Themes and selected quotes by PATH framework level
| Level* | Theme | Illustrative quote |
|---|---|---|
| A. Client-centred services | Educate patients and public | “We’re still a very death-denying culture and people just don’t know very much about MAiD or palliative care. And so there really could be better education for the general public on both.” “How can someone know what they want when they don’t even know what’s available to them, or what it is? So a public education piece is important as well — what are my options?” |
| B. Health operations | Educate providers | “I think training and education is essential […] There needs to be training of all providers. I don’t think it’s the MAiD providers. I think it’s all health care providers need to understand exactly what hospice palliative care can do. By the time it gets to the MAiD provider, I think it’s probably often too late.” “I do think that physicians would benefit from some sort of discussion guide or some supports on how to address the issue. If it comes up, if there is a situation where they do feel like it might be an option, how to raise that. So I think there needs to be some support around that. So it’s not just leaving physicians on their own to have those conversations. I think if they feel supported by their colleges, their institutions, we might be at a better place for that.” “I think there’s misunderstandings on both sides. There’s misunderstandings about MAiD, there’s misunderstandings about palliative care. I think for a lot of clinicians not involved with MAiD, they don’t really understand — not only like the medical and the legal side of things, um, in terms of like eligibility and safeguards and what an actual assessment looks like. I think some people think that it’s just a decision a clinician comes to easily, which is not the case.” |
| Clarify institutional policies and guidelines | “It’s the consistency. It’s actually developing policies and mandating how palliative care works in conjunction with MAiD. I’m assuming from looking from the ground level that there isn’t a lot mandated there in terms of how those 2 pieces are supposed to interact together. So I think actually establishing some policies around that and then making sure that the patient and their families and organizations like us are aware of what those policies are.” “There are obvious examples where an institution’s policies to preclude the assessment or someone’s — even the determination of eligibility, makes it extremely difficult for that person and their caregivers, their families and the professional care team around them. And there have been discussions, there have been policies and so forth and institutional policies and otherwise, regional health authorities and so forth that can get in the way of people, I think even, even determining their own eligibility for such a service, so what can be done to stretch that a little bit further and to make sure that everyone’s needs are addressed?” “Where it’s very important to have different regions and different agencies and even different providers within those agencies have autonomy, there needs to be some standardization. […] If somebody has their own personal belief system and their own barriers to accessing MAiD, which is totally understandable and totally respectable, but there should be, in my opinion, a standardized insistence, a legal requirement that their job is then to hand off to somebody else who can handle it […] and I think there needs to be some legal enforcement around people who create barriers.” | |
| Foster cultural safety and collegial relationships | “I really think the first step is getting people in the same room. I really do. I think if you put the palliative care teams and the MAiD docs in the same room and just have a respectful conversation, that is the first step everywhere, because there’s so much in common. So, so, so, so, so much in common.” “I think we have quite a good relationship with our palliative care teams in Province X. I think partially, I mean, at least in the City X area, like I used to work there, so I know all of them and they know that I’m not like a crazy person just wanting people to have MAiD, like they know that I understand what palliative care is, because I feel like that was some of the fear that people would just be getting MAiD left, right, and centre. But I think it helps for them to know that I understand and value palliative care and integrate that into part of the care coordination […] So if we saw patients who we thought might benefit from palliative care and sent them a referral, they’re like, wow, this is great — like this is how it should be working. And so that’s improved our communication. I’ll often call the palliative team to give them an update. They call me all the time to give me updates.” “I think that that trust is important because if you’re a palliative care clinician and your patient wants MAiD and you don’t know who’s on the other end of the line, or who’s over there coordinating this, or who’s involved, there’s just a lot of fear that people will get the wrong information, or that they’ll somehow be coerced, or that people won’t think to refer someone to palliative care when they should have, or those kinds of things. Once you know people and you realize that they’re compassionate and they’re caring and they’re really just trying to meet the need of the person who’s asked for this service, I feel like that fear goes away.” | |
