and they say, you know what, you don't meet criteria today. But should your circumstances change and you still want to be formally assessed, you can come back. It's not a once and done, right? It is a um patient-driven process.

SPEAKER_01 25:55

So, as I said before we started recording, um, you know, it's one thing to have all these rules and regulations and laws and protocols. It's a whole other thing to actually embed the practice into a system that is oriented around saving people, preserving life and extending life, to then kind of put this into it. So I'm interested because I know you both are doing research in the experiences of patients and providers who go through this process. And I'm wondering what are the conditions that we need to create in the system to have this be a good experience for patients and providers? And I think you've recently released a paper, which I'll put in the show notes that that where you interviewed uh providers and patients with MS. And you, I think, got a lot of insights from that work. So maybe you could tell me about a little bit about what you're hearing and understanding about how this works in real life.

SPEAKER_00 27:01

Yeah, Nabila, you want to take that? Take it away? Yeah, sure. Sure. Thank you so much, uh Kaila. And before I share uh reflection of our uh like project, I just want to show my gratitude to the Saskatchewan Health Research Foundation for funding this work. And obviously, our patient partner Lorely, a very nice and great lady who has supported us throughout the project, uh, implementing and designation as well, and also the awesome team members like Dr. Thorpe, Dr. Knox, Dr. Levin, Dr. Puliakov, and obviously Janine as well. Um, so sharing the findings, like one of our strongest findings was central importance of trust. And participant actually emphasized like how important is trusted relationship with healthcare professional and also with the patient and family members. And the reason is that if you do not have trust, conversation may be delayed, and it can be, you know, the patient maybe feel unsafe or not comfortable to have those conversations in an effective manner. And also how information is framed. Like participant mentioned that they need an inclusive balanced information about aid-of-life care, not in a fragmented way. So there are so many information, but in a fragmented manner, not in a one place where they can explore and gather the information about aid-of-life care planning and also meet. Um, and third, the most important one is timing. And the meaning of timing is we often think that we will be taking about this decision making later stage of our disease trajectory, like when uh you know the situation is orsen. The participant mentioned that this should be a decision making at the earlier stage when you are not vulnerable. When you are stubborn, you can take a proper decision making and you can discuss with your family, with your friends, and have those effective decision making. And last most important one is misinformation. As I mentioned, there are so many misinformation about MAID. You have heard about so many important things from Janine, which is you know part of the exact uh like proper resources, but there are lack of resources, and participants do not know where to go to gather information about end of life care planning or MAD and what is the procedure. So they mentioned that this is very important to have a proper reliable source where they can explore the information and you know gather the resources. So, overall, if I sum up, like there are so many important things to share, but if I sum up, like they mentioned that end of life care planning is not something that you have to uh decide in a single conversation with, you know, MS patients, it should be in the trajectory, like throughout your disease trajectory, it should be a discussion with your healthcare professional, with your family, and with your friends.

SPEAKER_01 29:51

So yeah, I watched something years and years ago, and it was called The Best Place to Die in America, and they connected somebody to an end-of-life care nurse practitioner on diagnosis of a of a chronic disease. So that could be 20 years before they were end-of-life, you know. Um, so it but it talked about how early they started the conversations with people, yeah. That it didn't have to be sort of at that right at the end. It was like years and years of connecting with your team about where you were at in the process. So that article has stuck with me forever because it was just like how important it was to build trust through those early conversations as well.

