Bill C-7: Six months later

On September 15, 2021, Dying With Dignity Canada (DWDC) hosted a webinar focused on medical assistance in dying (MAID) six months after the passage of Bill C-7. The webinar was presented by Helen Long, the CEO of DWDC, and Dr. Osmaan Sheikh, a physician and MAID provider from British Columbia. 

Bill C-7 reached Royal Assent on March 17, 2021. The introduction of this new legislation included changes to eligibility for those accessing MAID and altered procedural safeguards. The webinar reflected on the impact of Bill C-7 on Canadians seeking access to MAID, any challenges that have emerged, and what the future of MAID and end-of-life choice in Canada may look like.

What are the most impactful changes that resulted from Bill C-7?

• The removal of the clause that a person’s death must be reasonably foreseeable allows more Canadians who are suffering intolerably to access MAID. This was a direct result of Nicole Gladu and Jean Truchon’s case brought to the Superior Court of Quebec. The Court ruled that the reasonable foreseeability of natural death criterion violates section 7 of the Charter, which protects against deprivations of life, liberty and security of the person, and section 15 of the Charter, which guarantees the right to equal protection and equal benefit of the law without discrimination.

• The addition of the waiver of final consent is often referred to as Audrey’s Amendment. Audrey Parker died sooner than she wanted because she was afraid of losing the capacity to consent before her scheduled MAID provision. This amendment to the law is due to Audrey’s advocacy and will bring peace of mind to many Canadians. See more details below.

• The number of independent witnesses for MAID was reduced from two to one, and the witness can be a healthcare worker. The requirement of two witnesses was a barrier for some patients, in particular those who live rurally or have a small social network.

What are the clear benefits of the changes in Bill C-7?

• Dr. Sheikh commented that before the waiver of final consent, clinicians were playing a game of prediction of when a patient might lose capacity. The waiver of final consent offers peace of mind to the clinicians and especially the patient who no longer has to be concerned about losing capacity before their scheduled MAID date. Even on the day of the provision, there is less stress for everyone involved. The family, friends and patients can focus on their time together and final moments.

• Loosening the restrictions of who can be a witness has been helpful, especially during COVID. A patient in hospital during the pandemic had less access to people who could act as a witness. Being able to have a healthcare worker sign the waiver made this step much easier. Even after COVID restrictions, the witness role is just that, to witness the signing of the request for MAID; a healthcare worker can fulfill this role.

What are some of the challenges of the changes in Bill C-7?

• Dr. Shiekh noted that since March of 2021, there have been more requests for MAID because of the folks who are suffering but whose deaths are not imminent, those who were waiting for the removal of the reasonably foreseeable death clause.

• Many of the cases are now more complex and require more time to assess.

• He also notes that some individuals have come forward since the passing of C-7 since they were under the impression that they would not qualify under the original legislation, only to be told that they likely would have qualified under the old law as well as the new.  This speaks to some of the misunderstandings about the legislation and the fact that for many, the only way to truly determine eligibility is to meet with an experienced assessor.

What are some of the misconceptions about Bill C-7?

• MAID for those whose sole underlying condition is a mental illness will be restricted until March 2024. In that time an expert panel will be reviewing the issue and making recommendations for when the restriction is lifted in 2024. However, a patient with a mental illness, who meets the criteria for MAID based on their full medical history, could access an assisted death. The assessor must determine if  the patient has the capacity to make the decision.

• A person with dementia can access MAID, however, they need to have capacity during their two assessments. This means that the timing of the request is crucial; if capacity is lost and not regained before the assessments can take place, the person cannot move forward with MAID. For a person with dementia who has gone through both assessments and is considered to have a reasonably foreseeable natural death, they can use a waiver of final consent, in case they lose capacity before their MAID date.

• Advance requests for MAID are not available at this time. This is an agreement that given a specific future health state, a person could receive MAID without final consent.

• Another misconception is that there are no more eligibility requirements for MAID and that it is a simple process that anyone can get at any time. In fact, there are still rigorous guidelines and safeguards in place.

How has access to MAID changed since the new legislation?

• Virtual witnessing has made access easier, especially during COVID and for Canadians who live rurally.

• Clinician capacity is high due to more demand and more complex cases.

• Track 2 – patients whose death is not reasonably foreseeable – is new territory for clinicians. Clinicians’ comfort level with this new track of patients requires time and getting used to.

• The 90-day assessment for track 2 patients is difficult and stressful for patients who are suffering. According to Health Canada, this 90-day period is triggered by the assessor and could start when they first meet with the patient, when they first start reviewing the patient’s medical history, or when they begin reflecting on the case.

• There are issues with compensating nurse practitioners (NP) for MAID provisions in provinces where they are legal providers. For this reason, NPs could be reluctant to offer this service and therefore there is a gap in service available.

What is the waiver of final consent and how does it work?

The waiver of final consent allows someone who has already been assessed and approved for MAID to receive it on their chosen date even if they don’t have the capacity to consent at the time of the MAID procedure. This would be based on a signed and dated agreement with their MAID provider and the patient must be in Track 1 whereby their death is reasonably foreseeable. The waiver can only be used by the MAID provider who signed it and it refers to the date selected (or before*) for the MAID provision, not a state of health.

*From the bill: “In the written arrangement, they consented to the administration by the medical practitioner or nurse practitioner of a substance to cause their death on or before the day specified in the arrangement if they lost their capacity to consent to receive medical assistance in dying prior to that day.”

In Dr. Sheikh’s practice, most waivers of final consent are set 1-2 weeks in advance unless someone is waiting for a specific event.

The waiver of final consent is only available for patients in Track 1 because there is more chance of these patients losing capacity.

