Article body

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. 

Findings

Seven persons with lived experience of chronic illness, disease, and/or disability took part in the study. Participants’ primary conditions included complex syndromes, chronic pain, mental illness, and neurological conditions. Most experienced a degree of disability as a result of those illnesses. Age of participants was gathered categorically and ranged from 25-34 years through 55-64 years. Study findings address participant experiences of living with their condition, experience of healthcare, and their reflections about Track 2 MAID as informed by their lived experiences.

Understanding the Complexity of Living with Serious Chronic Illness, Disease or Disability

All participants conveyed that living with a chronic health condition is inherently complex. Their accounts of the trajectories of illness, the nature of the suffering they had experienced, and strategies of illness management were fundamental to understanding their collective recommendations.

Illness Trajectories

Participants described illness trajectories that often had a triggering incident. For example, two participants could clearly recall the moment when their illnesses began. “I was in a car accident and that’s when all the big stuff started.” “It was like the Big Bang. So, I got first symptoms on Monday, was in hospital by Thursday, and never really walked properly again.” Some recalled an assumption that their illness would be transitory and a perception that if they just pushed hard enough to keep going, they would return to normal. This view was reinforced in part by healthcare providers. In retrospect, one participant wondered whether “pushing through” had contributed to the development of their condition. “I just pushed through, kept working, working, working. Sometimes when you have these conditions you blame yourself, like could I have done this differently?” Another had difficulty getting help and so simply gave up. “But I, I learned that I wasn’t going to get help anyway, so I didn’t pursue it. And I was younger and stupider then.” After the initial diagnosis or incident, several participants described a spiraling increase of symptoms and/or conditions (as many as 10 or more diagnoses) that developed over years to decades. Even though these were described as new conditions, participants often perceived them as all linked to one underlying problem. One participant had difficulty listing the many sequelae they had struggled with over the years. “I’ll randomly come up with new diagnoses that I’ve got that I didn’t tell you before, because I don’t remember.” 

Receiving a diagnostic label was significant, but did not always happen. One participant described the experience of having a physician provide a name for their condition after they had struggled with mysterious symptoms for many years. “I felt like I’d been punched in the gut because I was shocked. I didn’t realize that I even had anything.” Another participant who had yet to have a name for their debilitating symptoms stated, “It’s not something that’s recognized by doctors and, generally speaking, they’ll just try and give me different pills.” This same participant spoke of the challenges of getting different diagnoses from specialists even with the same symptom profile. “Some of them are geared to seeing things in a certain way. Like if you are a carpenter and know how to use a hammer you are going to see nails everywhere.”

Although some participants had diagnoses and others did not, what was common were the life-altering symptoms that had persisted for many years with varying degrees of intensity. The unpredictable nature and course of illness posed difficulties. One participant suggested that when they were younger, they thought they would have a limited life span as a result. “I didn’t see myself living beyond 25 years of age.” However, they also discussed how they had learned to live with new life realities. In some cases, participants described their quality of life as higher than what they had anticipated, in part, because they had learned to lay aside expectations. “If you always internalize the message to keep fighting then there is a sense of failure and shame. But if you take that energy and put it into finding peace and space for life then you find a deeper peace.” Nevertheless, the cumulative effect of multiple illnesses and symptoms, some of which could not be diagnosed, resulted in a unique type of suffering.

The Nature of Suffering

Participants had endured a range of physical and/or mental health symptoms that caused suffering accompanied by psychosocial suffering. Psychosocial suffering was associated with personal and professional losses they experienced, social stigma, and difficult interactions with healthcare and social care systems including disability services and insurance. Participants had experienced profound changes in their life course as a result of their illness including loss of careers, partners, friends, or the ability to have a family. Participants described taking on a new identity as a person with a disability. “I’ve had to learn different ways of thinking about myself. I’d never thought of myself as disabled or as having a disability. And that took a hell of a long time to wrap my head around.” Others acknowledged that it was really the social construction of the illness, rather than the illness itself, that contributed to suffering. “I have a condition that I work with. That’s the reality that I have to live with, but, in different times, I could have been seen as a spiritual leader, you know so it’s really like the way we’re thinking about illness.”

