Process and characteristics of MAiD requests

The average age of a patient requesting MAiD was 70 years (range 32–92) and almost half of requests (49%) came from patients over 70 (table 1). Cancer was the primary diagnosis in the majority of cases (81%), followed by neurological disease. Men were slightly more likely to request MAiD (54%) than women (46%.) Of those who requested MAID, 54% received it. For those who did not receive MAiD, the primary reasons were that patients lost capacity during the process (35%), did not meet eligibility criteria (22%) or died from natural causes before the intervention could be provided (19%). In 14% of cases, MAiD was not performed because patients changed their minds.

Quebec legislation stipulates that it is up to the patient to decide whether to discuss MAiD with loved ones; 5% of patients asked that family not be informed of the request, and 81% of patients who received MAiD had family/friends present at the time of death.

Reasons for the MAiD request

The most frequently documented reason for requesting MAiD was suffering, followed by loss of control and loss of autonomy (table 2). On average, three reasons were given per request, although there were as few as one and as many as eight documented. Eighteen per cent of patients indicated a desire to avoid future suffering as opposed to mitigating any present suffering they were experiencing.

Timing of the MAiD request

We analysed the completion time for level of intervention (LOI) forms and palliative care consults in reference to the MAiD request (table 3). LOI forms are placed in the patient’s medical record to guide decision-making and articulate established limits on certain medical interventions. Out of 80 patients who requested MAiD, 29% would still have received potentially life-saving or life-prolonging interventions in case of emergency, including resuscitation in most cases. Nine per cent of patients had a documented LOI of 1 or 2 and 20% of patients had no LOI in the chart at the time of the MAiD request, which normally implies that the patient should be treated as level 1 (full resuscitation and all life-saving interventions should be provided).

The median number of days between a LOI form being completed and the MAiD request was 5 (Table 3). Most LOI forms (42%) were first filled out 1–6 days prior to the MAiD request. Seventeen per cent had the first LOI form filled out on the day of or in the days after the request. Only 5% had an LOI completed more than 100 days prior to the request (figure 1).

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Figure 1

Days between medical aid in dying request and level of intervention form.

Out of 80 requests, 14% never formally consulted palliative care, usually because the patient refused. (Table 3) We were able to identify the specific date on the first palliative care consult for 65 of the remaining 69 cases (figure 2). The median number of days between consulting palliative care and the MAiD request was 5. A third (32%) of palliative care consults were requested 1–6 days before the MAiD request and 25% had palliative care consulted the day of or after they requested MAiD. Only 11% of palliative care consults were requested more than 100 days before the MAiD request (figure 2).

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Figure 2

Days between medical aid in dying request and palliative care consult.

Respect of the 10-day safeguard

Canadian criminal code exemptions for MAiD require a 10-day delay between the signing of the MAiD request form and the provision of MAiD. The law permits the delay to be shortened when two physicians agree that death or loss of capacity is imminent. Of requests made after the 10-day legal safeguard was put in place, 60% of MAiD interventions were provided less than 10 days from the date of request (median 6 days); of those, 30% clearly cited a fear that loss of capacity was imminent as justification. In 22% of these cases, physicians documented the need for earlier MAiD secondary to ‘worsening symptoms’ that may or may not have implied that death or loss of capacity was imminent. In the remaining 48% of cases, the documented rationale was not specifically related to fear of imminent death or loss of capacity (Table 4).

Interpretation

The majority of patients requesting MAiD in our study were over 50 and had a cancer diagnosis. This is consistent with available data for MAiD in the rest of Quebec, Canada and internationally.8–11 The reasons for requesting MAiD were also in keeping with what has been reported elsewhere10–12 and included suffering, a desire to maintain control, decreased quality of life and loss of autonomy. We have chosen to focus our discussion on ethical issues surrounding the timing of MAiD requests with respect to other end-of-life care decisions including discussions about goals of care, consultation of palliative care, withdrawal of life-prolonging interventions and documentation of treatment limitations including limitations on resuscitative measures via LOI forms.