If you are going through the MAID process and have questions about waivers of final consent, please consult with your MAID provider or contact DWDC at support@dyingwithdignity.ca

What is the purpose of the 90-day waiting period for Track 2 patients?

It is an information-gathering period as some of these cases are more complex than someone whose death is predictably soon.

The physician is required to thoroughly review the case, consult with experts in the primary diagnosis, and gives time to determine if all the appropriate treatments have been considered.

The patient needs to be offered all available treatments, but they do not have to accept or follow through on them. A patient’s right is to be aware of all their options and to give informed consent on treatment.

What’s next? The Parliamentary Review

Bill C-14, which passed in 2015, referenced a 5-year review of Canada’s medical assistance in dying law. After the passage of Bill C-7 in March 2021, a joint committee of both Houses of Parliament was struck to perform this review.

In June 2021, the committee held two meetings before being paused due to the election. The committee has been assigned to review advance requests, MAID for mature minors and those whose primary condition is a mental illness, the state of palliative care and the protection of people with disabilities.

After the election, Dying With Dignity Canada will be strongly advocating to start the parliamentary review again as soon as possible. The timelines are short and there is a great deal of work to be done.

You can advocate to reconstitute the Special Joint Committee and complete the parliamentary review here.

Please note: On February 2, 2023, legislation was introduced to extend the sunset clause on MAID for mental disorders until March 17, 2024.

So welcome, good afternoon. Before we begin, I want to acknowledge that while we are meeting virtually, the land that Dying With Dignity Canada is on is the traditional territory of many nations, including the Mississaugas of the Credit, the Anishinaabe, the Chippewa, the Haudenosaunee and the Wendat people. It is now home to many diverse First Nations, Indigenous, Inuit and Métis people. We also acknowledge that Toronto is covered by Treaty 13 with the Mississaugas of the Credit. We invite and encourage you to do your own research regarding the various treaties, in particular the land upon which you are meeting with us here today. We want to continue to bring attention to all of the unmarked graves that have been discovered across the country in the past month. We recognize the continued historical and institutional violence that First Nations, Indigenous, Inuit and Métis peoples continue to experience. We encourage folks to do their own research on the horrendous history of Canada’s residential school system as we recognize the ongoing loss and grief experienced within Indigenous communities.

So, before I welcome today’s presenters, I’d like to go over a few housekeeping items. Everyone on the call today is muted. However, there will be opportunities to submit questions. To do so, please type your question into the question bar on the Zoom side-panel, and we will read it out to you at the end. Please try and keep your questions as clear and concise as possible. We have hundreds of supporters registered for today’s session, and are thrilled that so many of you are interested in watching this afternoon. And while we’re going to try to get to as many viewer questions as possible, unfortunately we may not get to anyone. So, if you do have outstanding questions following the webinar, or questions that are quite personal in nature, please contact us at support@dyingwithdignity.ca, so we can follow up with you individually.

We will also be sending out a post-webinar survey that will pop up on your screen at the end of the webinar. And it will give you the opportunity to share your feedback. We are also recording today’s session, so you will be able to watch it again, so there’s no need to take notes and you can share the link with your friends and family, if you wish. The webinar today will be approximately 60-75 minutes long. So now to introduce today’s speakers, we are pleased to have with us Helen Long and Dr. Osmaan Sheikh. Helen Long is the CEO of Dying With Dignity Canada. She has a long track record of informed engagement and empowering leadership in the not-for-profit, health and wellness sector, with a strong focus on advocacy, public relations and organizational excellence. Her personal connection to ALS and MAID led her to join Dying With Dignity Canada in early 2020. And under Helen’s leadership, Dying with Dignity Canada’s national efforts were instrumental in the passage of Bill C-7, which expanded Canadians’ constitutionally-protected right to seek access to MAID.

Also joining us, Osmaan Sheik. Since completing his residency in family medicine, Osmaan has accumulated a vast breadth of experience. He has worked in sexual health, occupational health with Canadian Forces, sports medicine clinics, addiction, in-hospital care and in-clinic care. Currently, in addition to his practice at Shoreline, he works at Saanich Peninsula Hospital, in the emergency room and in patient wards, and is a provider of Medical Assistance in Dying. He also holds leadership positions with Doctors of BC, and the Victoria Division of Family Practice. So, thank you both for being here. And I will now turn it over to our moderator, Kelsey Goforth, who will get us started with today’s presentation.

Thank you so much, Nicole, for the introduction. And thank you all for joining us this afternoon for our webinar on Bill C-7. So, to get us started, Helen, could you highlight for us the most impactful changes that we saw with the passing of C-7 back in March?

Yeah, sure, Kelsey. Thanks for the question. So, I think there’s really three significant changes that we want to talk about. The first was a direct result of the lawsuit launched by Jean Truchon and Nicole Gladu. And that was the constitutional challenge to the requirement that your death had to be reasonably foreseeable. So, that challenge resulted in Bill C-7. And the changes that introduced what we call the second track to MAID. So, as a person whose death is not reasonably foreseeable, you can now enter the second track to see if you can be assessed and have MAID provided.

So, that’s the first really significant change. The second change, which I think is very near to the hearts of everyone involved at Dying With Dignity, is the waiver of final consent, or what we like to call Audrey’s Amendment. So, this was an issue that came up prior to Bill C-7. It’s not directly linked, it’s not linked in any way really, to the court challenge. But it’s a change based on the story of Audrey Parker. So, Audrey was a woman in Nova Scotia who had a brain tumor and who wanted to spend one last Christmas with her family. Due to the nature of her condition, she was afraid that if she waited too long, she would lose capacity, and not be able to have a MAID death. So, she opted to have her death early. The waiver of final consent that was introduced in Bill C-7 means that no one else will have to make that choice down the road in that type of situation. You can now sign that waiver of final consent. And I think Oz is gonna talk about that a little later.

