# introduction

In 2021, Canada joined other countries such as Belgium and the Netherlands in allowing for Medical Assistance in Dying (MAID) in the absence of a reasonably foreseeable natural death (1,2). In Canada, this is referred to as Track 2 MAID. All applicants for MAID must meet the eligibility criteria and be 18 years of age or older; be eligible for publicly funded healthcare services; make a voluntary request; have the capacity to make healthcare decisions; provide informed consent; and be diagnosed with a grievous and irremediable medical condition (1). Grievous and irremediable conditions are defined as serious, incurable, in an advanced state of irreversible decline, and accompanied by enduring physical and/or psychological suffering that cannot be relieved under conditions that the person deems acceptable (1). Additional safeguards are required for applicants whose natural death is not reasonably foreseeable (Track 2). These safeguards include a minimum 90-day assessment period between the time of the first assessment and the provision of MAID and require that assessors inform, discuss, and be satisfied that the applicant has given serious consideration to reasonable means to relieve their suffering (1).

In 2023, there were 662 Track 2 MAID deaths in Canada, which represented 4.1% of all MAID deaths (3). More women (58.5%) than men (41.5%) received MAID under Track 2 in contrast to a relatively equal distribution of women and men under Track 1 (3). The median age of persons receiving MAID under Track 2 was 75 in comparison to a median age of 78 years under Track 1; however, 11.2% of Track 2 cases were under the age of 55 in contrast to 3.5% of Track 1 deaths (3). In 2023, the most common health conditions among Track 2 MAID recipients were neurological disorders and other conditions such as diabetes, frailty, autoimmune conditions, and chronic pain (3).

There are few Canadian studies exploring Track 2 specifically, but studies to-date identify specific challenges for MAID assessors that differentiate Track 1 from Track 2 MAID care. An online mixed-method survey of 23 providers’ experiences with 54 Track 2 applicants found that the most common diagnoses were complex conditions such as chronic pain, chronic fatigue, or myalgic encephalomyelitis and that 68.5% of Track 2 applicants had concurrent mental illness (4). The same study identified common challenges experienced by assessors including understanding the impact of vulnerability on the applicant’s decision making about MAID (n=18), determining decisional capacity of the applicant (n=14), and evaluating whether serious consideration to the available means to relieve suffering had been given by the applicant (n=12) (4). A qualitative study by Pesut et al. with Canadian nurses (n=25) and nurse practitioners (n=10) revealed the moral complexities of Track 2. Nurses suggested that these deaths felt different because applicants often appeared well. Nurse practitioner assessors described their experience with applicants who carried stigmatizing diagnostic labels, lacked a primary care provider, and/or reported difficult living situations. Track 2 assessments were described as difficult, complex, and time-intensive (5). A recent qualitative study describes Track 2 applicants’ experiences of prolonged suffering that was not always validated through their medical care. Among those studied, requests for MAID provided a measure of personal control over their circumstances and validation from medical professionals that their conditions and consequent suffering were real (6). In light of the paucity of first-person evidence, the purpose of this study was to develop a better understanding of best practices for MAID Track 2 from the perspectives of those living with an illness, disease, or disability that could potentially make them eligible for Track 2 MAID in future.
# Methods

## Design and Setting

This was a qualitative interview study using Interpretive Descriptive (7) approaches conducted in the province of British Columbia.

## Sample and Recruitment

Participants were recruited purposively through research team networks and from organizations that serve persons living with conditions common to Track 2 (e.g., pain, complex syndromes). Inclusion criteria included living with a serious condition that could at some point make them eligible for MAID under Track 2. There were no relevant exclusion criteria.

## Data Collection and Analysis

Participants took part in three semi-structured interviews over a period of 3-6 weeks. Interviews were conducted by HS, BP, and GW. The first interview focused on understanding the participant’s illness trajectory; the second on their experiences with, and perceptions of, MAID; and the third on their opinions regarding the eligibility criteria and safeguards. Interviews were conducted individually over Zoom or in person, audio-recorded, transcribed verbatim, and checked for accuracy. The analytic process followed steps of open-coding, developing themes using constant comparative analytic methods, and a narrative account. To ensure integrity of the findings, four team members read the data in its entirety, contributed to code generation, and constructed the themes. All authors provided feedback into the narrative account.