SPEAKER_02 30:38

And when they think, Kyla, it's much like when we went to school, right? When you when we learned about palliative care, right? People still think palliative care is a destination unit. You go to palliative care when it's time to die. But really, palliative care should be introduced into the care pathway as soon as a life-limiting illness is, you know, at that first cancer onset. Maybe you'll never need it. That's fine. Maybe all you'll need is some, you know, drug support, like meaning um pain management or exceptional drug status, even right, right. Or nutritional supplements that aren't usually covered under healthcare, but they are under the palliative care plan. Like that palliative care is not a destination. And same thing, like any end-of-life care shouldn't be a destination, it should be a trajectory conversation. Because that did come out like one of the participants in our research, but it'll stick with me and hence why it's a theme as well. But they said, you know, when you're thinking about how you want to die and if you want to take MAID or palliative care or you know, the financial implications of your illness and disability supports, he says, you know, these are not things that you want to decide on the worst days of your disease pattern. Right. So when you're in the middle of a med change, or maybe you have a UTI on top of your illness, or you've got a cold or flu, or MS has these flare-ups of exacerbations. And these are not conversations to be had on your worst days. Yeah, these are conversations to be had on our best days. So they are clear and uh not unduly influenced. So that's it. I I'm exhausted, I give up, I can't deal with this anymore. That kind of more impulsive versus what do I really want? What aligns with my values of who I am, not reactionary to a situation.

SPEAKER_01 32:25

This is such a good example of the things we've covered in my other episodes around relational care design and team-based care and having access to a group of people that know you and that have been with you and understood. And have the time and have the time, right?

SPEAKER_02 32:42

Because what is a standard clinic appointment these days? 10 minutes, right? So, okay, how are you doing? Good. Well, you know, you've had a significant illness avenge or an exacerbation of your illness, or you had some bad news. Okay, well, how are you coping with that? Good. You need your med three failed and and out you go. And that is not a criticism of my colleagues that work in frontline care. That is a reality. That's the way the system is structured. That is the way it is structured, and they do that by necessity because there's 300 people waiting to see them, right? But if we want to really, I think, slow it down, we need relationships. Yeah, and I think that is what is that the people are craving, right? I mean, I I'm craving. I'm lucky I've had the same family doctor for many years. I am so grateful for that. But there are many people that don't. You know, I think about the care providers up north fly in, fly out, fly in, fly out. They never see the same person twice. Like, how is that consistent care? How do they get to know who Janine is, not just with her diagnoses on paper, but who Janine really is.

SPEAKER_01 33:44

Yeah, and what matters to you.

SPEAKER_02 33:45

And what matters to me. Yeah. Because we do have examples that came through in that research of okay, so maybe I think I kind of have a trusted doctor here. And it's like, you know, I might be thinking about this. It's like, oh, you don't need to think about that yet. You're you're too early. And you're so there's kind of a blunting or a stopping for those people who don't know yet that there is a centralized program. So they're kind of floundering, so they're feeling out because MADA's still somewhat taboo, right? So if someone's thinking about end of life, and on one hand, your doctor is talking to you about, well, we need to up your blood pressure meds and we need to do this and we need to do blood work. So that the message is we're still actively treating you. And yet you're kind of trying to think about, well, I might not be into the treatment game anymore. I might be kind of starting to think about what I want for deprescribing or end-of-life care or this. So they're kind of feeling out who to talk to, right? And so if they get those blockers from their primary care provider, and again, blockers, not even intentional, sometimes intentional, maybe not intentional, that can shut down the conversation and that really leaves them lost. So once they are connected to the MAID Saskatchewan made program, I understand there is a good care pathway laid out. It's getting to that point of connection. And then also that's just made, but then the whole broader end of life care, advanced care planning, right? Because that is still that is also a relational piece. Okay, well, you know, I'm not real sure. And then what kind of wouldn't say frightens me, but surprised me that comes up in our research is oh, well, yeah, I've I've talked about that. I've I've put it in my will that my family member can can ask for maid if if I have had a stroke and I can't speak for myself. Well, that's not a thing. That that's not a thing, right? So are you going to your lawyer then? Because that is the best source of information you have. Because if and if that's so, then if that's their trusted person, then we need to do some healthcare education with the lawyers, right? So that information is correct. Or when we did research with the funeral care providers, it was the same thing. Someone got diagnosed with they already do pre-planning for a lot of people. Oh, I see, yeah. Right? Like they do pre-planning for death. And so participants in that research were like, you know what? People are coming to us saying, I've been diagnosed with this. I think I'm gonna have made, I haven't even told my wife or child yet, but this is the direction I'm going. So don't be surprised if this is what I want. And where do I get the information on that from? People are going to funeral care providers sometimes to say, where do I get information? So I don't know who owns the responsibility for advanced care planning, or is it follow the trust and then equip those people with the right information to then feed to the patient to get them connected? Yeah, I don't know. This is how does that's your core of your question. How do you integrate this and where? I think is the million-dollar question yet. Because I don't think we've done it really well for advanced care planning, let alone palliative care, let alone made.

