Developing robust systems for Track 2 MAID in Canada: A qualitative study

Abstract

Background:

Developing robust care systems to support the evolving landscape of Medical Assistance in Dying (MAID) in Canada has proven difficult. The complexity of applicants applying under Track 2, in which a reasonably foreseeable natural death is not required for eligibility, has challenged the capacities of systems that were initially developed to care for Track 1 applicants.

Objective:

To identify structures and practices described by healthcare providers involved in Track 2 care as key to developing a robust system of high quality and safe care for persons applying under Track 2 MAID in Canada.

Design:

A qualitative study informed by the principles of Interpretive Description, a pragmatic research approach developed for health disciplines.

Methods:

Fifty-five healthcare providers, MAID program administrators, and key informants participated in semi-structured interviews. Interviews were conducted over Zoom™, audio-recorded, transcribed, and analysed using strategies outlined in Interpretive Description.

Results:

The work of Track 2 care was described as complex, emotionally-laden, risky, and in some regions, inadequately remunerated. MAID coordination centres were effective for Track 2 care when they were team-based; had a structured intake that supported assessors and managed the expectations of applicants; and provided education and navigation support for applicants and family. The coordination centre role was particularly critical when applicants had no primary care provider. The availability of prospective interdisciplinary case consultation was considered essential for optimizing care in the context of Track 2 applicants.

Conclusion:

The assessment for, and provision of, MAID is unique in healthcare. It is the only federally legislated healthcare act, and it is irreversible. It is also morally contentious, particularly in the case with Track 2 where applicants’ years of life lost may be significant. The safe and effective implementation of Track 2 requires a robust systems approach that to-date is available in only some regions of Canada.

Introduction

The evolution of Medical Assistance in Dying (MAID) legislation in Canada posed a significant challenge to health systems charged with the implementation of safe and effective MAID care. The nimble response required of health systems to the legislation; complex provincial and territorial jurisdictional responsibilities for healthcare; and the evolving understanding of best practices in MAID-related care has resulted in significant variability in the nature and robustness of the systems developed across Canada to support MAID.

Prior to the Supreme Court of Canada’s 2015 decision in Carter v. Canada, assisting the suicide of another and consenting to the infliction of death was blanket prohibited in all circumstances. Subsequent to the Carter decision that struck down this prohibition, the Government of Canada was given 16 months to craft legislation outlining the conditions under which MAID would be permitted. ¹ After significant consultation, the legislation (Bill C-14) received Royal Assent on 17 June 2016. MAID became available immediately thereafter. Yet, until the details of the legislation were given Royal Assent, it was difficult for health systems to complete the labour-intensive process of policy and process development and educational dissemination. Healthcare providers involved in those early days of MAID implementation recalled conducting marathon working sessions to develop policies and procedures, ² becoming involved in MAID-related care with little preparation,^2–4 and building practice networks to support safe and effective care.^5,6

Just as health systems were adapting to the initial legislation, another successful court challenge in Quebec in 2019, Truchon v. Canada (Truchon c. Procureur general du Canada, 2019 QCCS 3792 Que. S.C.) struck down the reasonably foreseeable natural death requirement contained in Bill C-14. The subsequent legislation (Bill C-7) introduced a two-track approach to MAID: Track 1 for those whose natural death was reasonably foreseeable (RFND) and Track 2 for those whose natural death was not reasonably foreseeable (non-RFND). ⁷ Although the eligibility criteria remained the same across Tracks, the safeguards differed. Most notably, those applying under Track 2 were required to have an assessor who has, or consults with, another medical practitioner or nurse practitioner who has expertise in the condition(s) causing their suffering. Both assessors must have discussed the reasonable and available means to relieve the applicant’s suffering and agreed that the applicant has given serious consideration to those means. Finally, they must ensure that there are at least 90 clear days between the date the first assessment began and the date of provision of MAID. To become eligible under the law, two independent assessments, conducted by physicians or nurse practitioners, must be conducted with agreement about eligibility.

An important question that arose during this time was whether those with a mental disorder as their sole underlying medical condition should also be immediately eligible for MAID under Track 2. To exclude applicants with a mental disorder was potentially discriminatory but there were concerns that health systems were not yet ready to conduct these assessments. An expert panel was convened, and the Government twice deferred the eligibility of these applicants until March 2027.^8,9 This decision was difficult both for persons with mental illness waiting to apply and for healthcare system leaders in regions of Canada who had learned about the need to be prepared after Bill C-14 and had done extensive work in anticipation of assessing these applicants. ¹⁰ The MAID legislation continues to be challenged in the courts with some cases seeking to expand, and others to restrict, the scope of MAID eligibility. ¹¹ Such a changing legal landscape has made it difficult for health systems to build robust systems of care.

