Introduction

Medical assistance in dying (MAID), which includes both assisted suicide (lethal medications provided to a patient with the express purpose of causing death) and euthanasia (medications directly administered to a patient with the express purpose of causing death), has been legal in Canada since June 2016, with eligibility criteria initially specified in Bill C-14 [1]. These included the requirement that “natural death has become reasonably foreseeable, taking into account all of their medical circumstances, although a prognosis as to the specific length of time remaining (was) not necessary” [1, p.11]. As a result, many people with chronic health conditions, even those causing very considerable distress and suffering, were not eligible for an assisted death. This criterion was successfully challenged by two plaintiffs in Québec in September 2019 based on violation of their Charter rights [2]. Following this decision, revisions to the federal legislation were made in Bill C-7, which became law in March 2021 [3]. This bill included broadened eligibility for MAID in certain circumstances and additional safeguards in patients who did not have reasonably foreseeable death. Additional safeguards included the requirement of an assessment by a person with expertize in the condition that was causing the person suffering and a longer, 90-day reflection period. Currently, Switzerland, Netherlands, Belgium, Luxembourg, Spain, Columbia, and Canada allow MAID (assisted suicide, euthanasia, or both) in cases where death is not reasonably foreseeable.

Although this change in the law may reduce suffering, it also creates concerns for premature mortality in clinical situations, such as traumatic spinal cord injury (tSCI), in which emotional trauma due to acute decline in functioning might result in impulsive choices to end life in the early days after the injury, or later in those without access to necessary ongoing rehabilitative resources. The incidence of tSCI in Canada has been reported as 1785 cases per year [4]. For persons who survive the initial injury, many are left with activity limitations and participation restrictions that decrease their autonomy and quality of life and may also decrease their life expectancy. A literature review of the topic found that tSCI is associated with an increase in both the rate of suicidal ideation and suicidal mortality (especially in the first few years after injury) and in those who had psychiatric disorders, previous suicide attempts and were unemployed [5]. Younger age at injury as a risk factor for suicide was found in a large British study [6], showing that patients who died by suicide after tSCI were younger at injury and at death and also died sooner after the injury. Declines in adjusted suicide mortality over progressive cohorts in the USA (thought to be due to advancement in accessibility) were found by Cao et al, who also demonstrated a drop in the suicide rate starting in year 7 after the injury [7]. The decline over time of suicide mortality is likely also due to mental and physical adaptation to changed health circumstances allowing the person to maintain or regain autonomy and quality of life. However, successful adaptation is likely affected by access to rehabilitative services, including mobility aids and home modifications, which are not always equally available, especially in rural areas.

Tchajkova, Ethans and Smith (2021) found that individuals living with tSCI felt they would not have been able to make an informed decision about MAID early after injury [8]. These findings align with our previous study, which explored the perspectives of healthcare providers regarding the potential risks to individuals with tSCI of broadening the eligibility criteria for MAID by removing the requirement of reasonably foreseeable natural death [9]. Our previous study concluded that longer mandatory waiting periods after tSCI and eligibility assessments by clinicians familiar with tSCI were important to mitigate the risk of premature death. These results framed our current qualitative exploratory project aiming to explore the perspectives of individuals themselves who were living with tSCI about access to and eligibility for MAID.

Methods

Study design

This was a qualitative exploratory study using an interpretive description approach, involving semi-structured interviews and thematic analysis [10]. Interpretive description is a qualitative approach intended for applied disciplines that moves beyond the description of events into data interpretation using reflective clinical reasoning [11]. The research team included an undergraduate medical student, a research associate, a physiatrist experienced with traumatic spinal cord injuries (tSCI), a nurse with qualitative research experience in MAID and end of life and a psychiatrist with extensive experience in MAID as well as issues related to vulnerable adults.

Setting and participants

We conducted this research in a western Canadian province (Saskatchewan). Prospective participants were informed of the study through flyers in rehabilitation inpatient units and spinal cord injury support networks, augmented by participant networking. Those interested in participating contacted the first author to arrange a time for interviewing and provided informed consent.

Data collection

The authors collaboratively developed an interview guide (Appendix A). We included questions that explored participants’ (1) early responses to a tSCI, (2) thoughts about MAID, and (3) thoughts about cultivating hope in persons with tSCI. Demographic information was collected verbally at the outset of the interview and included sex, education, marital status, age, age at injury, and level of injury. Interviews were conducted using WebEx, ranging from 25 to 50 min, with most lasting ~35 min.