But you can do that. And then if you lose capacity, you’re still able to have your MAID death go ahead. The third thing we’re gonna talk about right now is the requirement for one independent witness. So, previously you had to have two independent witnesses and there were a number of restrictions on those witnesses. It was often difficult, particularly in remote or rural communities. And in cases where people wanted to stay fairly private about their MAID provision, that it could be difficult to find two witnesses. So, now only one witness is required and that witness can in many cases be a healthcare worker. So a PSW or maybe a hospital or a care facility staff. And that’s made it much easier for people to get their documents signed and witnessed, without having to track down two people that can support them.

Thanks for that, Helen, that’s a great summary. And as an organization that’s run a program related to witnessing and the witnessing requirement for many years, we’ve certainly seen a lot less stress from individuals with the change, that witnessing piece, as one of the big movements forward with C-7. So, the next question is for Oz, Osmaan. How has C-7 affected you and your work as a MAID provider?

Thanks for the question. I think there’s been a lot of positives, but also a few challenges that have come out of the changes, as a result of C-7. The first change that I think has been the most positive is Audrey’s Amendment. We were always playing this difficult game of trying to predict when a patient may lose capacity, and we’re notoriously bad in medicine at prognosticating. And so it was always a very uncomfortable thing to do, to try to figure out timing of when we might go ahead with a MAID provision. So, having that peace of mind with the advanced consent waiver has been a huge positive. And then a secondary benefit of that is that on the day of provision for patients, it’s a much more comfortable and less nerve-wracking experience, because we don’t have to worry about it on the day.

I always felt very awkward when doing a provision, trying to assure that someone still had capacity to make a decision. Because I was legally required to do so. So, I had to ask all sorts of awkward and pointed questions to a patient, that really didn’t feel right at the time after them expressing their strong desire for MAID. So, now that I don’t have to do that… I still do check patients’ capacity and give them the opportunity to withdraw consent. But it’s not as hard or formal or awkward a process. So, I think that’s been the biggest benefit. Not having two witnesses has also been nice. But more so, loosening the restrictions on who could be a witness because… For example, when you have a patient in the hospital, and with no visitors allowed because of COVID, then finding someone who’s not part of the patient’s care team to be a witness was very difficult.

So, now that a nurse in the hospital who happens to care for the patient could be a witness, or social worker or whatever, that’s been a real benefit. The interesting thing that happened to our work after C-7, which is sort of expected in one way, but then unexpected another way, is the sheer volume of referrals that we’ve had and requests that we have have gone up. But interestingly, not a lot of those referrals are people that would not have qualified under the previous bill. There were a lot more people requesting MAID who would have qualified previously. But I think that people with less clear or more complex cases weren’t asking for MAID, because maybe they thought they wouldn’t have qualified, when they actually would have. So, we’re getting those cases and those patients. And then obviously we’re getting more requests from people whose death is not reasonably foreseeable. Both those groups of patients tend to be more complex than the patients we used to have.

And so, I’m finding that each case is becoming, on average, more complex and taking more time, which is the downside. But that downside is because people are appropriately accessing MAID who were not doing so before. So, it’s not really a downside, but more of a double-edged sword.

Thanks, Oz. That’s really helpful. And what you touched on was those misconceptions. You saw more people coming forward and applying, but many of them would’ve qualified under the old law. So, there was maybe some misconceptions about how eligibility applied to them, and their situation. And that leads quite nicely into my next question, which is about, what are the most common misconceptions about C-7 now that we have the new law in place? And maybe Helen, you can get us started with that, and then Oz, you can chime in with your thoughts.

Yeah, sure. So, I think maybe I’ll just start at the top with mental illness and MAID. I think there is some confusion around mental illness and MAID. So, from Bill C-7 we know that an individual whose sole underlying condition is a mental illness will not be able to access MAID until March 2023. And in the interim, there is an expert panel that’s been established by the government. And they will be looking at the appropriate safeguards and guidelines around accessing MAID for those with a mental illness. A related, I think, confusion to that is the question around dementia. So, we often get asked and probably one of our most frequently asked question is, can someone with dementia have MAID.

And the answer to that question is sometimes. So, some individuals who have dementia are currently able to be assessed and approved for MAID, they can take advantage of the final waiver of consent, which Osmaan spoke about briefly, in the event that they lose capacity between the assessment and the date they’ve set for their MAID. But there is some room for that. What is not available is what we’re calling an advance request, which would be a situation in which you describe a future state at which you would want to have MAID. And which is the one that I think most people with a family history or concern about dementia think about when they think about accessing MAID. So, those are probably the top one or two that we hear about. Osmaan, others that you’d like to share?

Yeah. I’d like to maybe expand on that a little bit. While it’s true that people whose sole underlying medical condition is mental illness, those people are at this point not able to access MAID, that doesn’t mean that people with mental illness can’t access MAID. So, if you happen to have had troubles with mental illness in your past, and you have other reasons to access MAID, that does not make you ineligible. It’s up to the MAID assessors to determine whether an active and uncontrolled mental illness is affecting or influencing your request. And then it becomes complicated. But having had a previous history, or ongoing history, of mental illness does not preclude you from MAID. So, I think that’s a big misconception. And then to touch on the dementia piece as well, in fact people with dementia previously did call qualify under the old law too.

