What We Heard Report
A Public Consultation on Medical Assistance in Dying (MAID)

March 2020

What We Heard

During January and early February 2020, the Government of Canada launched consultations on medical assistance in dying (MAID). The online consultation, which was a short questionnaire, was open to all members of the public from the morning of Monday, January 13th through to midnight on Monday, January 27th. Consultations with experts and stakeholders also took place via a series of ten roundtables held across the country between Monday, January 13th and Monday, February 3rd.

This What We Heard report summarizes the findings from these consultations.

1.0 Introduction

MAID became legal in Canada in June 2016. Canada's Criminal Code now exempts doctors and nurse practitioners who provide, or help to provide, MAID.

"Medical assistance in dying" includes:

  • the use of medication by a physician or nurse practitioner to directly cause a person's death at their request
  • the prescription or provision of medication by a physician or nurse practitioner that a person can use to cause their own death

The law currently sets out eligibility criteria for those who wish to apply for MAID. It also sets out safeguards that doctors and nurse practitioners must follow before providing MAID, in particular to make sure that the patient requesting MAID is fully informed and has given their consent freely.

Visit the Government of Canada's medical assistance in dying webpage for more information on:

  • Eligibility criteria
  • Process for obtaining MAID
  • Roles of the provinces and territories
  • How Health Canada monitors and reports on MAID
  • Independent reviews
  • How Health Canada supports palliative and end-of-life care

Evolution of MAID in Canada

The MAID legislation (former Bill C-14), enacted in 2016, created an end-of-life MAID regime. Its core policy was to give Canadians who were suffering intolerably during the dying process, the choice to have a medically assisted death.

Following the enactment of the MAID legislation, the Government of Canada asked the Council of Canadian Academies (CCA) to study three complex issues: requests for MAID by mature minors, advance requests, and requests where mental illness is the sole underlying medical condition. The reports and a summary are available on the CCA's website.

The 2016 MAID legislation required the creation of a monitoring regime. Regulations setting out what information practitioners are required to provide in relation to a MAID written request came into effect in November 2018. A first report of the federal monitoring regime data is expected in spring 2020. In the meantime, Health Canada has published four interim reports based on data provided voluntarily by the provinces and territories. All are available on Health Canada's website.

As legalizing MAID was a significant step for Canada, the 2016 MAID legislation also required a parliamentary review of the law five years after it was passed. This review will provide the opportunity to hear from Canadians about how MAID is working, and to see if any changes should be made. It is expected that this review will start in 2020.

Finally, since the enactment of the MAID legislation, litigation challenging the MAID regime was initiated in British Columbia, Ontario, Quebec and Saskatchewan. The British Columbia (Lamb) and Quebec (Truchon) cases challenged the MAID law on the basis that its eligibility criteria violated the Canadian Charter of Rights and Freedoms because they were too restrictive. The Ontario (Foley) and Saskatchewan (Katzenback) cases also allege that the MAID law violates the Charter, but on the basis that its safeguards are insufficient to protect Canadians who are offered MAID instead of adequate support services and other means to relieve suffering.

Context and objectives of the consultations

On September 11, 2019, the Superior Court of Québec found that it was unconstitutional to limit access to MAID to people nearing the end of life (Truchon v. Attorney General of Canada). The case was brought by two persons living with disabilities, Mr. Truchon, who has lived with cerebral palsy since birth, and Ms. Gladu, who lives with paralysis and severe scoliosis as a result of poliomyelitis.

Practitioners who assessed them were of the view that they met all eligibility criteria for MAID, with the exception of nearing the end of life. The court declared the "reasonable foreseeability of natural death" criterion in the federal Criminal Code, as well as the "end-of-life" criterion in Quebec's provincial law on medical assistance in dying, to be unconstitutional.

While this ruling only applies in the province of Quebec, the Government of Canada has accepted the ruling and has committed to changing the MAID law for the whole country. This means that the MAID law will change from a regime that aims to enable people to have a peaceful death rather than a painful or prolonged dying process, to a regime that offers the choice of MAID to relieve intolerable suffering, regardless of proximity to natural death.

In light of the Government's decision to change Canada's MAID regime and to inform the way forward, these consultations sought Canadians' views on the need for additional safeguards in a regime that will no longer be limited to dying persons, and on advance requests for MAID.

2.0 Results from the Online Questionnaire

Members of the public could complete the questionnaire online, or could download a PDF version and send a completed version by email or through regular mail.

In total, 300,140 questionnaires were received.