Further compounding the challenge is the assignment of jurisdictional responsibility for the management and delivery of healthcare in Canada to each of the 10 provinces and 3 territories. ¹² Some provinces and territories have a single health authority, while others delegate the organization and delivery of care to several health authorities within a single province or territory. The very responsiveness to geographic context that these health authorities are meant to facilitate has made standardization of MAID care across Canada difficult. Early analyses of the approaches to MAID across these jurisdictions highlight the degree of variability and preparedness for MAID practice^12–14 with some regions publishing their context-specific approaches to high quality care.^13,15,16

An evolving evidence-based understanding of what constitutes best practices in MAID care has also influenced the development of health systems. For example, early explorations into the ecology of care required for MAID indicated that best practices included an interprofessional system of relationships, resources, and processes to support this ethically complex practice. ¹⁷ Studies of patient and family experiences provide ample evidence about their needs for emotional, navigational, educational, and bereavement support.^18,19 A systematic review of systems for MAID care indicated that barriers to quality care included emotional burden, lack of support, and isolation of healthcare providers. Facilitators of high quality care included clear guidelines, multi-disciplinary teamwork, and collaborative approaches to offset team members’ isolation. ²⁰

The development of MAID coordination centres has been one way to support best practices in MAID-related care. For example, when assisted death was made legal in Quebec in 2015, 30 interdisciplinary groups were implemented to provide support for clinical practice, administration, resources, and quality improvement. However, a subsequent evaluation suggested that their existence was not well known, that there was a high degree of variability in their mandate, and that this variability impacted the effectiveness of care.^21,22 Outside of Quebec, MAID coordination centres have developed to varying degrees resulting in an emerging MAID coordinator specialty role, often filled by registered nurses or social workers. MAID coordinators assist with inquiries from healthcare professionals and patients, relieve administrative burden for assessors and providers, and help patients and families to navigate the system. ²³ However, we are not aware of any systematic evaluation conducted of these coordination centres outside of Quebec. Furthermore, no accreditation standards for MAID care have been established.

Despite an emerging body of literature outlining the nature of systems required to provide high quality, safe, and effective MAID-related care, no studies have distinguished between the care requirements to support applicants who apply under Track 1 and those who apply under Track 2. Yet, there is a known level of complexity inherent in persons applying under Track 2 (It is important to note that characterizing Track 2 as more complex than Track 1 care may be overly simplistic. Many clinicians cautioned us that Track 1 applicants can be equally complex and Track 2 applicants are not necessarily all complex), and the legal requirements of additional procedural safeguards, including the minimum 90-day assessment period, have important implications both for those providing and receiving care. There is little published evidence outlining the systems required to provide high quality care specific to applicants applying under Track 2. Therefore, the purpose of this paper is to identify structures and practices described by healthcare providers involved in Track 2 care as key to developing a robust system of high quality and safe care for persons applying under Track 2 MAID in Canada.

Methods

Design: This was a qualitative interview study informed by Interpretive Description. ²⁴ Interpretive Description applies a pragmatic qualitative design logic to data collection, analysis, and interpretation that supports the application of the resultant knowledge to practice.

Sample and recruitment: Healthcare providers, MAID program administrators, and key informants were recruited using convenience (e.g. email recruitment), snowball (e.g. referral by colleagues), and purposive (e.g. targeting regional representation) sampling. Eligibility criteria included engagement in Track 2 MAID care, policy, and/or research, and willingness to engage in a semi-structured interview conducted in English.

Data collection and analysis: Interviews were conducted (B.P., H.S.) via Zoom™ using a semi-structured interview guide developed by the study team and reviewed by experts in Track 2 MAID. Data were audio-recorded, transcribed, checked for accuracy, and entered into NVIVO™ for analysis. Three study team members (B.P., H.S., and G.W.) reviewed the data in its entirety and relevant field notes prior to entering the analysis process. An initial open coding structure was created, applied, and negotiated by these team members. Themes and an interpretive account were then created from this data reduction. To support interpretive credibility, preliminary findings and representative quotes were presented to the entire authorship team for discussion, all of whom have expertise in the topic under study.

Findings

Fifty-five persons knowledgeable about Track 2 MAID in Canada participated in interviews (see Table 1 for demographic information). Participants held roles as assessors/providers, administrators, policy leaders, and decision-makers across six Canadian provinces. Such diverse representation highlights ways in which systems of support have developed differently across regional contexts. However, what was congruent across study findings was the complex nature of Track 2 applicant care that required important supports for the delivery of thoughtful, safe, and effective care. The Supplemental File provides additional quotes to support these findings.

Table 1.

Demographic summary of participants (n = 55).