SPEAKER_01 36:49

Right. Yeah. Nabila, do you know of any models that are working really well either in Canada or elsewhere?

SPEAKER_00 36:56

I I will not say that I have explored, but from my research experience, I will always say the patient-centered um experience model is the best thing. Like we are doing something for the patient and family members, so we have to hear from them rather than assuming that this will be working. Uh, for example, uh, continuing with uh Janine's discussion, that facilitating the conversation. So this comes to our interviews, like participant was saying that when they were speaking about end of life care discussion, they were being stopped, or then sometimes they were being judged. They all want is to someone to listen what they want and share their experience, their perspective about me. Even during our interview, participants say that um, you know, I feel so relieved and reassured that you have listened to me, and I feel so great. So, this is something that we have to think that when we plan anything for the patient or family members, it should be patient-centered approach, obviously. Yeah.

SPEAKER_01 37:56

Yeah, I can't stop thinking about how this connects with patient medical home, right? What I'm hearing is that a lot of doctors' offices are bringing in chronic disease management support through nurses or nurse practitioners to kind of take over the group of patients that have chronic disease. I wonder if that's a space where those chronic disease management people can also incorporate uh advanced care planning and be educated around those conversations.

SPEAKER_02 38:28

So the piece that I haven't quite resolved yet in my head with advanced care planning is where does it belong? Is it a chronic disease management thing? Is it a primary care provider home thing? Is it a legal thing? Is it uh is it a something that you do before discharge from a hospital? Is it something that we put in like organ donation where we do mass push-outs every so often saying you might be 25, but you actually should have an advanced care plan? But if we go with that idea of the evidence saying these should be decisions made on your best days, not your worst days, then where does that go?

SPEAKER_01 39:08

It almost needs like a universal approach, right? Like a universal screening kind of approach that you do at certain times in your life or whatever.

SPEAKER_02 39:19

So then this is though what's happened, right? Because they're like the SHA has a great yellow sleeve program, right? Here is my advanced care plan. And you can get a yellow sleeve and you can have a yellow sleeve on your fridge, right? So if someone a care provider comes into your house, they know to look for the yellow sleeve, and that is your advanced care plan. That's great. However, that that website that has that doesn't have anything connected to palliative care or made, so that's that fragmented siload piece.

SPEAKER_01 39:46

It's kind of are you a do not resuscitate or not almost?