Three years after the legalisation of MAiD in Quebec, the intervention remains ethically controversial. Historically, medical, ethical and legal frameworks have made critical moral distinctions between allowing a person to die versus taking action to hasten their death. In Quebec, professional practice guidelines are indicative of an approach that promotes a degree of moral caution that is distinct from that which is applied to other procedures that result in death. For instance, Quebec guidelines frame MAiD as an ‘exceptional intervention’ of last resort and clinicians are encouraged to explore the full gamut of available end-of-life care options before ‘resorting’ to MAiD.6 Thus, while it is not legally required for patients to try other end-of-life care options in order to be eligible for MAiD, practice guidelines advocate a moderated approach in which other reasonable end-of-life care options have at least been explored. A recent article in this journal by DeMichelis et al highlights two different ways of conceptualising MAiD. One maintains long-standing critical moral distinctions between allowing a person to die versus taking action to hasten their death, the other holds that MAiD is a medical intervention like any other and therefore requires no special ethical or practical considerations. The authors point out that the position one holds with respect to MAiD will have important implications for clinical policy and practice.13 We believe the theoretical conceptualization one adopts in regards to MAiD will influence the importance of the ethical implications of our results.

Despite Quebec’s clinical practice recommendations, some cases in our review did not appear to come after a documented exploration of end-of-life care options and a progressive evolution of goals of care. For instance, 19% of people requesting MAiD were still receiving life-prolonging treatments at the time of their request and 20% of patients either did not have a LOI form filled out at the time of request or had a level of intervention form indicating they still wanted life-prolonging care (9% of requests). The provision of life-prolonging treatments at the end of life (sometimes despite limited medical benefit) is well documented.14–16 On the surface, it may seem paradoxical that almost one in five of the patients who explicitly requested a hastened death in our chart review were still receiving life-prolonging measures at the time. This might be explained by the fact that maintaining these treatments was necessary to maintain eligibility for MAiD (for instance, continuing dialysis treatments to maintain capacity) or was consistent with a patient’s desire to exercise control over their illness and death. Maintaining control is a primary motivating factor in many MAiD requests. It is plausible that shifting suddenly from an aggressive pursuit of curative options to MAiD when treatment options have proven ineffective (eg, tumour has become inoperable, chemotherapy is not working) may be consistent with this desire. However, in other cases we reviewed, the reasons for the continuation of life-prolonging treatments were less apparent. Limiting disproportionately burdensome interventions at the end of life and promoting goals of care consistent with the patient’s values may promote a better quality of life, reduce treatment-related suffering and offer a deeper sense of control which could potentially impact the desire for a hastened death. Greater understanding of (1) the relationship between undergoing potentially burdensome life-prolonging interventions and requests for MAiD and (2) whether this is a common phenomenon is needed.

In the 17% of cases where the MAiD request pre-dated LOI form completion or palliative care consultations, requests for MAiD may have prompted discussion about goals of care raising questions about clinicians’ readiness to instigate end-of-life care conversations. Prior to the introduction of MAiD, the phenomenon of ineffective communication about end-of-life care has been well documented: we know that physicians are often reluctant to tell patients they are dying, that conversations about death occur very late in the illness and that palliative care/hospice options are often not discussed.17–20 This, however, does a disservice to the autonomy of patients. Honest and comprehensive conversations about end-of-life care options are critical to ensuring that the ethical standard of informed consent is met. Delayed discussion potentially jeopardises well-established ethical obligations such as respect for patient preferences, the avoidance of disproportionately burdensome interventions at the end of life and the opportunity for patients to prepare for their death. Delaying open and honest conversations about death and end-of-life care options may, at worst, inadvertently result in patients requesting MAiD prematurely, instead of as an exceptional option of last resort.