And that was one of those situations where I think people are making requests that they could have made before, but weren’t. But you still have to… With dementia, it’s a bit more complicated in that you have to still meet all the criteria, which can be hard to do in dementia. But if you’re in the right part of your disease progress, you could still certainly access MAID. I think we’ll be getting onto advanced consent waivers in a little bit, so maybe I’ll leave discussion of advanced requests versus advanced consent to that, maybe. So yeah, I just wanted to touch on those things. A few other things that I’ve found to be the case in terms of misconceptions are, I think maybe people have been thinking that now there are no eligibility requirements for MAID and that anybody can access MAID for any reason at any time.

And that somehow MAID is a simple process. And that’s definitely not the case. It’s obviously a massive decision and a time-consuming process to go through in order to access. And I think appropriately so. So, that’s one of the other misconceptions that I’ve been seeing is, is people thinking that there’s really … If I want it, I can get it at any time and there’s no real barriers or safeguards in place, which is absolutely not the case.

Thanks, Osmaan. And what you’re saying is certainly similar to what we hear as well. People having some confusion about dementia, both under C-7 and under C-14, and some people thinking there are no requirements, or thinking that it’s way too onerous. So, there’s a lot of similarities there, for sure. And the next question is for you as well, Osmaan. What have you been hearing from your patients about the new legislation? I think you touched on a little bit of this earlier on, some relief with the waiver of final consent, for instance. Is there anything else that you could touch on?

Yeah, that’s by far the biggest one, is the peace of mind that comes with that advanced consent waiver. And I think I’m also hearing… I’ve kind of already touched on a lot of it, people not really appreciating the complexity of MAID and the safeguards that are still in place. But also, as I said, people seeking MAID earlier in their disease process, perhaps because of changes in C-7, which again don’t necessarily actually affect them, but they think they might have or do. So, those are the big things that I’m hearing from patients, these more earlier, but complex cases are coming to the fore as well. But yeah, I’m not really hearing too much else in terms of differences or changes between old and new C-14, C-7.

Thank you. So we’re going to switch gears a little bit. We’ve been talking about what the new law entails and how that’s affecting you as a clinician, Osmaan, and about the patient experience. So we’re going to talk a little bit about access. How has access to MAID changed since the introduction of the new legislation> And maybe we’ll start with Helen, and then Osmaan, you can jump in with your thoughts on that as well.

Thanks, Kelsey. We’ve already talked, I think, on a few of the positives. The waiver of final consent or Audrey’s Amendment and the ability to have one witness. Also coming out more of the pandemic than Bill-7, but the use of virtual witnessing and virtual assessments, I think has been helpful. So there’s been some positive changes. Another factor as a result of COVID is just the healthcare system overall, like clinician capacity. And I think Osmaan spoke a bit about more complex cases and longer time needed. We know the system’s overburdened for everyone and all clinicians. So, I think certainly some challenges around capacity have been evident in the first few months. That’s something that I think we hope will continue to kind of evolve as things go, but definitely COVID has put an additional burden on the system.

Thank you. Osmaan, anything to add?

Yeah. Capacity has been becoming more of an issue, despite our best attempts. And success at recruiting more physicians to become MAID assessors and providers… Unfortunately, at least in my area, on Vancouver island, we don’t seem to be keeping up with demand as well as I wish we could. As cases become, as I said, more time consuming and complex, each case is taking more time for us to evaluate. And we’re definitely seeing more people taking on fewer cases overall, by just numbers, maybe not by time. And so, unfortunately access is becoming an issue in terms of just finding a provider to take over a case or do the second assessment plus provision.

Thanks for sharing that, Osmaan. Certainly a lot of changes with the new law, and a learning curve, right? With getting used to what new requirements are when assessing for Track Two folks, especially.

I can’t give you numbers, but there are certainly clinicians who are supportive of MAID and are still doing Track One, reasonably foreseeable patients, who either don’t have the time or don’t feel comfortable doing Track Two patients. And that’s been a bit of a challenge, for sure.

[crosstalk] Go ahead, Helen.

Sorry. I think Kelsey, too, just to go back to kind of referring to the last comment, but also the minimum 90-day assessment period. I think there’s been some misconceptions. First of all, that it’s a 90-day wait period. So people sometimes feel that they’re being delayed. And in reality, that is a minimum 90-day assessment period because of the complexity of many of these cases. So it will seem longer, I think, to someone who’s waiting. The final point we have there is also about nurse practitioner remuneration. So, we talk about clinicians who are available and their workload and the time that they’re putting in. There’s a bit of a not fully tapped, shall we say, group of nurse practitioners who are able to work in the MAID space, but because they can’t always be compensated, either through their permanent role or outside the permanent role, there’s definitely a gap in terms of service there that we hope at some point will be addressed. And that’s a particularly large problem in Ontario.

Absolutely. Before we move forward to the next set of questions about the waiver of final consent, I was wondering, Osmaan, if you could clarify, because I’m seeing a few questions come in, the difference between a Track One and Track Two patient.

So, when we say Track One, what that means is someone with a reasonably foreseeable natural death. So, someone with terminal cancer or other illnesses that put them on a trajectory towards death that we feel is a reasonably predictable type of a scenario. Those are the people who have qualified since C-14. Track Two are the patients who are newly eligible. So, patients who do not have a reasonably foreseeable natural death. So, anybody with an illness or a disease that is not necessarily putting them on a trajectory towards death. And so, those are the patients who require the 90-day assessment period. Among a few other things, which I don’t think patients need to really worry about, more stuff that we have to worry about on our end.

Thanks, Osmaan. And on our end, and just based on some of the folks who come to us for support, many of those who find themselves on Track Too, we’re finding they’re younger folks who maybe have chronic pain conditions and that kind of thing, fibromyalgia. Are there any other examples of conditions that you think would fall under Track Two?