This social construction of illness and disability was associated with stigma. For those with a physical disability, infantilizing was particularly pernicious. One participant described that when their partner was present, others, including healthcare providers, would speak to their partner instead of to them as if they were not capable of engaging in the interaction. Another participant described assumptions that they would be unable to understand instructions: “I’ve had a lot of judgment in the past around even being spoken to at the pharmacy when I’m picking up my medication, of like infantilizing.” A participant summarized how it took some time to realize that their social interactions had inherently changed as a result of their disability: “I started to see the way that people actually speak to you and treat you and realized the privilege that I had enjoyed as an articulate, educated, upper middle-class woman was all undercut by becoming disabled.” Mobility aids were particularly significant. “My wheelchair goes into any room before I do, people see it and they start to treat you in certain ways.” Mobility aids also contributed positive outcomes. “The wheelchair is not this big scary thing. It’s an amazing invention and a wonderful tool to allow you to save your energy and use it for the things that matter.” Users of mobility aids acknowledged potential benefits of having a “visible” aspect to their condition relative to others who live with “non-visible” health conditions.

For those with a non-visible illness or complex syndrome, stigma manifested within the healthcare system. Participants spoke of the challenges of negotiating illnesses that had little or no diagnostic proof in imaging or laboratory tests. “Doctors will look at a series of blood tests, and that’s it, they ignore symptoms completely, and if nothing shows up on the bloodwork, they don’t have any other ideas. And they can’t think beyond that.” Participants who were experiencing multiple symptoms affecting multiple body systems struggled in a healthcare system designed around primary care related to common diseases. “I remember my physician saying to me, why do you always come here with 62 things? If he would have been informed about this syndrome, it would have made my journey decades shorter.” Overly narrow areas of specialization required multiple appointments and searches for the provider with appropriate expertise. 

It was common for participants to describe experiences with healthcare providers who assumed that they were misrepresenting or exaggerating their symptoms. Participants noted exacerbation of this experience within the disability, insurance, and/or legal systems within which healthcare providers were perceived as antagonistic and oriented to disprove their illness so that they would not qualify for benefits. “It’s hard for me to distinguish between the professionals that I saw that were related to the insurance stuff and the legal stuff versus the professionals I saw just for me, like trying to get to where I needed to go. It can be extremely dehumanizing not to be believed.” Worse, some physicians said or insinuated that the condition was purely psychological. “He told me that I had a deep-seated psychological condition and until we dealt with that I would never improve. But if I dealt with that, I would be out of my wheelchair and life would be back to normal.” Such iatrogenic suffering left some participants traumatized and reluctant to seek healthcare.

Expertise in Self-Management

Over the years, participants had become experts on their own care, and most had developed a carefully curated network of supportive healthcare providers, while some continued to search for healthcare providers they could trust. “For the first time I had a nurse practitioner helping me and they got all this stuff rolling and diagnosed.” Self-education, self-management, and self-advocacy were important to navigating their conditions. “Do your research, get your education, have your knowledge, and then from that place, decide how you want to move forward on your own journey.” Participants described the importance of healthcare providers who listened and facilitated access to the information they needed to make good choices. “So, if you find something that works, fight like hell to keep it…if the medical appointments are causing you stress, they are making it worse. Don’t go. If your doctor is an [expletive], find a new doctor. Don’t waste your time.” Ultimately, surrounding themselves with trusted, supportive healthcare professionals was integral to how they experienced their illness. 

Participants described learning to present themselves in clinical contexts in ways to optimize the chance of building a positive relationship with healthcare providers so that they could get help. For example, a participant spoke of how they had learned to be a “good” patient. “I was always trying to be the best patient, to present myself as together and believable because I had heard about how people talked about patients with my condition.” Participants described the risks of being labelled by healthcare providers. Several participants were aware they had been labelled “a drug seeker” or as “exhibiting pain behaviours.” One participant found this label had been entered into the medical record after they sought treatment at a second, nearby emergency department when their pain was not resolved. Some participants perceived gender-biases in their care. A male participant spoke of the tension between his public and private faces. “For the most part I have learned to put on a normal and untroubled face. But beneath that face I was really, really severely, not doing good, struggling quite a lot. But when I went to seek assistance, people would see that I was a normal dude who doesn’t appear to be struggling.” Another participant described the challenges they experienced when they were misgendered in clinical settings and how that led to expectations about their behaviour. “I think that comes into the [clinical] rooms a lot, like you shouldn’t be behaving like that just because you’re this gender or you’re that gender.” 