| Create multidisciplinary MAiD teams with a clinical coordinator | “Having a palliative care person embedded right within the MAiD team, I think would be helpful. And having that would be somebody who could have that big picture perspective on, are we doing all we can to alleviate people’s suffering? Are there pieces or gaps that we could be addressing in terms of services that might help alleviate suffering? And I know most of the patients I talk to who’ve requested MAiD don’t know about palliative sedation as an option. And so I always introduce that as an option. […] So again, you’d have that palliative care expertise right within the MAiD team that could serve a bunch of different purposes.” “One singular team, I think that would be good from a couple of perspectives. I think it would be good for consistency in terms of service delivery, but I also think that it would be good for support within that team because I’ve had the opportunity to connect individually with some of the doctors and their team members who go out and perform MAiD. And it’s a beautiful service that they provide, but I’m sure it weighs on them and I’m sure it’s difficult in its own way. And so having their own team member who consistently does this, and that would allow them to develop their own internal supports and have peer support as well. So I think that that would benefit everybody.” “I think the multidisciplinary team works well because hopefully they get expertise, and they have multiple perspectives in terms of disciplinary affiliations.” | |
| Cultivate compassionate and proactive leadership | “There’s the right combination of the right people at the right time who started this journey in 2016, all of the health authorities, the provincial government, everybody, the nondenominational — everybody wanted to be a part of that MAiD conversation, if not for ‘how do we do MAiD in the right way,’ for ‘how do we make sure that the whole system can function overall together?’ And there was a good ingredient mix of the people in the leadership […] just having a system and leadership committed to making this a continuum experience was really critical.” “There may have been room for more explicit communication around what the plans were […] and more effort could have been made to engage us directly and let us know that our concerns would be addressed.” “They weren’t necessarily leaders with portfolio, but they were recognized leaders and who had done this kind of work before, around other contentious issues. So folks who are highly principled and always maintain that compassionate focus were able to create this policy and procedure. Other stuff was built in. So yeah, it’s a multidisciplinary team that you know works and then they — what was the other one you said, but they weren’t the important — they were consequences of them, of the leadership and compassionate culture.” “I was impressed at our department. […] They were pretty proactive about saying, ‘we have no idea how many people, if any, are actually going to request this, but we will make it available.’” | |
| C. Health systems | Provide standard practice guidelines within professional regulatory bodies | “What works well, I think is, for every group, whether it be a unit or a service or whatever, to have an open conversation about how they feel about MAiD and to agree that they need to prioritize patients. And so they as a group have a responsibility to ensure that MAiD is available in a seamless way. Not every individual has a responsibility. And I think that’s a really important shift and that’s how they approached it in [province]. And I think it’s why it’s worked so well is, the profession feels that it as a profession has an obligation with respect to MAiD, but no individual physician does.” “Policy wise, I think governments need to maintain a policy of noncompulsion. They don’t make us do it, protect the conscience rights — but even there, with conscience rights policy, I think they’ve taken a good step in saying that yes, every doctor has a right to refuse to participate. However, that right is limited by your obligation to tell your patient where to go, to get the information.” “It’s very challenging to develop policy of such a personal nature when every story is different. So you need to have standards, criteria, procedural safeguards, or standards within the practitioner regulatory stream around delivery. But there should be a recognition that not everyone is the same in terms of how they can tolerate suffering. And so there needs to be a recognition that there has to be some flexibility as well.” |