Yeah, most commonly are patients with chronic pain or chronic symptoms of some kind, that are not necessarily leading towards death. So for example, really severe arthritis of any type, rheumatoid, osteoarthritis, doesn’t matter. So you can imagine, any diagnosis that is severely affecting someone’s quality of life, without actually putting their life in jeopardy. So, mostly chronic pain, chronic fatigue, fibromyalgia, that kind of thing. And then there’s also the people who are just kind of overall medically complex, with maybe a whole bunch of diseases or illnesses that wouldn’t necessarily individually qualify, but are really affecting a patient’s life. I’m seeing a lot more of those types of patients. So, those are the types of patients I continue to refer to as people that probably would’ve qualified under the old law, but then we’re now seeing more of them now. And they can be either Track One or Track Two, depending on the specific circumstances.

Thank you. I think that clarity is really helpful as we get into our next set of questions, which is about final consent. And a waiver of final consent is only applicable for one track. And now that we’ve clarified that, I think that will help set the stage for the audience as we get into these questions. So Osman, I’m wondering if you could tell us a bit more about how the waiver of final consent process works, and where someone can get a waiver, and just how often you’re using this now that it’s available for people.

Yeah, so I think this is a very important point. So, the waiver of final consent is for people who are at risk of losing capacity, who have decided to set a date for MAID, as firmly, or as close to 100% sure, as you can ever be with someone. And importantly, who have set a date for MAID at some point in the near future. And some point in the near future is not defined. The reason why I highlight that so much is because what’s important there is the patient has set a date, and so they’ve made their decision to access MAID. Whereas, if you set some nebulous state in the future, and then sort of think, okay, well I’ll access MAID before that. If such and such happens and I lose capacity, someone else can decide for me.

That’s the situation of what we call advanced requests, which are not allowed. So, it’s really only for patients who have gone through the full qualification criteria, they’ve decided that they absolutely want MAID, and there’s no one else required to make any decision of any kind. And they’ve set a date for some time in the future. And it’s just in case, in the interim, they lose capacity to give that final consent, right at the end. Does that make sense? I feel like there might’ve been a second part to your question. I’m not answering.

No, that all made sense. That was great. So, the second part… Kind of three parts, but the second part is a little bit more about the actual filling out of the form, and what that entails and who is involved and that kind of thing.

Right. So, the form is essentially a written agreement between the patient and the MAID provider. You can’t have… Unfortunately, and this is something that probably needs to change. It can’t be used by another provider. So, say for example for some reason, a different practitioner has to step in to provide MAID, which is rare but does happen, based on life circumstance. No one else can use that waiver. So that’s what the agreement is. In terms of logistics, they’re a bit different province to province. There’s no standardized national waiver form or anything like that. And the waiver forms will have different levels of… like for example, the form in BC has, I think, six places for a patient to initial.

Whereas, I think a form in, I want to say Nova Scotia, is just a single signature. So, how exactly the waiver works is a little bit different from place to place, but they both cover the same thing. There’s really no need for patients to access the form themselves. As I said, it’s something that you only do right when you’re setting a date for MAID. So, you obviously had your assessments and you have your provider lined up and everything’s sort of been arranged. And so it’s something that your provider should bring to you, not something you should be accessing on your own. There shouldn’t be any need to do that. So, for my practice, when you say… As I said, for people who are at risk of losing capacity, and I did that in quotation marks on purpose, because in my view, anybody whose death is actually reasonably foreseeable, they are at risk of losing capacity.

So, since C-7 I fill out a waiver on every single patient who is setting a date, because you just never know. And things can happen suddenly, things can happen unexpectedly. And when you’re at an advanced stage of any disease, your risk of losing capacity, because of some random thing that may or not even be related to your illness… I don’t know if I’d say that it’s high, but it’s a real risk. And so I personally will fill out an advanced consent waiver with every patient who I’m setting a date for. Unless they choose not to, for their own reasons.

Thanks, Osmaan. Are you finding that most are… when you bring it up, are interested in filling out the waiver?

Absolutely, yeah. I haven’t had anybody say no. I’m just saying the only reason I can foresee not filling it out is if someone says they don’t want to.

Thanks, Osmaan. Helen, did you have anything you wanted to add about the waivers?

No, I think that sums it up. Just important for people to go back to the beginning of this discussion, important for people to remember that it only applies to Track One. So patients whose deaths are reasonably foreseeable.

Thank you. Okay, so we’re going to move on to another issue here, which is… What is next? We’ve seen a lot of change and movement in the first part of the year, with C-7 going through the process, and C-7 coming into effect. And here we are six months later. But there’s still plenty to do, and a lot of barriers that still unfortunately exist for people. So, Helen could you get us started with telling us a little bit more about what still does need to be done, and what needs to be accomplished when it comes to MAID. And as an organization, what Dying With Dignity Canada hopes to see.

Yeah, for sure. So, for those of you who were following this issue closely, immediately after Bill C-7… I shouldn’t say immediately, not too long after Bill C-7, they struck what’s called a joint committee. So, a committee of the House of Commons and the Senate that was intended to perform the parliamentary review. And the parliamentary review was the five-year review that was first referenced in Bill C-14 when MAID became legal.

So, in Bill C-7, they went back and said yep, we should get that parliamentary review done. In June, they struck the committee, the committee had a couple of meetings, and then as we know the writ was dropped and the election was called. So, that committee ceased to exist at that point, and the review stopped. What that review is intended to cover are the things you can see on the slide. Advanced requests, which we’ve spoken about quite a bit already today. MAID for mature minors. The state of palliative acre in Canada. Protection of Canadians with disabilities.

