What We Heard Report
A Public Consultation on Medical Assistance in Dying (MAID)
This report is also available in a simplified, accessible version.
3.0. Perspectives From the Roundtables
In addition to the online questionnaire, the Minister of Justice, the Minister of Health and the Minister of Employment, Workforce Development and Disability Inclusion hosted a series of ten in-person roundtables across the country from January 13 to February 3, 2020 (in Halifax, Montreal, Toronto, Vancouver (x2), Calgary, Winnipeg, Ottawa (x2) and Quebec City). These roundtables allowed the three ministers to hear from over 125 experts and stakeholders, including doctors, nurse practitioners, health regulatory bodies, key health stakeholders, legal experts, the disability community, and civil organizations on key issues. Moreover, the Ministers hosted a separate roundtable focused on receiving specific feedback from Indigenous practitioners and community leaders. Participants expressed a wide range of views on all issues, which are summarized below.
3.1. Eligibility Criteria
a) Legal Clarity
Certain participants emphasized the merits of clarity with respect to MAID's central terms, particularly given its place in the criminal law and the potential consequences of violation. Some participants noted differences in interpretation of such terms as "reasonably foreseeable natural death" (RFND) criterion, "grievous and irremediable," "incurable" and "advanced state of irreversible decline". Some expressed that the removal of RFND could lead to interpretive pressures on other elements of the law, in particular the eligibility criterion requiring that the person be in an advanced state of irreversible decline in capability.
Some stakeholders indicated that the remaining eligibility criteria form a reasonable basis to determine eligibility for MAID, and that it would not be necessary to legislate additional eligibility criteria. Many noted that the legislation should not be overly prescriptive, so as to allow each MAID application to be assessed on a case-by-case basis.
b) Access and practitioner willingness to participate in MAID
Some participants talked about the importance of ensuring widespread access to MAID. In that regard, certain participants warned that a lack of legal clarity or an ethical conflict with any aspect of the regime could reduce the number of practitioners willing to provide MAID.
In addition, some participants speculated that, depending on the specific policy response to the Truchon decision adopted by the government, the number of MAID requests could increase. Participants noted that both the demand for MAID and the availability of practitioners have an impact on access, with some speculating that any increase in pressure could present access challenges, which would need to be addressed by all levels of government.
c) Scope of eligibility
In the context of discussions regarding the potential removal of RFND as an eligibility criterion, some participants raised questions about the impact such a removal would have.
Most participants expressed concerns with expanding MAID eligibility to persons with a mental illness, noting challenges with assessing capacity and uncertain illness trajectory. Many expressed the view that it would be a challenge to implement a safe system for persons with a mental illness, especially given the current eligibility criteria that an illness be incurable (a term not used in the field of mental health) and the subjective nature of determining intolerable suffering.
Despite these concerns, certain participants noted that to exclude persons with a mental illness would be discriminatory. Some felt it was too early to extend MAID eligibility to patients with mental illness alone, and advocated taking additional time to study this particularly complex issue. It was noted that evaluating MAID requests from patients whose sole underlying condition is a mental illness would likely require considerable resources, which may not be available, and may take existing resources away from patients who want to access treatment for their mental illness.
Others expressed concerns with providing MAID to persons with recent traumatic injury or who have recently become disabled. They advocated for a period of MAID ineligibility following their injury to allow the person to adapt to their new circumstances.
Some individuals representing disability rights organizations expressed disappointment with the decision not to appeal Truchon to defend what they saw to be a carefully balanced regime that limited access to MAID to persons nearing the end of life, and prohibited it for everyone else. For some, this included a concern with the removal of RFND, expressing the view that its role is to protect against the societal harm that would result from disability being a reason to terminate life.
Some disability advocates expressed the concern that the removal of RFND would allow a disability or illness to serve as a justification for the termination of life in a way that no other personal characteristic could. Some disability rights organizations argued that legislation that equates significant disability with eligibility to die would be subject to challenge for violation of section 15 of the Canadian Charter of Rights and Freedoms (equality rights). They noted that this area of constitutional vulnerability has not been considered by the courts in any substantive way.
Indigenous individuals and practitioners spoke to unique challenges for MAID in Indigenous communities as a result of historical and intergenerational trauma. Many mentioned the harmful experiences that Indigenous peoples have faced or may continue to face within the healthcare system, such as being subjected to procedures against their will, and ongoing challenges of discriminatory and limited access to culturally safe care. In the context of a broader MAID regime not limited to the end-of-life context, some were concerned that Indigenous patients may choose MAID due to lack of access to adequate healthcare services (e.g., palliative care programs, pain management options, mental health supports) or as a result to external pressures (e.g., lack of housing).
It was also noted a number of times that access to MAID in general can be more limited in remote and northern communities, and some questioned how expanded eligibility or the addition of advance requests would be implemented.
a) Existing safeguards
There was strong support amongst roundtable participants for removing the current requirements for two independent witnesses to the signature forming part of a written request and the 10-day reflection period, noting that these two existing safeguards can cause unnecessary suffering for patients or preclude them from accessing MAID. Some practitioners noted that in most cases, patients have already reflected on MAID for a long time before they formally request it, and that this reflection has likely included discussions with families and their health care team. Others noted that the requirement for two witnesses does not provide any protection, since many patients who do not have access to two independent witnesses will turn to strangers to witness their request. Some roundtable participants noted that it can be difficult for some patients who live in long-term care facilities to find two independent witnesses for their signature.
b) Potential new safeguards
Many practitioners noted that a number of potential new safeguards proposed in the background material (e.g., additional consultations, informing patient of all means available to relieve suffering, involvement of family members) are currently integrated into standard medical practice. Participants highlighted a need for direction (either at the federal level through legislation or at the provincial/territorial level through medical regulatory processes) to support greater consistency around MAID delivery, without impeding access.