Demographic variable	Options	Count n = 55	%
Region of practice	West Coast	24	43.6
	Prairie Provinces	10	18.2
	Central Canada	18	32.7
	Atlantic Canada	3	5.5
Profession	Physician	20	36.4
	Nurse practitioner	10	18.2
	Registered Nurse	13	23.6
	Social work	4	7.3
	Other	8	14.5
Age	25–34	3	5.5
	35–44	14	25.5
	45–54	10	18.2
	55–64	17	30.9
	65 and older	11	20
Self-identified gender	Female	39	70.9
	Male	13	23.6
	Non-binary, third gender or prefer not to answer	3	5.5
Self-identified race and/or ethnicity	Caucasian | White	52	94.5
	Prefer not to answer	3	5.5

Nature of Track 2 patient care

Understanding the nature of the care required for persons applying under Track 2 MAID is fundamental to understanding the system needed to optimize care. This work is complex, emotionally-laden, risk-bearing, and funded in ways that may not adequately reflect the intensity of the work entailed.

Complex work

Care of Track 2 applicants may be complex. As a result, significantly fewer assessors and providers who engage in MAID Track 1 care will accept Track 2 applicants for assessments and/or provisions. “I’ve gotten to the point where, you know, I may just say, ‘No. I’m not interested in doing those assessments because I just know they’re going to be too difficult’” (51). However, for others it was an expectation of their role. “When non-foreseeable death became something, our previous manager was pretty much, ‘well its required if you work in this position’” (40). Participants suggested that the number of assessors and providers willing to serve Track 2 patients was actually less than predicted and possibly even decreasing. “I think there’s a general sense of less interest than expected by those who do assessments, by the practitioners, to be willing to do this work. Less than I think that we thought” (37). Track 2 assessments were viewed by some participants as highly specialized work meaning those who participated needed to have an interest in developing a specialty in MAID care. Yet, a participant suggested that this was not how assessors and providers of MAID have typically viewed MAID care. Drawing upon the ideals of autonomy and a good death, the MAID workforce was developed in the spirit of, “Who’s going to sign up to do this very noble work?” (54). The specialized nature of Track 2 care is mostly, but not always, related to a subset of applicants with complex medical histories, multiple diagnoses and sources of suffering, and/or comorbid mental health conditions. “It un-nerves people when there’s so many mental health issues with it” (48). This meant that consultations were labour-intensive and often conducted over multiple interactions. Assessments for applicants with multiple diagnoses and associated comorbidities required time to understand the nature of the applicant’s suffering, to build trust, and to gather records with respect to possible remedies considered and made available. For assessors with full-time work commitments beyond their work in MAID, taking on clients for such intensive assessments and long-term follow-up was simply not possible, both for personal and professional reasons. “Patients I can think of have had personality disorders on top of everything else. And so it’s really hard to build rapport and it’s no fault of their own, because they have a trauma history as well. But yeah, it’s just challenging” (19).

Layered onto the care taken to evaluate an applicant’s eligibility for MAID was the knowledge that shortening someone’s life, sometimes often significantly, made the consequences of making a mistake particularly acute. “If I make a mistake about somebody who has Track 2 and could potentially have another 20–25 years of life, much of which might give them at least some pleasure, the consequences of a mistake are greater. It’s harder decision-making” (38). However, refusing to assess or provide for Track 2 clients could also be a source of regret as clinicians felt strongly about the moral obligation to help end suffering. “It breaks my heart every time I have to decline, because I’ve got a full-time practice. So, every time I have to decline a case, because I don’t have the capacity, I know it’s going to be hard for them to find someone here who has the time and the ability” (22).

Emotionally-laden work

Participating in Track 2 care was identified as emotionally-laden work, both in a positive and negative sense. Participants acknowledged that they gained a lot from the work because they were involved in the lives of those who were suffering by providing some measure of support, and if necessary, a peaceful death. “The greatest commandment is you love your neighbors as yourself. And if I was suffering intolerably, I would ask my physician to provide MAID for me. So, if I would ask my physician to do it for me, I as a physician need to listen to my neighbor when my neighbor says, ‘Help me’” (45). They further recognized that their work as assessors could lead to outcomes that did not necessarily entail an assisted death. “I tell everyone that just because you have applied and been approved for MAID you never have to get it. Lots of people officially withdraw the request, or they never ask for MAID. A lot of my Track 2 people just want to hear they have that option” (22). But, it was meaningful work with an emotional cost. “When you’re starting to do Track 2 cases, you want other people there who text you after to question how are you feeling today, how are you feeling tomorrow, and also to close the loop for you” (07). One participant described how they had come to recognize a sense of dread when anticipating doing a provision and another expressed a deep sadness when it was concluded that there were no reasonably available supports, resources, or treatments that would reduce the applicant’s suffering to a level that was acceptable to them. Where applicants had difficult socioeconomic and family circumstances, this made the work particularly hard emotionally. “The emotional drain of working with someone who has those complexities because they’re not all health complexities – there’s social determinants of health complexities, family dynamic complexities” (03). Participants could not always anticipate when a provision might overwhelm them. “I had a case a couple of weeks ago where the family did not tell me they were going to have children present. . ..I would have asked somebody else to do it, because I have a kid and I don’t need to think about him having to watch me die” (19). Participants suggested that an advanced degree of emotional maturity was required to do Track 2 work, and that excellent social support and strong lifestyle habits to look after oneself were important to offset the emotional consequences.