Analysis

Codebook thematic analysis [12] was completed from the transcribed interviews. The transcripts were independently and repeatedly read by two study authors for familiarization, who then inductively coded the data. The codes largely remained at the semantic/surface level and bore reasonable similarities between coders with minor variations. The initial themes were generated by the first two authors and subsequently refined and finalized collaboratively with all authors. Preliminary results were presented at a multi-disciplinary focus group interested in MAID and final results were informed by feedback from this group.

Ethics approval

This study was approved by the University of Saskatchewan Behavioral Research Ethics Board (BEH 1848).

Results

Interviews were conducted with ten persons with a tSCI incurred more than five years ago (seven males, three females; Table 1). Ages ranged from 20s to 50s. Injury severity ranged from complete injury at the high cervical level (C2) resulting in tetraplegia to incomplete injury at the low thoracic level (T10) resulting in paraplegia. Most had sustained their SCI between the ages of 18 and 30, with three having been injured under the age of 18. Education ranged from high school to master’s degree. Participants resided in the two largest cities in Saskatchewan (Saskatoon and Regina). Perspectives of individuals living with tSCI concerning MAID eligibility clustered into the following categories: (1) support for choice, (2) recognizing the unpredictable journey, (3) fostering hope and supporting recovery.

Table 1 Demographics.
Full size table

Support for choice

Participants expressed some support for persons with SCI having access to MAID, generally in support of autonomy and equity. However, they also expressed the belief that a spinal cord injury alone should not be seen as sufficient for eligibility for MAID, as this would risk devaluing the lives of those with a spinal cord injury.

Absolutely, yes. That’s a deeply personal decision. You shouldn’t be able to take that right away from someone else. That’s my opinion. (Participant 9)

It’s a pretty touchy subject [MAID]. I do agree that if people are in a position where their life is just unbearable, and generally it’s due to pain, if there’s no other way around it. (Participant 6)

I think it’s so hard, because saying SCI patients need that right somehow makes, or tells, the world that people with SCI are less than [others] or need to be pitied - or that their life is over, and I don’t want people to look at me like that. I’m tired of that ableist view. But…I think that if you’ve been in your injury a long time, and you’re experiencing the serious medical issues that can come along with that, I think at some point - yeah you should be able to access that. That is your right. (Participant 8)

Recognizing the unpredictable journey

There was a range of suggestions regarding the appropriate time following the injury to access MAID, ranging from the 1 year to at least 7 years post-injury. Participants stated that variability in initial individual responses to injury would suggest that person-centered, individualized decisions would be better than rigid, time-based criteria for access to MAID. Participants mentioned that variables such as age at time of injury, level of injury, available personal supports (e.g., spouse, family, friends), available community supports (e.g., rehabilitation gyms, adapted infrastructure), personal mental health and access to peer support may influence the MAID timeline.

There’s such a vast nuance in the injury itself, and I think that would play into it… I would say - yeah, it’s a tricky one ethically, morally, but for me personally I would probably have no problems introducing that to somebody that had a severe SCI. I would say probably within the first year, I don’t know if it’s going to be instantly. Because obviously the job of medical staff is to save someone’s life, and that’s what they are trained to do. And that’s what they will do immediately. But once you get to the realization of rehab and everything that goes with it. And the patient kind of comes to the knowledge of what they are facing. I would say that’s when they are capable of making a really rational decision of what they are going through. But it’s - timing wise it is difficult. For me, it would be case by case. But in the most serious cases I think, for sure, it should be something that’s talked about. Yeah, I would say in the first year, I think in today’s climate that’s a fair conversation. (Participant 7)

Yeah, it’s tough…I guess just based on my own experience I would say not within the first year…that transition period is obviously really different for everyone, and some people may never get there, but certainly those initial few months post-injury a person’s going to be a lot more vulnerable. More swings in emotion and…so yeah, I would say there needs to be a fairly decent period to allow for someone to go through the adjustment. (Participant 1)

It takes people time to get over humps and to grow and whatnot. So, I would say bare minimum, five years. (Participant 10)

I think, for sure at least five years, maybe even ten. (Participant 4)

…I wouldn’t want it made available until two years, personally. Because I think the first year you are just trying to figure out your situation and figure out what you are capable of, and then the second year is where you can actually start to grow and improve and realize you can still go swimming, or diving, or golfing, or kayaking, or camping… (Participant 3)

Fostering hope and supporting recovery

Hope was discussed as part of the physical and psychological recovery process and as part of the process of regaining a sense of self or identity after injury. Half of the participants mentioned experiences where they found it difficult to maintain hope after their injury. In some cases, the concept of “false” or faint hope was mentioned as being potentially useful.