Over the two weeks that the questionnaire was open, officials monitored submissions to ensure that the system was not compromised by automated responses (for example, by "bots" etc.). One set of automated responses (approximately 1,000) was rejected. There were also several instances where the same set of responses was submitted online, by email or by regular mail multiple times (from four to 63 times) by an individual (rather than a bot). These duplicate responses were easily detected and are not included in the total. In addition, any submissions received online, by email, or postmarked in the regular mail after midnight of January 27th were not included.

Results are presented by question.

Demographics

Province or territory

In Section A, respondents were asked to identify their province or territory of residence. The largest number of responses came from Ontario (35.1%, 105,460), followed by British Columbia (22.8%, 68,410), and Alberta (12.0%, 35,988).

Table 1: Province or Territory

Province or Territory

Number of Responses

Percentage of Total

Newfoundland and Labrador

5,021

1.7%

Nova Scotia

19,097

6.4%

Prince Edward Island

2,204

0.7%

New Brunswick

7,984

2.7%

Quebec

27,580

9.2%

Ontario

105,460

35.1%

Manitoba

10,563

3.5%

Saskatchewan

10,826

3.6%

Alberta

35,988

12.0%

British Columbia

68,410

22.8%

Yukon

856

0.3%

Northwest Territories

474

0.2%

Nunavut

113

0.0%

No Response

5,564

1.9%

TOTAL

300,140

100%

Urban or rural residence

Respondents were also asked if they lived in an urban or a rural location. A large majority of respondents (70.7%, 212,117) indicated that they lived in an urban area compared to a rural area (27.3%, 82,000).

Table 2: Urban or Rural Location

Urban or Rural Location

Number of Responses

Percentage of Total

Urban

212,117

70.7%

Rural

82,000

27.3%

No response

6,022

2.0%

TOTAL

300,140

100%

Language of submission (English or French)

Language was determined by the version of the survey completed. There were some instances where French comments were provided in an English questionnaire. At a national level,the majority of respondents (91.9%, 275,741) responded in English compared to French (8.1%, 24,220). There were also 153 questionnaires submitted in Chinese. An organization translated the original questionnaire into Chinese and then made paper copies available to a group of Chinese speakers. After officials reviewed the translation to ensure accuracy, these submissions were included. In addition, 26 responses were received in la langue des signes québécoise (LSQ) or American Sign Language (ASL) and transcribed into French.

Table 3: Language of Submission – All of Canada

Language

Number of Responses

Percentage of Total

English

275,741

91.9%

French

24,220

8.1%

Chinese (Traditional)

153

<0.1%

LSQ/ASL

26

<0.1%

TOTAL

300,140

100%

In Quebec, the majority of responses were in French(22,285, 80.9%) compared to responses in English (5,269, 19.1%).

Table 4: Language of Submission - Quebec

Language

Number of Responses

Percentage of Total

English

5.269

19.1%

French

22,285

80.8%

LSQ/ASL

26

<0.1%

TOTAL

27,580

100%

 

Eligibility for medical assistance in dying

Section B laid out the existing MAID eligibility criteria for reference purposes.

Safeguards to protect against misuse or abuse of medical assistance in dying

In Section C of the questionnaire, there were several questions around safeguards which are reproduced below, followed by theresponses.

C.1. Do you think the current safeguards would prevent abuse, pressure or other kinds of misuse of MAID after eligibility is broadened to people whose deaths are not reasonably foreseeable?

 

Table 5: Safeguards to protect against misuse or abuse of MAID

Response

Number of Responses

Percentage of Total

Yes

219,281

73.1%

No

74,781

24.9%

No Response

6,108

2.0%

TOTAL

300,140

100%

C.2. The following list contains potential safeguards that are not currently in place in Canada, as well as potential revisions to some existing safeguards. These are safeguards that apply under the MAID laws of some other countries.

In your opinion, when a person is not at a point wheretheir natural death has become reasonably foreseeable, how important is it to require the following safeguards for those who meet all other eligibility criteria for MAID?

Table 6: Additional Safeguards

Safeguard

Not important at all
(n, %)

Slightly important

(n, %)

Important

 

(n, %)

Fairly important

(n, %)

Very important

(n, %)

No opinion

(n, %)

No Response

(n, %)

A. A different reflection period (currently a 10-day reflection period) between the submission of a person's written request for MAID and receiving MAID

62,605
20.9%

40,862
13.6%

48,877
16.3%

27,834
16.3%

103,294
34.4%

12,331
4.1%

4,327
1.4%

B. MAID should be available only when the practitioner and the patient both agree that reasonable treatments and options to relieve the person's suffering have be entried without significantly improving the person's situation

