What would you choose if Medical Assistance in Dying (MAID) was an option?

Leanne Kaufman:

It’s now no secret Canadians are living longer. Medical boundaries are constantly being pushed and illnesses and disease that once were considered terminal have become treatable or even curable. Yet living for longer doesn’t necessarily come with real health. With these extended lifespans can come increasingly complex health conditions that challenge our understanding and patience for medical care and personal choices. Medical Assistance in Dying or MAID has emerged as a profound journey that touches the most vulnerable moments of human existence. It represents a critical intersection of medical ethics, personal autonomy and compassionate care, inviting conversations that many people, up till now anyway, have only whispered about.

Hello, I’m Leanne Kaufman and welcome to RBC Wealth Management Canada’s Matters Beyond Wealth. With me today is Helen Long, the CEO of Dying With Dignity Canada, an organization whose mission it is to ensure access to quality end of life choices and care through advocacy, education and support.

Helen, thanks for being here with me today to explore MAID from its legal roots to the critical safeguards and why this matters beyond wealth.

Helen Long:  

Yeah, thanks for having me.

Leanne Kaufman:

So, the concept of medical assistance in dying or MAID has really transformed dramatically in the recent years. And it’s challenging how we think about our personal choices and sometimes how we think about medical ethics, perhaps. So, for those who might not be as familiar with it, can you start us off by explaining what MAID is and why this conversation is so crucial for Canadians right now?

Helen Long:

Yeah, I think what makes it so important for people is that at the end of it, MAID is really about choice. It’s about autonomy and it’s about quality of life. So, things that, you know, are very important to people and that they want to be able to manage and control throughout their lives, but also at their time of death.

What MAID is, it’s a medical procedure. It’s part of your healthcare system. An individual can choose to have MAID and that’s where they meet a specific eligibility requirement, this is part of the laws of Canada. So, they need that eligibility requirement. They make a request of their own and they can’t be coerced, it can’t be anyone else’s decision or request. Then they go to a healthcare professional and they ask to have MAID. That person does an assessment, they actually have two assessments. If they’re found eligible, they can then determine the timing of their MAID death.

It’s basically a healthcare procedure that’s done at the request of a patient after meeting eligibility requirements with the support of a medical professional.

Leanne Kaufman:

So obviously this was a major legal change when this was rolled out and made available to Canadians. And like all legal changes—I come from a legal background—it started with a pivotal moment that really challenged the existing system and the precedents up to this point. So can you walk us through, it was called the Carter case, I believe, how the Carter case became the catalyst for what we have today as far as MAID legislation.

Helen Long:  

Yeah. I mean, I think you go back a little bit before Carter, even to Sue Rodriguez in 1993. Sue had ALS and she actually challenged the courts to have an assisted death. She did lose that challenge, but I think that case really spoke to Canadians and it really started the public conversation and the shift in public opinion around assisted dying.

The Carter challenge in 2015. So, Gloria Taylor, who also had ALS and Kay Carter, who had spinal stenosis, they argued that the constitution didn’t allow them to have the right to liberty [and] security of the person that is outlined in section 7. So, by constraining their right to make a decision about their bodily autonomy and about their medical care, their rights were being violated under section 241 of the criminal code. The Supreme Court agreed with them, and that was what brought about the changes to the MAID law. The MAID law was introduced in 2016 following the Carter decision.

Leanne Kaufman:

So, you mentioned in the introduction of what MAID is that there’s an eligibility criteria to all of this. So, can you just walk us through what those specific criteria are that determine a person’s eligibility for MAID and the way those work as safeguards in some instance?

Helen Long:  

So, basically in order to be eligible for MAID, there’s some really standard things.

• You have to be 18 years of age or older.
• You have to have capacity to make healthcare decisions of your own.
• You have to be eligible for healthcare services in Canada.
  • So, we don’t allow people to come in from outside of Canada to have MAID here. You must be eligible for your provincial healthcare services.
• You have to, I mentioned this earlier, but you have to have made a voluntary request. So, someone cannot have made a request for you or pressured you.
• And at some point you have to make that request in writing through a form.
• Then finally you have to have what is called the grievous and irremediable condition.
  • So, what that is, is that’s a condition, which is a serious illness, disease or disability. It’s in an advanced state of decline that cannot be reversed. And it’s causing you to suffer unbearable physical or mental suffering from that, that can’t be relieved under conditions that you find tolerable.

That definition is what we call Track MAID. That’s a basic MAID case. There is also today something called Track 2 where your death does not have to be as reasonably foreseeable, and there are some additional safeguards for that. But let’s start with the basics.