There were mixed views on the idea of a safeguard requiring practitioner agreement that reasonable treatments and options to relieve unbearable suffering have been tried. Some felt that the requirement that the treatment be undertaken was contrary to a patient-centered approach to care and infringed on individual autonomy. Others felt it a necessary safeguard to protect persons at risk, especially those with a mental illness.
A number of participants noted that they did not believe that a mandatory psychiatric assessment would be necessary for all MAID requests and that it could impede access, especially in rural, remote and Indigenous communities where access to mental health professionals is limited.
Many participants suggested the introduction of a two-track system of safeguards depending on the type of hypothetical MAID situation (e.g., various advance request situations) or the person's circumstances (e.g., dying versus non-dying, or physical illness versus mental illness). Some disability rights organizations felt this was a good approach to protecting persons who might be vulnerable while not placing additional burden on persons who are dying. Others were of the view that creating additional safeguards for selected medical conditions might be interpreted as a form of stigmatization, depending on the precise nature of the hypothetical approach.
Some Indigenous participants indicated that the best protection or safeguard for Indigenous peoples would be to ensure that appropriate medical care, health services and mental health care are available to them. Many mentioned the importance of cultural safety as a key safeguard for Indigenous people in the MAID context, and the importance of training healthcare providers to deliver culturally safe care.
Some Indigenous participants highlighted the variation in how Indigenous peoples view death and dying and the need for guidance from Elders and spiritual leaders to be able to perform MAID in a way that is culturally safe and appropriate. Some stakeholders noted the difficulties of talking about MAID and advance requests in the North, where many patients speak a different language in which certain MAID-related terms and concepts do not exist.
3.3. Waiver of Final Consent and Advance Requests More Broadly
Many participants were comfortable with implementing advance requests for those who have been assessed and approved for MAID, but who are at risk of losing capacity before MAID is provided. Some argued that these circumstances provide a higher level of certainty for the practitioner. These participants noted that this type of advance request could remedy circumstances where a person suffers through reduced pain medication or fears ineligibility associated with loss of capacity. Some noted the recommendation of Quebec's Expert Group on Incapacity and Medical Aid in Dying, which supports the provision of MAID through advance requests in such circumstances.
Consistent with the CCA expert panel's report on advance requests, many saw more complexities with advance requests following the diagnosis of a capacity-limiting condition, and thought that this scenario required additional reflection, consultation and study.
Several individuals representing disability rights organizations expressed strong concerns with the removal of the requirement for final consent or with any form of advance request, and recommended that the issues be addressed during the Parliamentary Review process. They indicated that there was an insufficient amount of time to dedicate to the topic and the implications of any potential introduction of concepts such as "proxy consent" or substitute decision-maker. Some expressed a concern regarding the perceived potential for substitute decision-making to be permitted in broader circumstances if it is first permitted in the narrower case of a person who is approved for MAID. Concerns with the concept of a substitute decision-maker were raised by some participants other than disability rights organizations, who noted the challenges for persons at risk who do not have close family or friends that could act as a proxy in their best interests.
Some noted their belief that the concept of a broad advance request does not appear to be consistent with the objective of autonomy for the rest of a person's life. They noted that individuals often have difficulty predicting how they will react in the future to certain circumstances (e.g., a dementia patient may not experience the unhappiness they predicted would follow as a result of their illness, a patient's anxiety may decrease as their disease progresses rather than increase, or an effective treatment may become possible).
Some practitioners highlighted their hesitation to follow through with the provision of MAID for a patient who was assessed and approved, but due to a loss of capacity cannot consent immediately prior to the injection. Some argued that an advance consent should not be valid for more than thirty days, after which they would be uncomfortable proceeding with MAID. Clinicians struggled with the ethics around providing MAID in the context of a broader advance request to someone who seems content, or even happy, even though they had previously indicated a wish to receive MAID, or to someone who is resisting the MAID procedure through words or gestures.
a) Access to alternative treatments, supports and services
Many participants emphasized the need for improved health care and social system supports for palliative and disability services to protect against individuals choosing MAID due to the lack of adequate supports. The same applies with respect to mental health and suicide prevention services. Some disability groups noted concerns that individuals may choose MAID not because their suffering cannot be relieved, but because the means to relieve that suffering are not available. Some participants cautioned that any amendments to the MAID legislation should not give preferential access to these services for those requesting MAID to the detriment of those in other circumstances, who also lack access but want help to live and achieve a better quality of life. Some participants noted that individuals make decisions based on their "real world" context, and should not be denied access to MAID because of limited availability of resources.
Some participants mentioned that the Canadian oversight regime could be improved, some noting that the federal monitoring regime does not fulfill a true oversight function. They noted that it should be more transparent, and referenced the Netherlands where the deliberations of the MAID review committee are publicly accessible. A number of practitioners expressed support for the integration of retrospective case reviews and stated that aggregate reporting is not detailed enough and does not provide much benefit to clinicians or regulators. Examples such as Quebec's Commission sur les soins de fin de vie and the Alberta MAID review committee were cited as good models by some.
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