48,326
16.1%

45,750
15.2%

52,580
17.5%

26,835
8.9%

115,430
38.5%

6,166
2.1%

5,053
1.7%

C. A mandatory psychological or psychiatric assessment to evaluate the person's capacity to consent to receiving MAID

52,435
17.5%

47,964
16.0%

52,026
17.3%

26,619
8.9%

111,729
37.2%

5,157
1.7%

4,210
1.4%

D. Making sure the person requesting MAID is aware of all the means available to potentially relieve their suffering, including health and social support services (for example counseling, disability support, palliative care)

10,751
3.6%

17,921
6.0%

58,327
19.4%

21,473
7.2%

185,880
61.9%

1,893
0.6%

3,895
1.3%

E. Mandatory consultation with an expert in the person's medical condition and circumstances (for example a gerontologist, psychiatrist, or social worker), in addition to the already mandatory 2 medical assessments

83,371
27.8%

50,166
16.7%

41,228
13.7%

26,709
8.9%

89,070
29.7%

5,512
1.8%

4,084
1.4%

F. Retrospective review of MAID cases by a committee to verify that the eligibility criteria and safeguards were satisfied and in place

56,605
18.9%

47,618
15.9%

59,382
19.8%

27,660
9.2%

96,009
32.0%

8,370
2.8%

4,496
1.5%

G. Special training andtools to assist physicians and nurse practitioners to assess areas of potential vulnerability (for example mental health issues, or potential outside pressures or influences)

10,577
3.5%

21,955
7.3%

61,023
20.3%

31,254
10.4%

167,799
55.9%

3,270
1.1%

4,262
1.4%

H. An obligation for the physician and nurse practitioner to offer to discuss their patient's situation with their family members or loved ones with the patient's consent

36,027
12.0%

36,443
12.1%

60,546
20.2%

36,781
12.3%

120,224
40.1%

5,626
1.9%

4,493
1.5%

C.3. Comments

In the questionnaire, there were three text boxes that could be completed with up to 500 character responses.

The first text box was question C.3. which read: "Do you have any other comments you want to share about possible safeguards for people who are eligible for MAID, but not at the end of life?"

Almost 32% or 95,473 respondents provided a comment for this question. The contents of these responses are discussed by theme in the section Summary of Comments.

Table 7: Number of Respondents Providing Comments in C.3.

 

Number of Responses

Percentage of Total

Comments added

95,473

31.8%

No Response

204,667

68.2%

TOTAL

300,140

100%

Advance Requests for MAID

In Section D, two scenarios were described to respondents.These are reproduced below followed by responses.

D.1. Imagine that a person makes a request for MAID, is found to be eligible, and is awaiting the procedure. A few days before theprocedure, the person loses the capacity to make health care decisions, and cannot provide final consent immediately before the procedure. In your opinion,should a physician or nurse practitioner be allowed to provide MAID to a person in these circumstances?

Table 8: Advance Request for MAID, Scenario D.1.

Response

Number of Responses

Percentage of Total

Yes

235,852

78.6%

No

59,174

19.7%

No Response

5,114

1.7%

TOTAL

300,140

100%

D.2. Imagine that a person is diagnosed with a medical illness that, over time, will affect their mind and take away their decision-making capacity, such as Alzheimer's disease. The person prepares adocument that says they consent to receive MAID if specific circumstances arise at a later date, after they are no longer able to consent. In your opinion, should a physician or nurse practitioner be allowed to provide MAID to a person in this situation once the circumstances in their document have arisen and they otherwise meet the MAID criteria, even if they can no longer consent?

Table 9: Advance Request for MAID, Scenario D.2.

Response

Number of Responses

Percentage of Total

Yes

238,431

79.4%

No

57,350

19.1%

No Response

4,359

1.5%

TOTAL

300,140

100%

D.3. Comments

Question D.3. read: "Do you have any other comments you want to share about allowing MAID to be provided to a person who has an advance request but is not able to consent to MAID at the time of the procedure?"

Almost 32% or 95,608 respondents provided a comment for this question. The contents of these responses are discussed by theme in the section below.

Table 10: Number of Respondents Providing Comments in D3

 

Number of Responses

Percentage of Total

Comments added

95,608

31.9%

No Response

204,532

68.1%

TOTAL

300,140

100%

Any Additional Comments

The last question, E.1. invited respondents to provide any additional comments that were not covered in the earlier questions. Twenty-one percent or 63,492 respondents provided a comment. The contents of these responses are discussed by theme in the section below.

Table 11: Number of Respondents Providing Additional Comments in E.3.