Risk-bearing work

Caring for Track 2 applicants was also described as personally and professionally risk-bearing. Participants shared experiences of hostility and harassment from colleagues, applicants, and family. Although MAID had been legal for 9 years, participants experienced ongoing difficulties from colleagues in the health system. “I feel like we’ve [MAID care providers] been systematically bullied by the health care system. They don’t want us, they don’t know who we are, and they have told us outwardly that they don’t trust us” (01). Assessing and/or providing for Track 2 applicants in particular caused participants to feel stigmatized by other healthcare professionals and oversight bodies. Participants suggested some of this stigma arose from a misunderstanding of how they conducted these assessments. “There is a fear of being stigmatized as a Track 2 provider by one’s colleagues because people don’t understand the incredible rigor that goes into Track 2 assessments and because we’re not allowed to talk about these patient cases – for reasons of privacy and confidentiality” (37).

Participants also shared stories of applicants who harassed or threatened them as they went through the process of assessment. Such behaviours included lack of respect for boundaries, such as misuse of assessors’ personal cell phone numbers, persistent emails, reporting assessors to their disciplinary college when they were dissatisfied with the outcome of the assessment, and threatening self-harm and/or harm to the assessor if they were not found eligible for MAID. “[They were] told that they were ineligible and they pursued emailing and phoning probably 20 times a day. We sent welfare checks on [them] because [they] were saying, ‘I’ll kill myself’. Then, that progressed to the point, ‘If you don’t give me MAID, I’m going to come in there and kill you all” (28). Participants also described their fear of the media as applicants’ family members used social media or news media to publicly shame them for their participation. “I don’t try and keep MAID hidden from anyone in my personal or professional life but I’m rationally afraid of the media” (11). In light of these factors, one participant suggested that MAID work can have significant impacts on healthcare providers who do the work. “We recognize that MAID work is trauma-exposed work and so we kind of treat it as such” (35).

Inadequately remunerated work

In addition to the emotional nature of the work and the risks entailed, another challenge with Track 2 work was the lack of recognition of the time required to conduct a Track 2 assessment, which is reflected through inadequate remuneration for some assessors and providers. It is important to note that remuneration mechanisms vary across provinces and territories. Some participants, particularly those who were salaried employees, did not state concerns about remuneration. However, the fee-for-service model of remuneration presented a number of challenges. First, fee schedules were sometimes insufficient for the work being done. “And it’s very intensive and for fee-for-service billers it’s a big gap. Like, you can’t bill for most of the stuff and so many people burn out” (27). Fee schedules may not have been modified for Track 2, which could differ substantially from Track 1 work in that multiple visits could be required to determine eligibility. “Once you enter into Track 2 you are entering a long-term relationship with somebody” (53). Second, the options for when a fee-for-service provider could submit a bill for payment could result in long delays in payment or no payment at all if the applicant chose not to have MAID. “These patients might be seen over the course of a couple of years and you can only submit a bill once the MAID has taken place, so you can only bill them 2 years later when the MAID has taken place. In the mean-time the patient has died by another means, or they’ve said I don’t want MAID” (10). Third, changes in reimbursement schemes, such as from fee-for-service to block reimbursement schemes could make it difficult for clinicians to continue to contribute to labour-intensive work such as Track 2 MAID. “Then the physicians stopped picking MAID up and our wait list started” (03). As a result, participants recognized that Track 2 work could entail many volunteer hours for fee-for-service providers and suggested that perhaps this work could best be done by salaried employees. “I think the future lies in nurse practitioners that are hired by the health authority because we can pay them for their time” (01).

In summary, engaging in the care of Track 2 applicants was perceived to be complex, emotionally difficult, risk-bearing, and time-intensive with remuneration that did not necessarily reflect the time commitment of the professionals engaged in this work. However, participants also found the work compelling and rewarding because it was an opportunity to work alongside, support, provide options to relieve suffering, and ultimately as a last resort, to provide a peaceful end to eligible persons who meet all legislative criteria.

High quality and safe care for all

The nature of the work done by team members involved in Track 2 MAID care had important implications for the safety and quality of the care systems designed to support applicants and all those involved in MAID care. Participants described significant differences across the country in the support available. In the case of Track 2 MAID in particular, highly functioning coordination centres and the standardization that could be achieved through appropriately structured case consultation were critical.