SPEAKER_02 39:49

Yes, it's it's a binary decision, and it's like it's not a binary decision. Yeah, there's there's more to it than that, but that's a great universal you know entry point. But then if you want information on deprescribing, right? So I am 75 years old and quite frankly, I've had a great life and I don't want to be on my calcium anymore. I my if I get osteoporosis at 75, so be it, right? I got I got type 2 diabetes and I've had type 2 diabetes for 30 years. But I want ice cream and I'm in long-term care, please someone give me a bowl of ice cream, right? So if I want deep prescribing or stop poking me with for my blood sugar monitoring, please stop giving me my calcium. You know, I only want essential meds, then maybe I don't even want my blood pressure meds anymore. Like, let's just let's just let this play out. Where do you find information on that? Then where do you find information about palliative care? Not the palliative care units, but palliative care as a philosophy of care. Where do you find information on that? Well, that's somewhere different again. Then where do you find information on me? Well, that's over here, and that's somewhere different again, yeah. Right. So, what we heard from this MS project is, and as Nabila so aptly said, we want information in one spot, right? Right. It needs to all be pulled together. Advanced care planning, right? And part of advanced care planning is knowing your options, and within those options, there's there's palliative sedation, there's voluntary stopping of eating and drinking as well. There's bait, there's palliative care, there's deep prescribing, there's no CPR, like there's all sorts of options within that know your options piece. But they said, why? And this was from the uh the MS project, why do we treat end of life different than any other medical decision? Like if you're presenting me with a new medication to try, you're gonna tell me all the risks, the benefits, the challenges, and I will know what that med is and I will know what my other options are. And you will tell me that I don't have to go to the website and get this drug information going this way. I get them all. Why can't I get them all in one spot? And if I know that's just not an option for me, well, I just won't pay attention to that option. Yeah. So that's where the where does made go? And I don't know if we have solved that yet.

SPEAKER_01 41:51

Yes. How does it integrate into the system?

SPEAKER_02 41:54

And where?

SPEAKER_01 41:55

Fully and yes.

SPEAKER_02 41:56

Fully and completely. Yes. On another example, is you know, there's some really great relationships with palliative care doctors and units and stuff that have have organically developed, right? Because people are having conversations and finding commonalities. That's not always the same at the national body levels, like where palliative care's philosophy is still not to intentionally hasten death. So there are some that where palliative care and maids should always be pillared and siloed because of the very different care philosophies, right? So you are also working with or against old care paradigms too. Mindsets, right? Palliative care does not intentionally hasten death. Therefore, maid should not integrate with palliative care. So there that's not everywhere, like relationally, things are happening, but there's there's ethos involved there too. So it's where does it belong? So it's kind of left hanging.

SPEAKER_01 42:58

So based on what you know and what you've learned and what you're hearing and everything that you've learned over these years, where do you think we need to go with this? How can the system respond to what you're hearing and what you've been collecting and do something different to make this system work better? Like, what's your theory of how this could change?

SPEAKER_02 43:19

So I think if in any evidence, right? Because we're starting to get a plethora of evidence now. Like MAID has been around, there's been a lot of research, Canadian context, health system-driven research. So we've got some good health Canada data, we've got all that. How do we influence the system? Right? That's that's what I hear you say. Yeah. So I think what we need to do is start looking to implementation science, right? I think we need someone, an implementation scientist, to look at all those cultural factors. Like, I mean, political culture, uh, work structure, the churn of people, right? Like I anecdotally know people who still work in the health system and they said they Had a different manager how many times in the last year, right? It's just a factor of the system. The system is complex. So, how do we negotiate those cultural and context factors, right? Plus human change behavior, plus evidence and timing. Like there's some pretty big bubbles here to navigate before we make a difference.

SPEAKER_01 44:23

Well, this is why I'm so interested in complexity approaches to change, because it's very, very different than working on like a process change, right? Like there's some things that need to be changed incrementally. There's some things that you can follow a step-by-step process or do a pre-post kind of change. But if you're going to change a system that consists or a culture of care, multiple thousands of people making multiple thousands of decisions on a daily basis.

SPEAKER_02 44:52

Especially now think made. And now they're morally and plurally diverse. Yes. Right. There is no consensus on right or wrong or right way or wrong way, right? So there's no real consensus in this. How do we move this forward? Yes, yes, yes. So I think to be fair, Saskatchewan has done fairly well with making at least a centralized program where once someone can get into that program or knows of that program, I think they take really good care of people and provide good information, right? And there is a process. It's getting, it's and it, and maybe it maybe it needs to be siloed. I don't know. Like, I don't think that's what the evidence is saying. Agreed. Yeah. But is that what we need to do for now so patients and families can at least get the care that they want while the chaos is still getting resolved over here. Yeah. Because otherwise, people at the end of life, where I argue they are vulnerable, are getting swept up in the chaos and really getting lost. Yes.