| Determine the role of religion in health institutions | “I think just the philosophy sort of behind the 2 is one of the biggest challenges that whether they can coexist in the same facility. Teaching hospitals that are not sort of religiously based may be able to embrace both services, if we can couch it in those terms, more freely than others that have a religious affiliation, or have had in the past, and sort of carry on that philosophy or approach to providing services. So some places have divested or diverged in terms of where and how those services would be provided; others are under the same sort of umbrella or roof, either physically or philosophically.” “I think there’s a lot of great palliative care programs that are housed in religious-affiliated health care facilities. And then people are stuck with, well, I want palliative care, I need palliative care, but I also might want MAiD, so what do I do? Do I like not go to this institution because I know that when it’s time for me to have MAiD, I’m going to be moved around or I’m going to be denied access, or it’s going to be too difficult for me to go through the process? I’m afraid to bring it up because I don’t know what the reaction will be. Will I be treated differently if I talk about MAiD in a facility that I know doesn’t allow it on site? So I think that’s an issue that ties into the institutional barrier piece.” “I think it should be a matter of choice for the hospice palliative care. If they feel that they don’t have the supports in place to support that, it should be their choice. I think that they have to refer, but I don’t think that they should be forced to do something like that or have those dire repercussions. There’s lots of services that cannot be done in hospice that could be done in the hospital. So why is that any different?” “I obviously felt that Health Authority X behaved very unreasonably there. They adopted a very heavy-handed, legal approach rather than being pragmatic and communicating. And the hospice’s perception was that we don’t have a problem with MAiD at all. We have a MAiD-providing hospital, literally the other side of the car park […], so you can easily have a patient who’s been in the hospice, who if they decide they want MAiD, can easily be taken next door to have MAiD provision. So the hospice staff were not saying we’re against MAiD. They’re just saying, ‘we think it’s better for our patients if it happens elsewhere, otherwise people will associate coming to the hospice with being killed and it’ll be a destination for people to go to be done away with.’ And we don’t want that to be the perception. It wasn’t really a religious thing, I don’t think.” | |
| Conduct broad and inclusive consultation and planning | “It’s the complete failure [not] to allow for the Indigenous voice to be part of the decisions that had been made. And those decisions have rendered a rather unfortunate series of confusion, complications, or other implications on the Indigenous community or the Indigenous client. […] Who are you gonna invite to the table? […] Are you going to bring in the health director, the nurse, the doctor, the social worker, or even the religious orders, the chaplains, the deacons, everybody who needs to be brought to the table, everybody who touches, or has something to do with somebody’s life? And that also includes the youth voice. The youth tend to be the forgotten sector. And I said, unless you prepare the youth properly, they are the ones that are gonna look after us. […] We need to provide them with the information so that they will have enough ammunition in the struggle of what’s going to be coming.” “So with good wisdom, the leaders of our system said, look, we need to collect people who have different views about this, from all spectrums, as you talked about earlier, so that we get it as right for many people in Canada. It’s not just by advocating for or advocating against — how do we help those people; it is now gonna be a legal thing. We need to put it in place.” “You need to have the right people around the table. And I think people who have a vested interest in, who are strong enough to withstand the rigours of having these complex conversations need to be at the table to voice their opinion so that we can come up with the best solution that fits all, because one approach or the other is like, it’s just not going to fit everybody. And you’re not going to be able to make 100% of the people happy 100% of the time, but you do what’s in the best interests of as many as you can, so that we’re not exclusionary, we’re not discriminatory in delivering these kinds of services …” “I get the sense there wasn’t really any preparation for it. [Laughs]. It sounds like most of the team just said, ‘I’m interested in this,’ it was handed to someone as, you’ll be the contact person for MAiD, and then eventually just kept growing and it became too big for them.” | |
| Increase funding for MAiD, PEOLC, and coordination | “It’s boring to keep hearing everything reduced to money, but the reality is [laughs], we’ve got to fund the system. If we want good degrees of coordination, then you have to have funding in place. Because at a coordinator level, you need some consistency in services. And we don’t have that critical funding for palliative care in any setting, not just hospice. And so you don’t have equitable service, equitable access. So how do you coordinate a service when you’re not sure if all of the providers in a certain region don’t have the ability to do palliative home care because they don’t have any nurses available who are trained properly?” “I don’t know the specifics on how many hours they can bill for it, but most of them say it’s very much not reflective of the work involved. Because I think the billing is more so just for when you’re there doing the assessment