That came out of the discussions around Bill C-7 relating to that reasonable foreseeability clause, the impact it could have on people with a disability. And then finally mental illness as the sole reason for MAID, which we’ve already talked about. So, with the election, until next week when we find out the results of the election and which government is going to be in power next, there isn’t any progress being made there. What Dying With Dignity Canada will be very strongly advocating for, immediately following the election, is that re-start of the parliamentary review. That the government go back, re-establish the joint committee, and get the review started again right away.

The times are fairly tight when you look at the deadline on mental illness, March 2023. While there is an expert panel working on that, that is also a part of the parliamentary review. So, there’s a lot of pressure, I think, for us to get right back at it, immediately following the election. And what we’ve done leading up to that is during the course of the election period we’ve been really asking our supporters to get out and talk to, or write letters to, their candidates. It’s important for candidates in your riding to know what’s important to you. And once the election’s over and your MP is in place, whether they’re new or returning, again they need to know what’s important to you. So, look for a lot of action on that immediately following the election results next week.

Thanks, Helen. So, we have one final question for both of you, before we head into the audience Q&A. So, just a reminder to type your questions into the Q&A box at the bottom of your screen. We’ll try to get to as many as we can. So, what changes do you anticipate in the next year or two when it comes to MAID and end-of-life choice and care? And we’ve talked a bit about some of the reviews and things that are absolutely… have already been established to be something to move forward with. Is there anything else that we anticipate seeing? Osmaan, did you want to start?

I think beyond the list that’s in front of us right now, I’m not sure. Those are pretty big topics, and the needle moves slowly. So beyond this list, I’m not sure that I can think of anything that’s probably going to change in the next year or two.

Thanks, Osmaan. Helen?

Yeah, so I think just to maybe manage expectations a little bit, I’m not sure we’re going to see all of those changes within the next year or two. I think what’s most important to us, and what we hear is the most important to you, is advanced requests. So, that’s one that we really want to see some progress on. I think it’s also important to remember that because healthcare and MAID are delivered provincially, there are other issues going on around the big legislative issues. So, as an example, forced transfers, or the inability of some individuals to get MAID in a facility that is publicly-funded. But perhaps for religious reasons may not allow MAID on site. Those are other thins that we’d like to change. And there’s a number of those types of things that are on the DWDC agenda and that we work on. They don’t result in huge legislative changes, but they result in changes to practice, and changes to what people are able to access, and how the MAID experience is for Canadians who are suffering.

Okay. Thanks, Helen. So, we’re going to move to audience questions now. And just to remind everyone, we are seeing some questions that are quite personal in nature. And we absolutely would love to follow up with you and get your questions answered and direct you to whatever support you’re looking for. So, please just email us at support@dyingwithdignity.ca and we can provide some one-on-one direct support to you there.

So, lots of really interesting and great questions, so thank you to our audience members for sending those in. The first question, “What is the definition of reasonably foreseeable?” And I know this has been a very common topic over the last several years since C-14 came into place. And I’m wondering if Osmaan, as an assessor and provider, you could speak to how that is determined and what those questions are to decide if somebody is considered reasonably foreseeable or not.

Yeah, so that’s a very good question. The term reasonably foreseeable was in Bill C-14 and had never been used in any clinical context before that. So, this was something that needed to be clarified, and has not been clarified legally, but has been clarified clinically by CAMAP, which is the Canadian Association of MAID Assessors and Providers. And the definition that we’ve come up with is, does your illness or disease put you on a trajectory towards death that is reasonably predictable, is kind of the word that we used.

So, in other words, can a physician look at the patient and the patient’s disease and the particulars of the case, and come up with a reasonable prediction of how this patient will die, essentially. And so, just to give an example, someone with lung cancer, left untreated it’s pretty straight-forward to predict not necessarily when, but how that patient might die. The tumor burden gets too big and the patient can’t breathe anymore, or it spreads, or that type of thing. What’s important to know about that is that there is no time-limit on that.

And so, you could reasonably predict someone’s death in the order of years, and that’s still reasonably foreseeable or reasonably predictable. It doesn’t have to be reasonably foreseeable or predictable in the next three months or six months or one year. There’s no time limit on that. But then, for example… And this is where the difference between Track One and Track Two comes in, if you have someone with, let’s just say, severe and debilitating back pain or arthritis or something. It’s hard for someone, or for a physician, to then predict, well how is that back pain going to lead to someone’s death? And therefore that would not be reasonably predictable and therefore not reasonably foreseeable.

Thanks, Osmaan. And correct me if I’m wrong, but I think, too, there’s also looking at the full picture of the individual. So, there might be other factors that come into play, like the back pain of a 30-year old might be considered differently than the back pain of somebody a couple of decades older, who also has maybe another condition being added to the mix of what’s being assessed. So, I think the point we want to get across to some of our folks on the call today is that a lot of conditions [inaudible] people’s health situations, often not yes or no. There’s a full look at everything that that person is experiencing.

So, with some of the questions coming through, folks are asking, “If I had X Y Z, would I qualify?” It’s really difficult to answer those question without a full assessment. So, assessors are available all over the country for those who are interested in pursuing that. So, more questions are coming through about dementia, lots of questions about dementia. And again, Osmaan, I’m going to send this one to you. But I’m wondering if you could share a bit more about what factors might cause a person with a dementia diagnosis to qualify, and whether they would qualify under Track One or Track Two.

So, dementia is considered a diagnosis that is at an advanced stage [inaudible] irremediable, and puts the patient on a predictable trajectory towards death. So, in isolation, if that’s someone’s only diagnosis, without any other complicating factors, dementia then qualifies, and did qualify under C-14, as a diagnosis that would qualify for MAID. And CAMAP has written a paper on that as well.