SPEAKER_01 45:53

This is a fascinating exploration of how a system works, right? Or the comp the complexity. Take a really complex topic that has all of these components and figure out how you create it into the system is like just like to me, this is like my favorite kind of performance and the resource and the system does not have infinite resources.

SPEAKER_02 46:15

Yeah. Right. So how do we make a new program when quite arguably we do still need to better fund respite care, disability care, palliative care, and all these other things? Yes. And then there's the competition for money. Right. So palliative care and disability people, they are underfunded. They are there. We need more respite beds. We need more palliative home care. We need all those things. We know that. And now we're introducing mate. Well, the pie can only be split so many ways. And where's the investment on the whole in long-term care? Right. Like I don't think we can lose the eye off that prize either. We have an older, elder population, right, that are living longer with chronic diseases, but everyone must die at some point. Yeah.

unknown 47:01

Yeah.

SPEAKER_02 47:01

And how do we have a quote in the body of my I have a quote in the first part of my thesis from the German hygiene museum, right? Despite all of mankind's efforts to extend life and cure disease, the inevitable fact is every one of us die.

unknown 47:16

Yeah.

SPEAKER_02 47:17

It is one of the true universal experiences, right?

SPEAKER_01 47:20

And we do ourselves a disservice by avoiding the conversation. Yeah. So just to round this out, what's your ask of either the people listening or the system? What's your what would be your ask?

SPEAKER_02 47:36

So I'll I'll Nabila, do you think about your ask? I'll start my ask first. I think for the everyday public, right? Yep. If you are my nieces call it doom scrolling. I don't know what, but if you're scrolling on your phone, if you're scrolling on your phone and you see something about made that sounds a little uh, please fact check it. Please, please fact check it. And you can either look at my websites that have uh on the University of Regina has a repository. Most of my articles are available free, and that's not just a plug for me, right? But go to the evidence, go to the made law, see what the eligibility criteria and safeguards are, go to the MAID reports themselves that have the data, how many people every year are accessing MAID? It's in there, it's not 35% of the population or whatever, you know. Go and look because there is such a proliferation of misinformation. Okay. And I worry about, I think people who are interested in MAID would still be interested in MAID, but if their family members were not supportive, that fuels that non-supportive fire, right? And if it's if it's evidence-informed decisions that are their concerns about, okay. But I worry about misinformation influencing people's choices. Okay. So please fact check Nabila.

SPEAKER_00 48:59

Yeah, thank you so much. You already shared my thing, like you know, that misinformation and information, this is something that I'm really crazy about, but I will flag out uh about communication part. Um, we all think that communication is a secondary part of the healthcare, but it is not, it's a part of care. So having an effective communication, like how you are discussing with your healthcare professional or your family or friends, it matters. It matters for your quality of life, it matters for your effective decision making for end-of-life care. So don't be stigmatized. End of life care doesn't mean that your life is ending, rather than have this discussion openly with your family and friends, and you know, make a plan ahead of time rather than waiting for the later stage of your life.

SPEAKER_01 49:43

So Yeah, I think about all the services and supports we have for pregnant women and you know, and how that's built in. And you've got a plethora of information and public health nurses that you can contact, and all of that seems like a very integrated part of our system. And yet at the other end, it's a it's a bit well.

SPEAKER_02 50:01

I think I think this would be another fascinating conversation for your show or somewhere. But I think where there is a paucity or a lack of support, organic things sprout up, right? Yes. So what we are seeing is a proliferation of death doulas, right? Or end-of-life care specialists, right? Yeah. That, you know, so yeah, someone that I can just have these conversations with and then they can help advocate, or some of the community-based um end-of-life volunteer associations, prairie hospice in Saskatoon, for example, is one, right? They go out and match people and have volunteers with people at the end of their life just so they can have someone to talk to, right?