## Ethics

The study was approved by the Behavioural Research Ethics Board of the University of British Columbia.
# Discussion

Seven participants living with complex health conditions engaged in longitudinal interviews with the goal of informing best practices and policies in MAID Track 2 care. Participants described their experience with complex conditions and the impact of their condition on their lives. In addition to reconciling multiple losses related to their health conditions, participants had experienced substantial challenges in negotiating medical and disability systems together with social stigma in both public and healthcare settings. Participants’ descriptions were consistent with previous studies of those living with chronic pain and fatigue that reveal iatrogenic harm and inadequate treatment connected with disbelief on the part of healthcare providers (8,9). Participants identified important contributors to the quality of their healthcare, including development of expertise in self-management, identifying healthcare providers who listen and offer meaningful support, and developing a measure of acceptance of a reshaped identity and life course, all of which took time and considerable effort to achieve.

Limitations of the sample are that all participants identified as white and had at least some post-secondary education (43%) or a graduate degree (57%). As such, this group was well-educated and homogenous. The small sample size, lack of ethnic diversity, educational attainments, and the fact that the majority of participants were not considering MAID at the time of their participation, should be considered when evaluating generalizability. The longitudinal and in-depth data collection, diversity of illness and disability experiences, and richness of the participants’ reflections contribute to the quality of the findings.

Although the small and homogenous sample size precludes definitive policy or practice recommendations, it is important to interpret and understand the perspectives of people living with complex health conditions to inform healthcare providers engaged in Track 2 MAID assessments. These findings can also be interpreted in relation to the Model Practice Standards (MMPS) for Medical Assistance in Dying in Canada (10) and to current literature debates about voluntariness in requests for Track 2 MAID (11-13). The MMPS were developed by a task group convened by Health Canada in 2022 after the legislation change that defined Track 2 MAID (Bill C-7). Since the goal of MMPS is to support a consistent approach to MAID across Canada, they provide a context against which to evaluate the reflections of the participants in this study. One of the most heated debates in Canadian society around MAID after Bill C-7 is how to guard against vulnerabilities that could impact decision-making and reduce the voluntariness of requests for MAID. We will leverage the insights from this study in future studies to inform that debate. The following section addresses key insights arising from the interview data.

## Serious Consideration of the Reasonable and Available Means to Relieve the Person’s
        Suffering

Participants’ reflections about how suffering should be assessed provide important insights for physicians and nurse practitioners who conduct MAID assessments. Namely, the need to approach a MAID assessment in a kind and compassionate manner and in a safe environment. Participants indicated a desire for assessors to adopt a spirit of curiosity and to work in partnership with each applicant. Several participants recommended an interdisciplinary collaborative approach, recognizing that this might be the last opportunity to identify and access treatments that could relieve an applicant’s suffering, either to obviate the need for MAID or to achieve comfort in the period leading to MAID. They also described the need for assessors to acknowledge previous difficulties in healthcare encounters, describing an approach consistent with trauma-informed care. This finding supports guidelines developed by the Canadian Association of MAID Assessors and Providers (14), that recognize the potential for applicants with chronic conditions to have been marginalized by the healthcare system.

Participants’ descriptions of multifaceted sources of suffering and recommendations related to the assessment of suffering also aligned with the guidance of the MMPS.