In terms of safeguards, the fact that you have to request it yourself ensures that it’s your choice. The clinician will actually assess for coercion during the process. And as I noted earlier, there are two independent clinicians. So, the fact that they’re independent, one doesn’t have power over the other means that the assessments are independent. That’s a safeguard. The assessment for coercion is a safeguard. Looking at treatments you’ve had and how they’ve worked for you and whether you’ve considered everything that you can, that is a safeguard. Ensuring that the conditions are not acceptable to you. So really talking to someone about their values, their life, what’s important to them in terms of, you know, physical things, emotional things, what they can do with their family. All of those pieces form safeguards throughout the assessment process.

Leanne Kaufman:

And this is so deeply personal, obviously, but also incredibly emotional. The whole concept of choosing one’s time of departing their community, their family and their friends. Let’s talk about the family and the community for a minute. How do families typically, in your experience anyway—maybe there is no typical approach to these incredibly sensitive situations, conversations, what sort of support exists? How do you prepare, basically, your circle for this?

Helen Long:  

Yeah. I mean, I think something that’s very challenging for a lot of people that both the patient and their family is that often we don’t have these conversations early enough. So, we wait until a time of crisis. We wait until someone’s in the hospital. We wait until that point where there is no further treatment. And that’s when we start talking about what they would like. Often that MAID conversation comes up, you know, quite late in the process. So, we always remind people and, you know, much like you do around financial planning, we always remind people about advanced care planning. So, making a plan for what to do as your health changes over the years, and you can do that at any point. You can do it today regardless of your age, because it’s very difficult to have those conversations in a much more emotionally charged time, like when you are in crisis.

That said, you know, families do it in different ways. Often the patient initiates the conversation because they’ve been thinking about it. Your listeners might be interested to know, 76 is the average age of a MAID recipient. They’re split pretty evenly between men and women and over two thirds have cancer. So, the majority of MAID patients are somewhat similar in terms of their condition. So those conversations tend to happen a bit earlier. Families and patients will talk about how they’re feeling, what they’re thinking, what they want to see.

I think it’s really important if you’re a supporting family member and your loved one brings a conversation up, it’s really important to be open and listen to the conversation, even though it may be emotionally difficult and challenging. I think the more talking that’s done is better. I think it’s really important that people are able to make a bit of a plan.

Generally speaking, the individuals that we talk to are well-supported. Family and friends are often quite supportive of the decision. Not always, even in the cases where we hear that someone is a bit resistant or doesn’t want to have the conversation, it often comes back to their sense of loss that they don’t want to lose their person. And we do find with time and with conversation, most people are able to, you know, while they may not still want to hear that this is what’s going to happen, they are able to support their loved one.

In terms of resources, there’s a number of things on our website. We’ve got a brochure about MAID and grief and a brochure about MAID just in general. There’s also two groups, the MAID Family Support Society and Bridge C-14. These two groups offer a variety of peer-focused services related to both the person on the MAID journey, but also the loved ones around them and grief supports as well. So those are two great resources people can take advantage of.

Leanne Kaufman:

You mentioned how, which makes perfect sense, that sometimes it’s hard for the family to kind of wrap their head around the decision or maybe even be supportive, at least in the early days. Now, I was surprised to learn that there are institutions, medical-based institutions, that also kind of struggle with or have different points of view on MAID in their own facilities and so on. Can you talk to us a little bit about what happens when healthcare institutions or specific facilities do have reservations or aren’t interested in facilitating a MAID procedure within their walls?

Helen Long:  

Yeah, for sure. So, in Canada, we have what we call conscience rights. So, if you’re a clinician, a doctor, a nurse practitioner, you have the right to choose which services you’ll deliver. We do see clinicians who do not want to provide MAID or abortion, various medical procedures, and that’s okay, those rights are protected.

What we don’t believe is appropriate is for a building to take the position that it has conscience rights. Bricks and mortar hospitals do not have conscience rights. In many cases they’re publicly funded. So, our view is really that publicly funded institutions should allow MAID on site, period. There’s no special equipment needed, it’s an IV, some kind of bed or lounging chair. The clinicians can come in from outside if they need to. There’s really no logistical reason why those institutions can’t allow MAID on site.

If they do not allow MAID on site, what happens is the patient is transferred. And, you know, I think when you first say, oh, well, the patient gets transferred somewhere else. It doesn’t really sound like that big a deal until you think about the fact that many of those patients are at the very end of their life. This is their community of care where they’ve been and kind of connected with people. They’re in physical pain often that is like intolerable, so they often have to be medicated in order to be moved. They may lose consciousness, they may suffer just through the journey of the bumping and the dragging and the moving. There’s a case right now in British Columbia, the young woman in that case did not regain consciousness. So, she wasn’t able to say goodbye to her family. It really can be a very traumatic, tragic ending for both the patient and their loved ones.

