What We Heard Report
A Public Consultation on Medical Assistance in Dying (MAID)
March 2020
This report is also available in a simplified, accessible version.
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).
| 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).
| 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.
| 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% |
Language of Submission - Quebec
In Quebec, the majority of responses were in French(22,285, 80.9%) compared to responses in English (5,269, 19.1%).
| 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?
| 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?
| 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.
| 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?
| 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?
| 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.
| 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.
| 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.
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