So, there’s that, but obviously, in patient with advanced dementia, who has issues with cognition and memory and all of those types of things, they might not qualify for MAID based on their lack of capacity at the time of their assessment. And so, regardless of all of these changes, the patient has to have capacity at the time of their assessment. And so, dementia is a tricky one, because if you’re too late in your dementia diagnosis or progression you wouldn’t qualify. But people early in their dementia journey can qualify.

Thank you for clarifying that. That’s very helpful. So, the next question is for Helen. “Is there a risk that C-7 will be overturned with a change in the government leadership?”

Yeah, I think it’s important, I want to know first that as a charity, DWDC is a non-partisan organization and we’re not able to directly comment on positions, or take positions I guess, with parties. I think it’s fair to say, though, that yes, depending on the party elected, and what their position is, changes to the bill could be proposed, or changes that would result in changes to MAID legislation could be proposed. And the law could change. I think much as C-7 moved the legislation forward, and made changes that we think helped alleviate suffering and helped people to have more autonomy, and helped people to be able to better access MAID, in theory a bill could go the other way and certainly that would be something that we would be advocating very strongly, I can’t even say how strongly, against. Because we want to see the legislation continue to move forward, not slip backwards.

Thanks, Helen. The next question is for you, Osmaan. So, you mentioned this earlier in the presentation today, that in the law there’s no maximum time on the waiver of final consent. It doesn’t specify that the MAID date has to be set 30 days, 60 days, nothing like that, in advance. But in practice, what are you seeing with your forms or the forms that your colleagues are… Is there usually a standard range of dates that clinicians are comfortable with? Or is it varying from person to person?

Yeah, I think for most people who decide that they want to have MAID and they definitely want to access it soon, they’re setting dates not too far in the future. So, logistically speaking, usually it’s easier for us to set a date within a week or two. So, most waivers are probably in that time-frame. Unless someone has a particular event that they’re trying to hold onto. And then maybe we do it a little bit in the future. I can only say that for my practice, I don’t review or see anyone else’s waivers of final consent. So that’s my practice. I would be hesitant to have a waiver that is too far in the future, because that can make things quite challenging, unless there’s a particular reason for that date. When we’re talking about… I think some people have tried to use the advanced consent waiver as a way to make an advanced request. And we really try to avoid that for a lot of reasons.

Thank you for that. That helps understand how those documents are being used. So, I have a question. Let me just try to find it here. So, what is the reason that the waiver only applies to Track One patients? I don’t know, Helen, if there was any discussion when the law was going through the process about that. Or if you had anything to share.

Yeah, no. Kelsey, I don’t think that actually came up, that’s actually a great question. I don’t think that did come up as a discussion point during the senate or committee hearings. Perhaps, to Osmaan’s point about not turning a waiver into an advanced request, maybe it was some thinking along those lines, of proximity to death, and was reasonable foreseeability. But it could be as simple as, given reasonable foreseeability, the removal of that clause is new. And they didn’t want to really attach anything else to it. We’ll look into that and see if we can find a bit more of an answer, because I’m sure that didn’t come up in any of the public debate that I’m aware of.

I can maybe answer that from a clinician point of view. The decision was, I guess technically a political one. But it does make sense to me in a way. So, if you think about someone who’s a Track Two patient, essentially what you’re saying is their situation is not getting worse or declining. So, if that patient, when they were assessed, had capacity, and truly they were not on a trajectory towards death, then when it’s time for them to have their provision, they also should be able to maintain capacity. If it’s a situation where they are on a trajectory towards death, they should be Track One anyway. So, someone who could potentially lose capacity is almost certainly going to be Track One in the first place.

Well, that makes sense. And that really ties back to Audrey Parker, who is the public face for a lot of that discussion. And the reason why was because she was concerned about that capacity loss and didn’t want to have to make that really difficult choice, to move forward earlier than she would have liked. Or risk losing out on her MAID option. So, as Osmaan was saying, that wouldn’t be the case with a Track Two person. There’s no risk of them slipping into a state where they didn’t have the capacity to make that consent at the time of their death. So, another question for Osmaan. So, the 90-day assessment period for Track Two folks, what happens during that 90-day period? What could people going through the process themselves expect? You, as a MAID clinician, what are you during those 90 days?

So, during those 90 days, it’s essentially an information-gathering period. It’s 90 days from the first assessment, so you need to have a second assessment. The order of that doesn’t matter, so the first assessment can be the provider, it can be the first assessor. So, there’s that. But the big thing is that we’re required to then consult with experts in the field of the issue or the primary diagnosis. That doesn’t necessarily mean that the patient has to then have a full consultation with a provider that may have a wait-list that is in some cases a year or two long.

But the clinician is required to have a clinician-to-clinician consultation, essentially saying, okay, this is the situation, this is what’s been tried. Are there any other things that can be tried, apart from accessing MAID? Are there any other options for this patient? Are there any other treatment modalities we haven’t tried? So, it’s essentially to give us time to determine, to figure all those things out. Have all the appropriate tests been done, and all the appropriate treatments been done? Have all the appropriate specialists been accessed? All of those types of things. That’s what we do during the 90 days. Oftentimes patients won’t really need to do anything or be involved with anything. But depending on the situation, and the complexity of things, and how many things maybe haven’t been tried or tests haven’t been done, or all those things, those would obviously impact the patient in terms of things to do during that 90-day period.

Thank you. And just to clarify. So a lot of the assessment, I guess, regardless of the track, there might be a discussion about other treatments or options that the person may have. But is it true that they are under no obligation to say yes to those treatments, or tests, or whatever?