One common argument prior to the introduction of MAiD was that good palliative care services would mitigate the desire for medically hastened death by improving the quality of life of patients at the end of life. Others argued that there are some individuals for whom palliative care will never be successful, and that palliative care may have little impact in mitigating the psychological/existential distress that is a primary motivator of many MAiD requests. A large Belgian population-based study examining the relationship between MAiD and palliative care found that palliative care is more likely to be involved in end-of-life care for patients who request euthanasia than for those who do not and that palliative care involvement does not prevent requests for euthanasia or affect whether the request will be honoured.21

Although the Belgian study did not provide any details with respect to the timing of palliative care involvement relative to the euthanasia request, the literature has explored the relationship between the timing of palliative care involvement and life-limiting illness, primarily in the context of cancer care. These studies show that early palliative care consultation results in fewer aggressive medical interventions at the end of life, better documentation of treatment limitations via LOI forms, improved quality of life and fewer depressive symptoms.22–25 WHO cancer care guidelines recommend that palliative care be involved as early as possible, specifically from the time of diagnosis.26 Two papers that explored timing defined ‘late’ palliative care involvement as <30 days24 and <90 days25 before death. Palliative care was consulted in the majority of MAiD requests (85%) captured by our study. However, in 50% of these cases, the palliative care consultation was initiated less than 5 days before or after MAiD was requested. Although 80% of our MAiD requests came from patients with cancer, for the majority, palliative care consultation came ‘late’ in relation to the request for hastened death as per definitions used in the literature.

The late involvement of palliative care in the context of patients who requested MAiD raises questions as to whether timing could have an impact on requests for hastened death by ensuring that benefits such as improved quality of life, reduced depression and so on have an opportunity to be fully realised. We believe the interplay between end-of-life care discussions, palliative care and MAiD deserves greater scrutiny and further research is warranted to explore the following sorts of questions:

• Would palliative care involvement provided earlier in the illness impact requests for MAiD?

• What is the relationship between life-prolonging treatment decisions, LOIs and establishing goals of care and MAiD requests?

• Is there a type of patient for whom palliative care in the context of a MAiD request is more likely to be successful or unsuccessful?

Canadian criminal code exemptions require that a 10-day delay be respected between the request for MAiD and its provision unless death or loss of capacity is imminent. The majority of completed MAiD interventions in our review (60%) were provided before the end of the 10-day delay (median 6 days), and the majority of these were justified on the basis of imminent loss of capacity or worsening of symptoms. Of note, it was not always clear that ‘worsening symptoms’ implied that death was also imminent. The 10-day period of reflection is ethically justified in part by the magnitude and irrevocability of the decision and considered a reasonable safeguard insofar as it is not uncommon for people who request MAiD to change their minds.5 11 In practice, however, the safeguard can place undue burdens on vulnerable patients by requiring them to undergo an extended period of suffering or to refuse treatment that might affect their capacity. MAiD eligibility criteria require that patients retain the capacity to consent up until the end of the 10-day period and the provision of MAiD. Quebec legislation also requires that patients be ‘at the end of life’, a criterion which initially was narrowly interpreted to require that death be relatively imminent (less than a few months). The end-of-life criterion is now more broadly interpreted (1 year or less). One consequence of the 10-day delay that we have observed is that some patients who are at the end of life and experiencing considerable pain and suffering refuse recommended medications such as opioid analgesics in order to maintain capacity to consent. Similar situations have been reported in other provinces as well.11 This is a significant source of ethical concern for clinicians who feel distress in such cases.

The tension between allowing time to ensure the persistence of the MAiD request while also avoiding imposing undue burdens on patients during this waiting period is not easy to resolve. One way to address this tension would be to relax the requirement that full capacity be maintained to retain eligibility. For instance, if a patient is still able to express a meaningful preference with regards to MAiD (a lower threshold such as assent), this may allow patients to still receive recommended treatment for their pain and suffering.

Limitations

Retrospective chart review is reliant on the quality of documentation and does not comprehensively represent the experience of patients at the end of life. Furthermore, other end-of-life care discussions with community care providers are not captured in the hospital medical record. Despite these limitations, the medical chart remains the legal record of what occurred and provides some insight into the timing of MAiD requests within the context of end-of-life care. Finally, only patients who completed a formal request for MAiD were included, and this resulted in a small sample size; data on those who enquired about MAiD but never proceeded to make a formal request were not studied.