and when you’re there doing the procedure. So it doesn’t include reviewing the case file, calling the family practitioner to get more information, writing the orders for the IV insertion and the meds, and like all the other pieces that they’re involved in. Most have said that the payment thing isn’t really a big barrier for them, because it’s not generally why they’re doing it. But it just adds to kind of the suckiness of it and not feeling valued.” “I think there’s possibly a bit of resentment in the palliative care field that MAiD has received attention and funding that palliative care has been struggling for, say, 20 or so years to obtain in order to be recognized for what it does and get the appropriate funding that it needs.” “We’re not well resourced for assisted dying in terms of our assessors. Often, the reality is that a patient might ask for MAiD, they might only have a week left in their natural life, and we can’t get them assessed because we just don’t have the resources for it.” | |
| D. Intersectoral initiatives | Ensure oversight and standardized practice across Canada’s health care systems | “I think because we live in such a large country and united under the federal government in one way, but then so chopped up because of the provincial, territorial health differences, and then adding in more complications of long-term care homes and their own policies and such from province to province: it’s adding some additional complications. I don’t think there’s one solution or one event that will change everything. It seems like because of how things are structured and the different places where people at end of life could be — hospital, hospice, long-term care or retirement home, wherever — that’s causing some problems.” “I do believe that there’s an opportunity for the federal government in particular to show more leadership. […] There’s this great disconnect where, on the ground, I know with the hospices, it’s like, well, what are our rights? What are the legislative nuances from province to province?” “It would be great if just nationally they could say, like, here’s the legislation. It’s that translation between legislation and operationalization and it seems to have to go through a number of different steps and everybody seems to have to have their finger in it. And if we can say it’s national legislation, I don’t know, I just don’t understand why there needs to be this, then okay, now we get to the provinces and the territories and they have to translate it for themselves. And then they have to come up with their own thing. Like, if we made it national, except I know that if we tried to make it national and nationally, they go like, okay, here are all the forms. And here’s the process. Each province and territory would probably go, that’s not going to work for us. We’re special. So I don’t know if there’s an answer to that.” “In Canada, the health care services and actually the administration of justice is carried out at the provincial and territorial level, they have the responsibility for it. The federal role is a bit more circumspect in that our role is to share information, to support research, to create policies, yes, but in the broad sense where, for instance, the framework on palliative care in Canada, our aim was to create as broadly as possible, so that provinces and territories and organizations and individuals and other advocates for improved care at end of life could see themselves in it and could take the relevant parts and say, all right, to apply that, to apply that approach in our area, we would need to do this.” “I know in some provinces, all the MAiD requests are handled in a centralized way. And then oftentimes there’s a palliative care team that’s feeding into this centralized provincial system as well. So I imagine those places, it’s probably much easier to have those discussions. And then the same with hospitals — there’s a MAiD team and a palliative care team, having those sit-downs. But then I think there’s some provinces where things are a little less centralized or not everybody is going through a centralized system and it might be more difficult to have those conversations about how to take one person, one patient, and ensure that they’re getting the access to everything that they need access to, when it is more, like, patchworky.” |
Note: IV = intravenous, MAiD = medical assistance in dying, PEOLC = palliative and end-of-life care.
↵* Client-centred services refers to focusing on the needs of clients, families, and the broader community, such as considering clinic hours to improve access, more efficient referral systems, or access to services to enhance care. Health operations refers to health operations planning at the organization level, focusing on the delivery of services (by ministries of health, nongovernmental or local organizations, and private-sector agencies) and the allocation of resources, time, money, or expertise. Health systems refers to coordination at the national level that includes broader governance and capacity issues, such as joint planning of the policies, processes, and infrastructure that make up the overarching health systems. Intersectoral initiatives refers to initiatives that include intersection with more than 1 system (such as the health and legal systems).