So, a patient needs to have been offered all available treatments. And to try any and all treatments that are acceptable to them. So, if a treatment is offered and deemed not acceptable, to the patient, so the patient decides they don’t want to try that extremely risky surgery, then that is enough. But it’s very important that the patient be offered those options. Because to provide MAID to someone who hasn’t been given the chance to try anything and everything, I think would be inappropriate, right? So that’s [inaudible].

And that ties into the idea of informed consent, and knowing all the options, risks and benefits. So, that’s a major part of patient rights, regardless of whether it’s information for MAID or other choices.

And that’s done with every assessment. Track One or Track Two. But in Track Two we’re required to have a full discussion with a specialist or expert in the area. Whereas, with Track One patients, it’s sufficient to have all that information in past consults, or whatever. Yeah.

Thank you. This question’s for Helen. So, we talked earlier on about what’s upcoming with the parliamentary review, and other pieces of the legislation that will be examined further. And someone’s asking, what Dying With Dignity’s position is on mature minors.

Yeah, so Dying With Dignity has a position statement, which I believe is available on our website. We can potentially share that afterwards. We do believe that mature minors should be able to access MAID if they choose to do so. There is a history in Canada of mature minors being able to make other healthcare decisions, including life-saving, or ending I guess, conditions. And our position is in line with that. Certainly, there would be a number of parameters around that, including the age of the minor, involvement with the family, what clinician level would need to be considered.

But generally speaking, yes. I will also say, though, that it’s not something that we hear from people on very often. But it is something that was identified as part of the parliamentary review, and as such, we have formed a position on mature minors.

Thank you for that, Helen. A question for Osmaan. And we touched on this a little bit earlier on in the talk today. But it sounds like MAID, especially for Track Two individuals, is quite a bit of paperwork. And the assessments are obviously taking 90 days. How do you manage everything on top of your other work as a clinician? And what supports are in place for you to help you with that?

So, every place in the country is different. Some places, I know clinicians have absolutely zero support when it comes to that. We’re pretty lucky in BC, at least on Vancouver Island, where the Vancouver Island Health Authority has a MAID coordination office. So, they’re very helpful in terms of doing logistical stuff, like tracking down consults, arranging things with patients, getting all the paperwork in the right place, all the documentation in the right place.

And sort of generally helping us with those types of things. Obviously we’ve got to do the assessments, and we’ve got to find our own experts to talk to in various fields. But they try to help with that as well. And then at least, again, in my region, we have regular meetings. The MAID providers, we have regular meetings, where we’ll discuss… Obviously without sharing patient-specific data, to keep people’s privacy front of mind, we talk about various challenging cases, so that we can identify issues and barriers, any questions we haven’t thought of or things we need to address. And so I get a lot of support from my colleagues, in terms of those types of things.

Thank you for that, Osmaan. And there is just a clarifying question that came through. I think this is in relation to the waiver of final consent. So, just to clarify for this person, in filling out the waiver you need to choose an actual date. And you can put some other details as far as I know, Osmaan, about where your condition might be at that time, or what you may want, but there has to be specific date set, not so much a set of criteria, related to when I lose capacity… The assumption is that you have lost capacity and that’s why we have this waiver in place. It’s just setting a date to work from. Is that accurate to say?

Can you maybe say that again? Maybe in a different way?

Yeah, sure. So the person’s saying, “When choosing when MAID would take place, must it be an actual calendar date, or could it be tied to an event?” The event being a state of deterioration in one’s health.

No, it has to be an actual date. The reason why that’s so important is it comes back to the fundamental question of who is deciding that this person is going to have MAID at this time. So, when a patient sets a date, they’re deciding for themselves. If you say, well, I want MAID when such and such happens… That would be great, but unfortunately then what you’re doing is the decision to have MAID falls to someone else. And that’s the big difference. No one else can decide on your behalf, whether it’s the clinician or your family, whether you now should have MAID based on what you’ve said in the past. The decision-maker has now changed. And that’s the big distinction and the reason why there’s this difference between advanced consent and advanced request, is essentially who is the decision-maker.

That makes sense. I think that really helps clarify that the reason for the waiver of final consent is to make sure that the power in that… You know, when this happens it’s still in the hands of the person, the patient, accessing MAID. And it’s quite clear as to what they want and when they want it. That’s helpful, thank you. So, I see there are a few questions. They’re not specifically related to today’s topic. So if you do have outstanding questions, not related to the new law, you can absolutely email us and we’re happy to point you in the direction of information or resources. Or, like I said, any personal support that you’re looking for. But I think we’ll leave it there for today. And I’ll just invite our two speakers to share any last minute information or thoughts with our group today, before we wrap up. Osmaan, did you want to start us? Anything to add?

Don’t think so. I think we’ve covered most of the things that I think are important to know about C-7. So, I don’t have anything else to maybe… I have no words of wisdom to leave anybody with.

Well, thank you for being here, Osmaan. And your perspective as a MAID clinician has been so helpful for our audience today. So we really appreciate it.

Oh, you’re very welcome.

And Helen?

I would echo Kelsey’s thanks to you, Osmaan, for coming today. It’s always, I think, helpful for people to hear directly from a MAID assessor or provider about the process. And I just want to thank everyone for being with us today. We have thousands and thousands of great supporters and it’s wonderful that you’re here to continue to learn and share and talk to us about MAID and end of life choice. So, thank you all for being here.

Thank you all. We do have another webinar coming up next week. For those of you who are interested but haven’t registered yet, the details are on our website. And that will be on the 23rd. And the topic is related to the future of Alzheimer’s and end of life care. So, we hope to see you next week and in the meantime, everyone take care and thanks again for joining us.