 

Number of Responses

Percentage of Total

Response

63,492

21.2%

No Response

236,648

78.8%

TOTAL

300,140

100%

Summary of Comments

There were 254,573 comments in 136,144 questionnaires. A comment had to have more than five characters to be considered. Due to the extremely large number of text responses, data analysts used algorithms to organize and sort the responses by theme. Keywords and phrases were identified from a preliminary review of responses and then other responses were matched to these by relevance. Researchers then read and analysed the comments.

Eight themes were identified: safeguards, MAID through advance requests, the right to die, concerns regarding mental illness and mature minors, opposition to MAID, personal experiences, the role of family, and other specific concerns. A summary of the comments for each of the eight themes is provided below.

Theme 1 – Safeguards

There was no comment box specifically on the reflection period (see Question C.2.A.). For this reason, most comments on this question were included in the E.3 comment box. Most respondents who provided comments were not in favour of making additional assessments a requirement, as there was wide concern that these would result in increased delays and prolong suffering, especially for patients in rural and remote areas.

Concerns were expressed that this requirement would add an increased barrier for patients living in rural and remote areas, in terms of travel costs and health impacts of travel on these patients.

Suggestions for accessible, rapid consultations with medical practitioners were put forward by some respondents, such as using video conferencing, telehealth services, or travelling practitioners, for example. Some suggested that the expert assessment be required to be completed within the 10-day waiting period, or a similarly short timeframe.

Views varied regarding the length of the reflection period. Some respondents felt the 10- day waiting period is sufficient, while others wanted to see the period shortened/eliminated in particular circumstances (e.g., imminent death, a person in distress with no chance for improvement), to reduce the impact on those suffering. Others felt the reflection time should be extended, particularly for those who do not have a terminal or rapidly deteriorating condition.

Theme 2 - MAID through advance requests

Respondents expressed support for advance requests. Out of all those who submitted a questionnaire, there was clear majority support that advance requests for MAID be an option for Canadians: 78.6% responded "yes" to Question D.1. and 79.4% responded yes to Question D.2.

Some suggested safeguards such as regular reviews/renewals of the request or regular follow-up by medical practitioners, to determine if there are new questions, concerns, or decisions, and/or confirm that the advance request remains in accordance with the patient's wishes, should they lose the ability to provide final consent.

Many respondents felt that patients, especially those with neurodegenerative diseases and irreversible conditions, should not have to confirm their consent immediately before receiving MAID. Many pointed out that the anticipation of declining health is the reason that an advance request would be made. If patients reach the point where they are unable to consent, those may be the very health conditions they wanted to avoid living through.

Respondents underscored the right to withdraw consent at any time for those capable of giving final consent. Some respondents pointed out that if the person is no longer capable of providing consent, they are similarly not capable of withdrawing consent, and the request made when they were of sound mind should stand.

Some expressed concerns that people may choose to have the MAID procedure earlier than they would have liked for fear of not having the ability to give consent at the time of the procedure. Others likened advance requests to a will or a Do Not Resuscitate (DNR) order and felt that it is unethical to disregard clear prior consent and make patients endure further suffering.

Some suggested procedural requirements for advance requests, such as the person naming a person who can make the decision for them should they lose their ability to consent.

In comments for D.3., personal stories described family members who had illnesses such as dementia (including Alzheimer's and other forms), ALS, Huntington's, and Parkinson's. Comparisons were made to DNR orders and organ donation. Some concerns were expressed about the role of family members---whether they should or should not be able to apply for MAID on a patient's behalf, or to invalidate the wishes of a patient.

Many felt that it is important for people to have the option to make an advance request. They felt that if a person went through the steps to make an advance request and then lost the capacity to give final consent due to their condition deteriorating, they should be able to proceed, as long as they are not expressing fear or resistance immediately prior to the procedure.

Theme 3 – The right to die

The majority of responses focused on the right of the individual to choose when to die, no matter the circumstances. There were many references to how we treat our pets – that we do so with more compassion than we treat our fellow human beings. There were calls for less "red tape" and to make the process as simple and accessible as possible. It is essential, many argued, to honour the wishes of the patient and grant them dignity in dying.

Theme 4 - Concerns with expanding eligibility for MAID

Comments under this theme included concerns with expanding eligibility for MAID to those who suffer from mental illness and mature minors.

A majority of those who provided comments were not in favour of extending MAID to people who suffer from mental illness. They expressed concerns that people with mental health issues, such as depression, may feel that MAID is their only option, when effective therapies could lead to full recovery. Rather than extending the option to terminate lives, many respondents felt that the focus should be on increasing preventative measures, supports, resources, and intensive treatment for people with mental health issues, as well as increasing resources for people with physical disabilities. Some noted that people with mental illness, and those with physical and intellectual disabilities, are especially vulnerable to manipulation and abuse, or may feel like a burden on family, friends or the healthcare system, and suggested different and specific qualifying criteria for these groups.