In summary, the health conditions described by these participants were often complex with multiple impacts on their life. Not only had they reconciled losses of identity, but they also endured public stigma and experienced biases within healthcare and social systems.

Implications of Lived Experience on Interpretations of MAID Track 2 Practice

Participants’ experiences over the course of their illness trajectory informed their thoughts about MAID Track 2 policy and practices. This included recommendations for the knowledge and skills needed by MAID assessors, ways to negotiate assessment of suffering, irremediability, and decline, and how MAiD care could consider vulnerability and influences of social determinants of health.

Conducting Assessments

Participants’ familiarity with negotiating healthcare encounters informed their advice to healthcare providers engaged in MAID care. Participants hoped that an assessor would listen and take time to hear and accept their story. For example, a participant recommended an approach such as, “What would you like me to know? Let them present first what they feel is important and there also has to be a little bit of patience or time with that.” Another participant stated, “I really hope that it’s a kind process. I hope that it is respectful, that it happens on the patient’s timeline in the context that they’re happy.” Participants emphasized they would not want the assessment to feel like an interrogation. “Historically in these medical environments they are more clinical and you have to hold back and not cry.” Participants suggested that the assessor’s approach could influence whether applicants might consider alternatives to MAID. “If the person is in a comfortable setting and feeling safe and secure, they might be open to listening to suggestions that the assessor might make. You know, it might be a last opportunity to get them actual help instead of just helping them end it.” In this way, participants saw the assessment as exploratory rather than a determinative process. “It doesn’t mean just because you’re engaging in that assessment that you’re gonna go through with it. It just means you’re exploring it as an option — and it should be available to you to explore. 

Participants wanted assessors to have a high degree of expertise in an applicant’s health condition. “They should know their resources and if they don’t know, they should know where to go.” Participants emphasized that this was particularly important for mental illness, citing frequent lack of knowledge or misinformation. “I think physicians need much more training on just the basics of mental health and mental illnesses.” A number of participants envisioned an interdisciplinary approach to Track 2 MAID assessments. “I think just having a really robust network of people who come from different backgrounds can come together and do like those case reviews as a team and go, okay, we have all these different perspectives and we’re really covering this person’s world in a holistic sense.” 

Although participants suggested it would be a mark of respect for the assessor to have reviewed their medical records, they also recognized the risk of potential bias introduced through medical documentation. “I think, for somebody to say they’ve read my history, that would certainly impress me, but I’d also be very worried about what the hell was in there. It’s like, you know, saying that you read War and Peace to prepare for a meeting, it’s a bit much.” Participants acknowledged that medical records might yield an incomplete picture. For example, one participant stated that “You know, my specialist sees me for 30 minutes once a year and writes these reports that have all kinds of bearing over the rest of my life, right?” The potential for bias in the record was also a concern, and participants described a preference to engage in discussion with the assessor and to have the opportunity to contextualize what was in those records. 

Finally, participants worried that the type of person conducting the assessment might be similar to providers they had frequently encountered in healthcare. “There’s four types of doctors; ones that listen to you, ones that don’t, ones that are good at their job, and ones that aren’t.” One participant had taken proactive steps to understand more about the providers who participate in MAID in their geographic area in case they did decide to apply for MAID in the future. Others raised questions about the training MAID assessors and providers undergo and the ethical requirements of decision-making. 