You definitely need hope. Like even if it’s false hope, hope is hope. When I grew up as a little kid, I wanted to make it to the NHL [National Hockey League]. Well, was that a realistic goal? Probably not. Is it part false hope because your parents are telling you? Probably yes. But, you know, every kid wants to make the NHL. And when people get hurt, they get told they’ll never walk again. And there’s a slight chance—the chance is I think 0.5%—but that chance is actually greater than a kid making it to the NHL. So why should that kid be told they’ll make it to the NHL, when somebody in their late teens or adults are told they can’t walk again? (Participant 5)

Family and friends were mentioned as sources of support, but participants also identified peers as essential in helping to shape hope and goals.

Talking to or hearing stories about others who have similar injuries and have moved forward in positive ways is really important in projecting hope and demonstrating there is life after SCI. There is no substitute for someone who has been there before. (Participant 1)

Well, when they tell you that you’re going to be dependent for the rest of your life, you’re like, well this is pretty shitty. But then, I met a couple people and realized, not really; it doesn’t have to be. The medical professionals don’t know, don’t really know it all. So that’s when I decided I’m not going to be dependent. (Participant 3)

Healthcare providers can also have a strong influence on hope. Attitudes, demeanor, connection, and approach when discussing prognosis can all have an impact.

I think it should be that their [healthcare providers’] role is to not take it [hope] away. (Participant 10)

I think… it’s all about giving optimistic, yet realistic, hope. I think it’s about trying to switch your ableist mind off. I think they [healthcare providers] also need to learn and to know how to let someone down easy. To be like, ‘the likelihood of you doing this is minimal, I’m going to try this with you, but I don’t think it’s going to work and I’m sorry’. It’s better than hearing your nurse out of your room say, ‘She’s not going to be able to do that. I don’t know why we keep trying this, it’s never going to happen’. That really sucks. Just treating us like we’re normal human beings, while still acknowledging the fact that we have a different lived experience, is the most important thing. (Participant 8)

Participants recommended the need for access to expert care to optimally realize desired outcomes such as reintegration and independence. Participants also stressed that care needed to be compassionate, comprehensive, and continuous.

Having an OT, a PT, a mental health expert visit the home and talk to that person saying, ‘Here’s what we can do; here’s what we can set up.’ It’s kind of like a system that needs to be tweaked based on each person’s individual needs and mobility. And of course, that staff team aren’t going to know immediately, but over conversation will figure it out. I think that’s where the most vital aspect of wellbeing is going to reside, in that outpatient setting, where you are tested the most. (Participant 7)

Participants mostly gave positive responses when asked how they were currently doing, even when they were perhaps not consistently achieving their desired goals.

I would say very well now, after that first year of adjustment. I graduated with a [university] degree and was able to obtain employment. I have a very supportive family and friends and a strong spiritual life, so all of those factors pull together, and I feel very positive. (Participant 1)

I’m struggling, I have lots of pain, and I am trying to manage it. But taking more pain medication messes with my body. (Participant 2)

I’m doing very, very well. I am very high-needs, so I depend on a lot of care. And it’s always going to be super frustrating to not have my independence, but there’s obviously so much struggle mentally, physically all the time. But I’ve - you know life goes on. (Participant 10)

Discussion

Because of the recent decision in Canada to remove the criterion of reasonably foreseeable death as a condition for seeking MAID, individuals may now choose to significantly limit their natural remaining lifespan. It is therefore not surprising that clinicians are now struggling with the implications of this new law in the context of acute and chronic spinal cord injury. An important theme arising from our study was the challenging balance between autonomy and perceived risks. Study participants expressed general support for an individual’s autonomy to make decisions regarding their own healthcare, which was consistent with Salter, Ethans, and Smith, who found that issues related to autonomy in decision making on MAID were highly valued [13]. A case series of persons with SCI in Belgium requesting and accessing MAID highlights variability in individual injuries, suffering, and desire for MAID [14].