Coordination centres

Care coordination centres existed in many regions of Canada at the time of this study. Originally, they had been developed as an important means to support access to MAID when it was anticipated that primary care providers may be reluctant to be involved or may require support should they choose to be involved. Applicants could then self-refer to these centres. “The overarching goal of this program [Coordination Centre] was to support access, ease of access for people of any walk of life, anywhere where they lived and to minimize barriers to care” (03). However, over time, the role of coordination centres had evolved. Coordination centres are a source of accurate information for the public and community healthcare providers, a point of contact for applicants and family members, and a resource for MAID assessors and providers. Some coordination centres offer critical services to support applicants as they navigate the process of applying for MAID. For example, this might include connecting applicants to existing community services and resources, including housing, food, or disability services; facilitating referrals to specialists; and educating applicants and family about MAID-specific processes. “I’m prepared to do sort of all things from start to finish, right, so chatting with patients and families, helping facilitate forms, queuing up assessments, all the bits” (05). These coordinating centres also provided important logistical and administrative support to assessors and providers, such as conducting initial intake interviews, ensuring compliance with legal requirements, reviewing paperwork, and coordinating assessments and provisions. “I get back all of the assessments from the assessors and providers. I review them to ensure that nothing has been missed. If there are ticks missed or information that is not completed, I reach out to that assessor and I review the assessment with them” (36).

Despite these common functions, coordinating centres also differed in significant ways, the most important being the resources available to them. Some coordination centres employed clinical and administrative leaders, coordinators, one or more social workers, care navigators, nurse educators, nurse practitioner assessor-providers, and/or other roles while others had limited staffing. “Here we consider ourselves nothing more than firefighters. Like we are just putting out fires. Responding to crises, responding as much as we can to sort out requests or call outs or whatever. But I say we. I should just say me” (05). Centres who employed robust multi-disciplinary teams provided direct and ongoing support to applicants whereas other centres used a consultant-only model and integrated applicants into other existing health and social care services. “We are more integrated into the existing programs and services. So, when a person requests MAID and if they’re in acute care, we just become a consultant, we don’t take over the care” (08). Another key difference was whether assessors and providers in a particular region were required to work through the coordination centre. In some areas of Canada, all MAID-related care was provided through the regional coordination centre whereas in other areas the centres provided support only when assessors and providers elected to bring their cases through the coordination centre. “So, in [region], we have a provincial MAID service, so we have a centralized intake. All MAID assessors and providers are attached to our service. We engage with independent practitioners and provide support if they want to engage in MAID assessments and provisions, but we are aware of all MAID provisions within the province and we coordinate them” (52). Another key difference was the perception that participants had of the effectiveness of these coordination centres. They were described on a continuum from well-resourced and highly functional to underfunded and inefficient. Poorly functioning coordination centres were particularly problematic in the context of Track 2 where the need for administrative, communication, and coordination support was high. “It’s a workload challenge from a care coordination perspective. Our care coordination service is really oriented around short-term or Track 1 patients because that’s the vast majority of our population. And then, to have them switch gears and have to follow a patient for like, eighteen months, which was the last Track 2 patient that I was involved with. It’s a different approach” (35). Three important factors shaped the effectiveness of these coordination centres in the context of Track 2: access to a multi/interdisciplinary team, a structured intake process, and a clearly defined role for the MAID assessors that does not include becoming the primary care provider.

A team-based approach

Participants described the importance of having access to a team with representation across multiple disciplines. This was particularly important in the context of Track 2 where applicants were experiencing complex health, social, psychological, emotional, and resource challenges. Team members were chosen strategically based upon their disciplinary background and expertise. Participants provided important rationale for why they structured their team in a particular way. For example, coordination centres that provided direct and ongoing support to applicants might have a team that included nurses, social workers, clinical nurse specialists, educators, and researchers. Social workers and nurses with expertise in community-based systems were seen as particularly important in supporting applicants’ access to resources related to the social determinants of health.

Our social workers get very involved for our Track 2 clients that are struggling to get access to resources. We have had instances where our Track 2 clients, with the help of social work and with the help of an assessor that was a psychiatrist or at least a good background in mental health, were able to find and connect this person with the resources that they needed to give them a better quality of life in such a way that they don’t pursue a medical assisted death. We’ve had a couple of incidents like that. (23)

Social workers and spiritual care providers were important in providing psychosocial support across a range of needs that included navigating complex family relationships, anticipatory grief, and existential issues. “Spiritual care practitioners, because there’s sometimes a big overlap in their role, you know – social work, spiritual care. But yeah, I think there is a massive need for those disciplines on our teams” (21). In contrast, coordination centres that envisioned their function primarily as consultive and integrated within other health systems were more likely to be staffed by registered nurses because of their expertise in navigating the health system and their clinical expertise. The structure was determined by the philosophy of key leaders but also more pragmatically by the available funding. Finally, these teams also provided important support to one another, and a highly functioning team was seen to be the best buffer against the emotional demands of the work. “There’s just no bullshit with this team. Like, they are all very down-to-earth, compassionate people. So, I think that my role could be a lot more difficult to deal with, you know, and I could be in a much worse place if I did not have the support of this team” (42).