In contrast, others felt that people suffering from mental illness should be eligible for MAID in certain circumstances (e.g., chronic, severe, disabling, treatment-resistant disorders). Some noted that mental health conditions can result in suffering that is as painful as physical disorders and not respond to treatment, resulting in people making dangerous suicide attempts rather than ending their life in a safe way.

Most respondents did not support MAID being extended to minors due to their state of development and the risk that they would make an irreversible decision and die before their time. Others were in support of extending MAID to minors in cases of terminal and incurable diseases, with proper safeguards in place.

Theme 5 - Opposition to MAID

Officials considered "form responses" to be those that were submitted individually, but had the exact same response for each question. Based on text searches of comments, there were thousands of form responses that expressed opposition to MAID in general.

Comments included that: people who are sick must be encouraged to embrace life, not seek out suicide; an advance request would make it impossible for a patient to change their mind; and MAID is a euphemism for murder.

As well, comments made it clear that governments should be funding better palliative care instead of offering MAID. Further concerns were expressed that doctors and nurses can decide on MAID without adequate oversight.

While some respondents felt that the end-of-life criterion for administering MAID protects vulnerable individuals with disabilities and mental illnesses, others felt that it restricts an individual's access to MAID and traps them in intolerable suffering. There were also concerns that MAID would become a cheaper alternative to treating individuals with chronic illnesses and disabilities. Others were of the view that religious objections to MAID have no place in secular society, and should not be pushed upon those who do not share the same religious beliefs. Many also expressed their disappointment with the consultation questions, stating that it forced respondents to endorse MAID in order to debate its expansion.

Responses other than form responses also expressed opposition to MAID.

The focus of this theme was on the importance of human life and the value it has to offer. The majority of responses that fell into this theme were in opposition to MAID. Many respondents noted that life has intrinsic value and that MAID is a violation of the sanctity of life. In addition to the preservation of life's intrinsic value, many Canadians agreed with the words of this respondent that, "life is a gift of God, and God is the giver and taker of life". Further, many respondents stated that MAID is a way for the government to alleviate its financial obligations by supporting a way to expedite the deaths of the elderly, disabled, or sick individuals who represent a financial burden on the state.

MAID was seen as a slippery slope for many respondents, who state that it opens the door to the government legalizing the act of ending someone's life when it is deemed convenient for the state. Along the same lines, many respondents noted that it is immoral for the government to force nurses, doctors, and other health care professionals to perform MAID as it is putting them in a situation where they are forced to end someone's life. Ultimately, responses in this cluster emphasize that life is precious, and that it is not the government or medical professionals who are able to determine when life should come to an end.

Theme 6 - Personal experiences

This theme includes personal stories from thousands of Canadians who shared their first-hand experiences with MAID. In many of these stories, the respondents' loved ones did not have access to MAID, either because this occurred before it was legal in Canada, or because they were unable to give consent. Many commented on the poor quality of life for those suffering, especially those experiencing extreme chronic pain. Some respondents commented on having witnessed MAID with people surrounded by friends and family and the compassion and dignity that it afforded to the patient. There were also many comments about patients stopping their pain medication in order to clear their minds to give the final consent. A majority of these respondents clearly expressed that MAID needs to be expanded to cover people who are not lucid at the end of life.

Theme 7 – The role of family, caregivers and loved ones

This theme was about the role of family members, caregivers and loved ones. From responses to Questions D1 and D2, where almost 80% answered in support of expanding MAID to allow for advance requests or consent, there were many different comments about the role of those who are close to the patient and may be involved in the patient's care and support. For example, many people commented that family members must be involved.

Another perspective was that a patient's decisions must be respected, regardless of what family members want or believe. There were many suggestions of procedures to facilitate MAID for persons who are not able to consent such as legally binding documents, video-recording requests, a panel of medical experts, and allowing people to appoint a trusted decision-maker (through a Power of Attorney, proxy decision-maker).

Theme 8 - Specific concerns about MAID

There was a clear demand for increased support and funding for better long-term, palliative, and mental health care. Individuals felt that with better social support, counselling, and disability support, individuals could have an improved quality of life, thereby reducing the need for MAID.

Many also indicated concern for the mental health of health care professionals who would be administering MAID, stating that their cultural, religious, and personal values should be respected. While some individuals expressed that forcing doctors and nurses to partake in MAID is a violation of their rights, others indicated that publicly funded hospitals should not refuse to provide the services the public needs.

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.

3.2 Safeguards

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.

3.4 Miscellaneous

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.

b) Oversight

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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