Considering Social Determinants of Health

Participants spoke to the financial and social pressures of living with chronic illness and discussed whether and how assessors should give these factors consideration in MAID eligibility determinations. For those unable to work full time, finances were a constant and pressing concern. “The fear of poverty that we face, not to mention the costs of being disabled are pretty fricking high. We can understand how that leads people into situations where they can’t get the care that they need.” Another participant expressed concern that the public was unaware of the gaps in support in the system: “The vast majority of the public believe that somehow disabled people are just taken care of — right? That they have somewhere to live and food to eat.” Living with an illness or disability also took a toll on family members. For some participants, spouses and partners were supportive, but for others, it had led to a breakdown in their relationships, leaving them to face their illness alone. “Many of the caregivers leave, because they just can’t handle it.”

Participants indicated clear understanding that financial and social stability is a privilege that yields a measure of freedom that is simply not available to those who are alone and poor. However, participants were internally conflicted about whether or how individual circumstances such as poverty or social isolation should factor into MAID eligibility. One participant suggested that MAID could be an important fallback plan if their own living situation changed. “Let’s say my [spouse] wasn’t here, let’s say my economic situation changed. And let’s say I couldn’t look after myself. Then I may consider it [MAID]. Right?” Another participant suggested that we cannot hold an individual hostage to societal conditions that simply cannot be fixed. “The really hard conversation to have is about what it means to live in poverty and whether poverty is curable...Are we going to fix the political systems of oppression right now? No, we’re not.” Another had a similar reflection on barriers to MAID access on the basis of systemic social problems.

If all these things [poverty and isolation] are influencing the decision, then the problem is not that the person can’t live, the problem is that these things need to change. But unless the assessor has the ability to change those things then it doesn’t change that person’s circumstances. You are still leaving that person in suffering.

In summary, while recognizing the potential for poverty or lack of social supports to influence an applicant’s desire to keep living, participants expressed concern that if these factors were used to find someone ineligible, that would further marginalize them.

Negotiating the Irremediability of Suffering

Participants acknowledged the multi-faceted and subjective nature of suffering and the complexities of access and cost of interventions to relieve suffering as challenges for MAID assessors. These reflected their own experiences of seeking remedies for suffering, many of which had been traumatizing. One participant said: “There’s so many different aspects to suffering: loneliness, not being able to participate in life, and the quality of life that you would like, trying everything and being exhausted. Having to subject yourself to things that don’t work, it all just accumulates.” Participants explored the idea that intolerability could mean quite different things to different people. “You’ll never get away from the fact that people have had different experiences in life. For example, someone who’s come from a background of being sexually trafficked is gonna have a different window of tolerance than someone who grew up without that kind of experience.” 

A concern among participants was having to negotiate with the assessor about whether their attempts to relieve suffering would meet the standard for eligibility. They worried that this could result in the same skepticism and disbelief they had experienced among healthcare providers. “Now I have to prove something again.” One participant suggested that if they were required to seek new remedies to relieve suffering, it could reopen the challenges to access they had already experienced. They emphasized the importance of having someone work alongside them to get additional help.

How are you supposed to figure it out how to navigate these things? There’s 15 different places where you might potentially be able to get support, and all of them have different rules, and all of them have different criteria, and all of them have a different application process, and how the hell is one person supposed to figure it out?

After having worked so hard to establish trust with a supportive healthcare team, participants worried about the implications of being referred by a MAID assessor to an unknown person for additional treatment. Participants expressed the need for continued autonomy with such referrals. “If you agree to meet with another counsellor or psychiatrist then you have to have the capacity to withdraw if it’s not a good fit.”

In reflecting upon how they would evaluate their own suffering, one participant drew a distinction between the perspective they had gained as they managed their symptoms and health over many years. “So an uneducated me, I would not know any better, and I would just be suffering 24/7 and constantly worrying about my symptoms, and constantly focusing on like, oh my God! I’ve got these issues! Have I got stomach cancer like, oh, my God! oh, my God! I have vertigo now.” In contrast, their now “educated self” would do the hard work of seeking approaches to alleviating suffering, while also acknowledging that there could be a threshold at which the suffering just becomes too much.