> *[Assessors] must ensure that the person has been informed of the means available to relieve their suffering, including, where appropriate, counselling services, mental health and disability support services, community services, and palliative care and has been offered consultation with relevant professionals who provide those services or that care. Community services must be interpreted as housing and income supports. Means available must be interpreted as available means that are reasonable and recognized*. *Serious consideration must be understood to mean: a) exercising capacity, not merely having it; b) exhibiting careful thought; and c) not being impulsive*
> — 10, p.17

> *Must be of the opinion that it is the person’s illness, disease, disability, or state of decline in capability that is the cause of the person’s suffering*
> — 10, p.12

Participants described the impacts of the trajectory of their experience of suffering over time. In coming to terms with new identities, participants described both positive and negative impacts of their illness trajectory on their quality of life. They uniformly described experiences of stigma and struggle associated with social constructs of illness and disability and experiences of suffering associated with system-level harms. The participants had become experts in their own care and described rigorous approaches to seeking help with their condition, typically over many years. As such, these participants were emblematic of having met the “serious consideration” clause in the MMPS.

Our findings highlight the difficulty for MAID assessors to differentiate distal from proximal causes of suffering described in the MMPS. For example, participants could imagine circumstances, such as changes to their support systems or financial status, that would have substantive negative impacts on their quality of life to a degree that they might no longer want to live. In this case, an assessor might conclude that an applicant’s life circumstances were the most proximal cause of their suffering, rather than their illness. Nevertheless, participants suggested that these situations should not be disqualifiers for receiving MAID. Rather, they felt that it would be important for the assessor to understand the full trajectory of an individual’s experience of illness, disease or disability and ways in which the compounding effects of life circumstances could compromise an individual’s overall quality of life and experience of suffering.

Participants highlighted two important factors that frequently limit access to services and supports to relieve suffering. First, psychological and counselling services are not available to a large portion of the population because they are not covered by provincial health systems and many individuals with chronic health conditions lack supplemental benefits that might cover adequate access to such services. Out of pocket costs for non-covered services are often prohibitive. Second, persons may have disability benefits or financial support for specific services, but these may be insufficient to live on absent other sources of household income or social supports. In these cases, while reasonable means to relieve suffering may technically be available, they are not accessible or adequate. This leaves assessors in a difficult position of offering recommendations to relieve suffering, knowing that while the means may be reasonable and recognized, they are not accessible or adequate.

## Advanced State of Irreversible Decline in Capability

The MMPS outlines three factors that need to be reconciled when assessing decline in capability: the severity of loss, its irreversibility, and its meaningfulness to the person.

> *Capability refers to a person’s functioning (physical, social, occupational, or other important areas), not the symptoms of their condition. Function refers to the ability to undertake those activities that are meaningful to the person. Advanced state of decline means the reduction in function is severe. Irreversible means there are no reasonable interventions remaining where reasonable is determined by the clinician and person together exploring the recognized, available and potentially effective interventions in light of the person’s overall state of health, beliefs, values, and goals of care*
> — 10, p.11-12

A study of MAID assessors conducted prior to Bill C-7 described two contrasting approaches to assessing decline in capability. One approach is to evaluate the level of decline against the applicant’s baseline. The other is for the assessor to evaluate the stage of the illness, disease, or disability (15). Participants in this study suggested that the focus on patient experience of decline should be central to the assessment. They described experiences of variability in severity of symptoms over time, and recognized that during a flare-up or period of worsening symptoms, it would be difficult to predict irremediability or impact on quality of life. Participants described the work, vigilance, and resources required to manage functional daily living and could hypothesize about circumstances that would be too much to manage. As one participant suggested, a person becomes terminal when they give up. As such, participants reflected the idea that capability is better assessed in reference to their own trajectories rather than to some objective or external standard. If an applicant no longer had the will to live, then death might be perceived as their only option and in that circumstance, MAID would be a preferable alternative to suicide.

## Voluntary Request

The MMPS criteria for the assessment of voluntariness of a request for MAID limits consideration of coercive influences to that ascribed to other people.

> *Assessors and Providers must be satisfied that the person’s decision to request MAID has been made freely, without undue influence (contemporaneous or past) from family members, healthcare providers, or others*.
> — 10, p.12

However, the participants described other specific vulnerabilities for people living with complex and/or chronic health conditions that could unduly influence people to seek MAID. Participants identified potential for social stigma, elevated risks for poverty, iatrogenic harm, and barriers to appropriate healthcare, psychological care, and/or social supports as contributing to an individual’s decision to pursue MAID. They concurrently expressed concern that such factors might be used to unfairly strip applicants of their autonomy. These data provide support for the ongoing need for meaningful debate and discussion about whether and how factors such as barriers to care, poverty, stability of housing, and other social factors should be considered by MAID assessors in eligibility determinations.