Structured intake

An important function of the coordination centres was to provide a structured intake process for MAID applicants. Coordination services across the country had developed structured, and in some cases detailed, intake forms that were completed by coordination centre staff. For example, they would collect details directly from applicants about their diagnoses, MAID expectations and plans, support of family and friends, and preferences for location of care. Additionally, they would obtain records from healthcare providers and specialists, including seeking follow-up records associated with recommendations and referrals, and summarizing them into a concise history for the potential assessor.

So, all of the patients, regardless of their track, start the same with our intake that is performed by non-clinical staff. And then, it moves into the triage. There are some patients who go from intake to social work, depending on what the information at intake is. So, if there’s mental health identified during the intake, it gets shunted to them first but that’s an outlier. The nurses will then do two things. They will connect with the patient and do a verbal triage and they will pull records. (52)

This intake process performed two important functions in the context of Track 2. First, it compiled sometimes extensive health histories, which saved assessors’ time, an important consideration when there are limited Track 2 assessors. Thus, the coordination centre improved the efficiency and cost effectiveness of the process; allowing the assessors to focus their time on a thorough review of records rather than locating records. Second, this intake served as a mechanism for the MAID program to be responsive to the applicant and as a way to manage their hopes and expectations. “We require that the patient themselves hear the story about how MAID works and then we have an intake process. We get a lot of information, so that, in its own way, is a consultation” (820). Participants recognized the importance of managing expectations for applicants because of the potentially adverse emotional sequelae if they were formally assessed and found ineligible.

Initially, we would just call patients and then move them through the process. But we were finding ourselves in situations where no assessor was comfortable with the case that we were presenting them with. So, as coordinators, it was very challenging to go back to the patient and then feel like you’ve given them false hope. So, we’ve moved away from that and refined our process to what it currently is, whereby when we receive a referral and from chart review, it appears to be something that could fall within Track 2 we’ve developed a Track 2 screening form. (25)

This managing of expectations was particularly important when applicants could self-refer and might not have been made aware of the requirements of the law in relation to their condition. Based upon the initial consultation with the coordinator, the results were then discussed within the team and used to decide whether applicants should be referred for formal assessment. This intake process became even more important in the absence of a primary care provider.

No primary care provider

Participants from across regions expressed concern about how many of their Track 2 applicants did not have a primary care provider. Such shortages are common in the current Canadian healthcare system. This had become such a sensitive topic with the public that one coordination centre had deleted all references to any role for primary care providers in their public-facing information. “We have to change the language that has anything in it about go and see your primary care provider. It can’t say that, because that’s one thing that annoys the public and I understand why. So we will support individuals to find attachment for their assessments” (03). When a Track 2 applicant did not have a primary care provider, the work of the coordination service became even more essential. In the best-case scenario, the coordination centre was able to connect the applicant with a primary care provider. However, when that connection was not possible, the work of building an applicant history and treatment record, making referrals to specialists, and proposing tests and/or treatments might become the work of the coordination centre and more specifically the assessor.

We are hearing lots of stories of patients who lose their family doctor and don’t have another one and don’t know how to proceed but somehow find our number. Then we help navigate them, not necessarily always towards MAID but just towards better care. And that, I think, is really kind of, like, an unanticipated value of our provincial program. (28)

In some circumstances, the assessor might assume the role of the most responsible provider, a less-than-ideal situation.

The roles get a little bit conflicting when an assessor or provider is helping that patient to get care. Like, they’re not the patient’s family doctor, they’re not the patient’s specialist. I think sometimes those roles get muddied or unclear. We think this patient could benefit from A, B, and C. I’m not their MRP, so am I supposed to be writing and getting a referral? Some of the assessors and providers end up taking on those roles but then it becomes very burdensome. (34)

One coordinating centre had made the difficult decision to no longer allow applicants to self-refer. When an applicant could not self-refer and they were required to be referred by either a primary care or specialist care provider, this had important implications for access to MAID. “I think the anxiety and the worry about Track 2 leads everyone to think about oversight and then I think it disrupts access” (55).

Standardization through case consultation

Participants acknowledged that some degree of standardization and oversight was important for the quality and safety of MAID Track 2 delivery. “I would love to see some sort of standardization for Track 2, both in how it’s communicated publicly but also in a clinical setting” (55). One of the most compelling reasons for standardization was the degree of interpretation of the legislation required by assessors. Yet, participants acknowledged that standardization could be difficult in the context of a person-centred practice such as MAID. “It’s really hard to put black and white processes in place. We’re trying to standardize. It’s like trying to standardize Jello, like, into a mold” (52). Other participants worried that overly prescriptive standardization might serve to further deter healthcare providers from becoming involved with Track 2. Prescriptive standardization was also perceived to be risky because it could result in costly legal challenges by applicants who felt that their access to MAID was being unfairly limited. “The tricky part about MAID is that it’s in the criminal code. There is always the chance of someone saying to us, ‘You’re obstructing my right to MAID’” (01).