Finally, participants spoke to the financial barriers to relieving their suffering that went beyond the cost of being disabled. A number of the services that participants identified as helpful, such as specialized clinical counselling, were not covered or had limited coverage through provincial or supplemental healthcare benefits, leaving them without support if they were unable to pay out of pocket. Some treatments were prohibitively expensive. “Because when I get the [treatment], it’s 300 bucks. It’s not covered by MSP [Medical Services Plan].” Participants discussed their awareness of interventions that could relieve symptoms or suffering that they were simply not able to access because of financial or geographical constraints. “I think part of the challenge in a lot of these cases is the question of, is there anything that can be done? And the answer is — not within the current system.”

Understanding Decline

Participants acknowledged the difficulties assessors could have in determining whether they were in a state of irreversible decline, particularly for conditions or symptoms that fluctuate over time. They reflected on the impacts of the ups and downs of their condition. One participant described having a severe and prolonged period of disability for the first time and not knowing whether they would ever recover their capabilities. The experience of recovery provided hope for future episodes. “I learned a new term that was awesome ‘dynamic disability.’ It’s the way that they’re now describing disabilities that have flare ups.” Although this participant took comfort in having a term to describe their experience, these fluctuations took a toll psychologically. Participants described strategies to cope with uncertainty including fighting, giving up, reframing, and acceptance.

I remember having a conversation with my psychologist about I’m going to keep fighting, I’m going to track down every diagnosis, every issue, to try and pinpoint all of these problems and I’m not going to stop until I have answers. That was the approach I had then. Now years later and I don’t know how many specialists later, I’m done. I am barely hanging on. 

Another participant spoke of how they no longer use the term “recovery.” 

Recovery is not a term that I use because two things kind of come to mind: one, the idea that I have an illness versus this is who I am, and you’ve labelled this term of illness upon me. So there’s nothing I’m recovering from, really, I’m simply learning a new way to work with myself and to work around the barriers that society has put in front of me because disability is a social construct, right? 

The cumulative effects of negotiating the healthcare system, social stigma and social constructs of disability, the uncertainties of illness, and rigorous self-management took a toll on participants. Some could envision future circumstances that could lead to seeking MAID, while others could not. Practically, this meant that the person with the lived experience of illness and disability would be the most appropriate to determine when their own decline in capability had reached the point where death through MAID was preferable to living. “A condition is terminal when the person who’s suffering believes that they don’t want to go on trying.” If MAID was not an option at this point, participants speculated that the only other option might be suicide. One participant recognized the inherent challenge this presented for MAID assessors. “How do we ensure that the person is in a state that can’t be improved, or even thinking about how they are living with their condition…But the other half is worry about how long someone has to keep going before they choose suicide.” 

In summary, participants expressed a desire for assessors who listen, are compassionate, knowledgeable, and open to a negotiated interpretation of their medical history and records. Participants acknowledged the inherent challenges of evaluating the impact of social determinants of health, negotiating the irremediability of suffering, and understanding irreversible decline when a person’s natural death is not reasonably foreseeable.

Implications of Lived Experience on Interpretations of MAID Track 2 Policy

Participants provided important insights into aspects of Track 2 MAID that have policy implications. They offered recommendations for the 90-day assessment period, delineated the advantages of MAID as preferrable to suicide, and spoke of the tensions between autonomy and vulnerabilities that exist within imperfect health and social care systems.

The 90-Day Assessment Period

Not all participants understood the purpose of the 90-day assessment period and there were concerns that this time requirement might be too long. “It’s important that the person not be abandoned during that stage because if their level of suffering is quite great then 90 days may be too long.” Another participant suggested that 90 days is nonsensical if “people have been thinking about it for 10 years. What’s 90 days going to do?” Participants had recommendations about how to explain and manage the required assessment period. “It should be framed in a way of curiosity — of I just need to do my due diligence. I don’t mean to prolong your suffering but at the same time I want to make sure that I’m treating you in the best way that I can, and that means getting to know you and every part of your life.” Another participant suggested that this approach could have a therapeutic benefit for the person undergoing the assessment. “There is hope, there is something that I can do. There is a doctor that I found that will actually listen to me, not gaslight me.” 

The 90-day assessment minimum was also viewed as a time to improve the applicant’s quality of life through interventions that might not have been tried or were perceived as higher risk. 