However, given that spinal cord injuries present in a bimodal distribution with one cluster represented primarily by young adults between the ages of 15 and 29 [15], coupled with the late development of the prefrontal cortex [16, 17] resulting in delayed development of executive functioning with anticipated impact on impulsive self-harm actions [18] there is an understandable concern about the premature choice to end life after a spinal cord injury. A further concern in adolescents is the potential disruption of the key developmental task of developing a coherent identity, which might also result in increased devaluation of the now “damaged” self, with greater willingness to end life. Identity issues were not sufficiently discussed in our interviews, so they are beyond the scope of this study. Nonetheless, identity may be an important topic to explore in the context of views on MAID amongst persons with SCI.

A second theme in this study was the importance of timing when discussing eligibility for MAID, with concerns expressed about the heightened emotional vulnerability of a person experiencing an acute spinal cord injury. This concern particularly focused on suicide and suicidal ideation among individuals with spinal cord injury and the possible impact of early access to MAID on this risk. The percentage of total deaths due to suicide among individuals with SCI has been reported as 5.8–11% [5]. However, the odds of suicide have been shown to decrease by almost 60% after 10 years [7]. Tchajkova, Ethans, and Smith reported that 50% of their participants had suicidal ideation in the first 5 years following their injury [8]. This was linked to concerns about losing independence, inability to achieve lifetime goals and disappointing family and friends. Tchajkova et al. suggested that discussing MAID in the context of SCI should therefore proceed with caution.

The power of hope (even false hope) in the context of loss and mourning after a spinal cord injury was identified as another theme of this study. Hope was seen as a strong motivating factor that drives perseverance in the face of a catastrophic life event such as spinal cord injury. The potential negative impact and influence of early discussions about MAID on an individual who is simultaneously drawing deeply from personal reserves of resilience and hope is tangible and concerning.

There is tremendous value in involving interdisciplinary team members, peer supports, and family in all aspects of decision making, including those related to MAID. As with other aspects of the journey of spinal cord injury, consideration of MAID must rely on informed decision-making based on a comprehensive understanding of all options and possible outcomes. Specialized interdisciplinary teams (including psychiatrists and psychologists) with experience in delivering spinal cord injury rehabilitation have a significant role in educating individuals about outcomes after spinal cord injury and can facilitate functional gains to achieve independence. The role of emotional influences on the process of decision-making needs to be carefully explored, with final decisions made by evaluating all information (including knowledge about adaptation over time) as rationally and as clearly as possible. Tchajkova et al. described “cognitive reframing” as a process that occurs when individuals gain insight into functional abilities over a period post-injury that is informed through access to rehabilitation and exposure to a lived perspective through peer mentoring [8].

Safeguards put in place to protect vulnerable adults when requesting MAID include the requirement that they have capacity to make medical decisions (decisional capacity). However, although curricula are in the process of development, there is currently no mandatory or standardized training across the country for MAID assessors to determine capacity or emotional readiness to make these decisions. MAID assessors and providers come from a wide variety of backgrounds, including but not limited to: nurse practitioners, family physicians, anesthetists, palliative care physicians, psychiatrists, and others. The influence of emotions such as demoralization, fear, and anxiety on decision-making is often difficult to identify and may not be adequately considered when deciding eligibility for MAID. This is especially concerning in healthcare providers without significant experience or training in mental health or those lacking experience with individuals who adapt over time to changes in function due to tSCI.

Conclusion

The decision in Canada to remove reasonably foreseeable death as a requirement for seeking MAID has made the journey for those with acute traumatic spinal cord more complex. Decision-making in the early stages of injury may be adversely influenced by feelings of hopelessness and loss leading to a poor understanding of the potential of a fulfilling, productive, and enriching life with spinal cord injury. Interdisciplinary teams and mental health professionals are an important resource in making an informed decision. It is also crucial to involve individuals with lived experience with tSCI, as they can personally and believably demonstrate adaptation and recovery and affirm quality of life over time. Their role as peers can help reimagine and re-frame hope in those who are just starting on their journey of recovery. Definitive recommendations on the duration of a suitable period of reflection after tSCI before accessing MAID cannot be made from these results, as participants themselves have noted the variability in personal experiences. However, spontaneous motor recovery typically plateaus at 12–18 months post-injury (with the extent greatest for incomplete lesions) [19], suggesting that the first 2 years should be considered a window of opportunity for improved physical outcomes and reflection after a tSCI rather than a time for making end-of-life decisions. Even more importantly, emotional recovery is affected by personal characteristics, level of support and availability of health resources, resulting in timelines for stability that are even more difficult to predict. To balance autonomy with the protection of those in vulnerable emotional states, we would therefore recommend a suitable reflection period before making MAID available to persons with tSCI.