Two recent articles take different perspectives on this question. Wiebe and Mullin (11) conclude that to refuse MAID to those living in oppressive conditions, except under conditions where it is clear that they have lost important internal autonomous capacities (e.g., self-trust, hope), is to further undermine applicants’ autonomy, creating additional oppression. In contrast, Christie and Li (12) argue that autonomy alone is insufficient grounds for clinical judgments which must also consider issues of non-maleficence, beneficence, and justice. Similar to the MMPS, they would argue that the more distal the reason for intolerable suffering is from the primary illness experience, the more MAID should be questioned.

Lazin and Chandler (13) distill the debate down to two fundamental questions: Do we have a duty to protect vulnerable people from seeking certain procedures or do we have a duty to uphold their autonomy? Drawing upon a thorough review of the court cases and parliamentary debates leading up to the legalization of MAID, they distinguish between individual and collective vulnerability. It is not a person’s identification with a particular group (a so-called vulnerable population) that renders them vulnerable to making a decision about MAID without a “rational and considered desire for death” (Carter, para 114); rather, each individual may be more or less vulnerable depending upon their individual capacities, characteristics, and circumstances. Lazin and Chandler suggest that the additional safeguards implemented for Track 2 MAID were designed to ensure that MAID does not become a default option for people with complex health conditions who experience poverty, homelessness, or other vulnerabilities, although they conclude that there will remain contention about whether these safeguards are sufficient.

Participants in this study expressed grave concerns about the potential for gaps in the accessibility of healthcare and the social safety net to compel people to apply for Track 2 MAID when they otherwise would not. Even though some expressed that they were grateful for the availability of MAID, should they seek it in future, they worried about how MAID might be used by others who felt they had few options to remediate their condition. They also worried that other people, particularly healthcare professionals, might suggest MAID for people living with complex, chronic conditions and disabilities and imply that their lives were not worth living. Despite some pessimism about whether oppressive systems could be changed or health and social care systems improved, participants expressed that it would be wrong to deny those who request MAID as a means to a peaceful and dignified death, on the basis of systems they cannot control. Participants’ voiced support for autonomy and the right to choose balanced with a desire to ensure that applicants were not unduly influenced by external factors, which they interpreted to include both social and economic pressures. In essence, this articulate group of participants reflected the same tensions inherent in the public debate of trying to reconcile ideas of autonomy and vulnerability within a framework of justice.
# Conclusion

The voices of those with lived experience are essential to informing policy and practice of MAID in Canada, particularly as it relates to Track 2 MAID in which natural death is not reasonably foreseeable. Participants explored the gravitas of a decision to seek MAID. Their perspectives highlight the essential role of applicants as partners in the Track 2 MAID assessment process and not merely as recipients of legislated approaches. Compassionate, trauma-informed, and expert assessors who take the time to understand the individual’s experience of illness or disability, consequent suffering, attempts to alleviate that suffering, and the decline in capability in a holistic sense are central to ensuring the quality of Track 2 MAID care. Participants envisioned a comprehensive approach to the 90-day assessment period in which an interdisciplinary team would work alongside applicants to determine if anything further could be done to alleviate suffering, including trials of higher risk interventions, where indicated and of interest to the applicant. Participants also described interest in inclusion of psychosocial and spiritual supports that align with the philosophy of palliative and hospice care. Even with the best of treatment, some participants could imagine that there might come a time when the work of chronic illness management or the impact of substantive life changes could simply become too much and in such circumstances, such that MAID was viewed as a dignified alternative when compared with suicide. Participants reminded us of the importance of continuing to grapple with the challenges of balancing autonomy, vulnerability and justice for those seeking Track 2 MAID within imperfect systems.

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