Let’s see what we can do. You’ve got 3 months. Live it. How do we make sure that you can be as happy and pain free as possible…It should be about making those 90 days as wonderful as they possibly can be and if that means permanent morphine, or whatever the good drugs are, then do it, because who cares? They’re gonna die at the end, anyway.

Participants described perceived benefits of an interdisciplinary approach that could reduce suffering and encompass a holistic quality of life approach, inclusive of psychosocial and spiritual aspects of care alongside symptom management. While participants did not use the term “palliative care,” what they described was consistent with a palliative care approach. From a policy standpoint, in many regions Track 2 applicants do not qualify for specialized palliative care. The participants in this study formed a cohesive argument for the applicability of palliative care services for Track 2 MAID applicants, both during the 90-day assessment period and after a finding of eligibility.

MAID versus Suicide

Participants all described clear and distinct differences between MAID and suicide and were in agreement that MAID would typically be preferable to suicide. They compared the trauma, secrecy, and isolation characteristic of suicide to a MAID process as a more open, thoughtful, and measured set of steps. Another participant spoke of the importance of the conversations that are necessary for a MAID application. “MAID requires more thought and an open discussion. Having known several people who were suicidal, they don’t discuss it. Whereas if you are going for MAID, you discuss it and that’s positive.” Participants identified benefits of MAID for other people, particularly family and close friends. “MAID means that I could be open and honest with my family about where I am at. They might still have trauma but it wouldn’t be the same.” A participant spoke of the communal nature of a MAID death as compared to the isolation of a suicide death. “Somebody can have a celebration of life while they’re still alive and the family can be there and they can have food, memories, laugh and cry…that’s a less isolated and lonely avenue to take.” 

Participants spoke of the trauma of being reported and held against one’s will if someone suspects you are suicidal. “We are in this cycle of traumatizing people for simply struggling with a problem that we don’t know how to treat well.” MAID was viewed as a possible way to break that cycle. “If I tell people I have applied for MAID they can’t really do anything about it. They can’t report it because they have already reported themselves. It takes the onus off those around them and it doesn’t leave people feeling bad for not having done something.” A participant suggested that we still know so little about chronic suicidal ideation. “We don’t have a good way to treat passive chronic suicidal ideation. It is an ailment all on its own that deserves time to research and study with support.” The same participant also suggested that, despite the fact that we do not know how to treat chronic suicidality, the ability to determine one’s fate remains a fundamental human right.

Autonomy in an Imperfect System

Participants emphasized the importance of the availability of MAID to controlling their own life course. “We are in our own choose your adventure book you know….and if someone is in pain or suffering and there’s not enough known about how to help them, then let them go with dignity and on their own terms.” But participants also expressed significant concerns about MAID in the context of barriers to access and socioeconomic concerns. The most prevalent examples were inadequacies of care systems and the social safety net and whether these systems issues might influence people to apply for MAID. “If I could say with confidence that our medical system was such that every option had been exhausted, I would be a lot more on board with saying that MAID is a great idea.” “The social safety net…doesn’t exist or it’s grossly insufficient.” A participant who had experience working with disability communities suggested that, while in the beginning they had been comfortable with Track 2 MAID, they had become increasingly uncomfortable as they observed a shift in frequency of people with disabilities who described MAID as a fall-back plan if their life circumstances changed.

Participants often cited high profile media stories to illustrate the reasons for their concerns. Although the veracity of these media reports cannot be substantiated, they nevertheless affected participants’ perspectives about Track 2 MAID. They worried that healthcare providers might suggest MAID for persons with disabilities, even if only implied. “The very worst fear that disabled people have is that their healthcare provider will suggest MAID…. think a disabled life isn’t worth living. And if I say no to them, what kind of healthcare will I get going forward?” Even as participants struggled with the idea that some might choose MAID because of inadequate health and social care systems, they acknowledged that even perfect systems would not negate the need for MAID “Is it realistic to fix the healthcare system to the extent that someone wouldn’t want the option to have MAID? Even if it was amazing and perfect, which it will never be, it will still be an option for some people.”

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.