Journal of Palliative Care & Medicine
Open Access

Maid; Existential suffering; Palliative care

On June 17, 2016, the Canadian Parliament passed legislation on medical assistance in dying (hereinafter, maid) that allows eligible Canadian adults to request maid and decriminalized the act of maid for clinicians. Unlike other jurisdictions such as Switzerland, terminally ill patients in Canada are legally eligible to opt for an assisted death to alleviate intolerable ES. In this commentary, we contend that the recent changes in the Canadian EOL care landscape and legislation may have inadvertently created the conditions for terminally ill patients to request an assisted death in order to alleviate ES prior to having opportunities to optimize the remediation of their existential distress [1-5].

Previous studies have described common attributes of dying persons’ ES as loss of autonomy and dignity, meaninglessness, social isolation, fear of being a burden on others, hopelessness and the uncertainty of the future. While the 2022 Fourth Annual Report Medical Assistance in Dying in Canada cites that emotional distress, ES, fear or anxiety represented 3.3% as a source of suffering by individuals requesting maid, other more common reasons were loss of the ability to engage in meaningful activities (86.3%), loss of dignity (53.1%), perceived burden on family, friends or caregivers (35.3%) and isolation or loneliness (17.1%). Other Canadian studies report the loss of autonomy and loss of dignity and the desire to avoid being a burden on others, as well as future suffering as common reasons for dying persons to request a medically assisted death in Ontario and Quebec. Moreover, Downer, et al. reports that recipients of maid in Ontario identified with physical (99.5%) and psychologic suffering (96.4%) prior to receiving the procedure. Although Downer, et al.’s study findings indicate that a high percent of assisted deaths was to address refractory physical pain, psychological suffering in part, was also a common reason for dying persons to opt for a hastened death in Ontario. The totality of these results not only suggests that there is a lack of consensus about how to define ES, but existential distress is also likely partially responsible for dying persons to request maid [<a href="#6" title="6">6</a>].

According to the 2022 annual maid report, maid practitioners reported that the majority of maid recipients (77.6%) had received palliative care. Of those who received palliative care, 49.9% received it for a month or more. Of the maid recipients who did not receive palliative care (19.6%), 87.5% were reported to have had access to these services. Downer, et al.’s retrospective cohort study also concluded that three-quarters of maid recipients in Ontario were followed by a palliative care clinician prior to death (74.4%). However, these data need to be contextualized in order to understand the nature of the palliative supports patients actually received. For example, a retrospective chart analysis by Seller, et al.’s indicated that while 64% of dying persons from Quebec requesting maid received palliative care consults, the median number of days between consults and the maid request was only 5 days. Additionally, a third (32%) of palliative care consults were requested between 1-6 days before a maid request was received and 25% occurred the day of or after maid was requested by patients. The short time frame between the consult and the request for maid should give us pause to wonder if sufficient time had passed to truly explore palliative measures, assess the irremediability of patient suffering and is suggestive that palliative care consults are not primarily about suffering remediation, but rather the beginning of the process of accessing maid. Given that we know that palliative care is more effective when started earlier in the illness trajectory, what we really need to know is what kind of palliation was offered and when, not whether the patient requesting maid was seen by a palliative care clinician. In Canada, we need more data on the nature of palliative care consults prior to maid requests and whether palliation ought to have begun earlier and how many of the consults involved offers treatment for ES explicitly under conditions acceptable to patients [<a href="#7" title="7">7</a>].

In addition, ongoing research on how suffering is assessed by clinicians when requests for maid are being evaluated indicate that EOL care clinicians do often accept at face value dying persons’ accounts of suffering as intolerable because of the belief in the subjective nature of suffering, particularly when the illness trajectory is familiar to the clinician, and that significant suffering is associated with that kind of illness. According to Broom, the point where terminal patients consider maid is often, if not normally, far before the point of medical futility, which raises questions about how physicians assess the irremediability criteria, how often patients are refusing what could be effective treatment and why and how much the fear of losing competency in the future is at play. Hence, while the intent of the decriminalization of MAiD was partly to revitalize therapeutic relations between dying persons and clinicians around suffering at the end of life, it is certainly possible that maid conversations primarily focus on ending suffering rather than engaging in conversations about the understanding or amelioration of suffering [<a href="#13" title="13">13</a>-<a href="#14" title="14">14</a>].

Last, there are several Canadian publications that support study participants’ claims that there are regional disparities to comprehensive palliative care services. For example, while estimates suggest that 62% to 89% of dying persons could benefit from palliative care, data confirms that a significant proportion of Canadians do not receive palliative care services. According to the Canadian institute for health information, less than one-sixth (15%) of dying persons receive palliative care home services, one in five (22%) terminal residents receive palliative care at a long-term facility and 25% receive palliative care in a hospital. We also know that in Ontario, there are income-related barriers to receiving palliative care: By income, terminal patients living in the poorest neighborhoods in Ontario were the least likely to receive home palliative care visits from a doctor (29.4%), compared with patients in the richest neighborhoods (40.2%). From the same report, we know that most Ontarians are receiving palliative care only in the month before their deaths, even though we know earlier palliative care can lead to better quality of life throughout the entire dying process from the time of being diagnosed with a life-threatening illness. Furthermore, Brown, et al. conducted a retrospective cohort study, finding that only a small percentage of Ontario residents receive palliative care specialty consultations before they pass away (11.1%).

Based on the above evidence, we think it reasonable to speculate that in Canada in some cases, we may have prematurely offered a ‘irrevocable’ solution to relieve dying persons’ ES before attempting to remove barriers to mitigating EOL ES and before attempting to create the conditions for therapeutic ES conversations to take place. This is not to say that offering maid for ES is always inappropriateindeed far from it. But rather, we may have put the cart before the horse.

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