You know, on the positive front, we are seeing more and more small facilities, hospices, for example, that have some perhaps more of an institutional objective, historically, who are now kind of turning and are saying, you know, well, what do our patients want? What do our families want? What does our community want? And in those cases we are seeing MAID becoming more of an option in those facilities. At Dying With Dignity Canada, we firmly believe that if the institution is publicly funded, Canadians should be able to access the services that they’re paying for with their tax dollars.

Leanne Kaufman:

You mentioned earlier about the…and I think that’s actually an excellent point around part of the education and planning and preparing is knowing whether—assuming you’ve got the runway to do this kind of planning—where you’re going to be treated and whether that is a place that you can fulfill all of your goals, including this last one.

Let’s talk about that advanced care planning that you mentioned earlier, just for a minute. Of course, we at RBC Royal Trust, we focus on advanced planning around financials when it comes to powers of attorney. And you’ve already mentioned how critical the pre-considering or the planning on the care side is. What sort of conversations do you have with people about that? What sort of considerations do you recommend that they take into account? And how do you kind of explain to people the importance of this correlation between their care planning, their end-of-life planning and their legal and estate planning?

Helen Long:  

Yeah. So we have a, what we call an Advanced Care Plan kit on our website, which basically walks you through the entire process. There’s a lot of information in there about values because end-of-life planning and planning in general is very individual. What’s important to me might not be what’s important to you. So, it’s really important for people to take time to go through the worksheets to think about what matters most to them. Do I love to run? Is running the most important thing to me? Or do I just want to be able to spend time with my grandkids sitting down and reading? Do I need to be able to get around or am I okay staying in one community? Is traveling my thing, so I want to travel as long as I can? So really thinking about what’s important to you, where you want to be.

You make a great point about facilities. Unfortunately, oftentimes when people start considering entering either a long-term care facility or a retirement community, often these days, first of all, they don’t have a lot of choice. There’s very limited bed space in many of those facilities, so you don’t always get to go where you want. A lot of times people aren’t thinking about dying yet. They’re thinking about where they’re going to live next. So, it’s not always on their radar to say, “Oh, and by the way, if at some point I decided I’d like to have an assisted death, are you going to let me have it here?” But it’s important to think about that if you can.

Then I think the other thing is to speak with your family about what you want and how that impacts them. So where are you going to go? Who’s going to what? How involved are they going to be? Until you’re in that situation and people are having to perhaps go to a care home that’s further away. Where do your kids live? Are they close enough to support you? Do you have a sibling who can help out? There’s a, just a lot of factors that I think people don’t think about until they’re there. And when we think about planning, we think about things like DNRs, but that’s a very narrow specific instrument. And when we talk about advanced care planning, we’re really talking about all the pieces along the way until that final decision. So, I would just really encourage people to download our kit or another kit—there’s lots of books on the subject—and really sit down and think about what they want, but then most importantly, have that conversation with their family so their loved ones know what they want and understand what they would like to see happen. What’s important to them.

Leanne Kaufman:

So, you have referenced the Dying With Dignity website as one potential area for people to go to learn more. Where else can people get resources or what resources do you recommend for people to explore this topic a little bit further if they’re interested in doing that?

Helen Long:  

Yeah, every province has a website with information on assisted dying. Assisted dying is delivered through our provincial healthcare system. So, if you look up ‘MAID care coordination’ and the province that you’re in, every province has information and I think a good amount of information. Also, it will give you specifics. If you’re actually looking at MAID at some point, you can get the specifics for your province. It does vary a little from province to province. The Health Canada website has some great information on eligibility and the basic law around assisted dying, if that’s of interest to people. And then as I noted, both MAID Family Support Society and Bridge C14 offer some great resources as well.

Leanne Kaufman:

That’s great.

Well, we’ve covered a lot of ground and I know we could go deeper, but if you hope, Helen, that our listeners just remember one thing from your conversation with me today, what would that one thing be?

Helen Long:  Yeah, there’s a quote one of our volunteers said during an advanced care planning session: “Plan for tomorrow so you can live today.” And it’s something that we’ve really embraced. Just making those plans so that they’re ready and they’re there and you can focus on being in the here and now, I think is really important advice or guidance for anyone. I would encourage your listeners to think about that. And of course, visit our website, dyingwithdignity.ca for any other questions that they might have.

Leanne Kaufman:

That’s great, Helen, thank you. It’s been very helpful to guide us through this. So, thank you for joining me today to help us really better understand Medical Assistance in Dying and why this truly matters beyond wealth.

Helen Long:  

Thanks very much for having me, Leanne.

Leanne Kaufman:

You can find out more about Helen Long on LinkedIn or at dyingwithdignity.ca.

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Until next time, I’m Leanne Kauffman. Thank you for joining us.

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