Participants suggested that there is no meaningful prospective oversight of Track 2 MAID in Canada, only retrospective oversight consisting of detailed audits of reports submitted by assessors and providers. “As far as I’m aware, there’s no province that actually provides prospective oversight. I think a lot of that has to do with legal liability, if they say yes to a case that potentially, you know, doesn’t meet criteria or whatever, who ultimately holds liability there?” (17) They did describe models of retrospective case review, but such processes were seen as unhelpful if their decision-making was criticized and made public after the fact. However, others suggested that such retrospective case reviews were vital in educating the public to engage in healthy discussion about the inherent complexity of Track 2 applicants.

Despite variability in opinion over the nature of oversight, there was unequivocal agreement that a prospective case consultation process was probably the single most important intervention in improving the effectiveness and standardization of Track 2 care. “What we’re trying to create is a provincial case consultation. And so, a case review being different than a case consultation” (55). This model was operating informally in some regions of Canada already. For example, colleagues within teams might meet informally, but regularly, in a community of practice to discuss complex cases. In other regions, there were formal teams that might include care coordinators, psychiatrists, ethicists, and spiritual care providers who could be mobilized for particularly challenging cases or for any Track 2 applicant under consideration. “So, we have complex case rounds and when somebody is complex, there will be a meeting set up by the MAID program and they will invite the people that need to be part of that discussion” (27). Most importantly, these case consultations were not meant to be places where eligibility was decided – legally that remained the responsibility of individual assessors. “These aren’t rounds to give approval. These are safe spaces to talk with your colleagues through complex cases” (54). In this manner, they were envisioned as places of learning where colleagues could grapple with complex cases. “You have that pre-death group around to say, ‘Does this all make sense? Like, are we going in the right way? Have we considered everything?’” (37). Such an approach was seen to be essential to guiding practice, standardizing approaches to supporting complex decision-making, and for supporting the moral and emotional well-being of those who engage in this challenging work. “We work as a team, but it’s that mental load, right. And how do we make sure that we support each other well enough that this mental load doesn’t like, make you walk away from this job, you know” (25). Ideally, participants envisioned a funded case consultation process that operated on a regional, provincial, or territorial level. Such a macro-level approach would help to provide some measure of standardization to overcome the tendency towards local or idiosyncratic operationalization of Track 2. This was important not only in terms of ensuring the law was being applied consistently, but also in terms of sufficient standardization to ensure equitable access to MAID across Canada.

Discussion

Findings from this study indicate that systems designed originally for Track 1 applicants may not be adequate for the complexities inherent in Track 2 care. There is a great disparity in the systems developed across Canada to support access and high quality care for those seeking MAID and those who care for them. Some regions have evolved their systems to support Track 2 care while others appear to be struggling to build a systems response to meet the clinical needs for their region. This is important because Track 2 applicants are different in significant ways. ²⁵ Although they do not have a RFND they do have health conditions that cause suffering and, in some cases multiple, complex, overlapping conditions that may be difficult to diagnose and treat. The presence of concurrent mental health conditions may add a layer of complexity to the assessment. Track 2 MAID requires safeguards that include a 90-day period of assessment. Determining that a person’s suffering remains intolerable to them despite giving serious consideration to the reasonable and available means to relieve that suffering that are acceptable to the applicant requires access to, and evaluation of, extensive health histories that may not be readily available. Applicants may have vulnerabilities related to the social determinants of health that may have been present or have arisen as a result of their serious medical condition. Some Track 2 applicants may benefit from additional connections within primary or speciality care. These significant differences between Track 1 and Track 2 applicants require a different type of care that is both ethically, socially, and medically weighty, particularly because of the potential years of life lost. Remuneration schemes developed for Track 1 assessment may not be adequate to reflect the time and care required to optimize the assessment processes to support applicants under Track 2 MAID. Furthermore, the work is inherently risk-bearing as healthcare providers involved may experience public shaming or stigma from colleagues, pressure from applicants as they seek an assisted death that they believe they have a right to, and/or from family members of applicants or recipients of Track 2 MAID. These findings are not unique to Canada. Studies of physicians in Belgium ²⁶ and the Netherlands ²⁷ suggest that they too find the work emotionally burdensome, labour-intensive, and polarizing, even years after legalization.