SPEAKER_04 50:43

An advocator.

SPEAKER_02 50:44

And an advocate or just a listener, or just a listener, even, right? So I think where that's almost like a dashboard for the healthcare system. When we're maybe not doing as good as we could for a variety of reasons, when we're maybe not doing as good as we can and our engine is suffering a little bit, death doulas, hospice, lawyers, funeral care providers, all these other places are popping up because people are going for information to second and tertiary sources.

SPEAKER_01 51:12

Yeah.

SPEAKER_02 51:12

Right. So again, not a bad thing. And maybe if we follow the idea of they will follow the trusted professional, maybe that's where we need to follow too. Yeah. Right? Yes. Is then match, then give those self-identified trusted professionals the accurate information, not to be assessors and providers, but at least to help them navigate the system.

SPEAKER_01 51:31

Yeah. Right.

SPEAKER_02 51:32

Yeah.

SPEAKER_01 51:33

So food for thought. I learned so much from you, and your research paper was very interesting. I think it really hits on the systems and the structures uh and the power dynamics that all play into made an end-of-life care and advanced care planning, which now I see together as one continuum now, thanks to you. And I think that these are the conversations that are happening, especially in the circles that I'm traveling, is like we've always focused on sort of like the smaller pieces of these programs and initiatives. And I think people are kind of looking up a little bit and realizing that there's structures across all of these things that are kind of similar. And if we kind of built our system differently, that would sort out a lot of all these little incremental and hotspot things that are happening all over our system. And I think this is one more thing we can kind of integrate into that conversation.

SPEAKER_03 52:33

I think so.

SPEAKER_01 52:34

So thank you for the work that you do. Thank you for doing this important research and sharing it with us. And Janine, I absolutely would love to have another conversation about implementation science.

SPEAKER_02 52:43

Well, I will make sure we get I get you connected to the right people because it's another, I think it's the missing jigsaw puzzle of moving information to action. Yes. So yes, awesome. Thank you for having us, Kyla. I really appreciated it. And thanks for being gentle with us.

SPEAKER_01 53:00

You're welcome back anytime if you have new research or new ideas, or if something's coming together and you want to share it. I'm always happy to have people back for second episodes. Perfect. Thank you so much. Nice to meet you, Nabila. Nice to meet you. Take care, Janine. Okay.

SPEAKER_00 53:17

Bye-bye.

SPEAKER_01 53:19

Thank you so much to Dr. Janine Brown and Nabiela Ashraf for taking the time to sit down with me. One thing that has really stayed with me since this conversation is that you want to be having these discussions and making decisions on your best days, not your worst days, so that you have clarity on what you would really want, what you envision your end of life to be. We have birth plans, wedding plans, retirement plans, plans that we talk about openly and honestly with our friends and family. What if we could also normalize end-of-life planning? And that brings us to the end of season one. That went fast. I'm heading into summer break, and I may put out some episodes of the summer. I have an idea, but we'll see how it goes. But don't worry, if you follow or subscribe to the podcast or YouTube channel, you will be notified when they come out so you won't miss anything. I've already got a long list of guests confirmed for season two, and we start recording in August. So I guess I'll just continue with this random idea now that it's growing and building a bit of a community of listeners and viewers, slowly but surely, week by week, month by month. As always, you can follow Shift on Facebook and LinkedIn. And I've also started a Substack, which I didn't even know what that was, but I'm gonna try that avenue as well. If you want to go even deeper into these conversations, have chats and build a network of system changers, who I am starting to call Shifties, you know, like Swifties. You can download the Substack app on your phone and find me at Shift with Kyla. There you will find my podcast episodes, but also articles and links to resources that bring even more light into the conversations around changing the healthcare system. Thank you for listening. Keep spreading the word and keep working for change. Remember, systems don't change unless we do. This is shift. This is shift. See you next season.