Despite such complexities, our findings, similar to others published in Canada,^15,17 suggest that there are model systems operating that can provide efficient and effective care. First, these model systems have designed an intake process in which a frontline staff member acts as a primary point of contact for applicants and completes an initial interview, gathers medical records, identifies potential additional referrals, and develops a concise case overview thus ensuring that assessors have access to the information they need. This process further serves to educate applicants and to manage their expectations and hopes as they initiate a request for MAID. Second, model programs have developed a supportive team approach through which all those involved can process this morally and emotionally difficult work. Third, they have access to specialists who can provide expertise to assessors. Although MAID assessors are held accountable to inform applicants of the means to relieve their suffering and offer appropriate consultation, some of these services are outside of the scope of a physician or nurse practitioner and care coordination services can help to ensure that those connections are made. Fourth, an interdisciplinary team provides emotional, navigational, and educational support for applicants and family. Fifth, they provide prospective case consultation through which assessors can have a supportive space to ensure that all the relevant factors for a Track 2 applicant have been considered and weighed appropriately. Similar approaches have been recommended in other reports relevant to the care of applicants under Track 2.^28,29 Despite the effectiveness of these model systems, there has been no standardization across Canada. Indeed, in some regions of Canada the resources dedicated to Track 2 care are so insufficient that they are no longer accepting Track 2 applicants. The question then arises of what might be the barriers to implementing such care considering the gravitas and irreversibility of the decision for Track 2 MAID.

It is possible that the optics of directing healthcare funds to optimize MAID Track 2 care is just too politically risky in a context of extensive public false narratives implying that MAID is a way to control healthcare costs^30,31 to boost physician salaries, ³² or worse to facilitate healthcare “serial killing.” ³³ Though arguments have been made against such false narratives,^34,35 ensuring that MAID programs are able to provide a robust assessment and supports to alleviate suffering for Track 2 MAID applicants would be an additional important strategy to counter such false narratives. Particularly when there is evidence from the most recent Health Canada report ³⁶ and findings from this study to indicate that an application for Track 2 MAID does not necessarily lead to an assisted death. Some applicants withdraw their requests for MAID once their suffering has been relieved; others see their eligibility as an option that provides some measure of relief from suffering because of the control it affords them in the future.

The public debate over the role of the social determinants of health in applications for MAID^37–39 might further deter the funding of such systems; yet a robust assessment system, including social workers and others able to connect applicants to community and social services that support programs such as housing, food security, and disability programs would seem to be the safest buffer against that concern. Data from this study indicated that in well-designed MAID systems healthcare providers with the most relevant expertise work diligently with applicants to ensure that they are aware of every available option to relieve their suffering and to help remove barriers to accessing those options, consistent with the safeguards mapped in legislation.

Finally, there may be a perceived legal risk if these systems are seen to be unduly limiting access to MAID. ⁴⁰ Within these model systems, while decisional responsibility remains with individual assessors, those assessors are afforded access to the depth and breadth of an interdisciplinary team tasked with supporting thoughtful decision-making and ensuring that due consideration has been given to all relevant factors so that when MAID Track 2 eligibility is determined, all parties are assured that a thoughtful, robust process was applied. The risk of an applicant taking legal action if they have been deemed ineligible for MAID pales in comparison to the risks of not taking appropriate due care that is the hallmark of these model systems.

Conclusion

The assessment for, and provision of, MAID is unique in healthcare. It is the only federally legislated healthcare act, and it is morally contentious. Those who apply under Track 2 are suffering to the extent that death seems like the only way to relieve the suffering that may plague them in the coming years. Canadian law has tasked assessors with the daunting task of working alongside these suffering persons to decide whether they are eligible under the law and whether anything else can be done to alleviate their experience of suffering. The nature of Track 2 work is complex, emotionally-laden, risk-bearing, and sometimes poorly remunerated. Systems of excellence have been developed in regions of Canada that provide wraparound support for all those involved in MAID—applicants, family, and healthcare providers. But there is an urgent need to ensure that such systems are available across Canada. They may be the most important checks and balances to ensuring high quality care.

Supplemental Material

sj-docx-2-pcr-10.1177_26323524251401243 – Supplemental material for Developing robust systems for Track 2 MAID in Canada: A qualitative study

Supplemental material, sj-docx-2-pcr-10.1177_26323524251401243 for Developing robust systems for Track 2 MAID in Canada: A qualitative study by Barbara Pesut, Sally Thorne, Laurie Brad-Richards, Janine Brown, Julie Campbell, Margaret Hall, Laurel Plewes, David Robertson, Helen Sharp, Kelli Stajduhar, Caroline Variath and Glendon Wiebe in Palliative Care and Social Practice

Supplemental Material

sj-pdf-1-pcr-10.1177_26323524251401243 – Supplemental material for Developing robust systems for Track 2 MAID in Canada: A qualitative study

Supplemental material, sj-pdf-1-pcr-10.1177_26323524251401243 for Developing robust systems for Track 2 MAID in Canada: A qualitative study by Barbara Pesut, Sally Thorne, Laurie Brad-Richards, Janine Brown, Julie Campbell, Margaret Hall, Laurel Plewes, David Robertson, Helen Sharp, Kelli Stajduhar, Caroline Variath and Glendon Wiebe in Palliative Care and Social Practice